It's only about 3 inches tall and light brown. It has my name on it and unlimited refills. And I've never been so scared of anything in my life. I've put off starting Tamoxifen for exactly two months. Though there seem to be just as many women who handle the symptoms fine as those who can't tolerate it, just the thought of popping it is making me physically sick. My head is pounding, my stomach is spinning and I feel like I might pass out. I'm so angry at myself for allowing a little white pill to have this much power over me.
I feel great. A few pounds heavier than when we started this journey, but all-in-all I am a happy girl. I'm so happy that I could easily forget that I just had cancer. I would LOVE to forget it. What I wouldn't give to take my painful, rock-hard saline filled sacks and move on. It will never be that way, though. Once cancer has touched you, you spend the rest of your life chasing it.
I experienced some of this after Daddy died- some fear and paranoia- so you would think I would be able to handle this with more grace. I was okay until my last visit to the oncologist. She explained that my 8% risk of recurrence is a risk of what the cancer world calls "mets." That there is some little breast cancer cell floating around in my body trying to attach itself to something else. There's an 8% chance that will happen, and if it happens I will die. I'm scared shitless.
I'm a Christian, so it's not so much that I'm afraid of dying. It's that I can't bear the thought of missing any of my girls lives and not being here to help them raise their babies. Then there are the thoughts of seeing what Daddy went through and how I would just about rather jump from the top of a tall building than subject anyone I love to that. Yes, there's a 92% chance that it will never happen, but the oncologist also said that there was less than a 1% chance of this happening to me- and it happened. None of us is holding the same hand in this card game.
When I heard the doctor's explanation I felt bad for not starting the meds sooner. I pictured this little white pill running around in my body chasing cancer cells. I should be thankful that I have it, and I am, but I know that as soon as I pop that first pill I'm on my way to a decade- A DECADE- of chasing cancer. Every night before bed I'll have a little white reminder that I'd better do this right. I know I can't be alone because I read a study that said that a large percentage of women stop taking it early because they feel great and the pill reminds them of the cancer. Of course those women have a higher recurrence rate. I don't want to be a part of anymore statistics.
Sometimes, like tonight, I feel incredibly alone. I know I'm not. I had an amazing team rallying around me over the last few months. But now the big surgery's over. The cancer's "out." I appear to have boobs. I didn't lose my hair. To most of the world, I'm pretty much okay. I don't want or deserve a pity party because I do feel wonderful considering the circumstances, but sometimes this is still a lonely club. Nobody can take the pill for me. Nobody will understand my anger and discouragement if it makes me feel like shit, nor will they fully understand my relief if it doesn't. I'm just in limbo now. That young mom that just had a double mastectomy, but they got it all and she's all better now. Only she's not. Not really.
Sunday, December 1, 2013
Thursday, October 24, 2013
Instaboob guilt
I was so touched this week when one of the readers of this blog posted to ask me what the results were at my doctor's visit. Usually I treat this blog somewhat as a diary. My only hope being that someday, some other terrified 34-year-old mother of three whose world is crashing down will find it and somehow find a measure of peace. I am so grateful for the kind thoughts from all of you.
So, I went to that doctor's appointment to get the results of what is called an Oncotype DX test. The test gauges your likelihood of recurrence of cancer (I believe for the next 10 years). You can score anywhere from 1-100. Anything below 18 is low risk and it has been determined that chemo is more detrimental than helpful for this group. 18-31 is intermediate risk. The rest are high risk. I thought for sure I would be intermediate risk. Up to that point, my cancer had been so strange, unusual and unpredictable. I figured it would continue to confound me and put me in a position to make a difficult decision. It surprised me. My score was a 13. You may notice I didn't say, "my score was a 13!!!"
Although it was one of the most exciting moments of my life (that absolutely required a follow-up fruity alcoholic drink, huge bowl of pasta and some retail therapy), I found myself experiencing an interesting emotion on the way home. Guilt. Lots of guilt. I couldn't think of anything except all of the amazing women (and even some men) who have not been as lucky as me. I had spent the last six weeks dreading with every fiber of my being the day my hair would begin to fall out. I cried when the girls would worry out loud about how "different" I would look. I laid awake at night trying to prepare myself for how to deal with constant nausea and still be a mommy. I stared at the checkbook wondering how we would pay the bills if I continued to miss work. Suddenly, all of that was gone. But for so many women, it's not gone. Would they resent me? Is my battle a lesser one because this? Can I even share stories with them? What else will go wrong since I have caught such a lucky break?
Four days later, I had my stitches out and one more drain. One additional drain is STILL in and is the bane of my existence, but they said that I'm healing perfectly. They were able to do my first "fill." I was warned that it would be something like the Barbie doll of the '60's that grew breasts when you pumped her arm. They used a magnet to find my port, shoved a needle in like I was a basketball and started pumping. Sure enough- Instaboob (I'm trademarking that). While it was by far the most disconcerting experience I ever hope to have, I was so thankful to have something that made me look like a woman to the outside. I will probably have to do it two or three more times before I can have my permanent implants put in. And in case you're wondering, the answer is YES. They will keep doing fills until I say "stop."
I still have waves of guilt, but going back to work has helped distract me. I would sit at home wavering back and forth between resenting my circumstances and then feeling guilty for doing it. Going back to work allowed me to return to an identity other than "cancer patient with no boobs." This week, though, I think I've reached some new stage. For reading's sake, I'll call it the, "Oh God, I'm going to die," stage. My self-analyzing says that over the last six weeks I've been in "fight" mode. Between planning and doctor's visits I didn't have time to think about the future ramifications of this disease. It only really hit me the night I tried to sleep in bed for the first time. I laid there in the dark (with no TV to distract me), and the silence reminded me that I could be dead. One change in my recent circumstances- a cancelled doctor's appointment, an inexperienced medical intern doing the breast exams, a less concerned midwife- I would be one of those even rarer cases. The ones that make you shake your head and hide from the fear that it could be you.
Nighttime is when numbers creep into my head. I start analyzing all of the percentages (95% estrogen receptor positive, 82% progesterone receptor positive, 13 Oncotype, 8% recurrence) and then I start remembering Daddy. I have these flashbacks of Daddy in his last two weeks. Bloated, yellow and distant. Then in his last two days- unable to walk and finally unable to speak. I become terrified that it will be me. I knew before that it COULD happen. We all know that, in theory, our bodies can turn on us. For those of us who have seen it, we are even more acutely aware of that possibility. But now it has actually happened. Estrogen made me grow a tumor (an additional 5 cm. of it still in my duct) that could have killed me. It could come back. It could have spread without us knowing it. I remember asking the chemo nurses how they avoid becoming paranoid. They told me that every day one of them "has cancer." So will I live in fear of cancer for the rest of my life? My body turned on me once- will it do it again?
Now I have been given several decisions to make regarding my future treatment. My loyal oncologist who treated my father recommended (without question or debate) 5 or maybe 10 years of Tamoxifen, which he claims 90% of women "tolerate well." He wants me to start it "yesterday" and have a hysterectomy before the end of the year. Primarily he wants my ovaries out, but after five years on Tamoxifen you are at an increased risk of uterine cancer, so he said they "might as well" take out my uterus while they're in there. My oncological surgeon's PA was shocked by this and asked me to get a second opinion. I met again with the humorless German female oncologist who first treated me. She gave me two options: Tamoxifen for 10 years or an oophorectomy (removal of my ovaries) followed by 5 years of Arimidex (which she claimed is "better" than Tamoxifen). She said that the risk of uterine cancer from Tamoxifen is 1 in 1000 and none of them have been fatal, so she would not recommend that more extreme surgery and said that it has a four week recovery time (compared to 2-3 days with the oophorectomy). She told me she would choose the second option if it were her.
Some people might appreciate these options. The problem is that it gives me the illusion that I have some control over my ultimate fate. I feel like I'm choosing between not doing enough and getting cancer again (Tamoxifen alone) or going overboard and becoming a menopausal monster at age 34 (the oophorectomy will immediately put me into menopause).
As a Christian, I know that my future is in God's hands, but He has now put this decision in front of me- and it's a life or death decision. So I have been researching until my fingers bleed, hoping that something or someone will make the answers clear to me. I have given myself permission to wait and think for just a little while, but waiting even a little while scares me. Because I am premenopausal I think I have decided that I will try Tamoxifen first instead of Arimidex, but I will wait until I have adjusted to my "new normal." I want to be feeling my best and be prepared for whatever side effects may head my way. I know that, ultimately, I must have the surgery to minimize my risk. If I don't, and something comes back, I will never forgive myself. I'm just not ready to commit, though. I've lost so much of what makes me a woman already- I'm just not ready to give anything else up quite yet. I'll decide and commit before Christmas and I think I'll have the surgery by my birthday in May. I wrote it down so I'm committed. I'm also writing this down- I'm going to run a half marathon in 2014. It's something that I have said for years I would never, and could never, do. I've never run farther than five miles. On the other hand, until last year I had never seen someone I love die. I didn't think I could survive it, but I did. Until this year, I had never had cancer invade my body. I didn't think I could make it through, but I have. I assume I'm incapable of running 13.1 miles next year, but I'm thinking maybe I could be wrong, because obviously I've been wrong before. Now I just have to prove it to myself.
So, I went to that doctor's appointment to get the results of what is called an Oncotype DX test. The test gauges your likelihood of recurrence of cancer (I believe for the next 10 years). You can score anywhere from 1-100. Anything below 18 is low risk and it has been determined that chemo is more detrimental than helpful for this group. 18-31 is intermediate risk. The rest are high risk. I thought for sure I would be intermediate risk. Up to that point, my cancer had been so strange, unusual and unpredictable. I figured it would continue to confound me and put me in a position to make a difficult decision. It surprised me. My score was a 13. You may notice I didn't say, "my score was a 13!!!"
Although it was one of the most exciting moments of my life (that absolutely required a follow-up fruity alcoholic drink, huge bowl of pasta and some retail therapy), I found myself experiencing an interesting emotion on the way home. Guilt. Lots of guilt. I couldn't think of anything except all of the amazing women (and even some men) who have not been as lucky as me. I had spent the last six weeks dreading with every fiber of my being the day my hair would begin to fall out. I cried when the girls would worry out loud about how "different" I would look. I laid awake at night trying to prepare myself for how to deal with constant nausea and still be a mommy. I stared at the checkbook wondering how we would pay the bills if I continued to miss work. Suddenly, all of that was gone. But for so many women, it's not gone. Would they resent me? Is my battle a lesser one because this? Can I even share stories with them? What else will go wrong since I have caught such a lucky break?
Four days later, I had my stitches out and one more drain. One additional drain is STILL in and is the bane of my existence, but they said that I'm healing perfectly. They were able to do my first "fill." I was warned that it would be something like the Barbie doll of the '60's that grew breasts when you pumped her arm. They used a magnet to find my port, shoved a needle in like I was a basketball and started pumping. Sure enough- Instaboob (I'm trademarking that). While it was by far the most disconcerting experience I ever hope to have, I was so thankful to have something that made me look like a woman to the outside. I will probably have to do it two or three more times before I can have my permanent implants put in. And in case you're wondering, the answer is YES. They will keep doing fills until I say "stop."
I still have waves of guilt, but going back to work has helped distract me. I would sit at home wavering back and forth between resenting my circumstances and then feeling guilty for doing it. Going back to work allowed me to return to an identity other than "cancer patient with no boobs." This week, though, I think I've reached some new stage. For reading's sake, I'll call it the, "Oh God, I'm going to die," stage. My self-analyzing says that over the last six weeks I've been in "fight" mode. Between planning and doctor's visits I didn't have time to think about the future ramifications of this disease. It only really hit me the night I tried to sleep in bed for the first time. I laid there in the dark (with no TV to distract me), and the silence reminded me that I could be dead. One change in my recent circumstances- a cancelled doctor's appointment, an inexperienced medical intern doing the breast exams, a less concerned midwife- I would be one of those even rarer cases. The ones that make you shake your head and hide from the fear that it could be you.
Nighttime is when numbers creep into my head. I start analyzing all of the percentages (95% estrogen receptor positive, 82% progesterone receptor positive, 13 Oncotype, 8% recurrence) and then I start remembering Daddy. I have these flashbacks of Daddy in his last two weeks. Bloated, yellow and distant. Then in his last two days- unable to walk and finally unable to speak. I become terrified that it will be me. I knew before that it COULD happen. We all know that, in theory, our bodies can turn on us. For those of us who have seen it, we are even more acutely aware of that possibility. But now it has actually happened. Estrogen made me grow a tumor (an additional 5 cm. of it still in my duct) that could have killed me. It could come back. It could have spread without us knowing it. I remember asking the chemo nurses how they avoid becoming paranoid. They told me that every day one of them "has cancer." So will I live in fear of cancer for the rest of my life? My body turned on me once- will it do it again?
Now I have been given several decisions to make regarding my future treatment. My loyal oncologist who treated my father recommended (without question or debate) 5 or maybe 10 years of Tamoxifen, which he claims 90% of women "tolerate well." He wants me to start it "yesterday" and have a hysterectomy before the end of the year. Primarily he wants my ovaries out, but after five years on Tamoxifen you are at an increased risk of uterine cancer, so he said they "might as well" take out my uterus while they're in there. My oncological surgeon's PA was shocked by this and asked me to get a second opinion. I met again with the humorless German female oncologist who first treated me. She gave me two options: Tamoxifen for 10 years or an oophorectomy (removal of my ovaries) followed by 5 years of Arimidex (which she claimed is "better" than Tamoxifen). She said that the risk of uterine cancer from Tamoxifen is 1 in 1000 and none of them have been fatal, so she would not recommend that more extreme surgery and said that it has a four week recovery time (compared to 2-3 days with the oophorectomy). She told me she would choose the second option if it were her.
Some people might appreciate these options. The problem is that it gives me the illusion that I have some control over my ultimate fate. I feel like I'm choosing between not doing enough and getting cancer again (Tamoxifen alone) or going overboard and becoming a menopausal monster at age 34 (the oophorectomy will immediately put me into menopause).
As a Christian, I know that my future is in God's hands, but He has now put this decision in front of me- and it's a life or death decision. So I have been researching until my fingers bleed, hoping that something or someone will make the answers clear to me. I have given myself permission to wait and think for just a little while, but waiting even a little while scares me. Because I am premenopausal I think I have decided that I will try Tamoxifen first instead of Arimidex, but I will wait until I have adjusted to my "new normal." I want to be feeling my best and be prepared for whatever side effects may head my way. I know that, ultimately, I must have the surgery to minimize my risk. If I don't, and something comes back, I will never forgive myself. I'm just not ready to commit, though. I've lost so much of what makes me a woman already- I'm just not ready to give anything else up quite yet. I'll decide and commit before Christmas and I think I'll have the surgery by my birthday in May. I wrote it down so I'm committed. I'm also writing this down- I'm going to run a half marathon in 2014. It's something that I have said for years I would never, and could never, do. I've never run farther than five miles. On the other hand, until last year I had never seen someone I love die. I didn't think I could survive it, but I did. Until this year, I had never had cancer invade my body. I didn't think I could make it through, but I have. I assume I'm incapable of running 13.1 miles next year, but I'm thinking maybe I could be wrong, because obviously I've been wrong before. Now I just have to prove it to myself.
Tuesday, October 8, 2013
My Self
I know I wrote about perspective yesterday. I know I'm supposed to look back at those words and live them. Lead my girls by example. But right now I feel worthless. I feel angry, empty, lost and worthless. I know we all have worth, and I know that I don't deserve anything better than anyone else, I'm just telling you how I feel.
I keep trying as hard as I can. I got dressed and did my hair today. I went out to the mobile mammography unit to hold someone else's hand while she had her first mammogram in decades. The fresh air felt so good. Yesterday I looked at my chest for the first time without crying. I decided to tell myself to be proud of those lines. Those deep, primitive looking wounds that will surely remain there for the rest of my life. I nodded my head in agreement when everyone told me how lucky I was that "they got it early." I talked about how sure I am that I'll be back to work next week. Back to life. Moving on with my "new normal."
By the time I got home three hours later, my body hurt so badly that I could barely walk into the house. I slept the afternoon away and could barely sit up to kiss my sweet babies when they got home. I can't get their drinks at dinner, I can't pack their lunches, I can't help them with their homework, I can't pick them up and hold them when they get hurt, I can't take them to get their hair cut for picture day. I can't help them clean their rooms, I can't hug my husband, I can't snuggle with my puppy, I can't even bend over to tie my own damn shoe. And it hurts. It doesn't matter how many pills I pop, there are hard plastic shells where I once had breasts and they are being drained by 12 inch tubes and sometimes it hurts so much. Sometimes it feels like fire. If I brush my chest with my hand, it feels like I've just jammed a knife in my exposed muscle. Sometimes I'll even have "ghost pains" like an amputee. I feel like a burden. Like a shell of myself. I feel like a terrible Mom and wife.
While I was sleeping half of the day away my oncologist called. The message said they have the results of the test that will gauge the likelihood of my cancer reoccurring. I had been so caught up in recovering from this surgery and moving on with my life that I think I put the idea of chemo right out of my head. The message said that the doctor needs to discuss the results of the test with me in person on Monday. I think I know what that means. I could be wrong, but you know how I feel about hope, so I'm not going to waste my time "hoping." I know that the reality of my cancer is that most women have to follow up with some chemo, I knew in my head that I'll be going into menopause by Christmas, but I was so proud to have faced my fears over the last week that I completely forgot that my battle may only be half over.
Just as I was beginning to force myself to adjust to the new me, I remembered that I don't even know who the 'new me' is. I don't know how to accept the fact that just as I was beginning to like myself, my self is being ripped away from me- cut out of me- poisoned out of me. I don't know myself at all right now. I don't know how to do this. I know I can. I know I have to. But I don't want to.
I keep trying as hard as I can. I got dressed and did my hair today. I went out to the mobile mammography unit to hold someone else's hand while she had her first mammogram in decades. The fresh air felt so good. Yesterday I looked at my chest for the first time without crying. I decided to tell myself to be proud of those lines. Those deep, primitive looking wounds that will surely remain there for the rest of my life. I nodded my head in agreement when everyone told me how lucky I was that "they got it early." I talked about how sure I am that I'll be back to work next week. Back to life. Moving on with my "new normal."
By the time I got home three hours later, my body hurt so badly that I could barely walk into the house. I slept the afternoon away and could barely sit up to kiss my sweet babies when they got home. I can't get their drinks at dinner, I can't pack their lunches, I can't help them with their homework, I can't pick them up and hold them when they get hurt, I can't take them to get their hair cut for picture day. I can't help them clean their rooms, I can't hug my husband, I can't snuggle with my puppy, I can't even bend over to tie my own damn shoe. And it hurts. It doesn't matter how many pills I pop, there are hard plastic shells where I once had breasts and they are being drained by 12 inch tubes and sometimes it hurts so much. Sometimes it feels like fire. If I brush my chest with my hand, it feels like I've just jammed a knife in my exposed muscle. Sometimes I'll even have "ghost pains" like an amputee. I feel like a burden. Like a shell of myself. I feel like a terrible Mom and wife.
While I was sleeping half of the day away my oncologist called. The message said they have the results of the test that will gauge the likelihood of my cancer reoccurring. I had been so caught up in recovering from this surgery and moving on with my life that I think I put the idea of chemo right out of my head. The message said that the doctor needs to discuss the results of the test with me in person on Monday. I think I know what that means. I could be wrong, but you know how I feel about hope, so I'm not going to waste my time "hoping." I know that the reality of my cancer is that most women have to follow up with some chemo, I knew in my head that I'll be going into menopause by Christmas, but I was so proud to have faced my fears over the last week that I completely forgot that my battle may only be half over.
Just as I was beginning to force myself to adjust to the new me, I remembered that I don't even know who the 'new me' is. I don't know how to accept the fact that just as I was beginning to like myself, my self is being ripped away from me- cut out of me- poisoned out of me. I don't know myself at all right now. I don't know how to do this. I know I can. I know I have to. But I don't want to.
Monday, October 7, 2013
Perspective
When we went for a second surgical opinion, I wasn't expecting much. I held a secret hope that they would tell me I was the perfect candidate for the muscle-sparing TRAM flap (aka tummy tuck) surgery. In reality, though, I was just so tired of being touched that I spent the 3-hour drive thinking about how I was probably wasting my time. Either way, someone would eventually be getting this crap out of my body. Perspective.
The female surgeon was very nice and efficient. I felt comforted by the fact that she actually had breasts. . and children. It's like the difference between an OB who has a vagina and one who doesn't. At least if I had to be here, I had finally found someone who could relate to what I was feeling. Perspective.
As she went through the physical portion of the exam, she pressed on my stomach and moved her hands back and forth. I noticed immediately that it hurt. I thought maybe that Subway breakfast sandwich I inhaled on the way over was going to come right back up. She looked at me and said, "what's this?" I said, "Ham and egg white on flat bread?" She said it was a "suspicious mass."
For those of you who don't know, my Daddy had abdominal pain 22 months ago. They sent him for an abdominal CT scan and found the suspicious mass that took him away from us nine months later. So when the surgeon looked at her nurse and said, "get her downstairs for an abdominal CT scan right now," the floor fell out from underneath me. She said she didn't know what it was and that we would investigate. I tried to mumble something about how a suspicious abdominal mass killed my Daddy. Neither John or I remember much else from the meeting. She agreed with most of the other opinions. I wouldn't be a TRAM flap candidate, but the healing time for that would be so much worse anyway, she said. She seemed to think that I would be excited that I would be allowed to keep my nipples. And that there is a 20% chance of necrosis of the nipple. Yeah- that means it dies and falls off- so sexy. Then she told me that it would be at least another month before they could do my surgery. Suddenly Mr. Magoo was looking a little better. Perspective.
We listened as long as we could before we told her that all we wanted to do was get the CT scan over. It was like we were in some alternate universe where they didn't understand that they were causing us the greatest degree of mental distress possible. I wanted to scream at them and run.
They walked us downstairs where a nice man in his 50's who reminded me of my Daddy told me that I would have to drink 44 ounces of nuclear fruit punch and sit around for 90 minutes thinking about dying before he could even do the scan. I wandered around the hospital shop looking at wigs and with every sip I wondered if I would even have the chance to wear one. Perspective.
As we sat, we never uttered a single word. We thought I was dying. I wondered if I would get longer than nine months. John wondered what he would do without me. I wondered why God was punishing me.
After about two hours, they took me back and injected me with some hot radioactive dye. As I started to cry, I explained to the nice man that it was my 10th anniversary and I thought I was dying like my Daddy. He told me he would make sure I wouldn't have to wait until Monday for my results.
While we sat back in the waiting room, two middle-aged women with breast cancer sat and talked loudly about how horrible chemo is and how their bodies went to shit once they stopped producing estrogen. If I hadn't been so scared that I was dying, I would have kicked both of them right in the head. At that moment I felt so abandoned by God- almost as if Satan himself was laughing at how terrified I was.
After half an hour the nice man brought the phone in with my doctor on the other end. I held my breath as she told me that I had an anomaly that I was born with. It's called a horseshoe kidney. My kidneys are fused together in a horseshoe shape and are slightly enlarged, but they are functioning perfectly and it's completely harmless. Are you f*ing kidding me?! We ran out of that hospital as quickly as we could. We sat in the car and watched two young hipsters get into their Prius with their Starbucks Vente Latte's and we cussed at them just for fun. We sat in our sound proof car and told them how they better appreciate their perfect f*ing yuppy cancer-free life with no mysterious stomach masses and perfect f*ing boobs.
At our over-priced anniversary meal, John looked at me with a huge smile and said, "this is the best anniversary ever." I stared at him with a very clear "what the F are you talking about- this is the WORST anniversary I could ever have imagined," look. "It's the best anniversary ever because you're not dying," he said, "and I can't make it without you." Perspective.
The female surgeon was very nice and efficient. I felt comforted by the fact that she actually had breasts. . and children. It's like the difference between an OB who has a vagina and one who doesn't. At least if I had to be here, I had finally found someone who could relate to what I was feeling. Perspective.
As she went through the physical portion of the exam, she pressed on my stomach and moved her hands back and forth. I noticed immediately that it hurt. I thought maybe that Subway breakfast sandwich I inhaled on the way over was going to come right back up. She looked at me and said, "what's this?" I said, "Ham and egg white on flat bread?" She said it was a "suspicious mass."
For those of you who don't know, my Daddy had abdominal pain 22 months ago. They sent him for an abdominal CT scan and found the suspicious mass that took him away from us nine months later. So when the surgeon looked at her nurse and said, "get her downstairs for an abdominal CT scan right now," the floor fell out from underneath me. She said she didn't know what it was and that we would investigate. I tried to mumble something about how a suspicious abdominal mass killed my Daddy. Neither John or I remember much else from the meeting. She agreed with most of the other opinions. I wouldn't be a TRAM flap candidate, but the healing time for that would be so much worse anyway, she said. She seemed to think that I would be excited that I would be allowed to keep my nipples. And that there is a 20% chance of necrosis of the nipple. Yeah- that means it dies and falls off- so sexy. Then she told me that it would be at least another month before they could do my surgery. Suddenly Mr. Magoo was looking a little better. Perspective.
We listened as long as we could before we told her that all we wanted to do was get the CT scan over. It was like we were in some alternate universe where they didn't understand that they were causing us the greatest degree of mental distress possible. I wanted to scream at them and run.
They walked us downstairs where a nice man in his 50's who reminded me of my Daddy told me that I would have to drink 44 ounces of nuclear fruit punch and sit around for 90 minutes thinking about dying before he could even do the scan. I wandered around the hospital shop looking at wigs and with every sip I wondered if I would even have the chance to wear one. Perspective.
As we sat, we never uttered a single word. We thought I was dying. I wondered if I would get longer than nine months. John wondered what he would do without me. I wondered why God was punishing me.
After about two hours, they took me back and injected me with some hot radioactive dye. As I started to cry, I explained to the nice man that it was my 10th anniversary and I thought I was dying like my Daddy. He told me he would make sure I wouldn't have to wait until Monday for my results.
While we sat back in the waiting room, two middle-aged women with breast cancer sat and talked loudly about how horrible chemo is and how their bodies went to shit once they stopped producing estrogen. If I hadn't been so scared that I was dying, I would have kicked both of them right in the head. At that moment I felt so abandoned by God- almost as if Satan himself was laughing at how terrified I was.
After half an hour the nice man brought the phone in with my doctor on the other end. I held my breath as she told me that I had an anomaly that I was born with. It's called a horseshoe kidney. My kidneys are fused together in a horseshoe shape and are slightly enlarged, but they are functioning perfectly and it's completely harmless. Are you f*ing kidding me?! We ran out of that hospital as quickly as we could. We sat in the car and watched two young hipsters get into their Prius with their Starbucks Vente Latte's and we cussed at them just for fun. We sat in our sound proof car and told them how they better appreciate their perfect f*ing yuppy cancer-free life with no mysterious stomach masses and perfect f*ing boobs.
At our over-priced anniversary meal, John looked at me with a huge smile and said, "this is the best anniversary ever." I stared at him with a very clear "what the F are you talking about- this is the WORST anniversary I could ever have imagined," look. "It's the best anniversary ever because you're not dying," he said, "and I can't make it without you." Perspective.
Wednesday, September 18, 2013
Cancer positives
Man, oh, man cancer is exhausting. I want to whine about it so bad, but I remind myself of the women fighting a stage 4 who will never be able to relax- who have no end to the doctor's appointments, the long drives, the theories, the blood draws, the medical bills, the questions. Still, I'm tired.
We had a second opinion on Monday from the wonderful man who was my Daddy's oncologist. He started the visit by asking me what the hell I was doing there and telling me how shocked he was to see me. I was so relieved when he told me that he shared my feeling that there must be a link to Daddy's cancer and that he would be looking for studies we could help with. I learned during that visit that my cancer started growing about two years ago. You know what that means, don't you? That I actually probably had cancer even before we knew about Daddy's. That is SO creepy. All of those hours in that chemo center and I had no idea that could be my recliner in a year. Part of me almost wishes that we had known, that Daddy and I could have shared our journey on an even deeper level, but I know that the stress of that would not have helped him. I'll settle for the thought that when I meet him again in heaven I'll have one hell of a story for him.
Dr. H also said that he will not make a determination on chemo until I have the Oncotype DX test. This is a relatively new technology that will determine my risk of reoccurance. He went so far as to give me a 70/30 chance that I WON'T need chemo. I think this freaked DH out. Chemo is associated with killing the monster and it seems that he's afraid that this technology could be wrong. For now we have to wait for pathology to come back on the tumor. The doc also said that the Tamoxifen is a must for 5-10 years and he wants me to have a hysterectomy. Right now I'm not terribly bothered by that idea. It will eliminate my chances of ovarian and uterine cancer so I know it's a necessary evil. I wonder, though, how I will feel when at age 34 I have virtually nothing of my own that makes me a woman. He is sending us to meet with a surgeon in a bigger city this week. We will explore whether her hospital performs any of the other "flap" surgeries and if I would be a candidate for them. I'm not holding my breath, but it should be interesting.
I'm in a place now that leaves me feeling a little numb. I'm somewhere between being resigned to the idea of this life change and terrified of what lies ahead. Over the last couple of weeks, though, I have been making note of the good things about having cancer. Yep, they exist.
-You never know how much you're loved until you're sick. I wouldn't wish this on anyone, but if everyone could have the opportunity to feel as loved as I feel now, the world would be a much better place.
-The little things become much less important. The only things that really matter right now are my health and the well being of my family. Isn't that how we should all try to view life?
-Cancer forces you to learn how to say 'NO.' I am famous (or infamous) for saying yes until I am completely burned out. It has led to personal and marital distress more than once. There are so many things to which I would love to give my time, but right now there's barely enough time to get to doctor's appointments and raise the girls. While it has been an adjustment, it has also simplified things and given me a really good excuse to avoid distractions.
-I have a built-in excuse to go shopping. After all, I only have one button-down shirt and nothing in pink. I have to wear pink now, right?
-Cancer makes mean people nicer. True story. Especially older people. There's an exceptionally grumpy older man at my work who, prior to this week, referred to me as "that girl" (on a good day) and was wholly disapproving of my entire existence. After he found out about the cancer he began calling me "that pretty little girl" and telling me that I'm doing a good job. And yes, I am going to milk that one a little bit.
-Cancer has helped me grow a pair (and I'm not talking about boobs). Sorry, but it's true. I mean I had a pretty good pair before, but now they're really big. You wanna shoot dye into my arm and shove me in a giant machine? Cool. You wanna put a long needle in my chest and pull the trigger? Sounds good. Cut my boobs off and sew some plastic balloons in there? Let's do it. I don't want my girls to see a fearful person when they see me. I don't want to see that in myself. So I have no choice but to become stronger and more brave. (As I write this I realize that Daddy probably experienced this same feeling).
-I am humbled. I mean big, big time. It's not in the size of the things people give or do for us, but in the love they put into it. I am so amazed and humbled by the thoughtfulness people have shown me that I know I will come through this as a more thoughtful and loving person. Sometimes I am actually embarrassed by the love and attention, but receiving it is teaching me what it means to truly be humbled.
-Cancer makes you nicer. Those people closest to me might disagree because they have heard a great deal of profanity out of me lately, but truly it makes you so conscious of the fact that everyone is fighting a battle. That person in Wal-Mart or the car in front of you may be fighting a battle even worse than mine. We might as well be nice to each other.
-In my fear I have no choice but to try to become closer to God. I'm not really very good at it, but who else is there to hear my jumbled thoughts at one in the morning? God and I have some major work to do, but I know He's there and I'm working on intentionally building that relationship.
We had a second opinion on Monday from the wonderful man who was my Daddy's oncologist. He started the visit by asking me what the hell I was doing there and telling me how shocked he was to see me. I was so relieved when he told me that he shared my feeling that there must be a link to Daddy's cancer and that he would be looking for studies we could help with. I learned during that visit that my cancer started growing about two years ago. You know what that means, don't you? That I actually probably had cancer even before we knew about Daddy's. That is SO creepy. All of those hours in that chemo center and I had no idea that could be my recliner in a year. Part of me almost wishes that we had known, that Daddy and I could have shared our journey on an even deeper level, but I know that the stress of that would not have helped him. I'll settle for the thought that when I meet him again in heaven I'll have one hell of a story for him.
Dr. H also said that he will not make a determination on chemo until I have the Oncotype DX test. This is a relatively new technology that will determine my risk of reoccurance. He went so far as to give me a 70/30 chance that I WON'T need chemo. I think this freaked DH out. Chemo is associated with killing the monster and it seems that he's afraid that this technology could be wrong. For now we have to wait for pathology to come back on the tumor. The doc also said that the Tamoxifen is a must for 5-10 years and he wants me to have a hysterectomy. Right now I'm not terribly bothered by that idea. It will eliminate my chances of ovarian and uterine cancer so I know it's a necessary evil. I wonder, though, how I will feel when at age 34 I have virtually nothing of my own that makes me a woman. He is sending us to meet with a surgeon in a bigger city this week. We will explore whether her hospital performs any of the other "flap" surgeries and if I would be a candidate for them. I'm not holding my breath, but it should be interesting.
I'm in a place now that leaves me feeling a little numb. I'm somewhere between being resigned to the idea of this life change and terrified of what lies ahead. Over the last couple of weeks, though, I have been making note of the good things about having cancer. Yep, they exist.
-You never know how much you're loved until you're sick. I wouldn't wish this on anyone, but if everyone could have the opportunity to feel as loved as I feel now, the world would be a much better place.
-The little things become much less important. The only things that really matter right now are my health and the well being of my family. Isn't that how we should all try to view life?
-Cancer forces you to learn how to say 'NO.' I am famous (or infamous) for saying yes until I am completely burned out. It has led to personal and marital distress more than once. There are so many things to which I would love to give my time, but right now there's barely enough time to get to doctor's appointments and raise the girls. While it has been an adjustment, it has also simplified things and given me a really good excuse to avoid distractions.
-I have a built-in excuse to go shopping. After all, I only have one button-down shirt and nothing in pink. I have to wear pink now, right?
-Cancer makes mean people nicer. True story. Especially older people. There's an exceptionally grumpy older man at my work who, prior to this week, referred to me as "that girl" (on a good day) and was wholly disapproving of my entire existence. After he found out about the cancer he began calling me "that pretty little girl" and telling me that I'm doing a good job. And yes, I am going to milk that one a little bit.
-Cancer has helped me grow a pair (and I'm not talking about boobs). Sorry, but it's true. I mean I had a pretty good pair before, but now they're really big. You wanna shoot dye into my arm and shove me in a giant machine? Cool. You wanna put a long needle in my chest and pull the trigger? Sounds good. Cut my boobs off and sew some plastic balloons in there? Let's do it. I don't want my girls to see a fearful person when they see me. I don't want to see that in myself. So I have no choice but to become stronger and more brave. (As I write this I realize that Daddy probably experienced this same feeling).
-I am humbled. I mean big, big time. It's not in the size of the things people give or do for us, but in the love they put into it. I am so amazed and humbled by the thoughtfulness people have shown me that I know I will come through this as a more thoughtful and loving person. Sometimes I am actually embarrassed by the love and attention, but receiving it is teaching me what it means to truly be humbled.
-Cancer makes you nicer. Those people closest to me might disagree because they have heard a great deal of profanity out of me lately, but truly it makes you so conscious of the fact that everyone is fighting a battle. That person in Wal-Mart or the car in front of you may be fighting a battle even worse than mine. We might as well be nice to each other.
-In my fear I have no choice but to try to become closer to God. I'm not really very good at it, but who else is there to hear my jumbled thoughts at one in the morning? God and I have some major work to do, but I know He's there and I'm working on intentionally building that relationship.
Tuesday, September 10, 2013
Nuns and Mr. Magoo
I have a bad attitude. I'm just going to tell you that right off the bat. I know I'm letting some of you down- I'm letting myself down. I want so badly to set a good example for my girls and to have an attitude of thankfulness, but it's just not there today. Or yesterday. But this blog is about honesty and reality, so here's my reality.
I'm so frustrated and angry and scared that I really want to crawl into a hole and stay there for a good long while. Not because I don't love my life, but because I'm so tired of all of this and I'd like to go somewhere it can't find me for a while.
I miss my 3-weeks-ago-life. More than I could possibly express to you. I miss just being able to enjoy my babies and my new job. Everything now is scarred. My joyful things have the scar of cancer across them- again- and I am really, super angry about it. Some people have said that it's good to get angry- that I can channel it towards the cancer, but this isn't that kind of anger. It's aimless and random- hard to explain. It's not the kind of anger that makes you want to fight- it's the kind that makes you want to run.
I know I said I don't 'hope' for much, but the doctors had given me some concrete (I thought) positive news. There was a chance that I wouldn't need chemo and that I would be able to have a flap reconstruction that would mean a one-step surgery and great results to look forward to. Today I learned that my tumor has already grown in size and I can count on chemo. A few months worth at least. And apparently all of that hard work I put into losing weight and getting healthy means that I don't have enough fat and skin to perform a flap surgery. That means a 6-12 month process before the painful and embarrassing reconstruction process is complete. To make matters worse, I just couldn't stand the surgeon. It's not really anything he did or didn't do- I just don't like him. Of course it didn't work to his favor that he was about the 10th person this week to ask me the same 30 questions and then make me take my clothes off so he could poke me like the guy from the 'Operation' game. Also he appeared to be 80 years old and mostly blind.
I think maybe I was having a premonition yesterday. I woke up depressed and grumpy. Pissed off that I can't even crack an eyeball in the morning without the word 'cancer' being immediately present in my brain. I tried to listen to my 'screw cancer' songs on the way to work, but then got a notification that I had almost reached my data limit, so I had to turn on the radio. There was a nun speaking on the Catholic station and she sounded so old and sweet that I felt guilty changing it, so I started listening. I'll be damned if she didn't start talking about how we need to treat the challenges in our lives as blessings and lessons from God- and accept them with grace. Then she talked about a 45-year-old sister who had very advanced cancer and how much she admired this woman because all she wanted to do was enjoy whatever time she had left with her sisters and her God. Geez. I felt like such a whiny baby. I know that particular message was meant for me, and I tried so hard to soak it in, but it just kind of bounced off my heart. So then when I got the news today from Mr. Magoo I was just so incredibly mad, and not in a good productive way, but in a "I'm going to punch the nearest person and then drink too much" way. Finally the question of which of my many sins brought this particular punishment upon me crossed my mind. Yes, I know that all indications are that God doesn't work that way, but if you have met a sick person who hasn't wondered it nonetheless, I'd like to meet them. (Okay, so that nun probably never wondered that, but she doesn't count). And that's when I really began mourning my three-weeks-ago life.
Three weeks ago I could go to the grocery store without wondering what food I needed for the freezer meals I would make to get my family through. I could go to work without spending the whole day wondering what my new boss would think of me when I'm gone for a month. I could get dressed without staring at myself- trying to take in what it looks like so I can remember next month when it's gone. I could brush my hair without thinking about how much I have taken it for granted and how much I'm going to miss it. I could exercise without wondering what it will feel like after they cut through my muscles. I could look at my husband and not wonder what he will think of me when I'm bald and scarred. I could cuddle with the girls without thinking about how I won't be able to hold them close to my chest for months. I could yell at them without thinking about whether they would have good memories of me if I die on the operating table. And as much as I want to be positive and uplifting, I can't help but wonder what will be next. What if, in a few months, something else happens and THIS becomes my three-weeks ago life? While most days I can be thankful that we caught it early and I am lucky, these are the other kinds of days. The days when I remember that being "lucky" today does not, in fact, exempt me from further unluckiness in the future. And that's just kind of a crapper.
I'm so frustrated and angry and scared that I really want to crawl into a hole and stay there for a good long while. Not because I don't love my life, but because I'm so tired of all of this and I'd like to go somewhere it can't find me for a while.
I miss my 3-weeks-ago-life. More than I could possibly express to you. I miss just being able to enjoy my babies and my new job. Everything now is scarred. My joyful things have the scar of cancer across them- again- and I am really, super angry about it. Some people have said that it's good to get angry- that I can channel it towards the cancer, but this isn't that kind of anger. It's aimless and random- hard to explain. It's not the kind of anger that makes you want to fight- it's the kind that makes you want to run.
I know I said I don't 'hope' for much, but the doctors had given me some concrete (I thought) positive news. There was a chance that I wouldn't need chemo and that I would be able to have a flap reconstruction that would mean a one-step surgery and great results to look forward to. Today I learned that my tumor has already grown in size and I can count on chemo. A few months worth at least. And apparently all of that hard work I put into losing weight and getting healthy means that I don't have enough fat and skin to perform a flap surgery. That means a 6-12 month process before the painful and embarrassing reconstruction process is complete. To make matters worse, I just couldn't stand the surgeon. It's not really anything he did or didn't do- I just don't like him. Of course it didn't work to his favor that he was about the 10th person this week to ask me the same 30 questions and then make me take my clothes off so he could poke me like the guy from the 'Operation' game. Also he appeared to be 80 years old and mostly blind.
I think maybe I was having a premonition yesterday. I woke up depressed and grumpy. Pissed off that I can't even crack an eyeball in the morning without the word 'cancer' being immediately present in my brain. I tried to listen to my 'screw cancer' songs on the way to work, but then got a notification that I had almost reached my data limit, so I had to turn on the radio. There was a nun speaking on the Catholic station and she sounded so old and sweet that I felt guilty changing it, so I started listening. I'll be damned if she didn't start talking about how we need to treat the challenges in our lives as blessings and lessons from God- and accept them with grace. Then she talked about a 45-year-old sister who had very advanced cancer and how much she admired this woman because all she wanted to do was enjoy whatever time she had left with her sisters and her God. Geez. I felt like such a whiny baby. I know that particular message was meant for me, and I tried so hard to soak it in, but it just kind of bounced off my heart. So then when I got the news today from Mr. Magoo I was just so incredibly mad, and not in a good productive way, but in a "I'm going to punch the nearest person and then drink too much" way. Finally the question of which of my many sins brought this particular punishment upon me crossed my mind. Yes, I know that all indications are that God doesn't work that way, but if you have met a sick person who hasn't wondered it nonetheless, I'd like to meet them. (Okay, so that nun probably never wondered that, but she doesn't count). And that's when I really began mourning my three-weeks-ago life.
Three weeks ago I could go to the grocery store without wondering what food I needed for the freezer meals I would make to get my family through. I could go to work without spending the whole day wondering what my new boss would think of me when I'm gone for a month. I could get dressed without staring at myself- trying to take in what it looks like so I can remember next month when it's gone. I could brush my hair without thinking about how much I have taken it for granted and how much I'm going to miss it. I could exercise without wondering what it will feel like after they cut through my muscles. I could look at my husband and not wonder what he will think of me when I'm bald and scarred. I could cuddle with the girls without thinking about how I won't be able to hold them close to my chest for months. I could yell at them without thinking about whether they would have good memories of me if I die on the operating table. And as much as I want to be positive and uplifting, I can't help but wonder what will be next. What if, in a few months, something else happens and THIS becomes my three-weeks ago life? While most days I can be thankful that we caught it early and I am lucky, these are the other kinds of days. The days when I remember that being "lucky" today does not, in fact, exempt me from further unluckiness in the future. And that's just kind of a crapper.
Thursday, September 5, 2013
Miles to go
Man, I love control. I crave it- demand it even. Sometimes I don't even know I'm doing it. I think most Mothers have some level of desire or need to control- just so we don't wake up with one of those pretty white coats on. But there may be some of us who go a smidge too far. I'm one of them. Hi, my name's Angela and I'm a control addict.
Yes, to some degree, when Daddy was sick I learned that control is an illusion. At least as it pertains to our eternal fate. And even now, with my cancer, I find myself wondering what it's all for. The exercise, the healthy diet, the not-smoking. None of it made a damn bit of difference because I couldn't control my destiny when it came to developing cancer anymore than Daddy could. So you'd think that would lighten the grip that this perpetual need to control has on me. It wasn't enough, though. I still found myself panicking over what the girls are going to eat, who is going to drive them around, what if their hair and clothes make them look like rag-a-muffins because I can't dress them, who is going to scrub my toilets, what if the lack of mobility in my arms means I can't wipe my own butt?
Oh dear Lord.
But over the last week, so many people have shown up. I don't mean just verbally. They've brought me lunch (and alcohol), they've cut my hair, they've picked my girls up, done my laundry, forced me to go have a massage and traveled two hours to come to my doctor's visits. Suddenly today, I realized that I was breathing. And not the "into a paper bag" type of breathing. The calm kind. I have no control over my disease, and life or death decisions are being made for me, but I'm (kinda sorta) okay. That's the gift that people have given me- and it's the same one you can give someone when they get sick. You can do something- just one thing- the way they would want it if they were still in control. What an amazing feeling it is to be on the other end of that love. I just hope I don't get too used to it because I'm guessing ya'll are gonna expect me to do my own laundry and drive my own kids around by the time this is all over, right?
Yesterday we got some "good" news. My cancer is Estrogen-receptor positive or ER+/PR+. This is, technically, a good thing. It means that Estrogen causes my cancer to grow, so if I take an estrogen blocker for the next 5-10 years then I have a lower chance of reoccurance. The medicine you take is called Tamoxifen and is difficult for some people to tolerate- it also forces you into menopause. We also learned that my cancer is growing at a rate that causes it to increase in stage every 2-3 months. Wow! Do you know what that would have meant if I would have waited 6 more months to go to the doctor? Do the math. Then make a doctor's appointment.
As I digested that news, my thoughts went to a healthy 29-year-old mother living with stage 4 metastatic breast cancer, which is essentially incurable. She, like me, went for a regular check-up when her two tumors were discovered- and by that point it had spread to her back and several other locations. No rhyme or reason- no family history. My geneticist said that two things have to happen in your life for cancer to occur. You will probably never know what two things they were. One happens earlier in life, and if the second one occurs, BOOM- hello, tumor. So I sat there thanking God that the odds are so generously in my favor- unlike so many other women. Then the thought occured to me, "is this IT??" Am I going to spend the rest of my life just accepting whatever crappy thing rolls along and begging God just to not make it any worse? Is that how it's supposed to work? I know God is not in the bargaining business, so I realize that any kind of begging is probably a waste of time. So how, then, does God make his decisions? I know it's kind of like asking "where did God come from?" I'll never be able to answer it. But yesterday I was really miffed that I can no longer be naive and just pray for things like a raise at work or good weather for my yard sale. Those seem like such a waste now that I'm busy praying that my cancer doesn't spread while I wait for surgery.
I experienced some of this during Daddy's illness, though, and while it may sound pessimistic, it's actually been helpful. I don't "hope" for things anymore. When he was first sick, I hoped and hoped and hoped that something would change. It didn't. So I quit hoping and just resigned myself to learning to accept the inevitable. I thought this was "unchristian" of me until I read a life-changing article about how the idea of "having hope" often contributes to cancer patients stress. So now, frankly, "hope" doesn't really cross my mind. Part of me even fears that the more I "hope" it won't happen- the more likely it is that it WILL happen. So I've started asking God to help me deal with whatever He throws my way. And I usually squeeze in, "but if you could stop throwing sucky things at me, that would be AWESOME." Is that wrong? When the bible talks about "faith, hope and love" being the three most important things, am I exhibiting a lack of faith if I don't "hope" for something better? Also, is it wrong to use the word "sucky" when I'm speaking to my Heavenly Father? Just asking.
Yes, to some degree, when Daddy was sick I learned that control is an illusion. At least as it pertains to our eternal fate. And even now, with my cancer, I find myself wondering what it's all for. The exercise, the healthy diet, the not-smoking. None of it made a damn bit of difference because I couldn't control my destiny when it came to developing cancer anymore than Daddy could. So you'd think that would lighten the grip that this perpetual need to control has on me. It wasn't enough, though. I still found myself panicking over what the girls are going to eat, who is going to drive them around, what if their hair and clothes make them look like rag-a-muffins because I can't dress them, who is going to scrub my toilets, what if the lack of mobility in my arms means I can't wipe my own butt?
Oh dear Lord.
But over the last week, so many people have shown up. I don't mean just verbally. They've brought me lunch (and alcohol), they've cut my hair, they've picked my girls up, done my laundry, forced me to go have a massage and traveled two hours to come to my doctor's visits. Suddenly today, I realized that I was breathing. And not the "into a paper bag" type of breathing. The calm kind. I have no control over my disease, and life or death decisions are being made for me, but I'm (kinda sorta) okay. That's the gift that people have given me- and it's the same one you can give someone when they get sick. You can do something- just one thing- the way they would want it if they were still in control. What an amazing feeling it is to be on the other end of that love. I just hope I don't get too used to it because I'm guessing ya'll are gonna expect me to do my own laundry and drive my own kids around by the time this is all over, right?
Yesterday we got some "good" news. My cancer is Estrogen-receptor positive or ER+/PR+. This is, technically, a good thing. It means that Estrogen causes my cancer to grow, so if I take an estrogen blocker for the next 5-10 years then I have a lower chance of reoccurance. The medicine you take is called Tamoxifen and is difficult for some people to tolerate- it also forces you into menopause. We also learned that my cancer is growing at a rate that causes it to increase in stage every 2-3 months. Wow! Do you know what that would have meant if I would have waited 6 more months to go to the doctor? Do the math. Then make a doctor's appointment.
As I digested that news, my thoughts went to a healthy 29-year-old mother living with stage 4 metastatic breast cancer, which is essentially incurable. She, like me, went for a regular check-up when her two tumors were discovered- and by that point it had spread to her back and several other locations. No rhyme or reason- no family history. My geneticist said that two things have to happen in your life for cancer to occur. You will probably never know what two things they were. One happens earlier in life, and if the second one occurs, BOOM- hello, tumor. So I sat there thanking God that the odds are so generously in my favor- unlike so many other women. Then the thought occured to me, "is this IT??" Am I going to spend the rest of my life just accepting whatever crappy thing rolls along and begging God just to not make it any worse? Is that how it's supposed to work? I know God is not in the bargaining business, so I realize that any kind of begging is probably a waste of time. So how, then, does God make his decisions? I know it's kind of like asking "where did God come from?" I'll never be able to answer it. But yesterday I was really miffed that I can no longer be naive and just pray for things like a raise at work or good weather for my yard sale. Those seem like such a waste now that I'm busy praying that my cancer doesn't spread while I wait for surgery.
I experienced some of this during Daddy's illness, though, and while it may sound pessimistic, it's actually been helpful. I don't "hope" for things anymore. When he was first sick, I hoped and hoped and hoped that something would change. It didn't. So I quit hoping and just resigned myself to learning to accept the inevitable. I thought this was "unchristian" of me until I read a life-changing article about how the idea of "having hope" often contributes to cancer patients stress. So now, frankly, "hope" doesn't really cross my mind. Part of me even fears that the more I "hope" it won't happen- the more likely it is that it WILL happen. So I've started asking God to help me deal with whatever He throws my way. And I usually squeeze in, "but if you could stop throwing sucky things at me, that would be AWESOME." Is that wrong? When the bible talks about "faith, hope and love" being the three most important things, am I exhibiting a lack of faith if I don't "hope" for something better? Also, is it wrong to use the word "sucky" when I'm speaking to my Heavenly Father? Just asking.
Tuesday, September 3, 2013
Betty
I went back today and ready every single blog post. Heavyyyy. Ugh. Sorry about that. It was kind of creepy, actually. All of these things that I wrote to Daddy about his cancer- I had forgotten that I had even said them- and now I'm repeating them about my own cancer. I even mentioned the song that is now one of my favorites- Martina McBride's, "I'm gonna love you through it." It seriously made me mad. Like I'm experiencing some kind of divine test- or joke. I know that my job is to show my girls how this is supposed to be done, just like Daddy showed me. I know I can do it, but ya'll. . I really don't want to.
Most of my friends know that what I need most is to laugh. To stay busy with other things besides cancer. Maybe do a couple things that are bad for me and say, "WHAT? Afraid I might get cancer or something?" When one of them complains about something, I like to make them uncomfortable by saying, "trade ya'," or "well, I have a tumor." I told someone last night that I was going to milk that part while I can since someday I won't be able to. ;-) Then I laughed because I said, "milk it," and pretty soon I won't have any boobs with which to milk anyone. The great part about all of that, though, ('that' being cancer, I guess) is that cancer makes everything else seem so freaking AWESOME.
My job was awesome before, but now it's a vacation for me. Somewhere where nobody even knows I'm sick. Somewhere I can be anyone I want to be. Somewhere where I don't have the time to cry. It's so awesome.
My friends are awesome. I've never been one to have a ton of friends. I prefer just a few close ones who really, truly know me. It took me a long time to find that, but I have it now and it is amazing. And I consider every single one of you who takes the time to read this a friend. My friends have touched my heart and made me feel so unworthy of the love they're giving me. Every message, every call, every hug- I am so, so grateful for each of them- and each of you.
My girls are so awesome. Last night they were driving each other nuts in the car and I laughed out loud at them. How awesome that they think that someones knee touching their carseat is the worst thing that has happened this week! It's already like they've forgotten that I'm sick. Of course they can't see it yet, but it gives me hope that they'll brush this off and move on. At the same time, I hope that I can teach them something they'll remember along the way.
My husband is awesome. He's been folding laundry and packing lunches. And when I tell him that my back hurts and I think it must be another tumor, he tells me it's just stress. When I tell him that I'm going to look like a freak, he tells me he didn't marry me for my boobs, that he's really more of a butt man, and that I would never look like a freak.
Exercise is so awesome. I cried in the gym this morning. You see, I've battled my weight since I was a teenager. I've lost more weight and gained it back than I can even count. I hated sweating with a passion- and I used to tell people that I would only run if I was being chased. Two years ago when J was put on blood pressure medication we decided we needed to do something. We started a fitness journey together that changed our lives. I've done things in the last two years that I NEVER thought I would make my body do. I lost 40 pounds, ran in races and began to love sweating.The gym became my second home, and I was so proud of it. I have these fleeting thoughts now that maybe I'm being punished for caring so much about something so cosmetic. On the other hand, if I weren't so strong now, I wouldn't have as much muscle to fight this bi*ch with. That's what made me cry in the gym, though. I'm going to miss it so much. And I'm afraid I'll get fat again. There, I said it. I'm afraid I'm going to be bald and fat with no boobs. Yes, I KNOW I have bigger things to worry about. Yes, I KNOW I'm fighting death. But I would rather not be bald, fat and boobless while I'm doing it. And before you say it, yes I KNOW it's only temporary and I'll get through it. That does not make it any more appealing.
Here's what I've learned that I didn't know- and you probably don't either. They have this thing called "immediate reconstruction," except that it's not really immediate. The only immediate thing is that they put, essentially, balloons in where your boobs were. They blow them up weekly to stretch your skin until you're ready for implants. In the meantime they look all lopsided and uneven. And here's the great part. Apparently, if you need chemo, "immediate reconstruction" isn't even an option. That means I would have NOTHING for several months. NOTHING. How will I even LOOK at that? Isn't that insanely vain? I know it is, but I can't help it right now because I know it's going to be a long time before I will look like something even CLOSE to normal. I am telling myself, even as I write this, that after I get through that, getting ANYthing in there will look and feel awesome for me and I'll never take my body for granted again. See, I really am trying hard to put an upside to every down.
I feel like I have to say this every time. I know that even though cancer sucks, I'm a very lucky woman. There are so many people out there with no hope for themselves or, worse yet, for their babies (by the way, September is Childhood Cancer Awareness Month- talk about a vicious monster). I never want to discount what they're experiencing or compare my pain to theirs. The fact remains, though, that however big or small our battle, our pain is our pain. Thinking about other people's battles can give us important perspective, but it doesn't fix OUR battle. I'm kind of just figuring that out. So when you say you have a cold and I say, "wanna trade?" it doesn't mean that having a cold doesn't still suck.
I named my tumor. Betty. Betty the Bi*ch, actually. Sorry for the language, but she is kind of a bi*ch. And now, even though I know she's only, like, 1 centimeter, she feels like she's the size of my fist. That's kind of a bi*chy thing to do if you ask me. And what kind of bi*ch sets up camp in your body without asking and then, when you evict her, takes your freaking boobs with her? So you see, I think the name fits. It helps me stay mad at her as I sit here and DREAD- I mean full on sweating, heart pounding, can't eat (which is RARE for me)- DREAD tomorrow. Are they going to tell me more unexpected things? Are they going to repeatedly shake their heads when I say, for the 10th time, "YES, I'm 34 and NO there is absolutely no history of breast cancer in my family. Ever. Anywhere. Nobody." Well, my girls will have a much different answer, won't they. I'm praying that the advances in medicine are so great over the next decade that they won't have to fear it as much as we do. But right now it just reiterates what I'm already feeling. I'm 34 and I have a disease that nobody I know has ever had. They even told me not to bother calling the American Cancer Society support hotline because most of the women are retirees and "probably wouldn't be able to relate to my situation." But I know there are more "me's" out there, and I'm going to find them. As soon as this bi*ch hits the road.
Most of my friends know that what I need most is to laugh. To stay busy with other things besides cancer. Maybe do a couple things that are bad for me and say, "WHAT? Afraid I might get cancer or something?" When one of them complains about something, I like to make them uncomfortable by saying, "trade ya'," or "well, I have a tumor." I told someone last night that I was going to milk that part while I can since someday I won't be able to. ;-) Then I laughed because I said, "milk it," and pretty soon I won't have any boobs with which to milk anyone. The great part about all of that, though, ('that' being cancer, I guess) is that cancer makes everything else seem so freaking AWESOME.
My job was awesome before, but now it's a vacation for me. Somewhere where nobody even knows I'm sick. Somewhere I can be anyone I want to be. Somewhere where I don't have the time to cry. It's so awesome.
My friends are awesome. I've never been one to have a ton of friends. I prefer just a few close ones who really, truly know me. It took me a long time to find that, but I have it now and it is amazing. And I consider every single one of you who takes the time to read this a friend. My friends have touched my heart and made me feel so unworthy of the love they're giving me. Every message, every call, every hug- I am so, so grateful for each of them- and each of you.
My girls are so awesome. Last night they were driving each other nuts in the car and I laughed out loud at them. How awesome that they think that someones knee touching their carseat is the worst thing that has happened this week! It's already like they've forgotten that I'm sick. Of course they can't see it yet, but it gives me hope that they'll brush this off and move on. At the same time, I hope that I can teach them something they'll remember along the way.
My husband is awesome. He's been folding laundry and packing lunches. And when I tell him that my back hurts and I think it must be another tumor, he tells me it's just stress. When I tell him that I'm going to look like a freak, he tells me he didn't marry me for my boobs, that he's really more of a butt man, and that I would never look like a freak.
Exercise is so awesome. I cried in the gym this morning. You see, I've battled my weight since I was a teenager. I've lost more weight and gained it back than I can even count. I hated sweating with a passion- and I used to tell people that I would only run if I was being chased. Two years ago when J was put on blood pressure medication we decided we needed to do something. We started a fitness journey together that changed our lives. I've done things in the last two years that I NEVER thought I would make my body do. I lost 40 pounds, ran in races and began to love sweating.The gym became my second home, and I was so proud of it. I have these fleeting thoughts now that maybe I'm being punished for caring so much about something so cosmetic. On the other hand, if I weren't so strong now, I wouldn't have as much muscle to fight this bi*ch with. That's what made me cry in the gym, though. I'm going to miss it so much. And I'm afraid I'll get fat again. There, I said it. I'm afraid I'm going to be bald and fat with no boobs. Yes, I KNOW I have bigger things to worry about. Yes, I KNOW I'm fighting death. But I would rather not be bald, fat and boobless while I'm doing it. And before you say it, yes I KNOW it's only temporary and I'll get through it. That does not make it any more appealing.
Here's what I've learned that I didn't know- and you probably don't either. They have this thing called "immediate reconstruction," except that it's not really immediate. The only immediate thing is that they put, essentially, balloons in where your boobs were. They blow them up weekly to stretch your skin until you're ready for implants. In the meantime they look all lopsided and uneven. And here's the great part. Apparently, if you need chemo, "immediate reconstruction" isn't even an option. That means I would have NOTHING for several months. NOTHING. How will I even LOOK at that? Isn't that insanely vain? I know it is, but I can't help it right now because I know it's going to be a long time before I will look like something even CLOSE to normal. I am telling myself, even as I write this, that after I get through that, getting ANYthing in there will look and feel awesome for me and I'll never take my body for granted again. See, I really am trying hard to put an upside to every down.
I feel like I have to say this every time. I know that even though cancer sucks, I'm a very lucky woman. There are so many people out there with no hope for themselves or, worse yet, for their babies (by the way, September is Childhood Cancer Awareness Month- talk about a vicious monster). I never want to discount what they're experiencing or compare my pain to theirs. The fact remains, though, that however big or small our battle, our pain is our pain. Thinking about other people's battles can give us important perspective, but it doesn't fix OUR battle. I'm kind of just figuring that out. So when you say you have a cold and I say, "wanna trade?" it doesn't mean that having a cold doesn't still suck.
I named my tumor. Betty. Betty the Bi*ch, actually. Sorry for the language, but she is kind of a bi*ch. And now, even though I know she's only, like, 1 centimeter, she feels like she's the size of my fist. That's kind of a bi*chy thing to do if you ask me. And what kind of bi*ch sets up camp in your body without asking and then, when you evict her, takes your freaking boobs with her? So you see, I think the name fits. It helps me stay mad at her as I sit here and DREAD- I mean full on sweating, heart pounding, can't eat (which is RARE for me)- DREAD tomorrow. Are they going to tell me more unexpected things? Are they going to repeatedly shake their heads when I say, for the 10th time, "YES, I'm 34 and NO there is absolutely no history of breast cancer in my family. Ever. Anywhere. Nobody." Well, my girls will have a much different answer, won't they. I'm praying that the advances in medicine are so great over the next decade that they won't have to fear it as much as we do. But right now it just reiterates what I'm already feeling. I'm 34 and I have a disease that nobody I know has ever had. They even told me not to bother calling the American Cancer Society support hotline because most of the women are retirees and "probably wouldn't be able to relate to my situation." But I know there are more "me's" out there, and I'm going to find them. As soon as this bi*ch hits the road.
Monday, September 2, 2013
365 days
Well, Daddy, this is one letter I never pictured writing. Actually, I had avoided writing anything at all since you left. I like to come back and read your letters, and I kept telling myself that I should tell you about all of the ways the girls remember you. They look out the window and wave at the sky in the morning to tell you hello. When we had a picnic last week, the little ones did their new dance while they looked at the sky and said they were "showing Papa because he likes our dances." L calls you on her "phone" all the time to talk about the games you used to be able to play with her. K is so quiet. I can't get her to say much about you, but I know that's how she protects herself from her sadness.
This week you have been gone one year. 365 days without touching you or seeing your face. 365 days with no cancer in our lives. 365 days of stories that I didn't get to tell you. 365 days of memories you missed out on. 365 days to start to heal.
Then I went to the doctor.
In the midst of this story, let me tell you about all of the amazing ways you played a part. I dream about you pretty frequently. I get frustrated because you are always sick in my dreams. They are so realistic that I can't enjoy seeing and touching you again. A few months ago, I had 3 dreams in the course of about 2 months in which you and I both had cancer. One time I specifically remember telling you that I didn't want to die, and you told me that I wouldn't, but I didn't believe you. Finally, after the third dream and reading a story about a young mother who died of cancer at 38, I decided I must go to the doctor- just to make myself feel better.
I haven't been to the doctor in three years. It's easy to tell me how stupid that was- you're right. But I had just had a baby, so I figured I was good for a year. Then you got sick and I cancelled it last summer because I was too busy, and I figured it had only been two years. Then the dreams came, and I realized it had been three years, so I got the message- from you, the universe, God, whoever- and made an appointment in late June.
I went in on that day two weeks ago without even a second thought. I was excited to see my midwife, whom I hadn't seen since L was born. We talked about the girls, you, vacations, just life. And then she stopped and looked in my eyes and said, "do you feel that?" I realized that she kept touching the same spot. And I did feel it. She said, "It's probably nothing, but I am concerned enough that I want you to get it checked." I think I asked her if she was kidding. She wasn't.
While I waited for the next appointment, it was other people's concern that got me worried. I kept telling myself that we were all overreacting and we were going to feel so stupid when it was nothing. So we went to the follow-up- just to make ourselves feel better.
When you were sick and they made us go to that awful family meeting, I had this overwhelming urge to grab your hand and run. Just run. Because if they couldn't tell us, then we didn't have to know. We could just live. I felt that again as I was walking into the clinic. I felt the need to just run. If I didn't go, they couldn't tell me anything. After all, I've never been this healthy in my life so I'm probably just going through all of this expensive bullshit for nothing anyway.
Of course I didn't run. I didn't even run when they told me they needed "more pictures." I didn't run when they wouldn't say anything to me. I didn't run when they brought us into the quiet room with watercolor paintings and kleenex on the table. I didn't run when two doctors came in instead of one. I didn't run when they gave me a 50/50 chance of cancer. I didn't even run when they told me I had to come back right away for more tests. After all, I knew I was going to feel stupid when it was nothing. So I would go back for more tests- just to make myself feel better.
They did the tests and wouldn't tell me anything. They spoke in generalities and hypotheticals which made me so angry. They told me to sit and wait. Maybe 2 days, maybe 7, who knows. I asked them to call me as soon as they knew. I told them I was prepared.
I wasn't prepared.
They called at 1:20 on August 28th. My midwife was out, so someone else had to call. "Angela, are you at work?"
"Yes, but it's okay."
"Angela, are you alone?"
"Yes, but I'm okay."
"I'm so sorry, but it looks like you have cancer. It's what's called Invasive Ductal Carcinoma. We think it's a Stage 2. I'm sorry, but I'm not an expert so I can't really tell you more than that right now. The doctor can call you later. I'm so sorry."
I cried until I realized that she was just going to sit on the phone feeling sorry for me until I quit. So I quit long enough to convince her I was fine. I was thankful to have a sound proof office. On the way home, I found a friend who fought through the same thing two years ago. She let me ask anything I wanted. All I could think was, "what's going to be the worst part?"
"Pretty much everything for the next year is going to suck."
But I could look at her and see that there is an end. Or a new beginning. Or both. Someday maybe I would have trouble remembering this moment and the horrible depth of fear I was feeling.
The doctor called while I was on my way home to tell me that I could expect a mastectomy and probably four rounds of chemo. And I should know I would lose my hair. Thanks- I hadn't figured that one out already.
I drove really slowly because I wanted J to have as much time as possible living in normalcy before I told him. I thought about staying away for hours so he could be mad at me for being late instead of having to think about what was actually happening to our life. I remember walking into the house and the girls running up to me screaming and grabbing my legs like any other day. I felt so guilty for what they are undoubtedly going to see and experience over the next two years. Then I saw him, and all I had to do was nod my head.
It was a very long night.
I waited a few days to talk to the girls and to Mom. As soon as I asked the girls if they had heard of cancer, Claire said, "that's what Papa had." I explained to them that you can get cancer anywhere, and that not everyone dies. I tried to laugh about what was going to happen to my body so that they wouldn't be scared. They were still scared. The little girls kept asking me if I was going to die and go to heaven. They don't want me to leave them to go to the hospital. They don't want people to see me "with no hair on." But we got through that together. And you would be so happy to see how amazing your son has been. He is there for me every step of the way- taking care of Mom and me. He's brave and strong- just like you.
You know, Daddy, many people have mentioned how sad it is that this is the one year anniversary of you leaving, but to me it's not all sad. I was so scared, so angry when I found out, but I was also ready to fight. I saw you fight more valiantly than any person could imagine. You fought a monster that you could NOT beat- just to show me how it was done. You taught me how to do this, Daddy. You gave me a reason not to have a pity party- because I have a monster that I CAN beat. Remember that day we walked into the chemo room for the first time and we were horrified and scared to death? Well, I've been there with you, so when I do it this time, the monster has a name and I know the end game. Do you see, Daddy? I know why you had to go now. You had to prepare me for this fight. And even in my really, really dark moments when I think about the what-ifs, I am less scared because I know that my Daddy is there waiting for me.
Wednesday I will spend all day in the hospital. I have gained a new appreciation for what you must have experienced. I feel like a science experiment. All of the questions and the tests and the needles. I'll feel mad and scared and sick- and I'll feel like I really want to run away. But then it will be over and I'll go home and try to be Angela again and not the 34-year-old science experiment with a random case of cancer.
So thank you, Daddy. Thank you for showing me what to do. Thank you for holding my hand- in life and in death. I want you to know that God has blessed me with some seriously AMAZING people who will hold my hand now that you can't.
http://www.youtube.com/watch?v=4ufq8iMYvL0
This week you have been gone one year. 365 days without touching you or seeing your face. 365 days with no cancer in our lives. 365 days of stories that I didn't get to tell you. 365 days of memories you missed out on. 365 days to start to heal.
Then I went to the doctor.
In the midst of this story, let me tell you about all of the amazing ways you played a part. I dream about you pretty frequently. I get frustrated because you are always sick in my dreams. They are so realistic that I can't enjoy seeing and touching you again. A few months ago, I had 3 dreams in the course of about 2 months in which you and I both had cancer. One time I specifically remember telling you that I didn't want to die, and you told me that I wouldn't, but I didn't believe you. Finally, after the third dream and reading a story about a young mother who died of cancer at 38, I decided I must go to the doctor- just to make myself feel better.
I haven't been to the doctor in three years. It's easy to tell me how stupid that was- you're right. But I had just had a baby, so I figured I was good for a year. Then you got sick and I cancelled it last summer because I was too busy, and I figured it had only been two years. Then the dreams came, and I realized it had been three years, so I got the message- from you, the universe, God, whoever- and made an appointment in late June.
I went in on that day two weeks ago without even a second thought. I was excited to see my midwife, whom I hadn't seen since L was born. We talked about the girls, you, vacations, just life. And then she stopped and looked in my eyes and said, "do you feel that?" I realized that she kept touching the same spot. And I did feel it. She said, "It's probably nothing, but I am concerned enough that I want you to get it checked." I think I asked her if she was kidding. She wasn't.
While I waited for the next appointment, it was other people's concern that got me worried. I kept telling myself that we were all overreacting and we were going to feel so stupid when it was nothing. So we went to the follow-up- just to make ourselves feel better.
When you were sick and they made us go to that awful family meeting, I had this overwhelming urge to grab your hand and run. Just run. Because if they couldn't tell us, then we didn't have to know. We could just live. I felt that again as I was walking into the clinic. I felt the need to just run. If I didn't go, they couldn't tell me anything. After all, I've never been this healthy in my life so I'm probably just going through all of this expensive bullshit for nothing anyway.
Of course I didn't run. I didn't even run when they told me they needed "more pictures." I didn't run when they wouldn't say anything to me. I didn't run when they brought us into the quiet room with watercolor paintings and kleenex on the table. I didn't run when two doctors came in instead of one. I didn't run when they gave me a 50/50 chance of cancer. I didn't even run when they told me I had to come back right away for more tests. After all, I knew I was going to feel stupid when it was nothing. So I would go back for more tests- just to make myself feel better.
They did the tests and wouldn't tell me anything. They spoke in generalities and hypotheticals which made me so angry. They told me to sit and wait. Maybe 2 days, maybe 7, who knows. I asked them to call me as soon as they knew. I told them I was prepared.
I wasn't prepared.
They called at 1:20 on August 28th. My midwife was out, so someone else had to call. "Angela, are you at work?"
"Yes, but it's okay."
"Angela, are you alone?"
"Yes, but I'm okay."
"I'm so sorry, but it looks like you have cancer. It's what's called Invasive Ductal Carcinoma. We think it's a Stage 2. I'm sorry, but I'm not an expert so I can't really tell you more than that right now. The doctor can call you later. I'm so sorry."
I cried until I realized that she was just going to sit on the phone feeling sorry for me until I quit. So I quit long enough to convince her I was fine. I was thankful to have a sound proof office. On the way home, I found a friend who fought through the same thing two years ago. She let me ask anything I wanted. All I could think was, "what's going to be the worst part?"
"Pretty much everything for the next year is going to suck."
But I could look at her and see that there is an end. Or a new beginning. Or both. Someday maybe I would have trouble remembering this moment and the horrible depth of fear I was feeling.
The doctor called while I was on my way home to tell me that I could expect a mastectomy and probably four rounds of chemo. And I should know I would lose my hair. Thanks- I hadn't figured that one out already.
I drove really slowly because I wanted J to have as much time as possible living in normalcy before I told him. I thought about staying away for hours so he could be mad at me for being late instead of having to think about what was actually happening to our life. I remember walking into the house and the girls running up to me screaming and grabbing my legs like any other day. I felt so guilty for what they are undoubtedly going to see and experience over the next two years. Then I saw him, and all I had to do was nod my head.
It was a very long night.
I waited a few days to talk to the girls and to Mom. As soon as I asked the girls if they had heard of cancer, Claire said, "that's what Papa had." I explained to them that you can get cancer anywhere, and that not everyone dies. I tried to laugh about what was going to happen to my body so that they wouldn't be scared. They were still scared. The little girls kept asking me if I was going to die and go to heaven. They don't want me to leave them to go to the hospital. They don't want people to see me "with no hair on." But we got through that together. And you would be so happy to see how amazing your son has been. He is there for me every step of the way- taking care of Mom and me. He's brave and strong- just like you.
You know, Daddy, many people have mentioned how sad it is that this is the one year anniversary of you leaving, but to me it's not all sad. I was so scared, so angry when I found out, but I was also ready to fight. I saw you fight more valiantly than any person could imagine. You fought a monster that you could NOT beat- just to show me how it was done. You taught me how to do this, Daddy. You gave me a reason not to have a pity party- because I have a monster that I CAN beat. Remember that day we walked into the chemo room for the first time and we were horrified and scared to death? Well, I've been there with you, so when I do it this time, the monster has a name and I know the end game. Do you see, Daddy? I know why you had to go now. You had to prepare me for this fight. And even in my really, really dark moments when I think about the what-ifs, I am less scared because I know that my Daddy is there waiting for me.
Wednesday I will spend all day in the hospital. I have gained a new appreciation for what you must have experienced. I feel like a science experiment. All of the questions and the tests and the needles. I'll feel mad and scared and sick- and I'll feel like I really want to run away. But then it will be over and I'll go home and try to be Angela again and not the 34-year-old science experiment with a random case of cancer.
So thank you, Daddy. Thank you for showing me what to do. Thank you for holding my hand- in life and in death. I want you to know that God has blessed me with some seriously AMAZING people who will hold my hand now that you can't.
http://www.youtube.com/watch?v=4ufq8iMYvL0
Sunday, March 3, 2013
Happy Birthday
Half a year, Daddy. I've been writing to myself for half a year. I know this is how it will continue. I will blink my eyes and then I'll be saying 'one year. I can't believe I made it through one year.' I will go to sleep and when I wake up I'll be saying, 'five years. I've been without my Daddy for five years.' I'll take my babies to their ballet recital and when I take their picture I'll say, 'ten years- and how he loved to watch you dance. Then, inevitably, I'll watch them walk down the isle and I'll think, '20 years. And how your Papa would have loved to have been here.' And here we are- your 59th birthday.
I told you before you left that I would celebrate your birthday with the girls every year so that we could remember you the way you would want us to. You liked the idea. In my head, I had envisioned a more grand celebration- and one during which I didn't make the girls uncomfortable with my constant crying. I guess I'm just not there yet. I look at their little faces and listen to their stories about the zoo, mexican food, liver and onions, bing bong, shoulder rides and Yellow Submarine and I'm so sad that you're not here- that their memories will fade and the smiling face in the pictures with them will be nothing more than a mystery- a fairy book man from Mommy's stories. That's the reality- I know it is. You knew it was too, and I think that was what made you the most sad. I will try to keep you alive, but you are slipping away, even out of my grasp and I am holding on SO tightly.
Some days it still feels as if you've just been on a trip and I'll see you again. Just last week the phone rang in the evening and the fleeting thought came, "that must be Daddy. I haven't talked to him in a while and he's going to say 'you don't love me anymore!' Then I almost laughed because I couldn't believe that I'd forgotten that you're gone. Then some days your absence is so painful that it chokes me- takes the air from my lungs. Like today. It's hard to breathe when I look at pictures of you.
I feel blessed that I have no regrets when I see your smiling face. I think I held on to every moment with you as much as I could. I even knew the pain that was coming before you left. Yet I still can't breathe when I see your face. You come see me in my dreams. Usually you are still gone, but I can see you. You walk with me, you protect me. Last week, though, you were sick and I knew you would be leaving soon. I touched your cheek and felt it's roughness. I held your hand and felt the tough skin. I hugged you and smelled your Daddy aftershave. I said, "nobody will love me like you do, Daddy." And then I woke up. And I was right. And I will always be right. And that is why I can't breathe- because I am less loved than I was when you walked on this earth with me. Yet I am so happy because of the love you left with me. I am so proud of the strength that you taught me. I am so grateful for the joy you instilled in me.
I don't know why God didn't give you 20 more birthdays, Daddy, but I know He is merciful and holds your hand as you walk the streets of gold today. And I pray he'll continue to hold my hand as I learn to walk these streets without a Daddy to hold my hand. Stay in my heart, Daddy. Help me hold on. Happiest of birthdays to the man who gave me life and taught me how to live.
I told you before you left that I would celebrate your birthday with the girls every year so that we could remember you the way you would want us to. You liked the idea. In my head, I had envisioned a more grand celebration- and one during which I didn't make the girls uncomfortable with my constant crying. I guess I'm just not there yet. I look at their little faces and listen to their stories about the zoo, mexican food, liver and onions, bing bong, shoulder rides and Yellow Submarine and I'm so sad that you're not here- that their memories will fade and the smiling face in the pictures with them will be nothing more than a mystery- a fairy book man from Mommy's stories. That's the reality- I know it is. You knew it was too, and I think that was what made you the most sad. I will try to keep you alive, but you are slipping away, even out of my grasp and I am holding on SO tightly.
Some days it still feels as if you've just been on a trip and I'll see you again. Just last week the phone rang in the evening and the fleeting thought came, "that must be Daddy. I haven't talked to him in a while and he's going to say 'you don't love me anymore!' Then I almost laughed because I couldn't believe that I'd forgotten that you're gone. Then some days your absence is so painful that it chokes me- takes the air from my lungs. Like today. It's hard to breathe when I look at pictures of you.
I feel blessed that I have no regrets when I see your smiling face. I think I held on to every moment with you as much as I could. I even knew the pain that was coming before you left. Yet I still can't breathe when I see your face. You come see me in my dreams. Usually you are still gone, but I can see you. You walk with me, you protect me. Last week, though, you were sick and I knew you would be leaving soon. I touched your cheek and felt it's roughness. I held your hand and felt the tough skin. I hugged you and smelled your Daddy aftershave. I said, "nobody will love me like you do, Daddy." And then I woke up. And I was right. And I will always be right. And that is why I can't breathe- because I am less loved than I was when you walked on this earth with me. Yet I am so happy because of the love you left with me. I am so proud of the strength that you taught me. I am so grateful for the joy you instilled in me.
I don't know why God didn't give you 20 more birthdays, Daddy, but I know He is merciful and holds your hand as you walk the streets of gold today. And I pray he'll continue to hold my hand as I learn to walk these streets without a Daddy to hold my hand. Stay in my heart, Daddy. Help me hold on. Happiest of birthdays to the man who gave me life and taught me how to live.
Monday, December 24, 2012
Christmas where you are
Dear Daddy,
Christmas Eve is here. I knew it was coming. I'm trying so, so hard to keep the joy. The girls are so happy and excited, as if nothing is different. That makes me so happy, and yet so very sad.
My sweeet Daddy, how you loved Christmas. All those months of watching and listening to us to decide what the perfect gift would be. Then a few more months of trying REALLY hard not to tell us what it was. I could hear your voice first on Christmas morning. Your loud, silly voice when the girls bounded up the stairs to find you. It's going to be a very quiet Christmas morning here, Daddy.
Thanksgiving was harder than I thought. I ordered everything premade because I wasn't ready to pull that perfect turkey out of the oven and not have you there to start immediately picking at it and hopping around saying, "HOT, HOT, HOT!" as if you were surprised. Then after the meal you would find just the right spot on the couch, turn on the game and force us all to go in the other room because we didn't want to ruin your nap. It drove me absolutely crazy. And now I would give just about anything to have another chance. John missed you too- he told me later- it was lonely for him without you. He thinks of you every holiday when he turns on the John Wayne movies and has nobody to discuss the shooting techniques with.
I think about you every day, Daddy. Maybe every hour you cross my mind. Last weekend we watched videos of you and it was so overwhelming to hear your voice. I had avoided it for just over three months. J planned our family Christmas for the 15th, which was the anniversary of your diagnosis. We didn't talk about that elephant in the room, but we did drink too much, tell embarassing stories about you, listen to saved voicemails from you and watch all the videos we could find with you in them. J says he makes himself do it even though it hurts because it reminds him that you were real. I know just what he means. I go through my everyday life with this constant feeling that something is missing and I'm just used to the space. I have to remind myself that you were here. You were real. You were mine. It wasn't much, but you would've been happy with it because we were together and we were thinking about you.
K is amazing, Daddy. She's reading like a maniac, she's happy at school and she's just as much a cuddle bug as ever. I asked her last week why she hasn't really cried about you and said, "well, I did, but I know he's in heaven so I guess I'm just okay." The faith of a child. L gives me fits. How I wish I could call you when she's driving me absolutely nuts so you could laugh at me. She still tells me that she's The Hopper because Papa said she is. When I tell her Nene's coming she yells, "YAY! And Papa too!" It makes me so happy and breaks my heart at the same time. I tell her you're probably thinking about us and that you would be here if you could. The little Bear talks about you often. She misses you and still surprises me the most of the three of them. She has such a caring and tender heart. She has this sensitive honesty, and yet she is not pulled down by other's sadness. She will gently rub my back or leg when I cry about you and then she'll skip away humming a tune. She should be a nurse. Her joy would bless people. When the shooting happened last week in Conneticut, I wept for those poor babies and their parents. A thought crossed my mind, though, that brought me some peace. You're with them. I just know you're having a catch or tossing a football with those sweet little boys. You're playing hide-and-seek and having tea parties with those precious little girls. You're teaching them. I know you are- Jesus would want you to teach the children. You have to be the best story teller in heaven. Oh how I wished those poor parents could know that those babies would be well cared for (and that they would surely learn all the words to Yellow Submarine). You were the world's most fun Daddy and I'm thankful they have you.
We're all doing our best, Daddy. We miss you so much and make you a constant part of our lives. We learned so much from you, Daddy. In life and in death. I look at the bookmark on your computer that says "Our Blog," and I just can't give it up. I know you can't write me anymore, Daddy, but I want you to know that I write you every day in my heart. You made Christmas so perfect, and I will remember that joy always. Merry Christmas, Daddy. I love you so very much.
Christmas Eve is here. I knew it was coming. I'm trying so, so hard to keep the joy. The girls are so happy and excited, as if nothing is different. That makes me so happy, and yet so very sad.
My sweeet Daddy, how you loved Christmas. All those months of watching and listening to us to decide what the perfect gift would be. Then a few more months of trying REALLY hard not to tell us what it was. I could hear your voice first on Christmas morning. Your loud, silly voice when the girls bounded up the stairs to find you. It's going to be a very quiet Christmas morning here, Daddy.
Thanksgiving was harder than I thought. I ordered everything premade because I wasn't ready to pull that perfect turkey out of the oven and not have you there to start immediately picking at it and hopping around saying, "HOT, HOT, HOT!" as if you were surprised. Then after the meal you would find just the right spot on the couch, turn on the game and force us all to go in the other room because we didn't want to ruin your nap. It drove me absolutely crazy. And now I would give just about anything to have another chance. John missed you too- he told me later- it was lonely for him without you. He thinks of you every holiday when he turns on the John Wayne movies and has nobody to discuss the shooting techniques with. I think about you every day, Daddy. Maybe every hour you cross my mind. Last weekend we watched videos of you and it was so overwhelming to hear your voice. I had avoided it for just over three months. J planned our family Christmas for the 15th, which was the anniversary of your diagnosis. We didn't talk about that elephant in the room, but we did drink too much, tell embarassing stories about you, listen to saved voicemails from you and watch all the videos we could find with you in them. J says he makes himself do it even though it hurts because it reminds him that you were real. I know just what he means. I go through my everyday life with this constant feeling that something is missing and I'm just used to the space. I have to remind myself that you were here. You were real. You were mine. It wasn't much, but you would've been happy with it because we were together and we were thinking about you.
K is amazing, Daddy. She's reading like a maniac, she's happy at school and she's just as much a cuddle bug as ever. I asked her last week why she hasn't really cried about you and said, "well, I did, but I know he's in heaven so I guess I'm just okay." The faith of a child. L gives me fits. How I wish I could call you when she's driving me absolutely nuts so you could laugh at me. She still tells me that she's The Hopper because Papa said she is. When I tell her Nene's coming she yells, "YAY! And Papa too!" It makes me so happy and breaks my heart at the same time. I tell her you're probably thinking about us and that you would be here if you could. The little Bear talks about you often. She misses you and still surprises me the most of the three of them. She has such a caring and tender heart. She has this sensitive honesty, and yet she is not pulled down by other's sadness. She will gently rub my back or leg when I cry about you and then she'll skip away humming a tune. She should be a nurse. Her joy would bless people. When the shooting happened last week in Conneticut, I wept for those poor babies and their parents. A thought crossed my mind, though, that brought me some peace. You're with them. I just know you're having a catch or tossing a football with those sweet little boys. You're playing hide-and-seek and having tea parties with those precious little girls. You're teaching them. I know you are- Jesus would want you to teach the children. You have to be the best story teller in heaven. Oh how I wished those poor parents could know that those babies would be well cared for (and that they would surely learn all the words to Yellow Submarine). You were the world's most fun Daddy and I'm thankful they have you. We're all doing our best, Daddy. We miss you so much and make you a constant part of our lives. We learned so much from you, Daddy. In life and in death. I look at the bookmark on your computer that says "Our Blog," and I just can't give it up. I know you can't write me anymore, Daddy, but I want you to know that I write you every day in my heart. You made Christmas so perfect, and I will remember that joy always. Merry Christmas, Daddy. I love you so very much.
Sunday, October 7, 2012
Miss you
Dear Daddy,
Yesterday was one month since you left. The impact that it had on me caught me off guard. I'm not really one for anniversaries. Dates don't really bear a lot of weight- they're just a day like any other. I don't usually feel more pain or joy on an anniversary than I do on any other day. This one is different, though. I think because it forced me to face the fact that time has continued to pass, even though I feel like it has been standing still.
You probably know this from where you sit now, but everything is okay. The night you went was horrible. Only someone who has witnessed it can possibly understand. It was the most traumatic event I hope to ever experience, yet I wouldn't have changed it for the world. I begged God to take your pain away, yet begged Him not to take you from me. My soul was forever changed that night. You blessed me with an incredible brother who was my backbone, my bodyguard, my best friend. You must be so proud of how strong he was and how he held me up. You were so strong, Daddy. I'm sure it sound cliche by now, but nobody will ever understand unless they were there. You were your own man, the master of your fate and the captain of your soul until your last breath.
I managed to ensure that your last words to me were, "I love you too." Your granddaughters were brave, too. I hope you saw how our little Bear hugged you, kissed you, held your hand and covered you in sparkles so the angels could find you. She loves you more than you ever knew, Daddy. Yesterday I asked them what they love most about you and she said she loves how silly you are. Kate loves how you sing with them. They still sing your songs. Yes, I'll make sure they always do. Lauryn sometimes walks around singing, "bushel and a peck" for half an hour straight. They are so strong. Stronger than me.
Sometimes I think I'm doing okay because you loved me so well and so deeply that I have enough love to last a lifetime. Then I have days, like today, when I think that I've just been so busy that I haven't fully grasped what the rest of my life will be like without you. I have good substitutes, but my days are so lonely without you to call. Nobody cares like you did. Even though I know I am loved, the world is so empty when someone who loved you from your first breath has taken their last. I carry your love for me in my heart, but it's still gone. It's no longer tangible. You are a memory now. That's what hit me the other day-walking out to the mailbox- my Daddy, so real just weeks ago, is now just a memory. The memory of you takes my breath away, but everyone else has to keep breathing.
Uncle B said he dreams about you. John did too. I told them I didn't want to dream about you and so, of course, that night I dreamed about you. It was Christmas. You were there the whole time, standing by the tree, opening presents with us (you were silent, I later realized). I left to go somewhere and remembered that I had been to your funeral. Suddenly I wondered if I was crazy. If anyone else had seen you. It had been so natural to me that you were there, but I was scared to ask John if you were really there because I was afraid he would think I was crazy or tell me that I had imagined it. Maybe I hadn't really been to your funeral. I drove around trying to decide if I should go back to see if you were still there. Then I woke up. I don't mean to make you feel bad, but I dread Christmas now. Oh my goodness, how you loved that holiday. You loved giving gifts and you were worse than a child at keeping secrets. I just can't imagine finding the same joy from now on that I had when you were here.
Daddy, I miss you so much. I love you so much. No illness, no death, can take that love away. What is love without an outlet, Daddy? What do I do with it? It's not a love that I can give anyone else- it's only for my Daddy. Thank you for teaching me how to love.
A day with the Lord is like a thousand years and a thousand years is like a day. I'll see you in a day or so, Daddy.
Yesterday was one month since you left. The impact that it had on me caught me off guard. I'm not really one for anniversaries. Dates don't really bear a lot of weight- they're just a day like any other. I don't usually feel more pain or joy on an anniversary than I do on any other day. This one is different, though. I think because it forced me to face the fact that time has continued to pass, even though I feel like it has been standing still.
You probably know this from where you sit now, but everything is okay. The night you went was horrible. Only someone who has witnessed it can possibly understand. It was the most traumatic event I hope to ever experience, yet I wouldn't have changed it for the world. I begged God to take your pain away, yet begged Him not to take you from me. My soul was forever changed that night. You blessed me with an incredible brother who was my backbone, my bodyguard, my best friend. You must be so proud of how strong he was and how he held me up. You were so strong, Daddy. I'm sure it sound cliche by now, but nobody will ever understand unless they were there. You were your own man, the master of your fate and the captain of your soul until your last breath.
I managed to ensure that your last words to me were, "I love you too." Your granddaughters were brave, too. I hope you saw how our little Bear hugged you, kissed you, held your hand and covered you in sparkles so the angels could find you. She loves you more than you ever knew, Daddy. Yesterday I asked them what they love most about you and she said she loves how silly you are. Kate loves how you sing with them. They still sing your songs. Yes, I'll make sure they always do. Lauryn sometimes walks around singing, "bushel and a peck" for half an hour straight. They are so strong. Stronger than me.
Sometimes I think I'm doing okay because you loved me so well and so deeply that I have enough love to last a lifetime. Then I have days, like today, when I think that I've just been so busy that I haven't fully grasped what the rest of my life will be like without you. I have good substitutes, but my days are so lonely without you to call. Nobody cares like you did. Even though I know I am loved, the world is so empty when someone who loved you from your first breath has taken their last. I carry your love for me in my heart, but it's still gone. It's no longer tangible. You are a memory now. That's what hit me the other day-walking out to the mailbox- my Daddy, so real just weeks ago, is now just a memory. The memory of you takes my breath away, but everyone else has to keep breathing.
Uncle B said he dreams about you. John did too. I told them I didn't want to dream about you and so, of course, that night I dreamed about you. It was Christmas. You were there the whole time, standing by the tree, opening presents with us (you were silent, I later realized). I left to go somewhere and remembered that I had been to your funeral. Suddenly I wondered if I was crazy. If anyone else had seen you. It had been so natural to me that you were there, but I was scared to ask John if you were really there because I was afraid he would think I was crazy or tell me that I had imagined it. Maybe I hadn't really been to your funeral. I drove around trying to decide if I should go back to see if you were still there. Then I woke up. I don't mean to make you feel bad, but I dread Christmas now. Oh my goodness, how you loved that holiday. You loved giving gifts and you were worse than a child at keeping secrets. I just can't imagine finding the same joy from now on that I had when you were here.
Daddy, I miss you so much. I love you so much. No illness, no death, can take that love away. What is love without an outlet, Daddy? What do I do with it? It's not a love that I can give anyone else- it's only for my Daddy. Thank you for teaching me how to love.
A day with the Lord is like a thousand years and a thousand years is like a day. I'll see you in a day or so, Daddy.
Wednesday, September 5, 2012
Goodbye
Dear Daddy,
I think this will be the last letter I write you while you're in this life with me. I've known for nine months now that this day would come. I knew I wanted your words to keep with me after you were gone. I knew we wouldn't want to leave anything unsaid. But I always thought I would have one more chance. A warning. I thought I would know when it was time to ask you to write me one more letter. I thought I would know when you set foot in my house for the last time. I thought I would remember the last time I heard your laugh, heard your voice before it was weak and faded. When you kissed my babies goodbye before your trip to heaven. I thought we would have a chance to sit down and talk about your decision to come home. We would cry together and talk about how brave you've been and then you could gently go home. I thought I would know.
You grew weaker over the last month. I knew when they told you to start using a walker that it was getting closer. Last month we had such a good time at lunch. We sat outside at your favorite mexican restaurant and talked for hours. Then for our last lunch on the 21st we went to the chinese place. You were so weak, but your spirits were reignited because of the drop in your CA-19-9 numbers. But you were changing. It was like you were out of subjects. Disconnected. So, you took your chemo that day, but you didn't bounce back like you usually do. Every day that I called, you were feeling worse than the previous day. I wanted to have hope, Daddy, I really did. I tried so hard, but I just couldn't. Then you fell. The first time was Wednesday. Mom must've been so scared. You didn't want her to call anyone. I understood. You knew if you went to the hospital that you wouldn't make it out. I thought originally that it was just a cancer fear, but now I think that your body knew your soul was leaving- and you just didn't want to quit fighting. Then Friday you got out of bed by yourself and couldn't get up. She had to call the paramedics to get you off the floor and you were so mad. You wanted to come over to my house so badly Saturday so you could be with all of us. I should've known you wouldn't be able to come, but I really thought I would have you there one more time. We came over to see you Sunday. You made me go through the safe with you and look at important papers. We talked about how they would probably put you in the hospital for another plasma transfusion on Tuesday. I wondered if any transfusion could renew the spirit you had lost. Then Monday came. You couldn't get off the couch. We just couldn't wait for help anymore, Daddy. We were scared, so the ambulance took you to the hospital. You started fading there. You were tired and you seemed like you were confused. They told us that you didn't have any infections, so they were trying to find a diagnosis in order to admit you. I felt like screaming, "as if liver cancer isn't a diagnosis?" They finally took you upstairs where they told us you had infections. Then they said you didn't, then they said it was kidney failure, then it wasn't. On and on we went with them while you kept fading. I knew Monday night. I knew I needed to let go- that you needed to let go.
I finally had the courage to ask Lynn what cancer markers really meant. Every week for nine months I've wondered how high they would get before you died. She told me that she has never seen anyone alive with numbers as high as yours. Ever. I wondered how we could be so naive. Especially since your numbers were even higher last month when you were still with us. Then I just got so proud. So very, very proud of you. You are stronger than any patient she has ever seen in her career. She told us that she thought you needed to come home and rest.
I felt like you needed to know that you were the toughest patient they've ever had, so I told you. You woke up enough to look at me and say, "really?" I think you told me you had to think about it. I told you that you were tough enough to keep fighting if you wanted to, but that if you were too tired to fight anymore then you could sleep because you already won. You told me you were just to tired. I asked you to tell me one more story about you and me. Of course you told me how much you loved our Saturday morning dances. And oh, Daddy, I did too. Dancing with you made me who I am. I just want to beg you not to go, Daddy. Why didn't I dance with you one more time, Daddy?
This morning you woke up enough to hear the doctor tell you that he could keep giving you IV antibiotics for a few more days so that maybe you would wake up a little. Be more aware. More aware of what? So you and Mom talked and you told us you just wanted to go home. Here we were, exactly where I knew you wanted to be, and I panicked, Daddy. I got so scared that you were giving up because you thought WE didn't want to fight anymore. God, I hope you didn't think that. I told you over and over that we could keep fighting, but you're just so tired, Daddy. You're just not in there anymore. Did I want you to give up for ME, or for you? I feel so guilty, Daddy. You know I would fight with you until the end, right? I've fought with you every week, Daddy, I wouldn't give up now, but we just can't make it any better. I'm so sorry, Daddy. So sorry that I couldn't will you to be better, that I couldn't cause a miracle to happen. I'm sorry I listened to you when you said not to come to the last chemo appointment- even though they wouldn't let you have chemo. Why did I listen to you??!! Why didn't I listen to my heart?? I could have had one more lunch with you, Daddy, and I don't think I'll ever forgive myself for that. Did you know that was the last one, Daddy? If I let myself start thinking about all of the things I regret I don't think I can go on.
Here we are now. At home like you wanted to be. You won't take your medicine. You won't really wake up anymore. It hurts so much, Daddy. I'm trying to remember that last normal conversation I had with you and I can't right now. I miss you so much, Daddy. I want you here, but you're not really here, so then I start thinking you should go. What good is this now, Daddy? If I didn't already ask you, it's too late. Last chemo you told me to ask you anything I wanted. I really couldn't think of much because we've talked so much, but I asked you to tell me more about your childhood. How could you leave so quickly, Daddy? I'm not ready. I'm not ready for you to leave.
I left very early in the morning to get here Tuesday. It was so dark and foggy. I looked ahead and the road actually looked scary. I couldn't even see the road in front of me. Sometimes I would go down a hill and fog would actually surround me, but I kept going. Then I realized that the road was just like my life now. It's so very dark and scary, and I really just want to stop the car, but I know the road is still there even when I can't see it, so I keep driving. I kept driving to you, Daddy, just like I'll keep walking through life to get to you in Heaven. This morning it was a little lighter. Still foggy, but the sun was rising. I wondered if God was trying to teach me something. Trying to tell me that the sun would rise again and my fog will lift some day.
Oh, Daddy. Thank you. Thank you for being everything to me. Thank you for playing hide-and-go-seek with me on rainy days, for letting me be silly or sad, for pulling on my ponytails, for buying me a puppy, for letting me be myself, for pretending to be my angry boyfriend when I was being bullied, for always forgiving me, for always loving me. Thank you for showing us how to fight bravely, Daddy. My babies will always know how hard you fought to be their Papa. God help me, I'm going to miss you so much, Daddy. I'm so proud you were mine, and I'm so proud I'm yours. I won't be as scared to die now because I know my Daddy's waiting for me. Now sleep, Daddy. Please go home so you won't hurt anymore. It's time now, Daddy. It's going to be okay. I love you Daddy, always and forever.
I think this will be the last letter I write you while you're in this life with me. I've known for nine months now that this day would come. I knew I wanted your words to keep with me after you were gone. I knew we wouldn't want to leave anything unsaid. But I always thought I would have one more chance. A warning. I thought I would know when it was time to ask you to write me one more letter. I thought I would know when you set foot in my house for the last time. I thought I would remember the last time I heard your laugh, heard your voice before it was weak and faded. When you kissed my babies goodbye before your trip to heaven. I thought we would have a chance to sit down and talk about your decision to come home. We would cry together and talk about how brave you've been and then you could gently go home. I thought I would know.
You grew weaker over the last month. I knew when they told you to start using a walker that it was getting closer. Last month we had such a good time at lunch. We sat outside at your favorite mexican restaurant and talked for hours. Then for our last lunch on the 21st we went to the chinese place. You were so weak, but your spirits were reignited because of the drop in your CA-19-9 numbers. But you were changing. It was like you were out of subjects. Disconnected. So, you took your chemo that day, but you didn't bounce back like you usually do. Every day that I called, you were feeling worse than the previous day. I wanted to have hope, Daddy, I really did. I tried so hard, but I just couldn't. Then you fell. The first time was Wednesday. Mom must've been so scared. You didn't want her to call anyone. I understood. You knew if you went to the hospital that you wouldn't make it out. I thought originally that it was just a cancer fear, but now I think that your body knew your soul was leaving- and you just didn't want to quit fighting. Then Friday you got out of bed by yourself and couldn't get up. She had to call the paramedics to get you off the floor and you were so mad. You wanted to come over to my house so badly Saturday so you could be with all of us. I should've known you wouldn't be able to come, but I really thought I would have you there one more time. We came over to see you Sunday. You made me go through the safe with you and look at important papers. We talked about how they would probably put you in the hospital for another plasma transfusion on Tuesday. I wondered if any transfusion could renew the spirit you had lost. Then Monday came. You couldn't get off the couch. We just couldn't wait for help anymore, Daddy. We were scared, so the ambulance took you to the hospital. You started fading there. You were tired and you seemed like you were confused. They told us that you didn't have any infections, so they were trying to find a diagnosis in order to admit you. I felt like screaming, "as if liver cancer isn't a diagnosis?" They finally took you upstairs where they told us you had infections. Then they said you didn't, then they said it was kidney failure, then it wasn't. On and on we went with them while you kept fading. I knew Monday night. I knew I needed to let go- that you needed to let go.
I finally had the courage to ask Lynn what cancer markers really meant. Every week for nine months I've wondered how high they would get before you died. She told me that she has never seen anyone alive with numbers as high as yours. Ever. I wondered how we could be so naive. Especially since your numbers were even higher last month when you were still with us. Then I just got so proud. So very, very proud of you. You are stronger than any patient she has ever seen in her career. She told us that she thought you needed to come home and rest.
I felt like you needed to know that you were the toughest patient they've ever had, so I told you. You woke up enough to look at me and say, "really?" I think you told me you had to think about it. I told you that you were tough enough to keep fighting if you wanted to, but that if you were too tired to fight anymore then you could sleep because you already won. You told me you were just to tired. I asked you to tell me one more story about you and me. Of course you told me how much you loved our Saturday morning dances. And oh, Daddy, I did too. Dancing with you made me who I am. I just want to beg you not to go, Daddy. Why didn't I dance with you one more time, Daddy? 
This morning you woke up enough to hear the doctor tell you that he could keep giving you IV antibiotics for a few more days so that maybe you would wake up a little. Be more aware. More aware of what? So you and Mom talked and you told us you just wanted to go home. Here we were, exactly where I knew you wanted to be, and I panicked, Daddy. I got so scared that you were giving up because you thought WE didn't want to fight anymore. God, I hope you didn't think that. I told you over and over that we could keep fighting, but you're just so tired, Daddy. You're just not in there anymore. Did I want you to give up for ME, or for you? I feel so guilty, Daddy. You know I would fight with you until the end, right? I've fought with you every week, Daddy, I wouldn't give up now, but we just can't make it any better. I'm so sorry, Daddy. So sorry that I couldn't will you to be better, that I couldn't cause a miracle to happen. I'm sorry I listened to you when you said not to come to the last chemo appointment- even though they wouldn't let you have chemo. Why did I listen to you??!! Why didn't I listen to my heart?? I could have had one more lunch with you, Daddy, and I don't think I'll ever forgive myself for that. Did you know that was the last one, Daddy? If I let myself start thinking about all of the things I regret I don't think I can go on.
I left very early in the morning to get here Tuesday. It was so dark and foggy. I looked ahead and the road actually looked scary. I couldn't even see the road in front of me. Sometimes I would go down a hill and fog would actually surround me, but I kept going. Then I realized that the road was just like my life now. It's so very dark and scary, and I really just want to stop the car, but I know the road is still there even when I can't see it, so I keep driving. I kept driving to you, Daddy, just like I'll keep walking through life to get to you in Heaven. This morning it was a little lighter. Still foggy, but the sun was rising. I wondered if God was trying to teach me something. Trying to tell me that the sun would rise again and my fog will lift some day.
Oh, Daddy. Thank you. Thank you for being everything to me. Thank you for playing hide-and-go-seek with me on rainy days, for letting me be silly or sad, for pulling on my ponytails, for buying me a puppy, for letting me be myself, for pretending to be my angry boyfriend when I was being bullied, for always forgiving me, for always loving me. Thank you for showing us how to fight bravely, Daddy. My babies will always know how hard you fought to be their Papa. God help me, I'm going to miss you so much, Daddy. I'm so proud you were mine, and I'm so proud I'm yours. I won't be as scared to die now because I know my Daddy's waiting for me. Now sleep, Daddy. Please go home so you won't hurt anymore. It's time now, Daddy. It's going to be okay. I love you Daddy, always and forever.
Tuesday, August 21, 2012
Inevitable
Dear Daddy,
I can't sleep. I keep watching stupid MTV trying to avoid the thoughts that are burning holes in my brain, so I decided redesigning the blog would get my mind off of them. As you can tell, neither effort was successful.
You and I keep talking about how we haven't written in so long. Not surprisingly, we're on the same page. When we write, we go to the deepest part of heart and soul. We can't stop ourselves from admitting the truth. For months now, we wanted just to live, which meant closing that part of ourselves for a while. It's not that we are in denial of our reality- quite the opposite, actually. We are so keenly aware of our reality that we needed NOT to write about it for a while. We needed just to be in the moment without looking back. Sometimes that moment was laying on the beach watching the babies play. Sometimes that moment was laying in a hospital bed watching the seconds slowly pass. Can either moment ever really be put into words anyway?
I wonder if you'll think it's strange that I felt compelled to write on a day that brought such unexpectedly good news. I don't know if your doc had ever seen cancer markers decrease that drastically in someone with your cancer in it's current stage. What an amazing sense of joy overcame me. The thing is, though, it doesn't take one bit of the pain away. I don't mean to sound selfish- I am so grateful to God for what He is doing for you. I just don't know if I can feel joy the way I used to.
We were talking today about how your victories change when you have cancer. We heard the story of the woman who was overjoyed that she didn't have the "mutant gene." O joy of joys, I only have the REGULAR cancer gene! But I get it. Don't you? That was her victory. Amazing, isn't it, that God can help us find victory in our pain? Nonetheless, I gave up my hope a while ago. I've told you before that I don't mean that in a hopeless or defeatist sense like it may sound. I am simply at peace with my hopelessness. I don't waste my time "hoping" for anything. I simply accept what today brings as either wonderful or crappy and I try to roll with it. That works well as long as the people around you accept that. When they don't, it can get painful and frustrating. I shared the news with such joy, but here I am tonight and you still have the damn cancer. Am I joyful that the chemo is giving us more time to enjoy, or am I bitter that I have to resort to living my life in '3 on, 1 off' cycles of uncertainty and fear? I guess I can be both. I am both.
We didn't finish talking today about what it's like to remember life before cancer. I realized that I haven't even thought about it in months. Isn't that a strange feeling? Nobody could have explained to me how that would happen. I know that's what people mean by 'the new normal,' but I'm not getting comfortable here because 'normal' is just an illusion. We have to be prepared now for constant change. Doesn't that just wear you out some days? I do not let myself visit the past, which is a shame because there's so much joy there. Then again, the joy is exactly why I don't visit. Someday I hope that will change.
With J's Mom and her injury, K's big change, going back to work and thinking about cancer, I've been feeling like I'm going to implode. That is not to say that I don't realize how many people have much bigger battles that me. I find myself thanking God so much more for all of the wonderful things with which He has blessed me. That just doesn't erase my personal pain tonight.
I meant what I said today. When I woke up this morning, the very first thing that popped into my head was how incredibly brave you are. When I say you have surprised me, that doesn't mean that I DIDN'T think you were strong before this. It just means that a different person has emerged from within you. One who we never knew existed. He has all of the fortitude and attitude of my old Daddy, but the new one has this strength- this fight and stuborness that the old one didn't need. You are just amazing. Remember, though, Daddy- you don't have to do anything for anyone but yourself. If doing it "for us" makes you stronger then that's okay, but you'll never hear me tell you what to do. You are still the master of your fate. Well, you and The Master. He's really the only one whose opinion counts. I love you so very, very much.
I can't sleep. I keep watching stupid MTV trying to avoid the thoughts that are burning holes in my brain, so I decided redesigning the blog would get my mind off of them. As you can tell, neither effort was successful.
You and I keep talking about how we haven't written in so long. Not surprisingly, we're on the same page. When we write, we go to the deepest part of heart and soul. We can't stop ourselves from admitting the truth. For months now, we wanted just to live, which meant closing that part of ourselves for a while. It's not that we are in denial of our reality- quite the opposite, actually. We are so keenly aware of our reality that we needed NOT to write about it for a while. We needed just to be in the moment without looking back. Sometimes that moment was laying on the beach watching the babies play. Sometimes that moment was laying in a hospital bed watching the seconds slowly pass. Can either moment ever really be put into words anyway?
I wonder if you'll think it's strange that I felt compelled to write on a day that brought such unexpectedly good news. I don't know if your doc had ever seen cancer markers decrease that drastically in someone with your cancer in it's current stage. What an amazing sense of joy overcame me. The thing is, though, it doesn't take one bit of the pain away. I don't mean to sound selfish- I am so grateful to God for what He is doing for you. I just don't know if I can feel joy the way I used to.We were talking today about how your victories change when you have cancer. We heard the story of the woman who was overjoyed that she didn't have the "mutant gene." O joy of joys, I only have the REGULAR cancer gene! But I get it. Don't you? That was her victory. Amazing, isn't it, that God can help us find victory in our pain? Nonetheless, I gave up my hope a while ago. I've told you before that I don't mean that in a hopeless or defeatist sense like it may sound. I am simply at peace with my hopelessness. I don't waste my time "hoping" for anything. I simply accept what today brings as either wonderful or crappy and I try to roll with it. That works well as long as the people around you accept that. When they don't, it can get painful and frustrating. I shared the news with such joy, but here I am tonight and you still have the damn cancer. Am I joyful that the chemo is giving us more time to enjoy, or am I bitter that I have to resort to living my life in '3 on, 1 off' cycles of uncertainty and fear? I guess I can be both. I am both.
We didn't finish talking today about what it's like to remember life before cancer. I realized that I haven't even thought about it in months. Isn't that a strange feeling? Nobody could have explained to me how that would happen. I know that's what people mean by 'the new normal,' but I'm not getting comfortable here because 'normal' is just an illusion. We have to be prepared now for constant change. Doesn't that just wear you out some days? I do not let myself visit the past, which is a shame because there's so much joy there. Then again, the joy is exactly why I don't visit. Someday I hope that will change.
With J's Mom and her injury, K's big change, going back to work and thinking about cancer, I've been feeling like I'm going to implode. That is not to say that I don't realize how many people have much bigger battles that me. I find myself thanking God so much more for all of the wonderful things with which He has blessed me. That just doesn't erase my personal pain tonight.
I meant what I said today. When I woke up this morning, the very first thing that popped into my head was how incredibly brave you are. When I say you have surprised me, that doesn't mean that I DIDN'T think you were strong before this. It just means that a different person has emerged from within you. One who we never knew existed. He has all of the fortitude and attitude of my old Daddy, but the new one has this strength- this fight and stuborness that the old one didn't need. You are just amazing. Remember, though, Daddy- you don't have to do anything for anyone but yourself. If doing it "for us" makes you stronger then that's okay, but you'll never hear me tell you what to do. You are still the master of your fate. Well, you and The Master. He's really the only one whose opinion counts. I love you so very, very much.
Sunday, February 26, 2012
Not Superman, but...
by Dave
Most of you who have been following our blog know that last Thursday I had an unexpected setback in this battle. A blood clot developed behind my right knee (common for cancer patients, I learned) and threatened my life.
I was directed to go immediately to the hospital where I spent the last 4 days. I learned much in four "short" days:
- that I'm not "Superman" in this fight with cancer. Things CAN go sideways (and likely WILL from time to time).
- to appreciate - even more - how well things have been going.
- that my family is beyond comparison (OK...I knew that already).
- that my wonderful friends will never let me fall.
- that my years investing myself in my students on a personal level has paid off and continues to pay off.
- that my colleagues, my co-workers, have a depth of compassion and love for me that I truly wish EVERYONE had at work.
My little girl is a MASTER organizer, and one of the events she enjoys organizing most is a surprise party. She had a wonderful Chicago-themed party planned for me this weekend, and she had the best co-conspirator possible, our Departmental Office Manager, Michelle. The only problem was, I had been rushed to the hospital two days before. Somehow, she got a hold of all the attendees...many from out of town (including a former student who came all the way from Minnesota) and informed them that the party had been moved - to the hospital.
There were probably 70 people waiting for me as the head nurse of Union Hospital wheeled me - in full hospital garb - into the party.
I had never been so surprised in my life. Family, church friends, work colleagues, current and former students PACKED the room. How I didn't cry, I'll never know.
It was the most humbling event of my life, and obviously a huge blessing. I made sure to greet every single person there, despite some physical discomfort. How could I NOT?
There were countless cards, and one VERY special gift...the gift of a lifetime, in fact. My friends at work got together and bought two tickets to the Beach Boys 50th Anniversary Concert in Chicago!! There was never a more perfect gift given at a more perfect time. I was and still am at a loss for words at their generosity. It's something I will remember forever.
Finally, I learned that the most important weapon anyone can have in a battle with cancer is a rock-solid certainty that they are not alone in their fight. After last night, I KNOW I'm never alone, and I'm so very, very thankful - and STRONG.
.......................................
Dear Mouse,
You absolutely amaze me. What did I ever do to deserve a daughter as wonderful as you?
Love, Daddy
Thursday, February 16, 2012
"You Confuse Me"
by Dave
That's what the oncologist said as he walked in the room today.
"You confuse me."
That's not the first time he or his NP has said that to me.
They can't explain me. For now, I can live with that quite nicely.
Today I received the results of my first mid-chemo CT scan, along with the first set of cancer marker results. It couldn't have gone much better.
While the CT showed a couple of additional spots on my liver, the doctor believes that they may well have been there all along but just showed up because this most recent CT was the first "contrast CT" that I had. But the REAL good news is that the cancer markers are WAY down: from 13,500 to 11,500. Add to this that I haven't had a single pain pill in 22 days, and have only taken 4 anti-nausea pills EVER, and the fact that both my liver AND the cancer have shrunk, and it adds up to one thing:
My oncologist is confused.
I can live with that.
I thank all of you from the bottom of my heart for your prayers, notes and phone calls. You never know how much they mean until you find yourself in a situation like this (and I pray you never do), but they are such a source of strength for me.
Please keep them coming.
To God be the Glory!
Dear Mouse,
I feel like I have given this cancer a hard right punch in the mouth, and it feels SO good! I hope it won't be the last good shot I give it, but by God, I at least landed ONE. You know that you give me so much strength. I think about my family and I just want to fight as hard as I can until the bell rings. You would expect that from your daddy, and I never want to let you down again.
Love, Daddy
Wednesday, February 8, 2012
Numb
I've been evaluating myself lately. Trying to figure out what has changed in me because of what has changed around me. Daddy and I have both talked about the ups and downs, the sunshine and the shadows, the roller coaster. For me, though, something has changed more than I had realized. I just figured it out yesterday after a woman finished yelling in my face. As I stood watching her mouth move as she ranted and raved, I thought very briefly about saying some ugly things to her. In November I would have. She would really have gotten under my skin. I was upset afterwards, but not really because of her. I think it just activated my emotions which, for several weeks, have been pushed down to a place so deep that I didn't know it was even there. A place so deep that even when my throat starts to burn like fire and my eyes sting like knives, I can stop the tears because their journey from that depth of my heart is so long. I never used to be able to do that. I started thinking about it and realized that I really didn't care. I didn't care what she said to me and about me. In fact, I don't care about the vast majority of the things I cared about a month and a half ago. It's not that I have negative emotions about people or things- I just don't have positive ones either- I'm numb.
That shadow and sunshine thing- you can only take it for so long. Eventually, it seems, it turns to just shades of gray. I know this sounds like a bad thing, and I suppose in some ways it is. I can't say that I've been truly happy since December 15th. That's not to say that I'm walking in the constant pain and sorrow that I was during those first few weeks- that would kill me and destroy my family. I appreciate my husband, children and my few close friends more than I ever imagined possible. What has happened is that, instead of that constant pain, I'm just numb. In situations like the other day, it turns out to be quite a good thing. It's like my 'shield of numbness.' It protects me from issues that don't really matter.
The fact is that I just don't care as much. You name it and, except for my family, I don't care as much about it now as I did a month and a half ago. Some of it is the little stuff like the 50 million committments I had for my time. Some of it is bigger- like my persistant need to work to get people to like me. I just don't have the time or the heart for it anymore, and maybe that's not such a bad thing.
Some days, though, I miss the colors. The gray is exhausting in it's own ways. You have to pretend that the gray is normal. That it's always been that way. You have to forget that you ever saw the colors because thinking about them will hurt in such indescribible ways. You get tired of feeling guilty everytime you laugh, so you laugh less. You get tired of talking about it, so you talk less. You get tired of feeling like nobody understands, so you stop trying to explain. I believe that the colors (the sunshine) will come back some day- I have to believe that- but during this transition period I just have to be- numb. I prefer it that way. It hurts less.
Dear Daddy,
Let me give you the first two examples that come to my mind after just reading your letter. The first is my favorite. When those girls were tormenting me in high school, I didn't know who else to go to. Unfortunately for you, you were always the one I would turn to in the difficult times. I was so scared of them and what they might do to me. What you did that night didn't just prove to me that you can do an awesome impression of a big, scary black boyfriend on the phone. What you did showed me that I had nothing to be afraid of. That I was capable of protecting myself. That the words bullies use to scare you are just that- words. You didn't just think like a parent that night. You thought like. . well, exactly like I needed you to. Do you know how much that taught me that I have taken with me into motherhood? No, you probably don't know. The love, courage and humor that you taught me that night made me a better person.
If that's not enough for you, let me tell you the other thing. You found a way to push me to finish college. You get mad at me so rarely. There's nothing I hate more than disappointing you. Even though it wasn't easy for you to get mad and make it clear that I was disappointing you, you did what you had to do. If you had not done that, I would not be where I am today. I wouldn't have had the career opportunities that made me who I am. I may not even have met my husband. That push changed my life forever. I am forever grateful.
You have always known what I need. Whether it's agreement, support, rebuke or a big, black pretend boyfriend; you have always been there when I needed someone or something. You have encouraged me and taught me things too numerous to count. Have no doubts. I love you.
That shadow and sunshine thing- you can only take it for so long. Eventually, it seems, it turns to just shades of gray. I know this sounds like a bad thing, and I suppose in some ways it is. I can't say that I've been truly happy since December 15th. That's not to say that I'm walking in the constant pain and sorrow that I was during those first few weeks- that would kill me and destroy my family. I appreciate my husband, children and my few close friends more than I ever imagined possible. What has happened is that, instead of that constant pain, I'm just numb. In situations like the other day, it turns out to be quite a good thing. It's like my 'shield of numbness.' It protects me from issues that don't really matter.
The fact is that I just don't care as much. You name it and, except for my family, I don't care as much about it now as I did a month and a half ago. Some of it is the little stuff like the 50 million committments I had for my time. Some of it is bigger- like my persistant need to work to get people to like me. I just don't have the time or the heart for it anymore, and maybe that's not such a bad thing.
Some days, though, I miss the colors. The gray is exhausting in it's own ways. You have to pretend that the gray is normal. That it's always been that way. You have to forget that you ever saw the colors because thinking about them will hurt in such indescribible ways. You get tired of feeling guilty everytime you laugh, so you laugh less. You get tired of talking about it, so you talk less. You get tired of feeling like nobody understands, so you stop trying to explain. I believe that the colors (the sunshine) will come back some day- I have to believe that- but during this transition period I just have to be- numb. I prefer it that way. It hurts less.
Dear Daddy,
Let me give you the first two examples that come to my mind after just reading your letter. The first is my favorite. When those girls were tormenting me in high school, I didn't know who else to go to. Unfortunately for you, you were always the one I would turn to in the difficult times. I was so scared of them and what they might do to me. What you did that night didn't just prove to me that you can do an awesome impression of a big, scary black boyfriend on the phone. What you did showed me that I had nothing to be afraid of. That I was capable of protecting myself. That the words bullies use to scare you are just that- words. You didn't just think like a parent that night. You thought like. . well, exactly like I needed you to. Do you know how much that taught me that I have taken with me into motherhood? No, you probably don't know. The love, courage and humor that you taught me that night made me a better person.
If that's not enough for you, let me tell you the other thing. You found a way to push me to finish college. You get mad at me so rarely. There's nothing I hate more than disappointing you. Even though it wasn't easy for you to get mad and make it clear that I was disappointing you, you did what you had to do. If you had not done that, I would not be where I am today. I wouldn't have had the career opportunities that made me who I am. I may not even have met my husband. That push changed my life forever. I am forever grateful.
You have always known what I need. Whether it's agreement, support, rebuke or a big, black pretend boyfriend; you have always been there when I needed someone or something. You have encouraged me and taught me things too numerous to count. Have no doubts. I love you.
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