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!

Here we go again....

Number five. Not too bad, just pins and needles, yukky feeling when I drink anything cool, no appetite ( actually a plus as I did gain a bit during the famous 'good weeks') general tiredness. I've learned how to mess about, do nothing and not feel guilty, since if I do try to do too much on these days I just get nasty and weepy, and no-one, least of all me, needs that. So doing nothing is a good thing. I can sweetly greet Oren when he comes home from working twelve hours and say " Oh, I'm so glad you're home, I'm dying for a cup of tea." This is a big improvement from, " Where have you been, I'm exhausted, I did the laundry, made dinner, went shopping, why do I have to do everything, wa wa wa..." ! And Oren being so sweet, he really doesn't mind making me a cup of tea, cooking something nice for dinner, clearing up at least a bit of the mess I've made during the day. I really am very lucky, and I do appreciate that.
I did go to yoga, and even stopped on the way back to get stuff for Oren's muesli, which he mixes himself.He uses an incredible amount of oatmeal, we are getting to the point that we could get deliveries straight from the oatmeal lorry! I should eat it too, it is good for my stoma output, but I'm not really keen on it. In fact I find I am drawn exactly to the foods which are the least recommended, salads, oily food, sushi, burekas, anything which I know I will spend the next few hours emptying tons of liquid output after. I don't really care though, I am not going to survive on potato, rice and oatmeal for the next few months. I just drink more, probably four to five litres a day, and keep my salt intake high. Potato crisps are one recommended food that I do eat!

Halfway, and I've found my best friend again!

Four rounds of Oxaliplatin down, four to go. I feel fine now, the two good weeks are ahead of me and I'm on the home run. No worsening of side effects, even I can say that this round was easier for some reason, maybe because I finally started using the Lorivan which was prescribed for me to use on the days after the IV. The protocol has changed, I don't get calcium and magnesium any more because new studies have shown that it doesn't make any difference to the side effects. My personal experiences agree with this, it didn't make any difference and saved me half an hour or more at the hospital.
The best thing that has happened to me for a long time happened this week. I found my best friend again. I don't know how we lost contact but I am so glad she is back; I went up to meet her in the nice, quiet community where she now lives and we spent the whole day just talking. I was hoarse when I came home! So much has happened in both our lives since we lost contact eight years ago, we have both changed but somehow we seem to have changed in the same way. We still just understand each other, and it is wonderful. I feel happy in a way I haven't for a long time. Just to balance things out the microwave packed up this morning- good trade off, universe, I'm willing to renew all my electrical appliances this way!

Out with the goats, in with a Green Monkey!

There is a traditional Israeli story about a man who goes to his rabbi and says " Rabbi, please, you have to help me, my wife and I and our five children and my parents and her parents, we all live in a tiny one room house, I think I'm going crazy. What can I do to improve this situation?" The rabbi smiles and says, " That's easy. Buy a goat and take it home, let it live in your house with you for a month and come back to see me." The man really thinks this rabbi has gone mad, but being a religious man he has no choice but to do what the rabbi said, so he gets a goat on the way home. We'll gloss over the terrible argument he has with his wife, the delighted reactions of the kids and the surprised expression of the goat, and fast forward a month. He drags himself into the rabbi's office ( or whatever rabbi's have, maybe it isn't an office) and falls on the floor crying. " I can't stand another minute of this," he screams. The rabbi smiles and says, " Now take the goat to market and sell it." The man whoops for joy and rushes off to get the goat. When he gets home from the market he goes into his house and is amazed at how much space there now is...
Suffice to say that Pziza, Iza and her kids are now frolicking happily in the meadow belonging to the boarding school that Oren's brother works at, and I feel that there is so much space in my life...
And I have met a Green Monkey! Green Monkey, aka Shannon E. Kennedy, is a wonderfully creative and sometimes painfully honest blogger who has been through having breast cancer and now has rectal cancer. 'Follow me, I have no idea where I'm going', is her motto, I love it! Here is a link to her blog, and it's on the blog roll too. Green Monkey Tales
I started this blog for two reasons. One was to keep friends and family updated, so I didn't have to worry about forgetting someone or whatever. The other reason was that when I was first diagnosed I looked for advice, support or just people with similar experiences to know what it was really going to be like, and it turns out that there are very few of us 'wrecked tail cancer' ( love that!) bloggers out there. Now I am part of the way through the treatment, I have had the pre-adjuvant therapy, the operation and some of the adjuvant chemo and I do have things that I have learned, I can say to people just starting this, " Keep your head up, it's not as bad as it sounds, you can do this!"
 I don't know how many people like me read this blog, I know there must be a certain percentage of readers who are going through this too but Green Monkey is the first to make contact with me, and it makes me feel that it is so worthwhile blogging. Honestly, sometimes I was wondering whether I was talking to myself! ( Which isn't too bad anyway, sometimes just writing is good therapy anyway). So, I'm really happy this week. Also because I'm into the time when I feel good again after the IV, and I have another eleven precious days of good feeling time. And I have adopted a dog, she is lovely and we went to the beach with her today and had fun, but I'll write about that next time.

A Tospy Turvy Week.

I have felt so up and down, inside out all week. I don't know if it is the steroids or just the effects of chemo getting more pronounced, but I felt weird, moody and not myself. Today I am feeling a bit better, I hope this trend will continue. Oren is working very hard all week, which doesn't help; at least he got a pay rise though!
We have a problem with the goats; it is too hard for me to do all the work with them during the week when I feel bad- I just want to curl up in a ball, not to get up at 6 am to milk Iza and feed them, take them to pasture for hours and drag them around after me. Unfortunately the other people who were supposed to help are too busy too. The end result is that the goats are suffering, although being goats they don't really seem to care. We haven't milked Iza for the last few days, just let the kids have all the milk, lucky them. It is a bit hot to go out to pasture anyway, so as long as they get plenty of food and have an hour or two free in the meadow to stretch their legs every day I think they will be fine. Meanwhile Pziza has been taken to the boarding school where Boaz works to meet a nice billy goat and hopefully start a family, it is quite a bit easier without her since she was the source of most goat naughtiness around here. Maybe she will come back with an education too!
Other news; we are in the process of adopting a dog! Sofi is part canaani , the Bedouin dog, and three years old. She is a good dog, not too big but big enough to guard, and she seems to be fitting in well. She has been here for a day so far, and seems fine. She doesn't worry the goats at all, Iza makes a kind of half hearted 'danger' call when she comes up to her but there is no real tension or hysterical running off, which goats do for no reason anyway, it's a goat thing. The kids don't even run to Iza when they see her, they seem to realize that she isn't going to attack them. Still, I am a bit careful, I don't completely trust her yet. She doesn't seem to have a wonderful memory for people, she knows me but barked at Oren when he came home even though he had given her a bowl of chicken the day before! She had better get that straight! She isn't in good condition, but I expect a month or two in the Mosenzon household will do its magic.
We aren't really thinking ahead too far, we know there is a good chance that we will go back to Chasamba at the end of the year but we will cross that bridge when we get to it. If Sofi makes herself welcome Oren's parents might keep her. Anyway, for the next few months she will have a good home.

Third time, getting used to it...

Yes, it's those icky days again. This time seems a bit less nasty than last time, no leg cramps, less flashes of headache and chills and meanwhile I still have an appetite although I know from the last times that the nausea will probably start tomorrow. One of the worst side effects is because of the steroids I get; my mood swings between anger, depression and jitteryness, and I can only sleep on the night after treatment with half a Lorivan ( like Valium). Still, I am getting used to this cycle of treatment and it makes it less awful knowing that in a few days the worst will be behind me and I will start feeling good again. Also this time the nurse got a vein first try, this makes such a difference! I wonder whether the strength of the chemo is really always identical, the side effects are so different each time.
I have to say that yoga really helps me at this time in my life; I get to the lesson feeling tired, a bit depressed and unhealthy and leave feeling relaxed, happy and energized, although a little tired sometimes too, it is very intensive vinyasa yoga. I am so lucky to have found the perfect class and teacher for me- for anyone in Pardes Hanna who is reading this, it is Hilah's class at Hakika sport centre.
Meanwhile the goat kids are growing at a tremendous rate and skip and race round the little meadow behind the house while Iza, their mother looks on nervously; she would run round after them if I didn't tie her on a long rope. Having kids running round is one thing, but Iza is a bit too big for comfort! We started milking her seriously yesterday, we separate the kids at night so they can't suckle and milk her in the morning. We got more than two litres of creamy, rich milk and made wonderful yoghurt from it.
Everything else here is fine, the weather is getting hot and I hope soon to get to the beach. Now that will be an experience to write about, swimming with a stoma! I'll wait until the side effects of the IV wear off though, so probably not this week.