I can certainly feel the difference between a GemCis week (last week), and a Gemzar-only week (this week). Cisplatin has more side effects, and makes me more tired, than Gemzar only. Today I got another booster shot of Neulasta to stimulate the white blood cell count and keep up my platlet count.
From an article I recently read (available here), Neulasta shots apparently are incredibly expensive:
"The hospital billed her insurer $14,865 for Neulasta, a shot to boost
white blood cells and help her tolerate chemotherapy. Several cancer
specialists said Neulasta usually costs less than half that amount, but
the charge was $12,000 for Tyree's friend and blog postings by other
cancer patients tell similar stories. The worst part: A much cheaper alternative is available – a different
formulation of Neulasta – but many patients aren't offered that option.
There's even a cheaper way to get Neulasta, but hospitals make a lot of
money giving the shot instead of teaching a patient or a caregiver how
to do that."
I'm thankful that my insurance coverage is solid, and all I have is a $25 co-pay. But it does point to the disparities in our health-care delivery system. I'll save that discussion for another day.
Tuesday, February 28, 2012
Monday, February 27, 2012
Chemo day 28 - round 2.2
I'm back at the cancer center for another round of chemo. My port was blocked by a clot, so it took a while to flush it out and get a good blood draw. Eventually it worked. My results are at the low end of the normal range, but generally ok (WBC 4.1, hemoglobin 13.0, hematocrit 37.2, platelets 298, neutrophils/ANC 2.5).
While waiting for the results, I met with my oncologist. She was pleased that the constipation was under control last week, and noted that this week was Gemzar only, so I should not be feeling as much nausea. I hope so. We discussed how I held felt more lethargic last week, and she will be paying close attention to my red blood cell counts to make sure that I am not anemic. Otherwise, she said that it could simply be the cumulative effects of the chemo. She said that it takes 3 or 4 weeks to recover from each chemo session, so I should not be surprised as it all adds up.
We also discussed what to expect after chemo ends in late April. She said that, after 4 weeks or so, I would have another round of PET and CT scans to see if there is any evidence of distant metastasis. If so, I would not proceed with surgery, but instead the team would reconvene and see what the next treatment should be. There is about a 25% chance of that happening. If the scans show no evidence of distant metasteses, then I'd be scheduled for surgery, likely in early to mid June. A cautionary note is that the scans are not conclusive - they only show metasteses that are big enough, so microscopic spreading likely would be missed. So it's possible that I could have the surgery and still later have the cancer pop up somewhere else. They closely watch for 5 years, figuring that if nothing pops up by then, it probably won't.
Meanwhile, assuming the surgery goes forward, I need to wrap my mind around life without a bladder or prostate. (Last week my urologist told me by email that they remove the prostate because in 45% of cases with my type of cancer, they find that the cancer has spread to the prostate. So if they leave it in, then they leave a diseased organ behind in nearly half the cases. And bladder cancer in the prostate is a lot worse than most prostate cancers, which typically is a much slower-growing disease with lower risk to the rest of the body.) I'm still reading up on the multiple types of neobladder options, but I've been more concerned about the side effects of the surgery - 10% chance of blocked ureters, 20% chance of incontinence, and 50% chance of impotence. That sucks. I think that I'm going to check in with other doctors regarding different neobladder procedures, as well as robotic-assisted nerve-sparing surgery.
But first things first. Get through today's chemo. Get a booster shot tomorrow. Slog through the week. Be regular. Don't bleed. Keep my counts up. Avoid sick people. Repeat again, and again.
While waiting for the results, I met with my oncologist. She was pleased that the constipation was under control last week, and noted that this week was Gemzar only, so I should not be feeling as much nausea. I hope so. We discussed how I held felt more lethargic last week, and she will be paying close attention to my red blood cell counts to make sure that I am not anemic. Otherwise, she said that it could simply be the cumulative effects of the chemo. She said that it takes 3 or 4 weeks to recover from each chemo session, so I should not be surprised as it all adds up.
We also discussed what to expect after chemo ends in late April. She said that, after 4 weeks or so, I would have another round of PET and CT scans to see if there is any evidence of distant metastasis. If so, I would not proceed with surgery, but instead the team would reconvene and see what the next treatment should be. There is about a 25% chance of that happening. If the scans show no evidence of distant metasteses, then I'd be scheduled for surgery, likely in early to mid June. A cautionary note is that the scans are not conclusive - they only show metasteses that are big enough, so microscopic spreading likely would be missed. So it's possible that I could have the surgery and still later have the cancer pop up somewhere else. They closely watch for 5 years, figuring that if nothing pops up by then, it probably won't.
Meanwhile, assuming the surgery goes forward, I need to wrap my mind around life without a bladder or prostate. (Last week my urologist told me by email that they remove the prostate because in 45% of cases with my type of cancer, they find that the cancer has spread to the prostate. So if they leave it in, then they leave a diseased organ behind in nearly half the cases. And bladder cancer in the prostate is a lot worse than most prostate cancers, which typically is a much slower-growing disease with lower risk to the rest of the body.) I'm still reading up on the multiple types of neobladder options, but I've been more concerned about the side effects of the surgery - 10% chance of blocked ureters, 20% chance of incontinence, and 50% chance of impotence. That sucks. I think that I'm going to check in with other doctors regarding different neobladder procedures, as well as robotic-assisted nerve-sparing surgery.
But first things first. Get through today's chemo. Get a booster shot tomorrow. Slog through the week. Be regular. Don't bleed. Keep my counts up. Avoid sick people. Repeat again, and again.
Friday, February 24, 2012
Chemo day 25 - still slogging
I feel like this second round of chemo has been more exhausting than the first round. Perhaps it's the cumulative effect, but I feel like I have less energy than the same time during my first round. I am unable to concentrate for long periods, and frequently want to close my eyes and rest. It's frustrating, because I have not been doing anything that would generate such weariness. I know that my cells are consuming a large amount of energy battling the chemically-induced restrictions on reproduction, but it's nothing I can feel, and there's nothing I can do about it except to wait it out. Fortunately, I am so far successfully balancing between controlling my ever-present nausea, avoiding constipation, but not succumbing to diarrhea. Thank heaven for small favors.
Thursday, February 23, 2012
Chemo Day 24 - lethargic
I have been feeling wrung out all day. Yesterday I felt ok until the evening, when I felt more nauseated. Maybe it was because I was watching the Republican presidential debate. After a restless night, I got up at around 7:30 am but had little energy. I worked a bit from home, then laid back down. My GI tract was (and still is) flip-flopping between nausea and indignation. Yesterday I only took Ondansetron (Zofran), but today I added the Prochorperazine (Compazine) into the mix, staggering the doses. So far the drugs have worked to keep the nausea in check, but it's been uncomfortable. I'm also taking MiraLax twice a day, and am hoping that my system stays on a near-normal level.
I eventually made my way into the office, but continue to feel ragged. I'll slog through the afternoon, teach my law class this evening, then hope things get better tomorrow.
I eventually made my way into the office, but continue to feel ragged. I'll slog through the afternoon, teach my law class this evening, then hope things get better tomorrow.
Wednesday, February 22, 2012
Chemo day 23 - planning for the future
I'm feeling ok today, all things considered. I can tell my cells are at battle with the chemo drugs, and I am at the office but moving more slowly than usual. I'm just taking one of the anti-nausea medicines (ondansetron), which seems to be keeping the gag reflex at bay. Along with the MiraLax, so far I seem to be triangulating within that elusive sweet spot somewhere between constipation, diarrhea, and vomiting, although at times I feel myself veering close to one side, then another.
I recently had the following email exchange with my medical team at Johns Hopkins, where I will have my surgery once chemo is over.
<start>
Dr. Schoenberg
and Nurse Rogers:
Consistent with our
discussions, and my consultations with Doctors Kim and Song at JHU, I am
completing my first round of chemotherapy (GemCis) under the direction of Dr, Aragon-Ching
and GW. I am expecting to have three more rounds with a projected completion in
early May. I then would expect to be
scheduled for RC and neobladder by Dr.
Schoenberg. I have some questions to help my preparation,
and would appreciate your thoughts.
1. I understand that the standard surgical
procedure is cystoprostatectomy with pelvic lymphadenectomy. I am concerned about the side effects of the
prostate removal, and am trying to understand why a cystoprostatectomy is
preformed instead of a cystectomy. Is it
advisable/possible to do a biopsy or other testing first to determine if my
bladder cancer has spread to my prostate, and if so, when would that be done?
SCHOENBERG RESPONSE: BASED ON STUDIES OF CYSTECTOMY SPECIMENS, DAVID WOOD
ET AL. PUBLISHED A REPORT DETAILING A 45% INCIDENCE OF OCCULT
BLADDER CANCER INVOLVING THE PROSTATE IN PATIENTS UNDERGOING SURGERY FOR
BLADDER CANCER. IF WE LEAVE THE PROSTATE IN WE LEAVE CANCER BEHIND IN ABOUT 1/2
OF THE PATIENTS.
2. What if anything should I be doing in advance
to prepare for the surgery, and improve my recovery? Are there any particular exercises that I
should be focusing on the strengthen my abdominal floor or otherwise make my
recovery easier?
SCHOENBERG RESPONSE: EXERCISE
IN GENERAL IS GOOD. NO EVIDENCE THAT PREOP KEGELS HELP RETURN OF CONTINENCE.
3. What specific type of neobladder surgery will
Dr. Schoenberg
perform? I understand that there are
multiple variations, including bowel orthotopic neobladder and continent
urinary reservoir using the large intestine/colon. I would appreciate knowing what exactly he
will be doing, so I can do more reading and research.
SCHOENBERG RESPONSE: STUDER
TYPE MADE ENTIRELY OF SMALL INTESTINE
4. I know Dr. Schoenberg is highly regarded, but
I nevertheless would like to know how many surgeries of type that he will do on
me has Dr. Schoenberg done, and what are the complication rates of his
patients?
SCHOENBERG RESPONSE: APPROXIMATELY
300. COMPLICATIONS ARE CONSISTENT WITH THE PUBLISHED LITERATURE AND INCLUDE:
URETER STRICTURES IN 9.9 %, INCONTINENCE IN 15%, URINARY TRACT INFECTIONS IN
20%.
5. What is the minimum and maximum amount of
time after completing chemotherapy that the surgery should be done?
SCHOENBERG RESPONSE: 4-8
WEEKS FOLLOWING COMPLETION OF CHEMO.
<end>
What this means is that, assuming that I can complete chemo, I'll probably have the surgery in early June, which will put me out of commission for June and July.
Tuesday, February 21, 2012
Chemo day 22 - let's do it again
Today I started the next round of chemo by infusion. Today's menu was identical to day 1: 3 anti-nausea drugs, a steroid, then the gemcitabine/cisplatin combination. It only took 6 hours this time -- a bit shorter than day 1, perhaps because I didn't visit with my oncologist this week. I'm drinking massive quantities of fluid today, trying to flush the
poisons out of my kidneys. I've run through 3 liters orally so far
today, and had another 3 liters or so by IV, so there is little risk of
dehydration today. Aside from the frequent bio breaks, today was so exciting that I dozed for a while, aided by George Winston, Jim Brickman, and Liz Story on the piano. No fire alarms this time.
Before starting chemo this morning, the lab ran my blood to see how I was doing. The week off did wonders: Virtually all of my counts were in the normal range, including a remarkable resurgence of my platelets. I guess it's ok to bleed now.
Having run the gauntlet once already, I feel somewhat better prepared. I altered my prep strategy by resuming MiraLax on Sunday, and now am taking it twice a day, hoping that will keep me regular. I'm also going to better regulate and track the dosage and frequency of the anti-emetic drugs. I have two types, and need to learn more about how they interact and influence my gut. Stuff for a future blog post. The nurse at the Cancer Center said that GemCis tears up the GI tract, and each patient responds differently. It's very much an art, and not a science, she said, despite what the docs want you to think.
I have noticed that my hair comes out more easily. I had read that hair loss, if it happens, may occur after the third week. I'm on schedule. I'm not losing massive quantities, but notice that when I wash my hair, or comb it, or run my fingers through it while in the hot tub, there is more hair than usual in my fingers or the comb. I'm not overly concerned about losing my hair, however. Vanity of appearance has never been one of my stronger sins, probably because I realized early on that there's only so much good putting lipstick on a pig will do. I'm slightly curious what I would look like bald, but not so curious that I've done anything about it. If it happens, eh. It will grow back (maybe). On the upside, being bald will would save time during my morning routine. During the Summer of '85, immediately before Jennifer and I spent 3 months backpacking through Europe, I had my longish hair whacked back with a "finger cut", e.g., about 1/2 inch long all over my head. While in Europe, I combed my head with a towel, and didn't care how it looked. Maybe the Spring of '12 will feature a return to the towel-based method of hair care.
Before starting chemo this morning, the lab ran my blood to see how I was doing. The week off did wonders: Virtually all of my counts were in the normal range, including a remarkable resurgence of my platelets. I guess it's ok to bleed now.
Having run the gauntlet once already, I feel somewhat better prepared. I altered my prep strategy by resuming MiraLax on Sunday, and now am taking it twice a day, hoping that will keep me regular. I'm also going to better regulate and track the dosage and frequency of the anti-emetic drugs. I have two types, and need to learn more about how they interact and influence my gut. Stuff for a future blog post. The nurse at the Cancer Center said that GemCis tears up the GI tract, and each patient responds differently. It's very much an art, and not a science, she said, despite what the docs want you to think.
I have noticed that my hair comes out more easily. I had read that hair loss, if it happens, may occur after the third week. I'm on schedule. I'm not losing massive quantities, but notice that when I wash my hair, or comb it, or run my fingers through it while in the hot tub, there is more hair than usual in my fingers or the comb. I'm not overly concerned about losing my hair, however. Vanity of appearance has never been one of my stronger sins, probably because I realized early on that there's only so much good putting lipstick on a pig will do. I'm slightly curious what I would look like bald, but not so curious that I've done anything about it. If it happens, eh. It will grow back (maybe). On the upside, being bald will would save time during my morning routine. During the Summer of '85, immediately before Jennifer and I spent 3 months backpacking through Europe, I had my longish hair whacked back with a "finger cut", e.g., about 1/2 inch long all over my head. While in Europe, I combed my head with a towel, and didn't care how it looked. Maybe the Spring of '12 will feature a return to the towel-based method of hair care.
Monday, February 20, 2012
Chemo week 3 recap - a good day to die
This past week, I almost forgot I had cancer. I wish I could say I did forget, but that knowledge that there is a malignant growth in my body trying to kill me isn't something that I have been able to put totally out of my mind. It's more accurate to say that, during this past week, I was gratefully free from most adverse side effects of chemotherapy. But I also was more attuned to the simple pleasures of life, and more grateful for the events of each day.
Certain Native American tribes have a saying, "today is a good day to die". BC (Before Cancer), I would have associated that saying with a morbid death wish. Now, I understand that it is associated with a desire to live each day at its fullest, aware that life is short and uncertain, and accepting each morning as a gift from God. With such an attitude -- free from regret over unresolved past misdeeds or failed plans, or from endlessly deferring the development of the soul in exchange for soul-crushing daily drudgery -- then a well-lived day is a good day to die. And the next day is a gift from God, another day to be well-lived on its own terms, and in accord with an appropriate balance of life. I have a better appreciation of this concept now, although I can do better in keeping the important priorities at the forefront of my consciousness.
Jennifer and I enjoyed our time in NYC last week. On Thursday, we walked the High Line -- a new urban park made out of the elevated railroad on the West Side of Manhattan, from 14th to 30th Streets. It was cold, blustery, and rainy, and we walked for 4 or 5 miles, enjoying each others' company, talking, and in no particular hurry. BC, I likely would have been less patient, more intent on doing something instead of being in the now. But on this walk, my cancer-laced bladder and I was content to meander and go nowhere fast. We tried a new BBQ joint on West 23rd ("Rub" - recommended), then wound our way back to our hotel (the Casablanca on West 43rd - my new favorite in the City). I ended up skipping the first day of the conference, even though I had planned to attend the afternoon session on the Federal Circuit. What I was doing seemed more important, and in retrospect I think I chose correctly. I made up for it on Friday, spending time at the office and at the conference, including an hour-long speech/presentation as the concluding speaker. Fewer than half the people fell asleep or walked out, so it must have been a success.
Jennifer and I managed to see 4 plays while in NYC: Rock Of Ages, a collection of 80's head banging rock songs stitched together with an almost coherent boy-meets-girl, boy-loses-girl, disappointment and reconciliation story. It was great silly fun. Godspell, a revival of the 70's musical drawn on the Gospel of Matthew, with lots of energetic, reverential fun. The Lion, The Witch, And The Wardrobe, an ingenious two-person play with minimal props and an utterly engaging method. And The Fantasticks, which Jennifer somehow had never seen. We had a wonderful time, and I am grateful that I could enjoy a respite from chemotherapy to do so.
Today was Kirsten's 17th birthday. We went out and bought her a motorcycle -- a 2002 Honda Rebel with 6300 miles (my gift was half of the cost). We enjoyed a family dinner and had a most pleasant time. I am aware of how, during this time, the family is pulling closer together. Shared challenges and shared burdens can increase family cohesion. It is a silver lining to an otherwise dark cloud, and one that gladdens my heart. Likewise, at church one of my friends movingly told me how she reads every entry on this blog, and it inspired her to try live her life better. It once again reminded me that I cannot pretend to understand God's hand in my life, or to pretend that my ways are his ways. I do not recommend cancer as a way of building family unity or as an object lesson to others, but to the extent that others find some benefit to my musings, then that's ok. Such comments reinforce my belief of the importance of community, of our virtual village, of the fact that we give and receive love and support and concern, and in so doing, we strengthen each other as well as ourselves.
Thank you, God, for the gift of life, and for family and friends. I can genuinely say that today was a good day to die. But my life has been prolonged, and for that I am grateful.
Certain Native American tribes have a saying, "today is a good day to die". BC (Before Cancer), I would have associated that saying with a morbid death wish. Now, I understand that it is associated with a desire to live each day at its fullest, aware that life is short and uncertain, and accepting each morning as a gift from God. With such an attitude -- free from regret over unresolved past misdeeds or failed plans, or from endlessly deferring the development of the soul in exchange for soul-crushing daily drudgery -- then a well-lived day is a good day to die. And the next day is a gift from God, another day to be well-lived on its own terms, and in accord with an appropriate balance of life. I have a better appreciation of this concept now, although I can do better in keeping the important priorities at the forefront of my consciousness.
Jennifer and I enjoyed our time in NYC last week. On Thursday, we walked the High Line -- a new urban park made out of the elevated railroad on the West Side of Manhattan, from 14th to 30th Streets. It was cold, blustery, and rainy, and we walked for 4 or 5 miles, enjoying each others' company, talking, and in no particular hurry. BC, I likely would have been less patient, more intent on doing something instead of being in the now. But on this walk, my cancer-laced bladder and I was content to meander and go nowhere fast. We tried a new BBQ joint on West 23rd ("Rub" - recommended), then wound our way back to our hotel (the Casablanca on West 43rd - my new favorite in the City). I ended up skipping the first day of the conference, even though I had planned to attend the afternoon session on the Federal Circuit. What I was doing seemed more important, and in retrospect I think I chose correctly. I made up for it on Friday, spending time at the office and at the conference, including an hour-long speech/presentation as the concluding speaker. Fewer than half the people fell asleep or walked out, so it must have been a success.
Jennifer and I managed to see 4 plays while in NYC: Rock Of Ages, a collection of 80's head banging rock songs stitched together with an almost coherent boy-meets-girl, boy-loses-girl, disappointment and reconciliation story. It was great silly fun. Godspell, a revival of the 70's musical drawn on the Gospel of Matthew, with lots of energetic, reverential fun. The Lion, The Witch, And The Wardrobe, an ingenious two-person play with minimal props and an utterly engaging method. And The Fantasticks, which Jennifer somehow had never seen. We had a wonderful time, and I am grateful that I could enjoy a respite from chemotherapy to do so.
Today was Kirsten's 17th birthday. We went out and bought her a motorcycle -- a 2002 Honda Rebel with 6300 miles (my gift was half of the cost). We enjoyed a family dinner and had a most pleasant time. I am aware of how, during this time, the family is pulling closer together. Shared challenges and shared burdens can increase family cohesion. It is a silver lining to an otherwise dark cloud, and one that gladdens my heart. Likewise, at church one of my friends movingly told me how she reads every entry on this blog, and it inspired her to try live her life better. It once again reminded me that I cannot pretend to understand God's hand in my life, or to pretend that my ways are his ways. I do not recommend cancer as a way of building family unity or as an object lesson to others, but to the extent that others find some benefit to my musings, then that's ok. Such comments reinforce my belief of the importance of community, of our virtual village, of the fact that we give and receive love and support and concern, and in so doing, we strengthen each other as well as ourselves.
Thank you, God, for the gift of life, and for family and friends. I can genuinely say that today was a good day to die. But my life has been prolonged, and for that I am grateful.
Tuesday, February 14, 2012
Chemo day 16 - "don't bleed this week"
Yesterday I went to the GW cancer center for lab work. As expected, a number of key markers were low, showing the effect of 2 weeks of chemotherapy. In particular, my platelet count was 56.7 (normal range is between 155 and 366). After we got the results, I met with my oncologist. She was pleased to hear that the constipation was under control, and encouraged me to use MiraLax on an as-needed basis, especially once I start the next round next week. She noted my low counts, said that they were totally expected, and said that I should continue to be vigilant against infections. She also advised me that, because my platelet count was so low, I should avoid bleeding this week. Umm, thanks, doc. Words to live by.
I'm otherwise feeling ok. This week I'm not as tired as I was while the poison was in my system. It's a strange thing to try to describe how chemo makes me feel exhausted at the cellular level. It's unlike any weariness from exercise or physical activity, or mental exhaustion, or any other kind of tiredness I've ever felt before. As it's been explained to me, during chemotherapy every cell is using its energy to try to fight through the reproductive ban created by the cisplatin and gemcetibine. As long as that stuff is in my system -- especially during the first 96 hours after each infusion -- the attention of my cells are focused less on what instructions are being sent from my brain, and more on just trying to survive at the elemental level. That means that the cells allocate less energy to do anything else -- to blink, or lift a finger, or think, or whatever they are programmed to do. It's like my tank is never full, and I run out of gas sooner. And it's strange that it is every cell in my body, not just muscle cells or brain cells or whatever. And unlike physical exhaustion, when I can sleep, or exercise less, or mental exhaustion, when I can stop thinking (usually aided by TV), when I have chemo-induced exhaustion, I have no control over limiting the effect. I just need to let time pass and have the drugs do their thing.
But this week, so far so good. The trip to and from Norfolk was fine. I'm still on track for the NYC trip, and am looking forward to that.
I'm otherwise feeling ok. This week I'm not as tired as I was while the poison was in my system. It's a strange thing to try to describe how chemo makes me feel exhausted at the cellular level. It's unlike any weariness from exercise or physical activity, or mental exhaustion, or any other kind of tiredness I've ever felt before. As it's been explained to me, during chemotherapy every cell is using its energy to try to fight through the reproductive ban created by the cisplatin and gemcetibine. As long as that stuff is in my system -- especially during the first 96 hours after each infusion -- the attention of my cells are focused less on what instructions are being sent from my brain, and more on just trying to survive at the elemental level. That means that the cells allocate less energy to do anything else -- to blink, or lift a finger, or think, or whatever they are programmed to do. It's like my tank is never full, and I run out of gas sooner. And it's strange that it is every cell in my body, not just muscle cells or brain cells or whatever. And unlike physical exhaustion, when I can sleep, or exercise less, or mental exhaustion, when I can stop thinking (usually aided by TV), when I have chemo-induced exhaustion, I have no control over limiting the effect. I just need to let time pass and have the drugs do their thing.
But this week, so far so good. The trip to and from Norfolk was fine. I'm still on track for the NYC trip, and am looking forward to that.
Sunday, February 12, 2012
chemo week 3 - off week
This week I will not have any chemo. It's an " off week" intended to let my body recover at the cellular level from the poisons that they have absorbed. Tomorrow I'll go in for lab work to see how low by white blood cell count and hematcrits really are, then I'll be given a pass until next week (actually until Tuesday the 21st, since the Cancer Center is closed for President's Day). I'm told that I should be feeling close to normal this week. I hope so - I have a lot planned.
I likely will not be blogging as much during this week. Normal is boring. I like boring.
I likely will not be blogging as much during this week. Normal is boring. I like boring.
Friday, February 10, 2012
Chemo day 12 - just a regular guy
All hail to MiraLax! It is a wonderful thing to have some semblance of regularity in the GI tract. My sister (a nurse anaesthetist) suggested I try MiraLax after consulting with her GI doctor colleagues, and my oncologist gave it her blessing after other prescriptions and remedies were not working. The fact the most of the gemcetabine has left my system is no doubt contributing to the relief from constipation. I can now look forward to a week off from chemo and hopefully will feel almost normal.
Yesterday and today approached nearly normal -- full days at work both days, and I taught my law school class last night after missing the week before. Tomorrow I'm going to look at a used Honda Rebel so Kirsten can learn how to ride (she passed the test needed to get her permit earlier this week).
I hope I continue to feel better before my next round of chemo on Feb. 21. Next Monday I'm scheduled to attend a hearing in Norfolk, Virginia. I'm also a keynote speaker at a conference in NYC next Friday, and Jennifer and I are planning on spending Thursday, Friday and Saturday in the city. We got engaged in Central Park in August 1983, and it's always fun to go back as a couple. The train tickets are bought, the hotel is booked, and I've bought tickets to three plays. I'm very much looking forward to what I hope will be a relaxing break with my long-suffering wife.
When I came home from work today, I found a package from Mrs. Fields cookies. One of my co-workers apparently had read of my dilemma of whether to eat chocolate chip cookies during chemo, and thereby forever associate that food of the gods with the poisoning of my system. My colleague's solution was to send me a basket of every type of cookie Mrs. Fields makes. I know that this generous gift might have the unintended effect creating a negative association with all types of cookies, not just chocolate chip cookies, but I have resolved to bravely throw my body on the altar to test the premise. Anything for the advancement of science.
I also received a package from my sister-in-law, who recently learned that she is pregnant with baby #2, and is an expert on all things relating to nausea. She thoughtfully included a super-stylish 7 quart barf bucket, Ezy-Travel Wristbands (do those things really work??), and chemo pop drops (formerly preggie pop drops). Plus Ghirardelli chocolate. Gotta love it! Thanks to all for your ongoing support.
Yesterday and today approached nearly normal -- full days at work both days, and I taught my law school class last night after missing the week before. Tomorrow I'm going to look at a used Honda Rebel so Kirsten can learn how to ride (she passed the test needed to get her permit earlier this week).
I hope I continue to feel better before my next round of chemo on Feb. 21. Next Monday I'm scheduled to attend a hearing in Norfolk, Virginia. I'm also a keynote speaker at a conference in NYC next Friday, and Jennifer and I are planning on spending Thursday, Friday and Saturday in the city. We got engaged in Central Park in August 1983, and it's always fun to go back as a couple. The train tickets are bought, the hotel is booked, and I've bought tickets to three plays. I'm very much looking forward to what I hope will be a relaxing break with my long-suffering wife.
When I came home from work today, I found a package from Mrs. Fields cookies. One of my co-workers apparently had read of my dilemma of whether to eat chocolate chip cookies during chemo, and thereby forever associate that food of the gods with the poisoning of my system. My colleague's solution was to send me a basket of every type of cookie Mrs. Fields makes. I know that this generous gift might have the unintended effect creating a negative association with all types of cookies, not just chocolate chip cookies, but I have resolved to bravely throw my body on the altar to test the premise. Anything for the advancement of science.
I also received a package from my sister-in-law, who recently learned that she is pregnant with baby #2, and is an expert on all things relating to nausea. She thoughtfully included a super-stylish 7 quart barf bucket, Ezy-Travel Wristbands (do those things really work??), and chemo pop drops (formerly preggie pop drops). Plus Ghirardelli chocolate. Gotta love it! Thanks to all for your ongoing support.
Thursday, February 9, 2012
Chemo day 11 - enema of the state
On Monday I asked my doctor if there is any way that I could know if the
chemo is working. She said no, not by how I feel, or what side effects
I have. I could feel lousy, and the chemo could miss the cancer. Or I
could feel great, and the cancer could be eradicated. So I'm in a strange sort of waiting game, where I have no valid
reference point of whether or not I'm making progress. From a disease
management standpoint, it is not satisfying just to deal with the side
effects, but oh well. It's strange to think that, while my white blood cell count plunges, my bone marrow struggles to recover, and (hopefully) the cancer cells in my body have been blocked from reproducing, the most pervasive side effect that I feel is ongoing constipation.
Yesterday, my oncologist prescribed another laxative -- I think it was actually Krispy Kreme donut glaze -- that produced some astonishing displays of combustion, but sadly, no solids. (Maybe I should just plop myself down at the end of Krispy Kreme rack and let those hot donuts roll into my mouth until I explode. What a way to go.) Jennifer made me a vile homebrewed concoction of bran, molasses, applesauce, and other things that have no business being combined, and that was likewise ineffective. My sister consulted with her GI doctor colleagues and advised MiroLax, which I started this morning. But the only thing that has worked so far is the humble Fleet's enema. It provided relief yesterday, and again this morning. Enemas are pretty high up on my list of things that I wouldn't seek out voluntarily, but it is far better than risking another violent attack by the wild riders of the Dulcolax clan.
Oh, to be regular again.
Yesterday, my oncologist prescribed another laxative -- I think it was actually Krispy Kreme donut glaze -- that produced some astonishing displays of combustion, but sadly, no solids. (Maybe I should just plop myself down at the end of Krispy Kreme rack and let those hot donuts roll into my mouth until I explode. What a way to go.) Jennifer made me a vile homebrewed concoction of bran, molasses, applesauce, and other things that have no business being combined, and that was likewise ineffective. My sister consulted with her GI doctor colleagues and advised MiroLax, which I started this morning. But the only thing that has worked so far is the humble Fleet's enema. It provided relief yesterday, and again this morning. Enemas are pretty high up on my list of things that I wouldn't seek out voluntarily, but it is far better than risking another violent attack by the wild riders of the Dulcolax clan.
Oh, to be regular again.
Wednesday, February 8, 2012
Chemo day 10 - why does it have to be so constipated?
Ruminations of side effects of drugs. I am firmly corked. I have been taking 4 of the colace/senna pills daily since Monday, and have not taken any of the anti-emetics. After my violent purge on Saturday, I've had only one movement since, on Monday afternoon. The old joke about which body part is the most important is true today. My trembling hand has been tempted to reach for the Ducolax again, but so far I've resisted.
On top of it, I am feeling the bone pain caused by the Neulasta booster shot, especially in my pelvis. Tylenol for that. The flu-like symptoms showed up, so I've been taking Claritin for that. Along with the steroid and gemcetibine, I feel like I am a walking pharmacy, and all these drugs are interacting in ways that are making me grumpy.
Jennifer's dad has surgery for prostate cancer last fall, and said that the pain medications he was prescribed made him so constipated that he decided he's rather have the pain than the constipation, so he stopped taking the pain pills. Stopping chemo is not an option for me, so I'm going to have to figure out another option. I've got a call into my doctor, and sent her a full report of my diet since the purge:
Sunday: yogurt protein shake (40 oz fluid), Garrett's homemade pizza, penne pasta with turkey sausage, salad, chips/dip, cobbler, 4 diet cokes, 1 liter water
Monday: yogurt protein shake (40 oz fluid), Potbelly wreck sandwich and cookie, baked chicken, steamed veggies, salad, 3 liters power aid zero, 1 liter water
Tuesday: yogurt protein shake (40 oz), wheat bagel w/butter, Baja Fresh pork burrito, leftover penne pasta, salad and steamed veggies. 1.5 liters power aid zero, 2 diet cokes, 1 liter water
This morning: yogurt protein shake (32 oz).
Grumble grumble.
On top of it, I am feeling the bone pain caused by the Neulasta booster shot, especially in my pelvis. Tylenol for that. The flu-like symptoms showed up, so I've been taking Claritin for that. Along with the steroid and gemcetibine, I feel like I am a walking pharmacy, and all these drugs are interacting in ways that are making me grumpy.
Jennifer's dad has surgery for prostate cancer last fall, and said that the pain medications he was prescribed made him so constipated that he decided he's rather have the pain than the constipation, so he stopped taking the pain pills. Stopping chemo is not an option for me, so I'm going to have to figure out another option. I've got a call into my doctor, and sent her a full report of my diet since the purge:
Sunday: yogurt protein shake (40 oz fluid), Garrett's homemade pizza, penne pasta with turkey sausage, salad, chips/dip, cobbler, 4 diet cokes, 1 liter water
Monday: yogurt protein shake (40 oz fluid), Potbelly wreck sandwich and cookie, baked chicken, steamed veggies, salad, 3 liters power aid zero, 1 liter water
Tuesday: yogurt protein shake (40 oz), wheat bagel w/butter, Baja Fresh pork burrito, leftover penne pasta, salad and steamed veggies. 1.5 liters power aid zero, 2 diet cokes, 1 liter water
This morning: yogurt protein shake (32 oz).
Grumble grumble.
Tuesday, February 7, 2012
Chemo day 9 - hit me with your best shot
This morning I woke up at 5 am feeling ok but could not go back to sleep
- I'm beginning to think that is the new norm for the day after chemo. I
took Garrett to the bus then came into work, thinking I would probably
would run out of gas earlier in the afternoon. So far, so good.
Later in the morning, I received my first booster shot (Neulasta), which is intended to assist my immune system as my white blood cells have been deprived of their ability to replicate. While reading about the drug, I found a rant from a patient in 2007 complaining that Neulasta was worse than chemo. I hope not. For the next few days, I am supposed to differentiate between flu-like symptoms that the shot can cause, and flu-like symptoms that mean I have the flu. The former is normal. The latter means I should seek immediate medical assistance. I appreciate the laser-like ability of modern medicine to help distinguish between what matters and what doesn't. It's sort of like life.
I also received the results of my blood work that was done immediately before the second round of chemo. They generally are ok. My white blood cell count is down somewhat (3.29; normal range is 4.8-10.8); my hematcrit (14.8) and platlet count (130) are at the low end of normal, but are expected to drop further this week. I'll be at increasing risk of infection. I carry with me a small bottle of hand sanitizer, but have resisted wearing the surgical mask, since I'm not in Tokyo.
Kirsten wants to get her motorcycle license - that's my girl! - so later this afternoon I may meet her at the DMV. I'm also looking for a starter bike for her, like a Honda Rebel. After she gets proficient, maybe she can move up to my Harley Sportster, which would give me a reason to get a Fat Boy or similar bigger hog. Chelsea and Spencer also have expressed interest in riding. That would be fun. I'd look forward to riding with my kids. While I might not be doing too much riding this year, it's fun to have things to anticipate in the future.
Later in the morning, I received my first booster shot (Neulasta), which is intended to assist my immune system as my white blood cells have been deprived of their ability to replicate. While reading about the drug, I found a rant from a patient in 2007 complaining that Neulasta was worse than chemo. I hope not. For the next few days, I am supposed to differentiate between flu-like symptoms that the shot can cause, and flu-like symptoms that mean I have the flu. The former is normal. The latter means I should seek immediate medical assistance. I appreciate the laser-like ability of modern medicine to help distinguish between what matters and what doesn't. It's sort of like life.
I also received the results of my blood work that was done immediately before the second round of chemo. They generally are ok. My white blood cell count is down somewhat (3.29; normal range is 4.8-10.8); my hematcrit (14.8) and platlet count (130) are at the low end of normal, but are expected to drop further this week. I'll be at increasing risk of infection. I carry with me a small bottle of hand sanitizer, but have resisted wearing the surgical mask, since I'm not in Tokyo.
Kirsten wants to get her motorcycle license - that's my girl! - so later this afternoon I may meet her at the DMV. I'm also looking for a starter bike for her, like a Honda Rebel. After she gets proficient, maybe she can move up to my Harley Sportster, which would give me a reason to get a Fat Boy or similar bigger hog. Chelsea and Spencer also have expressed interest in riding. That would be fun. I'd look forward to riding with my kids. While I might not be doing too much riding this year, it's fun to have things to anticipate in the future.
Monday, February 6, 2012
Chemo day 8 - please, sir, may I have some more?
Round 2 of chemo. I'm told today is an easy day. I'll just be getting a steroid (Decadron 12 mg) and gemcitabine (2380 mg). It will take an hour, once I get checked in and settled, which means that it actually will take 2.5 hours. Strangely, the real-time lab machine that tells blood counts and hematcrit levels was off-line, so I don't know how toxic my blood is. I'll go in tomorrow for a booster shot, and will find out more then.
I had some questions for my oncologist. She told me that because gemcitabine was a less nausea-inducing drug than cisplatin, my GI tract likely would not be feeling as bad this week. However, between this and the booster shot tomorrow, I may be feeling aches, pains, fevers, and exhaustion, but no nausea. Small steps, perhaps, but welcome nonetheless. This means that I likely can cut back on the anti-emetics, which she told me are one of the reasons I have been constipated. Makes sense, I guess -- the anti-emetics make it so the food sticks in the stomach. The effect is it doesn't like to come out either end.
My doc recommends I take Docuste Sodium and Senna, and hopes that, along with fewer anti-emetics, will better manage the constipation. As long as I can avoid the events of last Saturday, I'm all for it.
My doc also confirmed that I will not be getting an infusion next week, since in her experience few are able to tolerate it. She said next week should be "near normal", with just a lack of energy as the overriding factor. I'm supposed to be a keynote speaker at a professional conference in NYC on Feb. 17, and Jennifer and I had talked about going up for the weekend. Hopefully we can go, but we'll book refundable tickets.
Back at the office now. Feeling ok. Fingers crossed.
I had some questions for my oncologist. She told me that because gemcitabine was a less nausea-inducing drug than cisplatin, my GI tract likely would not be feeling as bad this week. However, between this and the booster shot tomorrow, I may be feeling aches, pains, fevers, and exhaustion, but no nausea. Small steps, perhaps, but welcome nonetheless. This means that I likely can cut back on the anti-emetics, which she told me are one of the reasons I have been constipated. Makes sense, I guess -- the anti-emetics make it so the food sticks in the stomach. The effect is it doesn't like to come out either end.
My doc recommends I take Docuste Sodium and Senna, and hopes that, along with fewer anti-emetics, will better manage the constipation. As long as I can avoid the events of last Saturday, I'm all for it.
My doc also confirmed that I will not be getting an infusion next week, since in her experience few are able to tolerate it. She said next week should be "near normal", with just a lack of energy as the overriding factor. I'm supposed to be a keynote speaker at a professional conference in NYC on Feb. 17, and Jennifer and I had talked about going up for the weekend. Hopefully we can go, but we'll book refundable tickets.
Back at the office now. Feeling ok. Fingers crossed.
Sunday, February 5, 2012
Chemo Day 7 - feeling super
Saturday afternoon was the hardest day so far of chemo. I lost 8
pounds in 24 hours as my body violently purged itself. I think several
pounds was from my pores, as I was dripping by the end. Among my
discoveries: (1) Three Dulcolax is too much, too fast, on the GI tract;
(2) The sensation of being on the ragged edge of nausea for hours is as
bad as the nausea itself; and (3) When laying in a fetal position on
the tile floor of the bathroom, slick with sweat, moaning in pain and
uncertainty, the left side is far more comfortable than the right side.
By contrast, Sunday was a picnic. We had family and friends over for a wonderful Super Bowl party, Garrett hand made two tasty pizzas, Bill and Bernice brought turkey sausage ziti and gifts (including jello, saltines, Ginger Ale, and "Cancer on $5 a Day (Chemo Not Included)". Cynthia and Walter brought salad, apple crumble, ice cream, and Cynthia's hopelessly infectious laughter. Friends are the tonic of life. Thank you.
Round 2 of chemo is tomorrow.
By contrast, Sunday was a picnic. We had family and friends over for a wonderful Super Bowl party, Garrett hand made two tasty pizzas, Bill and Bernice brought turkey sausage ziti and gifts (including jello, saltines, Ginger Ale, and "Cancer on $5 a Day (Chemo Not Included)". Cynthia and Walter brought salad, apple crumble, ice cream, and Cynthia's hopelessly infectious laughter. Friends are the tonic of life. Thank you.
Round 2 of chemo is tomorrow.
Saturday, February 4, 2012
Chemo day 6 - this too shall pass
Among the many side effects of chemotherapy is that it throws your GI system out of whack. The lining of your stomach and intestines can be damaged, causing nausea and loss of appetite. You can have diarrhea or constipation. For me, I've had underlying nausea for most of the week, but it has been managed nicely with the anti-emetic drugs (as long as I keep on schedule). This morning, however, I've been pained by constipation. I've been taking colace stool softeners, but to no effect. Dulcolax is next. I've read how chemo patients swing from being painfully plugged to freely running, and have hoped I would dodge that particular aspect, but it seems that I will not be spared.
Many years ago, I read a novel by James Clavell about POW's during WWII ("King Rat"). One passage that now comes to mind was a description by one of the prisoners of a perfect bowel movement -- a transcendent event that was exceedingly rare in the prison camps. We take for granted our regular bodily functions, until they abandon us, or malfunction in spectacular ways. Bladder cancer is right there with bowel, colon, and anal cancer as a disease that most people would rather not think about, unless they've got it. I know I never did.
I'll push through this. Take what comes, each day, and do my best with what I've got. I am fortunate to have much, to be richly blessed by family and friends, to have access to high quality medical care, and to have the resources to properly fight this battle. Yet I am also reminded of my humanity, and the transitory nature of life, and how precious each moment is.
In the last volume of the Harry Potter series, there is a scene as Harry realizes his death is inevitable, and he feels regret at having wasted so much time on insignificant things. I have occasionally reread those pages, because they illustrate the newfound maturity that can accompany an introspection towards mortality. Cancer brings perspective, and helps me better appreciate things as they are, and as they meant to be.
Many years ago, I read a novel by James Clavell about POW's during WWII ("King Rat"). One passage that now comes to mind was a description by one of the prisoners of a perfect bowel movement -- a transcendent event that was exceedingly rare in the prison camps. We take for granted our regular bodily functions, until they abandon us, or malfunction in spectacular ways. Bladder cancer is right there with bowel, colon, and anal cancer as a disease that most people would rather not think about, unless they've got it. I know I never did.
I'll push through this. Take what comes, each day, and do my best with what I've got. I am fortunate to have much, to be richly blessed by family and friends, to have access to high quality medical care, and to have the resources to properly fight this battle. Yet I am also reminded of my humanity, and the transitory nature of life, and how precious each moment is.
In the last volume of the Harry Potter series, there is a scene as Harry realizes his death is inevitable, and he feels regret at having wasted so much time on insignificant things. I have occasionally reread those pages, because they illustrate the newfound maturity that can accompany an introspection towards mortality. Cancer brings perspective, and helps me better appreciate things as they are, and as they meant to be.
Friday, February 3, 2012
Chemo day 5 - almost normal?
This morning, I woke up early and I made sure that I kept up with my anti-nausea drugs, then went to work. Seven hours later and I'm still there, so I'm either doing ok, or I'm so out of it that I don't know what's going on. Maybe both? Anyway, I feel almost normal. I had a long meeting this morning, ate lunch, then laid down on the sofa in my office and rested. Now I'm back to slaying paper dragons for the afternoon.
How am I doing? I have been having no pain so far. No muscle aches, no bone pain, no GI tract discomfort, no major reflux. I still have all my hair. The feeling earlier this week of a systemic exhaustion is hard to describe - like every cell of your body has had a workout, and is tired. But not just your muscles - it's every cell. Each movement takes more of an effort than expected. Not a painful effort - just a little jolt of surprise that blinking, or lifting a finger, or rolling over, takes that much energy. It's not quite what I expected.
In preparing for chemo, I have been hoping for the best and planning for the worst. So far, things appear to tilting more towards the better side (knock on wood). I get round 2 on Monday, and will be wondering how my body responds to that. Each day I discover what is, for me, the new normal. And I am glad to be alive and do so.
How am I doing? I have been having no pain so far. No muscle aches, no bone pain, no GI tract discomfort, no major reflux. I still have all my hair. The feeling earlier this week of a systemic exhaustion is hard to describe - like every cell of your body has had a workout, and is tired. But not just your muscles - it's every cell. Each movement takes more of an effort than expected. Not a painful effort - just a little jolt of surprise that blinking, or lifting a finger, or rolling over, takes that much energy. It's not quite what I expected.
In preparing for chemo, I have been hoping for the best and planning for the worst. So far, things appear to tilting more towards the better side (knock on wood). I get round 2 on Monday, and will be wondering how my body responds to that. Each day I discover what is, for me, the new normal. And I am glad to be alive and do so.
Thursday, February 2, 2012
Chemo day 4 - better safe than sorry
After a half day at the office yesterday and an excellent dinner catered by my firm, I enjoyed a relatively good night's sleep. When I woke up this morning, I felt almost normal -- that is, until I started to move at my usual pace while performing my morning abulations. I felt several violent waves of nausea roll over me, and had to still myself and breathe through it. It was a swift reminder that my cells are still at war with themselves, and the lining of my stomach is still fragile. I do better when I move slowly and keep on schedule with the anti-nausea drugs. I think I'll work from home today.
Wednesday, February 1, 2012
Chemo Day 3 - waiting for the crash
I drank 5 liters of Powerade yesterday, so any chance of an uninterrupted sleep was as likely as Newt checking his ego. I woke up at 5 am again and couldn't go back to sleep, so I read a bit, checked emails and news on the iPad, then rolled over at 6 am, and the next thing I knew it was 930 am! That is most unusual for me. I guess this is what it means to listen to your body.
My nausea is still in check with the help of the drugs. After I took my first big slug of Powerade this morning, I felt a violent roll of my stomach. Ok, I'll sip and be more careful.
I felt well enough to go into work for a bit. It is a warm winter day in DC, nearly 70 degrees, so I dropped the top on the S4 and enjoyed the sun on my face. Taking pleasure in the small things helps.
I am continually grateful for the ongoing well-wishes of my family, friends, and colleagues. One colleague sent a large shipment of Omaha Beef dinners, enough to make several meals, and my firm is arranging for a catered meal to be delivered tonight. Jennifer took the leftover turkey from Monday and made it into a hearty soup that we ate last night. So far, I have no appetite problems -- I'm wondering when the weight loss is going to happen. Several accounts describe how chemo patients feel good for the first 48 hours, then crash as the initial dose of anti-nausea drugs and steroids wear off. Maybe I'll crash tonight, or tomorrow, or not at all. The doctors and nurses stress flexibility, so I'm taking it a day at a time.
Thank you all for your ongoing support! I hope this blog is doing its intended purpose. I find it therapeutic to chronicle my thoughts and feelings during this time. I found great comfort in a similar blog created in 2011-11 by a Wisconsin resident who had muscle-invasive bladder cancer, TURBT, chemo, then a radical cystectomy and neobladder. If my blog can help others in the future, it's well worth it.
My nausea is still in check with the help of the drugs. After I took my first big slug of Powerade this morning, I felt a violent roll of my stomach. Ok, I'll sip and be more careful.
I felt well enough to go into work for a bit. It is a warm winter day in DC, nearly 70 degrees, so I dropped the top on the S4 and enjoyed the sun on my face. Taking pleasure in the small things helps.
I am continually grateful for the ongoing well-wishes of my family, friends, and colleagues. One colleague sent a large shipment of Omaha Beef dinners, enough to make several meals, and my firm is arranging for a catered meal to be delivered tonight. Jennifer took the leftover turkey from Monday and made it into a hearty soup that we ate last night. So far, I have no appetite problems -- I'm wondering when the weight loss is going to happen. Several accounts describe how chemo patients feel good for the first 48 hours, then crash as the initial dose of anti-nausea drugs and steroids wear off. Maybe I'll crash tonight, or tomorrow, or not at all. The doctors and nurses stress flexibility, so I'm taking it a day at a time.
Thank you all for your ongoing support! I hope this blog is doing its intended purpose. I find it therapeutic to chronicle my thoughts and feelings during this time. I found great comfort in a similar blog created in 2011-11 by a Wisconsin resident who had muscle-invasive bladder cancer, TURBT, chemo, then a radical cystectomy and neobladder. If my blog can help others in the future, it's well worth it.
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