I'm home sick from work today (not really sure what it wrong, the oncologist thinks it is a side effect from one of the chemo drugs but honestly I feel like I did before I was diagnosed so that is scary to me). I just dosed off and had a dream where I was talking to my friend Kevin (who died in 9/11), mid way through the conversation he asked me if I knew why I could talk to him. It clearly hadn't occurred to me until right then and I asked if I was dead. He said I wasn't but that it turned out I had Stage 5 Colon Cancer (which I don't even think exists, so you know that's bad, but it makes sense since I don't like to do things half assed....man there are a ton of colon cancer puns) and once "they decided you were going to die you were allowed to talk to dead people". Cool....except for the about to die part.
Then I was at the kid's pediatrician's office and they told me I had to go into a special office and a doctor would watch the kids. They told me I had Stage 5 cancer (which I already knew, thank you Kevin) and I needed to get my affairs in order.
Clearly it is one of those bizarre dreams but it really demonstrates my anxiety right now. I worry I have another tumor, which would of course be terrible and seems unlikely or that the chemo is messing with me so bad that I am going to need to stop one of the meds and that means I don't throw 100% at getting cured, which is only slightly less terrible in my book.
I'm better than I was yesterday but still feel pretty bad so if I don't improve tomorrow I will go back. In the meantime I have about 50 people coming to my house for Brooks's blessing on Sunday and being sidelined is not helping me get ready or my anxiety level. So, friends and family, don't judge....I just may have stage 5 colon cancer.
Tuesday, September 25, 2012
Tuesday, September 18, 2012
The Beginning
Figured this was as good a time as any to go back and fill everyone in on how this all started....well, who the hell knows how it all started, but how it started to effect me.
Lot's of people have actually asked me these details because they had symptoms they were worried about and wanted ....advice? ....peace of mind? not sure, but they asked and I told them and now I will tell you. I hope it does serve as some form of education to people and while I certainly hope no one I know ever has to go through this, you just may and I hope my experience will help someone go get checked out and treated sooner than I did.
***So this is a post about my symptoms of colon cancer. There is absolutely no dignity in colon cancer. Your colon is basically a transporter of poop so, this is not going to make me appear very sexy or cool to anyone but I feel like it's important and I lost my pride and humility a long time ago so, you've been warned.***
Basically I have never considered myself to be "regular". We've long joked in our house about how Wes has to spend thirty minutes in the bathroom every morning at the exact same time (you didn't think I was going to embarrass myself about talking about my symptoms without getting a shot in at Wes, did you?) and I could put that function off until it was completely convenient for me. This got worse for me during my pregnancy with Garrison but I figured it was a part of pregnancy and I felt like after delivery I went back to my "normal". On occasion I assumed I had hemorrhoids due to some bleeding but that came and went and I thought it was fairly normal too. Otherwise, the first real symptom that I can think of occurred right after my dad died in March of 2011. While planning his funeral, I got severe abdominal pain. I assumed it was from stress and eating crappy hospital food for the past several weeks but after a week of feeling terrible I went to my doctor and found out I had a UTI. This may not sound weird but I hadn't had a UTI since I was 19 and hadn't done anything that would normally result in a UTI so I was bit baffled (but thought I was being paranoid because my Dad had just died of cancer). I took the full course of antibiotics and enjoyed a few days of feeling better and then the pain started again. I had another UTI. This was not normal UTI pain either, as with the first time, it was severe abdominal pain but no pain when urinating or an urgent need to pee. My pee was the color of rust. My doctor sent me for a kidney ultrasound to see if I had a blockage or kidney stones. I didn't and luckily it seemed like the next round of antibiotics worked. The infection went away for good that time.
That summer I got pregnant with Brooks and I felt fine the first trimester. Brooks was originally a twin pregnancy but unfortunately, we lost one of the babies around 9 weeks. As with Garrison, I had no morning sickness. However, right as I entered the 2nd trimester, I started having pains that I thought might be round ligament pain, but as they progressed over a few days I suspected a UTI. They were very similar to what I had experienced in the spring. I called my OB and was tested for UTI but the test was negative. My urine again was the color of rust, even though I was drinking 100 ounces of water a day. I went back to my OB three times continually complaining of pain and fevers, they kept telling me to up my water intake and that I might be having symptoms because of my body absorbing the lost twin, constipation and that second pregnancies were harder than firsts. So, I dealt with the pain and fevers for two and a half weeks. Finally, I couldn't take it anymore and went to labor and delivery and was actually admitted. That night the pain was manageable and I actually worried that they were going to think I was being a baby. Around 4 am I started getting chills and asked for more blankets and another tylenol. It was too early to get more meds but the nurse brought me a blanket. I was shaking uncontrollably so she left to get me more blankets. By the time she came back I couldn't even catch my breath. She called for help, I got oxygen and was throwing up. They took my temperature and it was 104.1! There were about 5 nurses and doctors attending to me and they seriously seemed freaked out. I got a shot of dilaudid (heaven!) and started to feel better. The fever broke and I was doing better by the time they ordered a bunch of tests including an MRI. The assumption was that it was my appendix, even though I didn't think that was it since the issues seemed more chronic than acute to me, but whatever. The only thing they found was a swollen fallopian tube. I had a consult and they decided not to operate because it would be too risky to Brooks. I was feeling better so I was ok with that. So, I stayed two nights, went home and felt better most of the rest of the pregnancy. By better, I don't mean good, but better. I was exhausted but figured it was due to being anemic, which I was and to being really big....which I was. By 36 weeks I was having about 10 contractions an hour most of the time and had to have weekly NSTs....but I made it to 39 weeks and 3 days and Brooks was born healthy and I looked forward to feeling better post pregnancy.
My delivery was so much easier with Brooks than with Garrison so I was really optimistic about my recovery the first few days. I felt decent until we went home. The day I went home I started feeling bad and by that night I had what I thought was a stomach bug. Basically I had terrible diarrhea. After 3 days we called my Dr and were told (by the on call doctor) it might be a uterine infection or it might just be a bug and was prescribed antibiotics. Things got worst but my OB told me it didn't sound like a uterine infection after all and to stop the antibiotics and just take immodium. That stopped the diarrhea but not the terrible cramping that had accompanied it. I put up with it for almost 4 weeks, which looking back infuriates me. It felt a lot like what I had experienced in October so I asked my OB to refer me for an ultrasound so we could look at the fallopian tube again and possibly have it removed. The u/s (which was vaginal, btw...have mentioned that I had birthed a 9 pound baby from that very vagina 4 weeks earlier, so yeah that hurt like a mofo) showed what looked like retained placenta in my uterus but didn't even see my fallopian tube. They said I needed to wait a few weeks and get a repeat scan to be see if the placenta issue resolved itself. I felt so hopeless since they told me that the placenta would not cause the kind of pain I was experiencing and that maybe I should see a GI. So I went to my pcp the next day to get a referral. While there, I asked for a UTI test and low and behold it was positive. I thought I had my answer. Of course, I almost got mastitis from pumping and dumping for 24 hours when I started the antibiotic but that's not the focus of this post. I felt better. I looked forward to actually caring for my children and maybe even getting to enjoy my maternity leave. Unfortunately within a few days I felt bad again. I went back to my pcp and sure enough I had another UTI. I knew this was bad. No UTIs in 19 years and then 4 within one year made no sense whatsoever to me. So, luckily my pcp ordered a CT scan. I was so happy to finally be taken seriously.
So, I drank my Berry Flavored Berium, which sucked by the way, and had the CT scan on the Tuesday before Memorial Day weekend. My Dr called me only a few hours after the scan even though I was told to not expect a call for a few days. She told me that apparently the CT had shown retained placenta in my uterus (duh), and something in my colon that was either an abcess or gas. While I was happy it showed something, the idea that all of this pain was caused by me needing to fart was frustrating and beyond embarrassing. She told me I needed to repeat the scan that Thursday. Great. So, I went and got another two bottles of berry flavored berium and drank them. They did not taste any better than the first time around. I honestly thought about cancelling the appointment. I felt a bit better most of the day and figured if it was just gas, I could work on dealing with that....somehow. But I went anyway and actually by the time I got to the office the pain had come back as it did every day and was needing to breath through it like contractions by the time I went back for the scan. Basically the results were the same. My Dr said they wanted to do a 3rd scan but this time to do a rectal scan, which sounded fantastic! (for those of you reading this that don't know me that well, that is sarcasm) She told me we would schedule it after the weekend if I didn't feel better by then and suggested I try an enema to avoid the scan....so that Monday I finally worked up the nerve to do just that. And.....it didn't work. That's when I knew I was in trouble.
The pain continued that day and I finally decided I had had enough and drove myself to the ER (after checking the wait times on the website). They got me in quickly and got me some morphine (thankyouverymuch) and then did another ultrasound (vaginal....cue tears) and again talked about retained placenta, this time adding that there appeared to be an abcess near my ovary that could very well be causing my pain. I was admitted to the women and children unit (the cadillac of units at Fairfax Hospital) and scheduled for a D&C for the next day. My OB/GYN performed the D&C and informed me afterwards that there was not actually placenta in the uterus but some other tissue and that behind my uterus she found lots of blood that was concerning to her so she was consulting with a GI doctor....well, now that I think about it, she probably brought in the colorectal surgeon at that point if I remember correctly. It's weird how I thought I would never forget those days. I believe they quickly talked about the need for me to have a colonoscopy but were concerned I couldn't do it in the physical condition I was in at the time. They finally decided I would get a partial colonoscopy and therefore I had to be moved to the general surgical unit (the Yugo of units at Fairfax Hospital-- it is the unit that will be replaced when all of the renovations are done). I was moved Friday night and at 8:30 Saturday morning my OB called. When I answered the phone she said "oh, Susan. I thought I was calling Wes" That's when I knew I was fucked.
She asked me to call Wes and have him meet us at the hospital. I knew what she was going to say before she got there. The tissue in my uterus was cancerous. She did not believe I had uterine cancer, she believed the cells came from the colon. At this point my entire world view, comprehension of information, ability to think rationally went down the drain. At the time I thought the nurses on the unit must have hated me but I've since spent so much tme on that unit that I know I wasn't even close to being a really challenging patient. But I was not happy to be there and God help the nurse who had me the shift that I found out I was getting a roomate the same time I was expected to drink two gallons of "go lightly" which tastes like shit and makes you go anything but lightly, by the way. I had just found out I had cancer and now I needed to shit my brains out for 8-10 hours and I felt that having some privacy for this event was not too much to ask. I got the colonoscopy and a private room a week after being initially admitted to the hospital. The colonoscopy confirmed a tumor totally obstructing my colon and bulging outwards to my other organs. I got hooked up to TPN (which is basically an intravenous way of providing protein since I was not really eating at that point) which I would need to continue to have at home and was discharged that Wednesday for a few days while I awaited my surgery date to remove the tumor.
I went back to the hospital the following Monday (June 11) for my colon resection surgery. I knew I was also having at least a partial hysterectomy as well. The cancer had spread to my uterus and possibly both ovaries. Going in to surgery I had been given the option of having both ovaries removed regardless of the presence of cancerous cells (to decrease the chances of the cancer coming back or spreading there in the future). I had decided to take my chances and asked that they save one ovary if at all possible. Surgery was much more complicated than they had anticipated and I woke up in amazing pain and learned they had not been able to save either ovary.
Recovery was horrendous. The first day after surgery I was expected to get out of bed and walk three times. There was no way. I got out of bed and stood there for about 1 minute and that was hell. At this point most of our friends and family had learned of my diagnosis and were sending me messages telling me how I would beat this because I was so strong. I hated those messages. I felt like the weakest piece of poop (emotionally and physically) on the planet and was aggravated that either 1) people believed I was strong and were about to find out what a fraud I was or 2) were blowing smoke up my ass (no pun intended) because you just don't know what to say to a 39 year old with colon cancer. Now, I am of course thankful for those messages (and the continued encouragement) but they were really hard to hear, well, read at the time.
I was morbidly depressed and physically annihilated. Friends came and made me walk. I hated them at the time but they may have helped save my life. Nobody could get me to eat (this was completely new territory for me). Visitors got a real kick out of the sign above my bed reminding people "do not insert anything rectally".....people would seriously laugh out loud when they saw it. I found nothing remotely funny about directions regarding my rectum at the time. Everything about that stay was humiliating and demoralizing. I was miserable. Finally they gave me some antidepressants after tip toeing around the subject and me finally saying "hell yes, I'm depressed, please give me something". I was discharged a week after I was admitted, but if it was up to me, I would have stayed much longer. I dreaded facing the real world and was heartbroken to come to terms with what I was doing to my family.
Obviously this post has turned into something much bigger than I anticipated and I'm not sure if what I'm describing now can still be called the beginning. It was the beginning of my recovery, which was slow and terrible and included two return trips to the emergency room-- one accompanied by sirens in an ambulance. It was terrible to let my daughter see me so ill and I seriously can't believe how terrible I felt for weeks. It wasn't until the last few days of June, after I found out that the diagnosis was Stage IIB (I dreaded it was going to be stage 3 or possibly even 4) that I started to turn the corner and could eat. Once I started eating things got better fast....and now I wish my appetite was not so great as I have put back on almost 15 of the 70 pounds I initially lost. But that is incidental. Today, I am optimistic. Maybe even niaive-- the possibility that a PET scan in January will show cancer still exists in my body is not even a remote possibility to me. Sometimes I fear I am setting my expectations too high....but I can't go through the hell of chemo without believing it will be totally worth it.
Whew, sorry, this turned out a lot longer than I expected. It was a bit painful to write, hope it wasn't too painful to read. I know that when I got my diagnosis I scoured the internet for anyone like me with a similar diagnosis and experience so I feel an obligation to provide my experience should anyone else need the same. While I hope no one I know ever has this experience, unfortunately, it seems the odds may be against that so hopefully my story can at least help someone get diagnosed earlier and better know what to expect.
Lot's of people have actually asked me these details because they had symptoms they were worried about and wanted ....advice? ....peace of mind? not sure, but they asked and I told them and now I will tell you. I hope it does serve as some form of education to people and while I certainly hope no one I know ever has to go through this, you just may and I hope my experience will help someone go get checked out and treated sooner than I did.
***So this is a post about my symptoms of colon cancer. There is absolutely no dignity in colon cancer. Your colon is basically a transporter of poop so, this is not going to make me appear very sexy or cool to anyone but I feel like it's important and I lost my pride and humility a long time ago so, you've been warned.***
Basically I have never considered myself to be "regular". We've long joked in our house about how Wes has to spend thirty minutes in the bathroom every morning at the exact same time (you didn't think I was going to embarrass myself about talking about my symptoms without getting a shot in at Wes, did you?) and I could put that function off until it was completely convenient for me. This got worse for me during my pregnancy with Garrison but I figured it was a part of pregnancy and I felt like after delivery I went back to my "normal". On occasion I assumed I had hemorrhoids due to some bleeding but that came and went and I thought it was fairly normal too. Otherwise, the first real symptom that I can think of occurred right after my dad died in March of 2011. While planning his funeral, I got severe abdominal pain. I assumed it was from stress and eating crappy hospital food for the past several weeks but after a week of feeling terrible I went to my doctor and found out I had a UTI. This may not sound weird but I hadn't had a UTI since I was 19 and hadn't done anything that would normally result in a UTI so I was bit baffled (but thought I was being paranoid because my Dad had just died of cancer). I took the full course of antibiotics and enjoyed a few days of feeling better and then the pain started again. I had another UTI. This was not normal UTI pain either, as with the first time, it was severe abdominal pain but no pain when urinating or an urgent need to pee. My pee was the color of rust. My doctor sent me for a kidney ultrasound to see if I had a blockage or kidney stones. I didn't and luckily it seemed like the next round of antibiotics worked. The infection went away for good that time.
That summer I got pregnant with Brooks and I felt fine the first trimester. Brooks was originally a twin pregnancy but unfortunately, we lost one of the babies around 9 weeks. As with Garrison, I had no morning sickness. However, right as I entered the 2nd trimester, I started having pains that I thought might be round ligament pain, but as they progressed over a few days I suspected a UTI. They were very similar to what I had experienced in the spring. I called my OB and was tested for UTI but the test was negative. My urine again was the color of rust, even though I was drinking 100 ounces of water a day. I went back to my OB three times continually complaining of pain and fevers, they kept telling me to up my water intake and that I might be having symptoms because of my body absorbing the lost twin, constipation and that second pregnancies were harder than firsts. So, I dealt with the pain and fevers for two and a half weeks. Finally, I couldn't take it anymore and went to labor and delivery and was actually admitted. That night the pain was manageable and I actually worried that they were going to think I was being a baby. Around 4 am I started getting chills and asked for more blankets and another tylenol. It was too early to get more meds but the nurse brought me a blanket. I was shaking uncontrollably so she left to get me more blankets. By the time she came back I couldn't even catch my breath. She called for help, I got oxygen and was throwing up. They took my temperature and it was 104.1! There were about 5 nurses and doctors attending to me and they seriously seemed freaked out. I got a shot of dilaudid (heaven!) and started to feel better. The fever broke and I was doing better by the time they ordered a bunch of tests including an MRI. The assumption was that it was my appendix, even though I didn't think that was it since the issues seemed more chronic than acute to me, but whatever. The only thing they found was a swollen fallopian tube. I had a consult and they decided not to operate because it would be too risky to Brooks. I was feeling better so I was ok with that. So, I stayed two nights, went home and felt better most of the rest of the pregnancy. By better, I don't mean good, but better. I was exhausted but figured it was due to being anemic, which I was and to being really big....which I was. By 36 weeks I was having about 10 contractions an hour most of the time and had to have weekly NSTs....but I made it to 39 weeks and 3 days and Brooks was born healthy and I looked forward to feeling better post pregnancy.
My delivery was so much easier with Brooks than with Garrison so I was really optimistic about my recovery the first few days. I felt decent until we went home. The day I went home I started feeling bad and by that night I had what I thought was a stomach bug. Basically I had terrible diarrhea. After 3 days we called my Dr and were told (by the on call doctor) it might be a uterine infection or it might just be a bug and was prescribed antibiotics. Things got worst but my OB told me it didn't sound like a uterine infection after all and to stop the antibiotics and just take immodium. That stopped the diarrhea but not the terrible cramping that had accompanied it. I put up with it for almost 4 weeks, which looking back infuriates me. It felt a lot like what I had experienced in October so I asked my OB to refer me for an ultrasound so we could look at the fallopian tube again and possibly have it removed. The u/s (which was vaginal, btw...have mentioned that I had birthed a 9 pound baby from that very vagina 4 weeks earlier, so yeah that hurt like a mofo) showed what looked like retained placenta in my uterus but didn't even see my fallopian tube. They said I needed to wait a few weeks and get a repeat scan to be see if the placenta issue resolved itself. I felt so hopeless since they told me that the placenta would not cause the kind of pain I was experiencing and that maybe I should see a GI. So I went to my pcp the next day to get a referral. While there, I asked for a UTI test and low and behold it was positive. I thought I had my answer. Of course, I almost got mastitis from pumping and dumping for 24 hours when I started the antibiotic but that's not the focus of this post. I felt better. I looked forward to actually caring for my children and maybe even getting to enjoy my maternity leave. Unfortunately within a few days I felt bad again. I went back to my pcp and sure enough I had another UTI. I knew this was bad. No UTIs in 19 years and then 4 within one year made no sense whatsoever to me. So, luckily my pcp ordered a CT scan. I was so happy to finally be taken seriously.
So, I drank my Berry Flavored Berium, which sucked by the way, and had the CT scan on the Tuesday before Memorial Day weekend. My Dr called me only a few hours after the scan even though I was told to not expect a call for a few days. She told me that apparently the CT had shown retained placenta in my uterus (duh), and something in my colon that was either an abcess or gas. While I was happy it showed something, the idea that all of this pain was caused by me needing to fart was frustrating and beyond embarrassing. She told me I needed to repeat the scan that Thursday. Great. So, I went and got another two bottles of berry flavored berium and drank them. They did not taste any better than the first time around. I honestly thought about cancelling the appointment. I felt a bit better most of the day and figured if it was just gas, I could work on dealing with that....somehow. But I went anyway and actually by the time I got to the office the pain had come back as it did every day and was needing to breath through it like contractions by the time I went back for the scan. Basically the results were the same. My Dr said they wanted to do a 3rd scan but this time to do a rectal scan, which sounded fantastic! (for those of you reading this that don't know me that well, that is sarcasm) She told me we would schedule it after the weekend if I didn't feel better by then and suggested I try an enema to avoid the scan....so that Monday I finally worked up the nerve to do just that. And.....it didn't work. That's when I knew I was in trouble.
The pain continued that day and I finally decided I had had enough and drove myself to the ER (after checking the wait times on the website). They got me in quickly and got me some morphine (thankyouverymuch) and then did another ultrasound (vaginal....cue tears) and again talked about retained placenta, this time adding that there appeared to be an abcess near my ovary that could very well be causing my pain. I was admitted to the women and children unit (the cadillac of units at Fairfax Hospital) and scheduled for a D&C for the next day. My OB/GYN performed the D&C and informed me afterwards that there was not actually placenta in the uterus but some other tissue and that behind my uterus she found lots of blood that was concerning to her so she was consulting with a GI doctor....well, now that I think about it, she probably brought in the colorectal surgeon at that point if I remember correctly. It's weird how I thought I would never forget those days. I believe they quickly talked about the need for me to have a colonoscopy but were concerned I couldn't do it in the physical condition I was in at the time. They finally decided I would get a partial colonoscopy and therefore I had to be moved to the general surgical unit (the Yugo of units at Fairfax Hospital-- it is the unit that will be replaced when all of the renovations are done). I was moved Friday night and at 8:30 Saturday morning my OB called. When I answered the phone she said "oh, Susan. I thought I was calling Wes" That's when I knew I was fucked.
She asked me to call Wes and have him meet us at the hospital. I knew what she was going to say before she got there. The tissue in my uterus was cancerous. She did not believe I had uterine cancer, she believed the cells came from the colon. At this point my entire world view, comprehension of information, ability to think rationally went down the drain. At the time I thought the nurses on the unit must have hated me but I've since spent so much tme on that unit that I know I wasn't even close to being a really challenging patient. But I was not happy to be there and God help the nurse who had me the shift that I found out I was getting a roomate the same time I was expected to drink two gallons of "go lightly" which tastes like shit and makes you go anything but lightly, by the way. I had just found out I had cancer and now I needed to shit my brains out for 8-10 hours and I felt that having some privacy for this event was not too much to ask. I got the colonoscopy and a private room a week after being initially admitted to the hospital. The colonoscopy confirmed a tumor totally obstructing my colon and bulging outwards to my other organs. I got hooked up to TPN (which is basically an intravenous way of providing protein since I was not really eating at that point) which I would need to continue to have at home and was discharged that Wednesday for a few days while I awaited my surgery date to remove the tumor.
I went back to the hospital the following Monday (June 11) for my colon resection surgery. I knew I was also having at least a partial hysterectomy as well. The cancer had spread to my uterus and possibly both ovaries. Going in to surgery I had been given the option of having both ovaries removed regardless of the presence of cancerous cells (to decrease the chances of the cancer coming back or spreading there in the future). I had decided to take my chances and asked that they save one ovary if at all possible. Surgery was much more complicated than they had anticipated and I woke up in amazing pain and learned they had not been able to save either ovary.
Recovery was horrendous. The first day after surgery I was expected to get out of bed and walk three times. There was no way. I got out of bed and stood there for about 1 minute and that was hell. At this point most of our friends and family had learned of my diagnosis and were sending me messages telling me how I would beat this because I was so strong. I hated those messages. I felt like the weakest piece of poop (emotionally and physically) on the planet and was aggravated that either 1) people believed I was strong and were about to find out what a fraud I was or 2) were blowing smoke up my ass (no pun intended) because you just don't know what to say to a 39 year old with colon cancer. Now, I am of course thankful for those messages (and the continued encouragement) but they were really hard to hear, well, read at the time.
I was morbidly depressed and physically annihilated. Friends came and made me walk. I hated them at the time but they may have helped save my life. Nobody could get me to eat (this was completely new territory for me). Visitors got a real kick out of the sign above my bed reminding people "do not insert anything rectally".....people would seriously laugh out loud when they saw it. I found nothing remotely funny about directions regarding my rectum at the time. Everything about that stay was humiliating and demoralizing. I was miserable. Finally they gave me some antidepressants after tip toeing around the subject and me finally saying "hell yes, I'm depressed, please give me something". I was discharged a week after I was admitted, but if it was up to me, I would have stayed much longer. I dreaded facing the real world and was heartbroken to come to terms with what I was doing to my family.
Obviously this post has turned into something much bigger than I anticipated and I'm not sure if what I'm describing now can still be called the beginning. It was the beginning of my recovery, which was slow and terrible and included two return trips to the emergency room-- one accompanied by sirens in an ambulance. It was terrible to let my daughter see me so ill and I seriously can't believe how terrible I felt for weeks. It wasn't until the last few days of June, after I found out that the diagnosis was Stage IIB (I dreaded it was going to be stage 3 or possibly even 4) that I started to turn the corner and could eat. Once I started eating things got better fast....and now I wish my appetite was not so great as I have put back on almost 15 of the 70 pounds I initially lost. But that is incidental. Today, I am optimistic. Maybe even niaive-- the possibility that a PET scan in January will show cancer still exists in my body is not even a remote possibility to me. Sometimes I fear I am setting my expectations too high....but I can't go through the hell of chemo without believing it will be totally worth it.
Whew, sorry, this turned out a lot longer than I expected. It was a bit painful to write, hope it wasn't too painful to read. I know that when I got my diagnosis I scoured the internet for anyone like me with a similar diagnosis and experience so I feel an obligation to provide my experience should anyone else need the same. While I hope no one I know ever has this experience, unfortunately, it seems the odds may be against that so hopefully my story can at least help someone get diagnosed earlier and better know what to expect.
Time Flies When You're Having Fun
A colleague asked me today how many sessions of chemo I have had. I wasn't sure if it was 4 or 5. Not sure if that is an effect of chemo brain, just having so much going on in my life or something else but I was a bit surprised to not know the answer right off the top of my head. Apparently it is 5, which means at this time tomorrow I will be halfway done. Yes! It is going to feel really good....emotionally anyway, to be at the halfway mark. Physically, it will feel crummy, which I always get a bit depressed about the Tuesday before chemo. Just knowing that tomorrow will begin 5-7 days of feeling really crappy is a bit demoralizing....it's like the last day of vacation or the Sunday night blues that some people get. But, luckily I only have 6 more of these left. I can do this!
In other news, I have a bunch of other blog posts that I have started but haven't had time to finish that I will try to get up tonight. Specifically, I started chronicling all the symptoms, etc that got me here. Seems like a lifetime ago and it has been really interesting for me to "relive" that time. It's long and probably not really captivating reading unless you are one of those people who wonder about such things, but enough people have asked either out of plain curiosity or fear of their own symptoms, I thought I'd write about it. So, stay tuned.
In other news, I have a bunch of other blog posts that I have started but haven't had time to finish that I will try to get up tonight. Specifically, I started chronicling all the symptoms, etc that got me here. Seems like a lifetime ago and it has been really interesting for me to "relive" that time. It's long and probably not really captivating reading unless you are one of those people who wonder about such things, but enough people have asked either out of plain curiosity or fear of their own symptoms, I thought I'd write about it. So, stay tuned.
Wednesday, September 12, 2012
I'm With Stupid
Top Ten Ways You Know You Are Getting Dumber....
10. You realize when you have 4 miles worth of gas left in the tank (and you are 8 miles from home) that you don't have your wallet.
9. You can't remember simple words like "pen" and every conversation involves an impromptu game of $100,000 Pyramid :"something you write with, it's thin and has ink in it..."
8. You don't keep track of who you've sent birth announcements to or who you've invited to Brooks's Blessing so some people got two announcements and no invite and others got two invites and no announcements.
7. You- the one with neoropathy- go to the store to buy tissues for your constantly stuffed up/runny/bloody nose and somehow manage to buy tissues that are actually COLD. Seriously, they have something in them that makes them cold to the touch. Brilliant.
6. You leave the house with the keys to your husbands car in your purse.
5. You left another set of keys to your husbands car in the car, with doors unlocked.
4. You basically need GPS to get anywhere beyond your neighborhood at this point.
3. You don't get suspicious early enough when you don't hear your 3 year old for a solid ten minutes, only to find she has annihilated your chapstick collection, unravelled an entire container of dental floss, and squirted $45 face wash all over the handwoven rug your in-laws gave you.
2. You tell your husband you aren't going to spend any more money for a couple of months and then elect to have the receipt from an LL Bean shopping spree emailed....to his e-mail address.
And the #1 way you know you are getting dumber....you announce to the Facebook world that you are halfway done with chemo when in reality you have only completed 5, not 6 cycles.
Seriously, could I get any dumber?Unfortunately, from what I read, I just may. So for those of you keepng track, I am balding, have really jacked up feet, am getting fat again, and now I'm dumb too. Quite a prize. Quite a prize.
In my defense, I don't even know the word for pen, how can I be expected to count? Ugh! Definitely a tad discouraged but on the bright side, I can just recycle my "time flies" blog post in two weeks. I'll be sure to use that free time not getting a pedicure.
10. You realize when you have 4 miles worth of gas left in the tank (and you are 8 miles from home) that you don't have your wallet.
9. You can't remember simple words like "pen" and every conversation involves an impromptu game of $100,000 Pyramid :"something you write with, it's thin and has ink in it..."
8. You don't keep track of who you've sent birth announcements to or who you've invited to Brooks's Blessing so some people got two announcements and no invite and others got two invites and no announcements.
7. You- the one with neoropathy- go to the store to buy tissues for your constantly stuffed up/runny/bloody nose and somehow manage to buy tissues that are actually COLD. Seriously, they have something in them that makes them cold to the touch. Brilliant.
6. You leave the house with the keys to your husbands car in your purse.
5. You left another set of keys to your husbands car in the car, with doors unlocked.
4. You basically need GPS to get anywhere beyond your neighborhood at this point.
3. You don't get suspicious early enough when you don't hear your 3 year old for a solid ten minutes, only to find she has annihilated your chapstick collection, unravelled an entire container of dental floss, and squirted $45 face wash all over the handwoven rug your in-laws gave you.
2. You tell your husband you aren't going to spend any more money for a couple of months and then elect to have the receipt from an LL Bean shopping spree emailed....to his e-mail address.
And the #1 way you know you are getting dumber....you announce to the Facebook world that you are halfway done with chemo when in reality you have only completed 5, not 6 cycles.
Seriously, could I get any dumber?Unfortunately, from what I read, I just may. So for those of you keepng track, I am balding, have really jacked up feet, am getting fat again, and now I'm dumb too. Quite a prize. Quite a prize.
In my defense, I don't even know the word for pen, how can I be expected to count? Ugh! Definitely a tad discouraged but on the bright side, I can just recycle my "time flies" blog post in two weeks. I'll be sure to use that free time not getting a pedicure.
Thursday, September 6, 2012
Those are Some Big Shoes to Fill
Literally. Wes has some big shoes to fill. I know this because when I just went down to get Brooks a bottle (another topic that I will get to momentarily) and I stepped on the hardwoods on the main floor (in my bare feet) I was in immediate pain from the cold of the floor. I decided to power through it basically ran to the kitchen....which has tile floor....yowza! So I immediately ran back to the place where Wes and I constantly argue over him leaving his shoes in the middle of the floor and slipped a toasty warm, quite large Allen Edmonds loafer on my foot. You are probably wondering why a boy with such expensive taste in shoes would leave them haphazardly in the middle of the room? Good luck with that one, but for once out of 413 times I was happy they were there. I was able to make the bottle (after freezing my hands off washing them in water that had not warmed up enough yet) and walk it up the stairs while wearing the shoes....a big no no in this house for a little girl who always has to be reminded she can't wear mommy's shoes down the stairs since they are too big....I guess now is the time to pull out the "do as I say,not as I do" card. And I suppose I need to order some new slippers.
So Brooks. Darn kid stopped sleeping through the night. During a chemo week. I really do think he's teething and I guess most kids wake up at least once when teething but um, we're tired, so knock it off. You spoiled us for two months and we are not willing to go back to the way it was before that. You know, when you cried and Daddy got up and changed and fed you and mommy slept or maybe woke up but didn't remember it because she takes ambien, but the mommy felt guilty the next day. Mommy was raised Irish Catholic, she doesn't need any more guilt. So what do you say to sleeping through the night again, ok sweet boy? Thanks. I'm glad we had this talk.
Otherwise, I have insomnia and a headache. Tomorrow is going to suck. Before cancer there was simply not enough of me to go around to all the meetings we have and handle the other functions of my job, and now that I am in essence working a reduced schedule, it's pretty stressful. And I feel crummy for 10 days a month, so it is effecting my self esteem a bit. I take pride in my work and have fairly high standards for my staff so this has been a huge lesson in not sweating the small stuff....which is made easier by the fact that our job has very little small stuff. We usually have insane fires to put out or significant program overhauls that needed to be implemented yesterday. But at least I'm not sweating the small stuff, whatever that is.
So Brooks. Darn kid stopped sleeping through the night. During a chemo week. I really do think he's teething and I guess most kids wake up at least once when teething but um, we're tired, so knock it off. You spoiled us for two months and we are not willing to go back to the way it was before that. You know, when you cried and Daddy got up and changed and fed you and mommy slept or maybe woke up but didn't remember it because she takes ambien, but the mommy felt guilty the next day. Mommy was raised Irish Catholic, she doesn't need any more guilt. So what do you say to sleeping through the night again, ok sweet boy? Thanks. I'm glad we had this talk.
Otherwise, I have insomnia and a headache. Tomorrow is going to suck. Before cancer there was simply not enough of me to go around to all the meetings we have and handle the other functions of my job, and now that I am in essence working a reduced schedule, it's pretty stressful. And I feel crummy for 10 days a month, so it is effecting my self esteem a bit. I take pride in my work and have fairly high standards for my staff so this has been a huge lesson in not sweating the small stuff....which is made easier by the fact that our job has very little small stuff. We usually have insane fires to put out or significant program overhauls that needed to be implemented yesterday. But at least I'm not sweating the small stuff, whatever that is.
Wednesday, September 5, 2012
One Third of the Way Done
Just finished my fourth chemo treatment, only 8 more to go! This will be a short blog post because I am on my phone and my fingers are not cooperating at all...I guess a form of the neuropathy? Actually, it is really bad so I think that is all for now. Hopefully I can post better tonight from the laptop, we'll see.
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