Recovery: it's different

Now that my bout with treatment for cancer is almost over, it occurs to me that I haven't commented on one of the more curious aspects of treatment and recovery. Of course al;l the good nutritionists recommend high-fiber foods and some even say raw food is better for you than cooked or processed -- the less processed the better. And of course, even though many debate just how useful antioxidants are, in general even skeoptical doctors think it's not a bad idea to have a fair amount of one's diet con tain antioxidants, whether from food or from supplements.

However, the recommendations for my treatment and recovery have been pretty much the polar opposites. My surgeon, Dr. Nissen, said that at least for a while I should avoid raw food and go for more-processed food, largely because it's easier to digest. Since the Whipple surgery rearranged my insides and especially my digestive system pretty drastically and it will take it a while to get used to its new configuratuion, that makes sense. Also, since I had a serious lver infection in conjunction with the tumor (but thank goodness no liver malignancy; we tested), sticking with easy-to-digest and low-fat foods is best.

It also makes some sense to reduce my intake of antioxidants from the fairly large amounts I had been ingesting, at least during chemotherapy and radiation treatment. Chemo especially seeks to go after malignant or potentially malignant cells (and other cells as well) and having them protected by antioxidants would tend to reduce the efficacy of the treatment. So I have cut down my vitamin C and E intake, almost to one multivitamin a day. I'm looking forward to chemo being over (only 3 more treatments!) so I can return to my usual (well, maybe slightly improved) eating habits and vitamin intake. I'm convinced that my overall good health helped me tolerate all the surgery and treatments I've been through better than almost any patient the doctors in question had seen, and that following Durk and Sandy's advice on supplements had something to do with that base of good health.

Chemo treatment almost over

I had my second chemo treatment in this round on Friday, and as of Tuesday I still haven't felt side effects. We purposely scheduled the treatments for Friday afternoon so that if it did have fatiguing or debilitating side effects I would have the weekend to get over it. But so far none -- partly controlled, I think, by the steroids and anti-emetics they give me in conjunction with the Gemzar and partly due to my own (legal now) herbal ministrations. The last treatment is scheduled for this Friday (though the doctor may decide another is appropriate). So that will be the end of cancer treatment for now, with what I expect to be a clean bill, mitigated by the fact that the incision is still slightly tender sometimes and will likely require a little more time to be fully healed to the point of being able to ignore it.

I am fully aware, having sat in waiting rooms and treatment rooms with other patients, that my experience is unusual and unusually fortunate. I am grateful to God and my genes.

Back to chemo

I visited Dr. Saehgal yesterday, and we decided to start the last round of chemo. It will actually begin today with an appointment at 3:00. Last time we did chemo I had close to zero side effects beyond sometimes nodding off during the day, so I don't expect much in that area this time around. But having the treatment (it's Gemzar administered through an IV drip, I presume like last time with anti-emetic and a steroid added) on Friday will give me the weekend to recover just in case there are side effects. It's extremely important to me to be able to continue to work, both because I enjoy it and for reasons I will explain further if certain developments at the Register continue to develop.

Work agrees with me

Well, I worked for the Register all last week -- from home instead of going to the office, but I wouldn't be surprised if, if anything, I was more productive. At any rate the writing came fairly naturally and by Wednesday or so it was almost as if I had never been away. I contributed quite a few posts to the Register's Orange Punch blog. I'm staying home on the doctors' recommendation because my immune system is still a bit compromised and it would be better if I didn't ride in a train or bus with all those random germs in an enclosed space. Plus I still have three chemotherapy treatments to come, maybe beginning late this week, which will compromise the immune system probably a bit more than it is now.

As time and energy permit I'll start linking in this blog to most of the things I end up writing for the register, so there should be quite a few more items here than has been the case for the last several months.

Back on track -- we hope

It has been a reasonably eventful few days.On Thursday we had our post-operative appointment with Dr. Nissen, our formidable surgeon. We also took the occasion to see Dr. Drazin, our second-opinion chemo doctor. He reassured us that the apparent delays in getting to the radiation treatment were not medically worrisome, though he understood that delay could complicate my going back to work at the most appropriate time. Guess we'll just grin and bear it and make it through somehow.

On Friday we went to the chemo place in Wildomar, and were almost reassured that they're actually beginning radiation next Wednesday, not just having another prep session. They issued us the Zelota pills for this round of chemo that coincides with radiation and said to start taking them Wednesday. When we let the chemo people know the radiation people were vaguie about whether actual treatment would begin, they said to bring the pills with us that day and we'd start taking them if radiation actually began.

Actually, it's only mildly irritating. We've figured out I can get back to working the first week in October either way, so it will be OK. But it's a bit irritating to get the feeling that the medical staff people aren't actually listening, even though they may be nodding sympathetically.

Being insistent with doctors

Back to the doctor-visiting regimen today -- and unfortunately (or maybe not), back to having to insist a little bit (politely, of course) to get the kind of treatment we wanted from our doctors. We saw Dr. Sehgal, our chemo oncologist today to review matters after one cycle of chemo. It all looks pretty positive except for an uptick Dr. Sehgal thinks is anomalous in the Ca-19 reading. Then came time to nail down our radiation schedule, and the first thing the nurse said, after consulting with the radiation office, is that they plan to begin actual treatment (5-1/2 weeks) around Sept. 3. That would be too late for our schedule, which requires getting back to working, at least from home, by Oct. 7. We protested, then Dr. Sehgal talked directly to Dr. Mason, and things changed.The first blush was the set-up already scheduled for Friday to be followed by first treatment early the following week. Then on the way home we got a call from the radiation office changing the set-up appointment from Friday to tomorrow.

Moral, from our perspective: stand your ground with authority figures like doctors and if what you're asking for is reasonable, which ours was as everybody stresses not having big gaps in treatment, you'll probably get it. In the respect, I can't recommend Sharon Presley's new book, "Standing Up to Experts and Authorities," highly enough. It has not only philosophical arguments for being insistent with authority figures, but scads of very practical tips about questions to ask of a wide range of authorities. I can't prove it in our case, but I suspect the original schedule was built around the doctor's vacation rather than the patient's needs. But we got what we wanted eventually. So stand up for your rights, even if it isn't necessarily a matter of absolute right!

Relishing small triumphs

I don't think I have mentioned just how pleasant it has been for the last couple of weeks to take a shower without having to cover some significant part of my body to prevent it getting wet. I came home from Cedars the first time with a PICC line in my arm for the IVs I was taking every day, so I had to put a giant plastic sleeve over the arm and tape the top when I took a shower. The PICC line stayed in until a couple of weeks after the operation. Then I had an open wound in my belly, and we didn't want to get soap in it (although after a while I rinsed it with clear water after all the soap was rinsed off). Since we stopped packing the wound, however (maybe jumped the gun by a couple of days, but no serious problems), I've been able to take showers without swathes of plastic over various portions of my body. It has been wonderful! Sometimes you don't realize how much you enjoy a privilege until you can't do it.

In general, my health is pretty good. This is the "off" week for chemotherapy and then after a bit of a wait we start radiation combined with a different chemo. Next week we see Dr. Saegal for chemo consultation, then Dr. Nissen for what will probably be a final post-op check-up, and then the radiation doctor on Fiday to work out how we're going to approach the radiation. Little by little, we're getting there.

Slight hitch in chemo

This morning I thought I might have developed a hitch in my chemo reaction. I threw up my breakfast. However, it was not repeated -- yes, I medicated, including with Compazine. On reflection, I think I did it to myself. I am supposed to avoid milk and stick to clear liquids right after chemo, and I not only put milk on my Cheerios,I put way too much sugar. It tasted fine at first, but obviously didn't agree with me. Other than that, response to chemo has been pretty uneventful. I have a slight rash where the needle went in Thursday, but no other side effects noted. I'm thinking full recovery.

Chemo still going well

It has been a little more than 48 hours since I had a chemo treatment, and so far the experience is mostly unremarkable. I have not had nausea -- although a couple of times on Thursday I got that little pre-puke taste in my mouth after a hiccup, but it was just a mouthful, and medication handled it nicely, thank you.

Based on how I acted, I was probably a little fatigued yesterday -- I didn't do much and kept dozing off. I know chemotherapy is a real ordeal for a lot of people, but so far it has been pretty easy for me.I think my overall good health except for that pesky tumor, still mostly intact after everything, is probably a factor.

Chemo still going just fine.

It's Monday, and I still haven't experienced side effects from my chemotherapy treatment on Thursday. I hope that's a good portent for the future. In addition, the open wound on my incision is now closed up enough that we decided this morning to stop packing and dressing it and just let it finish closing up those last few centimeters on its own. That's a signal piece of progress. I still feel a little tightness around the incision, but that will take a while to clear up. I feel really good about licking the big C pretty thoroughly.

Uneventful chemo

It would be just too churlish to say I'm sort of disappointed, so I won't. But almost 48 hours after receiving chemotherapy on Thursday, I have experienced none of the possible side effects -- nausea, fatigue, diarrhea, etc. -- the preparatory pamphlets said were possible. Of course Dr. Saegal's nurses included an anti-emetic (Aloxi) and a steroid (Decodran) in the IV cocktail I received. I also had by my own back-up. The chemo is Gemzar.

This has got to count as good news. Even the recent literature suggests that most people find chemo at least a bit of an ordeal. If it does the job of killing any and all cancer cells without unpleasant side effects, all the better! This, combined with the 5-year-survival rate news we got from Dr. Drazin -- 70% without chemo if I understood correctly -- has me feeling very good about being completely cancer-free.

Starting chemo today

Today is the day I finally start chemotherapy, and while I would be surprised if there weren't some unpleasant side effects, I'm actually looking forward to it. It marks the beginning of treatment that is more precautionary than absolutely necessary -- they think they got all the cancer with the Whipple surgery and haven't detected any other hot spots -- it still strikes me as a good idea. And beginning the therapy means that I can see an end to it and a resumption of something resembling normal life.

We feel better about starting chemo (the compound they're using is Gemzar) after having gotten a second opinion from Dr. Noam Drazin, the chemotherapist my surgeon, Dr. Nicholas Nissen, normally uses. He was very impressive in his knowledge, and told us he would have used Gemzar, perhaps in a slightly different regimen, and that our doctors in Murrieta seem to know what they're doing. He also had a comforting statistic none of our other doctors had imparted to us. The five-year survival rate after Whipple, even without chemo and radiation, is 70% for the stage of cancer I had. With chemo it should be better -- and aside from that nasty tumor I'm in excellent health and a good candidate for a long life now. He also said that ampullary tumors seldom come back after having been removed. All this was reassuring on several levels. I'm ready to do the chemo and radiation now.

Chemotherapy next week

Everything seems to take longer and be more complicated to get accomplished than seems necessary sometimes. It doesn't seem as if it should have taken until today to get an appointment to begin chemotherapy next Thursday, considering that we had the educational sessions a full week ago. But it did. Ah, well. We'll be ready and then some.

Combine that with Southern California's current humid heat wave and things just seem a bit out of joint. Yesterday afternoon at about 3:30 the sky darkened and the wind whipped up considerably. The Weather Channel said there was a thunder-and-lightning storm near Hemet and we were just getting an edge of it. But it turned out to be an edge that featured thunder and lightning here in Lake Elsinore as well, around 6:00 or 7:00. That's unusual. I know summer and rain go together in most of the country -- I lived in suburban Virginia for 8 years -- but we usually don't get any rain in Southern California after about the end of April.

Today the yard is full of bark blown off our eucalyptus trees and other vegetation brought down by the wind. Clean-up tomorrow, but it's still expected to be near 100, and while I'm not as frail as Jen thinks I am, I can't spend a whole lot of time in that kind of heat before wanting to go inside where it's cooler, since I can't go in the pool yet thanks to the much smaller but still present open wound. . Should be a lazy day tomorrow, buy we'll have to do some pick-up.

Going flaccid

One of the less attractive aspects of having been a semi-invalid for several months -- limited as to physical activity early on from the PICC line, now because of the incision that is still an open wound (if greatly reduced in size) in my belly -- is seeing my muscles go flaccid. Not that I had anything like huge arm muscles before, but what I had was pretty well defined, even when I was more overweight. Now the flesh hangs loose both in forearm and upper arm. It looks for all the world like the arms of a really old man, which I didn't want to look like for a bit longer. Once the wound is secure I can do a bit more, but then I will be deeply into chemotherapy (we'll get word Thursday as to when we begin) and I don't know just how active I'm going to feel like being during that regimen. People tell me that once reasonably normal activity is resumed -- even stuff like sweeping and doing chores around the yard -- the muscle tone will return. I hope so. The flaccid look is a bit of a drag.

As to weight, here's some context. I played football my freshman year at 165, when I was probably in the best shape of my life. I've been that low a few times since, but mostly have hovered between 170 and 190. Then maybe five-seven years ago I ballooned up to 225. I began losing that weight gradually (and sometimes fitfully) a few years ago and was right around 205 when the jaundice hit in April. Since then I've lost weight steadily and seem to have settled at around 170. I still have flab around my belly, but my waist size is down four inches. I figure to make it more muscle and less flab and stay around this weight once the treatment is complete, which is now looking like October.

Moving on to chemotherapy

Almost didn't realize just how long I had been away from this pop stand. Part of the reason is that we've decided writing about politics, which I do for a living, even on my own personal blog, might compromise my status as being on disability, and quite frankly little else seems important enough to me to record here. In addition, with the open wound in my stomach, sitting in front of the computer for long stretches is simply not especially comfortable.

However, I suppose a few people are interested in my physical condition and may check here to find out, and quite frankly that is what does seem to consume me, in general for the better. I'm very much interested in getting better. So . . . we spend a good deal of Thursday and Friday at oncology doctors and made preliminary plans for chemotherapy and radiation. We may go the L.A. for a second opinion, but at this point I fee comfortable with the clinic in Wildomar. Our primary care physician, Dr. Susan Danek, is favorably impressed -- and her father is using them.

The chemo doctor is recommending three weeks of chemo and one week off, to be followed by combined chemo and radiation, apparently for four or five weeks, and then another course of chemo. It's longer than I expected it to be. But he says that while it's encouraging that all the post-surgery reports show no remaining cancerous tissues, the fact that there were some affected lymph nodes -- taken out during the Whipple surgery --, suggests an aggressive approach to make sure no cancer has any proper chance of establishing itself again. I concur.

Bottom line: will probably start chemo next week, assuming Anthem insurance authorizes it (they've been good so far). We'll see how it affects me. They gave us an introductory session Friday noting that there could be nausea and vomiting as well as fatigue and diarrhea. I probably won't feel like doing much of anything on the day of treatment and probably the next day as well. Have take some steps to cope with the side effects.

Healing nicely

Just in case anyone is interested, I am healing rather nicely. I guess the fact the there was a big pocket under my incision, which led Dr. Nissen to remove staples and leave a fairly large open wound over part of the incision, has made the process slower than it might have been ideally. But after some tentativeness the first couple of times, Jen has become quite expert at "packing" the wound -- i.e., filling it with gauze to absorb various stuff -- twice a day, and does it without causing pain. The wound is noticeably healing and becoming smaller each day. When we were in the office last week, Dr. Nissen and Honore estimated it should be fully healed in about two weeks from last Thursday. Then they'll design a chemotherapy regimen.