• to keep off the weight that I lost – about 10 lbs which I’ve started to gain back - and maybe lose some more
• to get myself really fit –  I’m aiming for at least three days during the week for an hour and then another hour on both Saturday and Sunday
• to figure out what I want to do after the operation – try to find another job like my current one (my current contract runs out on February 2nd) and stay in San Francisco or move back to Santa Rose, find a part-time job and semi-retire again – still weighing the options

Met with my surgeon last Monday and we have set the operation for Friday, February 3rd. I will b e in the hospital for a week to 10 days.  He’s still pushing for a colostomy instead of a resection and I am still resisting. However,as Robert noted, after we saw the surgeon on Monday, I haven’t had a CT scan yet and I am still swollen enuf from the radiation that the surgeon hasn’t been able to really “see” the effects of the radiation and chemo on the tumor (not just from the CT scan but from the proctology scope) so it’s still early to be making decisions.  To use Janie’s very good term, I don’t have enough data points yet and my instinct is to strongly resist.  I’ve read a bunch of stuff on the forums for colo-rectal cancer and the acceptance of having a colostomy seems to be quite mixed.  Hard to find anything in the forums about not doing the colostomy though. I apparently haven’t found the right search terms yet to get a better reading.  So, if any of you know of anyone who’s had to make this decision in the earlier stages of cancer, I’d appreciate it if you could put me in touch with them (e-mail would b e great).  I’ll be asking my oncologist that, too.

I meet with my oncologist tomorrow and that will  be another interesting discussion.  The final lab tests on my missing enzyme have come back and they show a severe deficiency in the enzyme, as expected.  So that means the normal protocol for post-surgery chemotherapy may not be usable at all.  One possibility, of course, is not to do any chemo, but then my surgeon will be even more adamant that he will need to have a bigger perimeter and will be even more likely to want to do a colostomy.  He already made that clear.  BTW, this surgeon is considered one of the best at what he does in the San Francisco Kaiser organization so asking for a new surgeon is not necessarily a good alternative either.  So we will be exploring what the alternatives are to post-operative therapy.  One of the reasons we have all of these discussions is that colo-rectal cancer is one of those cancers that has a high rate of recurrence.

Anyway, things are going as well as possible right now.  And I am optimistic for the future.

Yesterday and today have probably been my most active days since the week of November 1st.  Yesterday I went to Kaiser for lab tests which show that my electrolytes are almost back to normal.  Magnesium is still trailing a bit.  Later in the afternoon, Robert and I went down to Crissy Fieldfor my first walk in a long time.  I didn’t go that far, but it was a pleasure actually getting some exercise.  For those who don’t know San Francisco, Crissy Field was used during WWII as an airfield.  About ten years ago, it was reclaimed as a wetlands, tidal basin and beach along the Bay and is a lovely spot for walking and bicycle riding.   Today I spent the morning on the computer doing  various things. On Sunday, I had printed out some photographs for Denise that she had requested and Robert got them prepared for mailing.  Then we walked down to the UPS store to get them mailed.  Then we went out to Ton Kiang in the Richmond District for dim sum – one of our favorite places in San Francisco for dim sum.  And, since we didn’t have lunch till around 2, we’ll have a very light dinner – the dim sum is so good, it’s hard to stop picking things as they come round the tables.  The we stopped at a great Asian store (Kamei) on Clement Street because I wanted to buy a new Chinese steamer since I burned out my last one quite a while ago (let the water boil off).  I’m going to do a duck for Thanksgiving dinner (well, really for Wednesday night dinner so Robert can go back up to Santa Rosa on Thanksgiving Day to be with Nataliya).  I did invite Nataliya to spend Thanksgiving down here, but she is not ready for that as yet.  I hope some day she will change her mind.  Robert and I have worked out our ongoing relationship as very good friends, it would be nice to include Nataliya as part of that friend relationship as well.  Anyway, made one more stop at Kaiser to pick up my doctor’s note for my company saying I could go back to work next week.  Then finally headed home.  Robert has gone for a walk down at Crissy Field – he’ll walk out to Fort Point.  I, however, am going to take a nap.

So the more I learn, however, about my overall reaction to chemo, the less I like it.  We are still waiting for the lab to confirm, but it looks as if I am in the 10% of Caucasians who either  do not have the DPD  enzyme that allows me to metabolize the main chemo therapy used for colo-rectal cancer – 5FU – or that, while not completely missing DPD, I am deficient in it.  Important, dear brothers, for you to know.  It is a genetic abnormality so I don’t know if this runs in families but suspect it may.  However, if I had known about DPD before I started treatment, I would have had the test done first, even if I had to pay for it.  For those missing or deficient in DPD, the result can be fatally toxic if not caught early enough.  I think I just missed a bullet.  I’m still trying to get my electrolytes back to normal – still working on the magnesium, which is being stubborn.  Personally, I think the enzyme test should be a standard pre-treatment test for all Caucasians.  It would sure have saved me a lot of suffering.  It takes a long time for these toxic chemicals to totally leave the system so recovery is that much longer.  The real problem is still to be faced.  It is quite common to put a patient on chemo following surgery to ensure that any stray cancer cells are killed that might have escaped surgery, particularly important because rectal cancer has a relatively high incidence of recurrence.  However, all of the standard post-surgery chemo regimens all include 5FU as their basis.  We’ll have to see how big the deficiency is and what we will do post-surgery, but I’m not going through what I have been through in the last 3-4 weeks again.

The mouth sores are almost gone so I am able to eat regular food again. The diarrhea is not as frequent and is – very slowly – becoming more like a normal bowel movement – but, oh, so slowly. I only have 3 more radiation sessions and I’m done – I will celebrate on Wednesday. I have not restarted chemo and don’t expect to. So far no one has been able to figure out why I have had such an extreme reaction to this particular brand of chemo. We’re still waiting to see if I am missing an enzyme that allows the body to metabolize 5FU. However, while we all thought that was really reaching for an answer, it turns out that 5% of people are missing this enzyme so it is the best answer until we get the test result back. Most of my electrolytes are back to normal – potassium is still a bit low as of Friday and sodium is still coming back up, but the doctor didn’t want the sodium levels to come back up too swiftly because that could have caused other problems. All of the rest are back to normal.

And all of the paperwork to get my short-term disability looks like it is complete and my sick days for the last week I worked will be paid this week. So it looks as if I won’t have to hit the savings account for any funds to get me through this period. I’m targeting two more weeks before I go back to work – the first Monday after Thanksgiving.

The not so good news:

I’m still having a lot of trouble keeping my blood sugar under control – not too worrisome for my docs, but it bothers me. Instead of being dehydrated, I am now somewhat over-hydrated so my lower legs, ankles and feet are swollen and I spend a lot of time with my feet up – somewhat limiting. My energy level is couch potato level, which is totally unlike me. Its amazing how vegetative one can become and how little there is to watch on TV, but I now have the time to read the NY Times cover to cover on Sunday, which is actually really interesting.

Overall:

The trajectory is positive, but just moving more slowly than I would like. I look forward to finishing up radiation this week. I will not have surgery until February so I should have plenty of time to recover before the next major situation..

Robert has been a real lifesaver for me. In fact, I haven’t really been alone until this weekend, since my friend, Jane, spent many hours with me last weekend and my stepdaughter, Janie, was here on Thursday and Friday this week, giving Robert some time to see his doctor and dentist on Friday. Robert will be back tomorrow, but I have really enjoyed being by myself. I don’t know where the time goes.

Just to reiterate for everyone, however, my reaction to the chemo is highly abnormal. I asked one of my oncology nurses how often he had seen a reaction like this and he said – in ten years in chemo oncology, he’d never seen a reaction like this. So I guess that makes me special LOL

Thank you all for your expressions of concern. It has been a very rough go, but I think the end will have been worth the means.

However, I did pay a price for eating all of that wonderful food, even though I tried to not eat too much.  I’m into the side effects this week and, basically, my digestive tract from the mouth all of the way down to the tail is not at all happy.  It is not debilitating, just uncomfortable.  BTW, this happens because the scientists have not yet totally figured out how to target chemo only to the cancer.  Right now, the chemo I am taking attacks the fast-growing cells in the body since that is what cancer is – out of control cell division.  However, there are other cells in the body, particularly in the digestive tract, which also are pretty fast-growing and they get attacked as well.

So  I have mouth sores – like cold or canker sores – which are controlled by Kaiser Pharmacy’s own compound, which they call magic mouthwash.  I had heartburn earlier in the week, but magic mouthwash, which you swallow after swishing it around your mouth, and prescription pepcid got rid of that.  No nausea at all, but lower intestinal tract upset, controlled fairly well with Imodium-D.  So the side effects so far are disagreeable, not debilitating (though I spend a bit more time in the bathroom then I would prefer), but they are temporary and will go away once this whole process is over.  Though, of course, they will not go away immediately since it will take a couple of weeks for the chemo to totally leave the body once the treatment is done.  That’s one of the reasons we wait a while after the chemo and radiation is over before subjecting the body to surgery.  Too much assault all at one time is not the best strategy.

I have worked full-time through these first two weeks and have not found it to be a problem so far. If I did physical work, I think it would be a problem because I tire more easily doing anything too physical so I have given jup exercise for the time being.  I’m adjusting my diet – bland – which is a total bore, though I am making clam chowder for dinner tonight.  I think that will be all right.  If I can get the diet under control, the lower tract will ease up and I’ll sleep better.

Robert will only be here a couple of days this week since he is packing up to move his household into storage on Saturday.  From next week on, he’ll spend most of the week down here, coming down on Monday morning and going back up to Santa Rosa on Friday to stay with Nataliya for the weekend.  The move is hard for him, and he will not have Ariel with him during the week since Ariel will be staying with Nataliya.  Touche is nowhere near as friendly as Ariel and Touche has adopted me so he’s not that friendly to Robert.  However, I think Touche will come around.  We just didn’t think that Ariel and Touche would get along any more since Touche has come out of his shell.

I know the photos from the balloon ride  did not upload properly last week and I will try to figure it out later this week.  Wordpress has changed since I used to use it a couple of years ago and so I just need to take the time to figure out how to include the photos directly in the blog.  I uploaded them, but I don’t yet know how to insert them into the blog post itself.  They’ll get there one of these days.

My first reaction is a full-time chemo infusion is a major drag – radiation is a piece of cake compared to chemo.  That is not, of course, based on side effects (as I said, yet to come), but on pure inconvenience.  You may find the following TMI if you don’t like details about dealing with sickness and treatment.  Feel free to skip down a few paragraphs.

I go for radiation each morning (Mon-Fri) and all that requires is getting up a little earlier (in order to get it done before work), driving to the radiation oncology facility, partially undressing and putting on a “robe”, laying down on a hard table and having four zaps (one from each compass direction and none taking longer than about 10 seconds), getting up and redressing and going to work.  As I said, not a major intrusion on my life.  I expect that the eventual side effects will be more severe than the chemo, but the whole procedure is not a big deal.

For chemo, I get a needle inserted into my chest port every Monday morning.  The needle is attached to a thin line which is attached to a plastic bottle about the size of a fat baby bottle, within which is my chemo dose for the week.  I have it taken out every Friday afternoon so that I am free of all of the paraphernalia for the weekend – ah, lovely weekend!   So there are two major problems with this methodology and I would have thought that someone would have figured out a much better method by now, but what the hey.

First, of course, is what to do with the bottle.  Of course, it can’t just hang down knocking against one’s knees.  That would kind of distort and put too much weight on the needle and would make it hard to walk.  So you have to get some kind of carrying case.  I got a leather fanny pack and that works fairly well except for that fact that you have to learn to sleep with it and that took a bit of adjusting.  Nataliya has given me one of those small over the shoulder leather purses that I will try this week for daytime use. She’s had several friends who have gone through this kind of treatment and the purse worked well.  I think it will be nicer to wear with clothes and not bulge out as much as the fanny pack does, but expect that I will still use the fanny pack at night because it’s more securely about my waist and I’ve now figured out how to sleep with it.  Luckily, I am not a stomach sleeper and the line between the needle and the bottle doesn’t crimp easily.

Second problem, however, is more inconvenient.  I don’t have a bathtub in my apartment – only a shower – and I am not allowed to get any water on the needle that is stuck in the port because the water would potentially introduce bacteria directly into the bloodstream since the needle and chemo are going directly into an artery.  Obviously, that is not a good idea.  So, without a bathtub (and I strongly dislike baths anyway – sitting around in dirty water – ugh), I am forced to compromise.  I start with a shower for the lower half of the body (Robert has improvised a plastic bag for me to wear over the upper half).  Then I follow that with washing my hair over the kitchen sink and finish up with a sponge bath for the upper torso.  Adds at least 15 minutes to my morning routine.  It was absolutely DIVINE this morning to take a shower again!  You cannot believe!  But at least I get three showers a week (or four, if you count the fact that I took a shower on Friday as soon as I got home from having the needle removed) and only have to do this four mornings a week.

So enough of the gory details.

Jane and I went to dinner at one of our favorite restaurants Plouf (French and heavy emphasis on mussels done 6 or 7 different ways) and then to the theater on Wednesday night – the first play of our five play season series.  It was a revival of a Hart-Kaufman play from the 30s called Once in a Lifetime.  The plot is about three young vaudevillians who realize that vaudeville is dying and they think their chances of doing something else hang with talking pictures which have just started in Hollywood so they head for California.  Three acts – supposed to be a comedy, but we did not stay for the third act.  Shall I say it was okay, but not anywhere near interesting enough even though it was supposed to show how venal and corrupt the whole Hollywood culture was and is.  Critics seemed to like it, but neither of us did.  Have much higher hopes for the next play – first week in November – which is David Mamet’s Race.  That’s about a white male VIP who is accused of raping a maid of color in a hotel – shades of Dominique Strauss-Kahn! – and Mamet is almost always good.

Robert came down early Monday morning to take me to my first radiation and chemo appointments.  He went back to Santa Rosa on Wednesday afternoon and came back on Thursday, left again on Friday.  I don’t need constant attention yet and he is putting his house in storage until he can find a full-time job so he needs to spend some time packing up since he has only two more weeks before he will be out of a home for the time being.  He’ll be down early on Tuesday morning.  We are working this out so he can spend enough time to get himself moved out before I really need him to be around.

Okay, now time for the picture show.  I hope, because this no longer works quite like it used to, that the six pictures of the balloon ride I singled out for this blog are attached in some format.  I’ll post and hope for the best.