Professor Shpitz and the way forward...

So... Wednesday was Shpitzday. Naively I thought I was just going to swan in there and get a date for closure of my ileostomy. Well, no. That's not how it works. First of all I was informed that I needed a colonoscopy and a 'leak test', which, believe me, is going to be just as horrific a test as it sounds. I was anxious that these tests would take a while to set up; through my local clinic it would have taken at least a month. Fortunately, Prof. Shpitz came to the rescue, and set up both tests in the hospital, the colonoscopy today and the 'leak test' tomorrow, and I have just come home from the colonoscopy.
I was really quite worried about having anything stuck up what has become rather a sensitive and delicate bit of me, and explained this (loudly) to any medical staff I could manage to trap in a corner for long enough. Luckily the colonoscopist (?) was a nice person and reassured me by deciding he would use a pediatric colonoscope and really just by making me feel that he was listening to my concerns. In the event it was a much easier colonoscopy than the first, last year, and I felt absolutely fine right afterwards. The results were good too, all clear and a recommendation to proceed with closure.
Tomorrow's test is another adventure in the making, it sounds slightly awful and I hope it won't really be as bad as I fear. It involves a rubber tube, contrast medium, an x-ray machine and twenty minutes of clenched muscles. I shall say no more until tomorrow, assuming I survive.
The last bit of news is that even when all these tests are done there is a waiting list for the operation. I don't think it is actually a waiting list of people wanting their ileostomies reversed, just a general waiting list for non life saving operations, and I am not sure it really bothers me. If it turns out to be a few months we will go out to Chasamba, have a lovely holiday which we both really need, and come back for the operation. It might even be better that way, since apparently it takes a while to get good bowel control back after reversal, so a good holiday beforehand might be a good idea!

I was wrong!

I have just come home from my appointment with Dr. Mishaeli, my oncologist. I am pleasantly surprised by what he said, and it has changed my mind about check ups.
Apparently, the quite new practice of operating on liver tumours has changed the outlook for recurrent cancer survivors. If liver metastases are caught early many CAN now be removed; the five year survival figures haven't yet had time to reflect this. This means it is worth doing check ups, at least cancer markers and abdominal CT, these being the best way to discover liver metastases.  I scurried home and started checking whether I can do these tests in Thailand, Taiwan and so on; yes you can! So it seems that that is what we will do. The other good piece of news is that I can do the colonoscopy before we leave, it is long enough after the operation. If that is ok I don't need another one for five years, yay! And I got Dr. Mishaeli's email, so I can always ask him if I'm not sure about anything.
All in all it was well worth going to talk to him. Tomorrow Prof. Shpitz!

To check or not to check?

So....my oncologist has thrown me out. He looked at the CT and told his secretary to tell me to come for a check up in a few months, or in his words, "Whenever you're in the country again." In other words, piss off. I'm a little harder than that to get rid of, I've made an appointment with him tomorrow ( actually it should have been Wednesday, neatly fixed just before the appointment with Prof. Shpitz, but he is going fishing on Wednesday apparently, so I got rescheduled to Tuesday, annoying but not enough to get me off his trail!). I have a few questions to ask him, but the most important one is whether I really should bother with three month check ups at all.
The thing is; ok, I know my chances are about 50/50 of the cancer coming back. If it does, will early detection really change anything, or will it just mean starting a most probably futile course of chemo which will waste the rest of the time I have? Basically, which sounds better, snorkelling round the Thai islands for as long as possible, or sitting in a chemo armchair for, granted, maybe twice as long? I know which I would choose, and unless Dr. Mishaeli gives me a very good reason to change my mind, I will. I just need to be sure the statistics I have managed to find are right; it is hard to find statistics of this kind but what I have found seems to say, 'Only 30% of recurrent rectal cancer can be treated surgically. Of those cases only 30% are successfully treated. Overall, only 1% of cases are treated more successfully because of early detection of recurrence.If you have a recurrence you have about the same chance of surviving it as you do of being crowned Ms. World. Run, run fast and don't look back.'
On Wednesday I will find out when I get the reversal of the ileostomy, hopefully. If there is a long wait for it we plan to fly out to Chasamba and come back, but I hope it will be soon. I did blood tests this morning, hoping to be able to show Prof. Shpitz that my counts are back to normal, but I've just looked at the results and they aren't wonderful. My liver is nearly back to normal, that's the good side, but I am still anemic and my white blood cells are still low. I can't understand it; I feel so much better, I walked to the clinic and felt good, no huffing and puffing at all. I have got the colour back in my face too. Weird. So I guess grabbing any spare reversal-operation slot available this week is out?

CT Scan done, on we plod...

On Sunday I had my CT scan. This time I did it in Netanya, at the Laniado Hospital, which is much nicer than the overcrowded clinic in Bnei Brac where I did the first two. I sat there for the compulsory two hours of drinking yukky contrast medium, even though none of this stuff had any way to get into my nether regions where the scan was most important. Then came the time to lie on the table and get injected with radioactive iodine, which was even more fun. At least it made my whole body hot- it was a little cool in the waiting room, ha ha. Then wait for the disc and ask how long we have to wait for interpretation, and I got a shock; three weeks! We asked to be given priority, although we didn't really have much of an excuse, and the receptionist said she would try, no promises. So, imagine my surprise when the next morning I got an email from the clinic saying my results were ready! They really came through for us, well done Mor Clinic!
Now, the results look good; no visible metastasis anywhere, no enlarged lymph nodes, the only thing is a thickening of the tissue around the operation site which is almost certainly scar tissue. I've faxed the results to my oncologist and now we are waiting to hear if these results are good enough to get a green light to go on to the ileostomy closure. We are hoping they will be, we are so longing to get out of here back to Chasamba, our floating home, waiting faithfully for us in Puerto Princesa in the Philippines. These are the last few hurdles we have to jump.
Generally I am feeling gradually better, although the improvement isn't as fast as I had hoped, probably because my liver has taken quite a shot and may take a while to recover. I have started walking, although today was too hot- we're into the ups and downs of temperature that typify autumn here, and today was almost as hot as the middle of summer. Yoga is good, I can do all the lesson now, even when it is a hard one, and I have started slowly to clean and reorganise our little house; it had got into quite a mess since I didn't even try to clean towards the end of chemo. Luckily neither of us really care. I am juicing most days, and really like the combination of beetroot, apple, carrot and celery- it is really tasty! Also still taking wheatgrass, and eating dark chocolate, drinking astragalus tea... I'm trying everything, more or less, and eating plenty of salad and fruit. Really just so if the cancer does come back I can say, "Well, I tried everything!" The problem with that being that there will always be some quack remedy that I didn't try, but at least I'm having a fair crack at it.
The best thing about finishing chemo is that I can eat ICECREAM! I have had a whole summer with no air-conditioning allowed and no icecream, I think that is the cruelest part of all. Now I can eat it, and I'm enjoying it, just finished a big bowl of  chocolate chip and vanilla, yum!

All Done!

I finished the last tablet of Xeloda on Wednesday. It is a funny feeling; a mixture of relief that this long six months of chemo is finally over and worry that now I'm flying solo, nothing poisoning any left over cancer cells. There is the knowledge in the back of my mind that my chance of surviving five years is only around 50%, and the worry that the next CT, the next blood tests, the next colonoscopy will tell me that my time is up. Maybe this seems so much more pertinent now because I am into the next stage of this saga, the waiting game. It may be that for me at least, this is the hardest part of all; until now I was being treated, doing something about it- now there is nothing I can do to influence the future. Well, I've given it my best shot, had the full treatment, taken every pill on time ( well, maybe forgot once or twice, but not much). I can at least say that I've done the most I can.
The weather has changed here, it's much cooler and although that is nice I have gotten my traditional first autumn cold. Just a sniffle, and I'm sure it's nothing to do with the chemo, I really do get this sniffle every year, at least when we are in Israel, but it makes me feel down. It's hard to sleep with a blocked nose!
Taking stock, what long term effects has chemo left me with? It seems not many; I still have a slight loss of feeling in my fingertips but I think it is getting better and may well disappear completely. I still have pins and needles and my hands lose feeling when I take something out of the fridge. My blood counts are still down, but should bounce back soon. My appetite is still variable, but that can only be a good thing, the occasional day of not eating much isn't going to hurt me; my weight is stable at a comfortable 57.5 to 58 kilos depending on how dehydrated/ well hydrated I am. My skin has held up well, I haven't had any of the peeling and soreness which often happens with Xeloda, but it is very dry and I must pamper it a bit with lotion. Fatigue is still a nuisance, but after all it's early days yet. I want so much to start walking and get strong again but I just have to wait, another week, another two weeks...

Just one more to go and I'm out of here!

I had the seventh out of eight treatments of Oxaliplatin last week, and this time wasn't too bad at all, although I had the misfortune to be assigned the nurse from hell; short tempered, careless and unfriendly....until she found out from her colleagues that I worked as a nurse for 14 years there. Then she tried to back pedal furiously. Burn in hell, Svetlana! Nurses working in Oncology HAVE to have at least a little compassion and bedside manner ( or armchair manner, I guess); this nurse I wouldn't have let treat a dog, and if I get a chance to talk to the Sister, whom I know well, I will definitely bring that subject up. To be fair, until now I have been spoiled rotten by Maia, an American nurse who is really great; she was on holiday this time.
 The Oncology dept. has been moved temporarily while they renovate, and it is stuck in an old Internal  Medicine ward; the air-conditioners there have only two speeds, freezing and off, so I spent the whole treatment under two blankets with a hot water bottle! (Cold is the enemy of Oxaliplatin.) I hope they are back home by my next and last treatment on September 11th.
I really don't feel too bad, and I'm attributing at least part of that to the wheatgrass juice I have been drinking. I am the last person to believe in quack remedies, but after looking at the amount of vitamins and nutrients in a shot of wheatgrass I decided it couldn't do any harm to try it, and I do feel a measurable improvement in how I feel. Blood tests are inconclusive, because I don't know what they would be like if I wasn't taking it; I had a big drop in all counts before I started taking it, and so far I have had one blood count taken which shows a small drop in most parameters but not anything like the previous test, and thrombocytes up. So who knows? Maybe it's doing some good. I do feel pretty weak, probably because my hemoglobin is low, so I just chill out as much as possible, which is a lot. My chess is getting much better- anemia seems to improve it, maybe because I feel much more capable of calmly thinking about the next move without hotbloodedness making me jump too soon. And I'm reading the Maddaddam trilogy, two of which I read ages ago, and the third has just come out so I'm starting from the beginning to refresh my memory, finished the first already. And following all the boats trying for the Northwest Passage this year, interesting because it is a bad ice year and I'm betting several get stuck over winter in the Arctic. One boat is a fibreglass catamaran with two small children on board!
I have lined up a CT scan for 6th October, the earliest I could do it without annoying my Oncologist, who wanted to wait a month after the last treatment. Then I have to wait for the results, which generally take two weeks, and back to Professor Shpitz to get the ileostomy closed.
So, 15 days today to the end of treatment! Or actually a month, because I keep taking the Xeloda for another two weeks after that, but it bothers me less. I can't wait to start building my strength up again, the Annapurna circuit beckons!

I'm still standing...

Sorry to all my faithful readers for being so lazy, I know it's been a long time since I updated. So, I'm now past the sixth chemo dose, and it is definitely getting harder. My blood counts are down quite substantially, and I only just scraped past the check-up before the infusion; my platelets are 98 whatevers when the lowest they should be for chemo is 100 whatevers. Still, I can tentatively say that I feel less bad this cycle than last, the last one really did me in for a few days and while I did feel really bad on the day, this time I seem not to be crashing into a really yucky state like last time.Maybe I was dehydrated, or maybe the chemo was a really strong batch, no way of knowing but I truly felt awful for a while.
 I have learned that it isn't a good idea to try and force my body to do anything it doesn't really want to do; I'm just worried it will get spoiled and want an easy life after chemo too. On the other hand I am quite determined to do the Annapurna Circuit next October, so I guess I will have to lick it into shape by then, whatever it thinks about it!
The timetable for the next few months looks like this; September 11th last chemo dose, early October CT which my oncologist is quite optimistic about, in fact he said that he is confident that there will be no pathology visible, to which I answered,  so why do I need a scan? Of course I had to ask, and the answer is that this is the baseline scan, so that if there is recurrence later they know it is new. Then back to Professor Shpitz to set a date for the ileostomy reversal, hopefully some time in November, and some time in December ESCAPE, back to paradise!!!!
Chasamba is waiting for us, the season will be perfect to sail to the Gulf of Thailand, it is all I am thinking about and it keeps me going. Just two more doses of poison, one scan and one little operation and we're out of here!