Living after chemo, part 1

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Home Discovery, the Diagnoses Brain Surgery Recovery Begins MRI head scans Funeral Postponement Party Peripheral neuropathy
GammaKnife, tumor #2 Tumor #3, the lung Chemotherapy Blood test results Living after chemo, part 1 Living after chemo, part 2 Living after chemo, part 3 My cancer "cure"

Purpose: My purpose in making these pages is to help people. My hope is that seeing how cancer treatment (brain surgery, radiation, and chemo) can go in the year 2009 will ease minds and give some hope, comfort and success. I went through all three, although not as far as they wanted with the chemo, far enough to know what it's like.

This is my personal experience, David Luckenbach, diagnosed with brain and lung cancer on May 13, 2009. A sailing instructor who smoked and drank, and almost died, saved by friends and angels and given another chance. Odd fellow I am, always ready to help other people, and neglected myself.

Cluster headache record, if it says Maxalt that means it was bad enough for me to take a Maxalt to relieve it.

8/18/09, last chemo
some headaches
8/24, 1pm, headache
8/25, 2am, Maxalt headache
8/26, 1:30pm, headache
8/26, 4pm, Maxalt headache
8/27, no headache 8/28, Maxalt headache, 12 to 2am, only one 8/28
8/29, no headache
8/30, Maxalt headache, 1am to 2am
8/31, stopped steroids, no headache
9/1, 3am, headache
4pm, very bad Maxalt headache
9/2, 3pm, Maxalt headache
9/3, 2pm, headache
9/4, no headache
9/5, 2am, Maxalt headache
7am, headache
9/6, 4pm, short headache
9/7, 1pm, headache
3pm, bad Maxalt headache
Too many, back on steroids
9/8, 4pm, headache
9/9, 6pm, mild headache
9/10, 10pm, mild headache
9/11, 7pm, Maxalt headache
9/12, 8pm, headache
9/13, 1pm, headache
9/14, 10pm, headache
9/15, no headache!
9/16, 8pm, mild headache
9/17, 10pm, mild headache
9/18, 11pm, mild headache
9/19, 10pm, headache
9/20, 9pm, headache
9/21, no headache
9/22, headache
9/23, 2 headaches*
9/24, no headache
9/25, no headache
9/26, 1pm, Maxalt headache, 10pm headache
9/27, 10pm, headache
9/28, 11pm, headache
9/29, no headache
9/30, Maxalt headache
10/1, 7pm, headache
10/2, no headache
10/3, no headache
10/4, stopped steroids, midnight headache
10/5, headaches!
10/6, headaches!
10/7, headaches!
10/8, 3 headaches
10/9, headache
10/10, headache
10/11, 2 headaches
10/12, 2 headaches
10/13, I lost a day somewhere
10/14, 4 headaches
10/15, 2 headaches
10/16, 3 headaches
10/17, 6 headaches
10/18, 1 headache
10/19, 1 headache

My last chemo dose was August 18, 2009, after a total of 8 "treatments" over 10 weeks. My body has been damaged enough. Looking back, my wife helped me remember the details. After the brain surgery on May 15, I felt fine, we even had a party. After the Gamma Knife on June 11, I felt fine but did have a headache the next afternoon. One pain pill and a nap and it was gone. I felt great all the time, full of energy and was off the steroids from the operation.

Chemo started on June 16, and my world began turning upside down as my body was damaged. I started writing this page after I quit chemo, looking back now things were worse than they looked at the time, because the Dr. masked the effects of the chemo with large steroid and anti-nausea injections before each "treatment". Alison went back and began this history of what happened, and I'm expanding it:

June 16, 1st chemo dose. Later I found out they gave me what they call "pre meds" first, and they said it was Dexamethason, the same steroid I had for the brain surgery, and two antinausea drugs. But in the hospital for brain surgery, they gave me 6 mg every 6 hours, for a total of 24 mg per day, the max dose they said. For my first chemo, the cancer center gave me 20 mg all at once! No wonder I felt good for 2 days, and didn't notice the damage from the chemo, no wonder I couldn't sleep.
June 19, tired
June 20-22, tired
June 23, 2nd chemo dose. In the "premed" mix, the steroids were 10 mg, instead of 20 mg. Two days later I was in bad shape. Rectal bleeding, always tired and felt bad, and my cluster headaches return worse than ever. What's going on? I felt fantastic, now I feel horrible.
June 25 Cluster headaches started again after over 6 months with none. Cluster headaches are said to be the worst pain known to man or woman. Also known as suicide headaches, and before Jack diagnosed me correctly I thought suicide a good name for them. Jack is one of the best doctors I have ever known. I've had these headaches the last couple of years, and normally I get a cluster, maybe 1 or 2 per day for less than a week, occasionally after that for a week or two, and then they are gone for over 6 months. Not this time. A bad time, bleeding from the rectum was near constant, and I spent a lot of time in bed.
June 26-30, 5 or 6 headaches a day. In the past, one Maxalt worked fine and usually for the rest of the day, now I'm taking 5 or 6 a day and killing my kidneys. Recommended limit is 0.6 Maxalts per day, and I'm takng 5 or 6 per day, so I start lookin for alternatives. One is steroids, so I'm back on steroids. This helps a lot, but I still get headaches. Since I REALLY don't want to take steroids and Maxalt at the same time, non kidney killing alternatives become more important.

Oxygen and caffeine are recommended by Jack, 6 liters/min of oxygen and coffee or tea. Sooner in headache the better. I get supplied with oxygen plus have a small bottle to take with me in the car, and it doesn't take long to brew coffee.
I now always get headaches 2 or 3 days after chemo, but usually get them to ease off with oxygen and coffee in 15 or 30 minutes, without taking Maxalt, but I'm on a steady supply of steroids, twice a day. Cluster headaches are one of the last things you want, but I do try to look on the bright side, and they are a good indication of many other things. Thanks God they are rare, and most often only affect white males around 50 years of age.

July 6, sleeping a lot. Spending a lot of time resting from the headaches, they are so tiring. Looking back, it seems likely they were brought on from the stress of chemo. If so, they should stop when I get off the chemo.

July 13, round 2 of chemo starts, once a week for 3 weeks. Was at Tom's house and had a headache, drank all his coffee and he mentions he has iced tea in the fridge also, so I drank that too, and oxygen. It was pretty obvious that tea works better than coffee! It should, it has more caffeine, but I hadn't tried it yet. I switched to tea instead of coffee and carry it with me in the car.

July 28 Dr and I reduced steroids from 4 mg per day to 2 mg per day because of increasing side effects. Ringing in ears, talking too much and too fast, almost impossible to sleep, only 1 to 2 hours sleep per day. No apparent difference in headaches, and side effects ease a little, so 2 mg/day seems ok, but now I'm getting bad muscle cramps in my hands and feet, common with this chemo and taking steroids too long. Quite painful cramps, and they make my hands useless when they occur. I ask the doctors, are told the muscle cramps could be caused by being on steroids for too long, and never had muscles cramps before. Maybe it's the chemo?

Aug 10, still too many side effects, so Dr and I reduce steroid dose to 1 mg per day, and for an experiment, I cut out steroids altogether on Wednesday the 11th, since I got 10 mg with a chemo dose on the 10th, I figure it shouldn't make a lot of difference to cut 1mg/day, and on Wednesday it didn't. Crazy perhaps, but I really want to know what is happening, I want some facts. Only person I can test this on, is myself.

Aug 12, started off ok, until I stopped for a spinach quesadilla lunch at Tamale King, they're really good and I've had them many times. This time a headache started when they arrived, but I'd already ordered tea and had a great waitress who neve let me run low on tea. I ate and drank tea while the headache grew in intensity. I had to stop with 1/4 quesadilla left, I wanted to eat it but the pain had become too great. The waitress gave me a full go-cup of tea, and I went to the car and breathed oxygen and drank that tea while the headache got worse, trying not to take another Maxalt, almost took one but the headache finally started easing off. I drove to Forrest's while still on oxygen. It was a bad headache, and I decided the experiment was a success. The constant steroids were definitely helping the headaches, and this was not a good time to stop the steroids. More evidence the increase in headaces is due to the chemo, not the steroids. Back on steroids, 1 mg per day dose. Not enough, headaches continued, so called Dr and back on 2 mg per day. Easy bruising and bleeding has also started, and I never ever bruise and rarely bleed at all even when cut, or never did before, but my platelet count has dropped from 478 to 194.

Aug 18, last chemo, "treatment" number 8. First I got the normal pre meds, 10 mg of steroids, two anti nausea meds, and a shot of benedril. Then first chemo, Taxol, and another headache started. Began oxygen right away, 4 liters/minute, and I had forgotten to bring tea. Luckily they had some tea at the chemo place, and I drank it as fast as I could. Not enough, so Tanna gets me a Maxalt from my car, which worked well and the headache goes away, but not until after I'm crying from the pain. Another bad one, and right after a big dose of chemo. What is going on? Brought on by the chemo? Now this cluster is longer than any cluster before, two months instead of two weeks and getting worse even with steroids.

Easy bruising gets worse, it seems each day I find a new bruise on my arms, or more, with no recollection of even bumping myself. I think, if my skin is bruising this easy, what is happening to my organs? I start bleeding from my rectum again, every day, I don't like this a bit. I go for my walk, and no way I can walk my 2 miles anymore, once around the block is hard. I get short of breath much sooner, sometimes just from rising from bed. Very odd for me, a few years ago when 50 I rode my bicycle 112 miles in one day, with all my camping gear.

Recovery from chemo begins, I hope.

August 22
In the morning, I tell Alison I am done with chemo, and she says, "NO, you can't stop, you will die!" I say, "Sorry, I've had enough. I've watched the blood test results, but more important I have lived it. I've let them inject chemo into my veins and seen and experienced the results for over two months, it is time to stop." She disagreed, I went back to work, and she was quiet for an hour. Then she crutched into sight, and told me, "I've investigated, you must never take chemo again!" What a turn around, after investigating she agreed, chemo is very much worse than we thought, and should only be a last resort, if that. While surgery and radiation have worked, and they worked well, chemo has not gone well at all. A reduction in tumor size has been seen, but that could have been because of my diet changes begun last May, and it is common to see a temporary reduction in size with these chemos. Dr. Preston was expecting a slower "growth rate" from the chemo but still a growth, and told me so before the scan, but we saw in the scan a 20% reduction in size instead. Chemo or diet change? Or a combination of the two? We shall see.

I continue to improve my diet, as I've done since May 13, this is my main attack on the cancer. Improve with food, not "supplements". Instead of trying to poison my body, I'm trying to repair my body so it will control the cancer as normal. As we find something proven to be bad, like margerine or preservatives, I eliminate it from my diet. When we find something reported good, I decide to include it or not. Spinach is good, I include a raw baby spinach salad most days. Salad dressing is out, almost all have preservatives, but I used some salt and cayenne pepper this evening instead and it was delicious. Blueberries are very good, I have some daily. A few walnuts and almonds, and some cashews, but no peanuts. Alison continues to research cancer and diet, and has saved the information on one of her websites, Femtalk USA. Here's a link to her Hit cancer hard page, where she really puts the options together for getting rid of cancer. We have learned so much in the last three months, and she's putting it all together to help other people fight cancer.

This has been a fascinating journey, and will continue to be. I've met a lot of fantastic people, and many other patients on chemo and survivors too. Several of my former students had cancer, one 15 years ago and is doing fine. None of the chemo patients I've met do as well as me it seems, and while I haven't asked often they don't seem to have changed their diet much if any. Nobody goes sailing after chemo, but I do, or I did. One patient had a fast food hamburger and drink while getting her chemo last time, and "fast food" is one of the things recommended to eliminate as it helps cancer. Does this have an effect? I don't know, but she said her liver tumor has not shrunk after over a year of "treatment". All I can do is see what happens to me, I am the only one I can change. I began changing my diet on May 13, when admitted to the hospital and they had left me Froot Loops, Cocoa Krispies, and chocolate pudding, and skim milk, for my first hospital snack. I read the ingredients in Froot Loops and the others, and I didn't eat a thing. My diet change began then, with a vengence, no more preservatives or food colors was the first to go. I want to live long, watch my grandchildren grow up, and enjoy every single day. I was, until I started chemo, and it's been downhill ever since.

I don't know what tomorrow will bring, but I'm going to find out, and I'll tell you here. Good or bad, you'll know. I do plan to live to 109, we shall see.

August 24, had a cluster headache. Dr. Preston and I agreed that I was off chemo, although he still wanted me to get one more reduced dose that I refused. I notice a vein under my forearm with a knot, at the exact spot they injected the chemo about two weeks before. Thrombosis caused by the chemo, we used that vein only once thank goodness. Possibly it was too small for the chemo.

August 25, 2AM had a bad headache. Took Alison to have her 2nd cast taken off, and then I felt fine, for a while. Time to rebuild the body, again. It's pretty bad right now. Swollen feet, distended belly, easy bruising, no energy, ringing ears, bleeding, time for a change.

August 26, Joel came over and we put in a new icemaker and filter and set up Mike's watering tank for a small swimming pool for Alison's leg. I felt "ok" for a while, but had two headaches in the afternoon after Joel and I set up the pool. That evening we took off Alison's boot and we got in, she was so much better and enjoyed it so much to float for a while, and watch the hummingbirds and deer.

August 27, woke up not feeling good and short of breath. Made a long trip to town with Alison, and later I hooked up the solar heater #1 for her stock tank/swimming pool. The bruising has stopped, and the old bruises are fading. Still have distended belly and swollen feet, and that thrombosis in a vein, and who knows what else. Nice not to get a headache, but it arrived at midnight after all. I really want to get off the steroids, and if these headaches would stop that would help me do that. The new oximeter arrived, I ordered one of those things that clips on your finger and tells your Oxygen percentage and pulse rate. I started using it, and it seems I get odd pulse readings.

August 28, had a bad headache from 12 to 2am, took a Maxalt finally as the oxygen and tea didn't work. Was very weak, and chest pains when I went to Lowe's. Sat down in the rocker for sale for about 30 minutes to rest while the chest pains went away. Jody noticed my truck in the lot and gave me a call. Then he came by and stayed with me until I felt better. I didn't find this fun at all. Came home and slept all afternoon, felt better so worked most of the night.

August 29. On my walk this morning, I wore the oximeter to see what happened to my oxygen % and pulse rate. It was interesting, my pulse rate is up about 25% from before chemo. More odd, my pulse rate seems to change in no relation to what I'm doing. Walk slow and it may speed up, go up a hill fast and it slows down. It seems my heart has a mind of it's own now, and does what it wants. I found out one of the anti-nausea drugs in my "premeds" can cause repid heartbeat. No wonder I feel so odd at times, and so much worse than before the chemo. Feet are still swollen, and the abdomen isn't much better. It seems my intestines are partially paralized, another "side effect" of chemo.

August 30. Very bad headache at 1AM, lasted over an hour and the screaming drove me to take a Maxalt after oxygen and tea did not help.

Feet and abdomen still swollen, pitting edema it's called. Many things could be causing it, including heart failure, liver failure, renal failure, lung failure, increased pressure in the big veins of the abdomen and pelvis, very bad nutritional status, and standing on one's feet for several hours a day continuously but this should not give rise to abdominal distention. Doesn't sound too good, does it? My heart has been acting odd lately, varying my pulse rate for no reason, and I am short of breath too often.

August 31. I'm sick of taking pills. I've had two prescriptions for thrush, but I quit the last one yesterday. Antibiotics once, quit already. Two additional "anti nausea" scripts, but I never filled them, I don't get nauseous anyway. I was down to the steroids, but I didn't take them this morning, tired of taking them and not sleeping. The headaches were held off by the steroids, so I'm hoping the chemo was triggering them and I don't need the steroids anymore. So far so good, but only 8 pm.

I laid on the floor about 2pm, put my feet way up on the recliner and fell asleep for a couple of hours, and the pitting edema in my feet went down. It's coming back, so I'll do that again. All I'm taking now is a multi vitamin, a B-100 vitamin, and glucosamine for my joints. I actually felt much better today, although still weak, short of breath and distended abdomen.

9/1 Started my day with a headache at 3am, but it wasn't a bad one, 15 minutes of oxygen and tea and it's gone. Had a walk and put my feet up for a while, the pitting edema is much better today, less swelling and it stays down longer. Picked up 50 pounds of grass fed beef today. Grass fed animal meat contains CLA and Omega 3 and 6, which helps fight cancer. Grain fed animals do not have CLA. Picked up my new blood test results, which are good. Went by Forrest's to split the meat with him, and headache #2 started on the way home. Silly me, I waited until I had the meat in the freezer before I started treating it and it turned into a full blown Maxalt headache that put me in bed for 2 hours of sleep. At least I can sleep again, being off the steroids! I noticed my blood oxygen percentage is higher today and my pulse is more regular.

9/2 Withdrawal symptom from getting off the steroids, I can sleep again! After over two months with about 2 hours sleep per day, this is wonderful. I slept most of the morning, had a headache, and slept late afternoon until 10 pm. Edema swelling in feet and other chemo symtoms continue to improve. Little hunger, no steroids.

9/3 Felt better and made a town trip, but had a headache about 3pm at Forrest's house, no Maxalt. Slept on his bed an hour and skipped shopping to go home. Felt weak, lost my temper with my brother who stopped by, and I don't have a temper. Typical steroid withdrawal symptom, irritable and I have a temper. This happened the first time I got off steroids, but that was the day after instead of 3 days after. Maybe it makes a difference when I'm on steroids two months instead of two weeks?

9/4 No energy, short of breath all morning. Really feels like I stopped steroids recently instead of 4 days before. Perhaps it is taking longer to get them out of my system after taking them for two months. Felt a little better in the afternoon, and I didn't have a headache all day, first day in 4 days with no headache. Swelling is almost gone in my feet, and distended abdomen is finally getting smaller. It rained, things are looking up. Ordered curcumin, my next treatment plan, one without side effects. Had grass fed hamburger for supper, very good and very lean.

9/5 Went to Lowe's and bought a small freezer, and grocery shopping. Store sure was busy.

9/6 I woke up feeling odd, finally figured out it was because I felt OK! No shortness of breath and I had energy, so I checked my pulse rate and blood oxygen percentage. Pulse rate was down about 10% to the low 90's, and oxygen percentage was up to the high 90's. I even went for a walk and felt fine. This lasted about 2 hours, then I reverted back again. Was nice while it lasted, and gives me hope I will recover. Had a very short headache, one of the shortest ever.

9/7 Labor Day. One week without steroids, was good to have a break from them, but the headaches have put me back on the steroids. Two headaches this afternoon, and the second one very bad. Something is still triggering them, hope I can figure out what that is and heal it up.

9/8 Taking 1 mg of Decadron twice a day. Felt much better today, but still had one headache. Had a new blood test today, should get results tomorrow. I expect to see a lower platelet count, as I cut way back on the spinach to see if it has an effect. I bleed easier, that's the effect, we'll see what the blood test shows tomorrow.

9/9 Yes indeed, platelet count down to 182 even off chemo, no wonder I'm bruising and bleeding longer. Time for one spinach salad a day again.

9/10 Feel noticiably better this morning, pulse rate lower and oxygen level up this morning. Hopefully heart damage is healing. Still short of breath easily but not all the time, and bruises are fading. Had a good day, even found myself doing things like sweeping cobwebs, I have a little energy! Not having a headache always helps that, but had a mild one at 10pm. Intestines are starting to work properly again, at least starting too, and that's nice too.

9/11 Hooked up the boat and got ready for the HOT Regatta. We drove up there, in the rain, and I had to stop for a bad headache, so we were too late to launch.

9/12 Steady rain, we went to the Regatta but I didn't feel good enough to sail all day in the rain so we didn't enter. We visited until the regatta started and drove home, through the rain. Nice to have rain again! Didn't have a headache until 9pm and it wasn't too bad.

9/13 Finally had 2 mile walk again! Sure was nice to feel well enough again. Headaches are one-a-day this week, only one did I take a Maxalt for, but the headaches have got to go. More rain.

9/14 My sitting pulse rate has been way too high, over 100 and often over 110. This morning it was below 90 for the first time in weeks, still too high but it's an improvement. Alison made me get some vitamin D, she says I need a lot, over 4 grams a day. Yes, dear. New blood test.

9/15 Platelet count came up over 300. Went to see Frank at Synergy Imaging and planned a chest xray to see how the tumor is doing. I want to do an xray instead of a scan to absorb less radiation, haven't look in a couple of months. Probably get it on Friday, since my next class to teach starts tomorrow. Took Alison to the doctor too, she's still having too much pain in that foot. Today is my 4th month anniversary since brain surgery, and almost one month since my last chemo, and I'm feeling so good.

9/16 Time to go sailing and teach some people how it's done! We had a great first day with good wind and the students did very well. I stepped the mast, my strength is coming back nicely.

9/17 Second day of class, and it was a good class. I'm tired, but normally tired, and still feel good. X ray tomorrow to check on the tumor. Cut the steroid dose in half to 1 mg per day, it's making my skin so thin I keep injuring it because I've taken it so long. Time to stop the headaches and get off the steroids. I can walk 2 miles a day again, and I'm doing that to lower my blood pressure which will help. My pulse rate is falling too, I finally saw it under 80. A few weeks ago I was always over 100.

9/18 Woke up a bit sore from sailing for two days, feels good. Had the chest Xray, and the tumor is still much smaller than on 5/14/09 right before the brain surgery. See a side by side comparsion of the two X rays on the Tumor #3 page. We don't yet know if the shrinkage was caused by my change in diet, the chemo, or a combination of the two. Went by Atkins Pharmacy and met Wanda, the wellness expert, to get some good Norwegian fish oil with Omega 3 and some information. We liked Wanda, and the store had a very good selection of alternative vitamins and supplements.

9/19 First day of another sailing class, a very nice day with two good students, we all had a good time and they did well. Late night headache, but only drank 1/4 liter of tea for it to fade instead of 1 liter.

9/20 Finished my 2nd class, and it was good. A pontoon boat wouldn't run so we towed it away from the lee shore it was being blown onto until they got their motor running again. It is hard to tow a pontoon with a sailboat in light wind, but we managed and it was great fun. It is very nice to be back at work.

9/21 Busy day. Blood test, errands, and Joel and Ann came over for supper. I baked bread and grilled grass fed beef burgers. Was very nice not to get a headache all day!

9/22 Tried to get a jpg file of Friday's X ray, but it is in a format I cannot convert yet. I'm back to walking my daily 2 mile walk.

9/23 We stayed home and had a good day. I worked on the sailboat which needs a couple of small repairs and had a longer walk, then we cleaned the house. I think I forgot my 1/2 mg evening steroid and had two mild headaches late.

9/24 Long walk, town trip, baked bread, and worked. I couldn't find a loaf of bread without preservatives, so I'm back to backing my own. Simple recipe, water, yeast and whole wheat flour and nothing else. No headache. My sitting pulse rate is usually in the 80's now, a month ago it was 115. Blood pressure is coming down too, but the blood oxygen percentage is coming up. All should help the headaches stop, I hope.

9/25 Second day in a row with no headaches.

9/26 Met Jack at Canyon Lake to try out his recut sails and spinnaker on his International Tempest. Had a bad headache while waiting for him, had to take a Maxalt to stop it.

9/27 Cut my steroid dose in half again, to 1/2 mg per day. I look forward to getting off them entirely, their long use had made my skin thin and easily torn. Reducing the dose to 1mg/day has already helped this side effect a lot. My daughter and family came over and the grandkids really used the pool. They have also changed their diet to avoid preservatives, and Benny just had his DOT physical. For some reason his blood pressure, which has been very high, dropped about 20 points.

9/28 Took Alison to Dr. Burgest for her painful leg, and he thinks she has CRPS (also called RSD), Complex Regional Pain Syndrome. Not fun, and it prevents her from walking without a crutch. Perhaps caused by nerve damage, there is not a known cure but CRPS often heals with time.
I gave blood for a blood test again, and my blood pressure continues to return to normal with the lowest reading ever, 125/75. I've been reducing my blood pressure and pulse rate for several weeks now, with exercise, it's down from about 150/90 during the last month. Both blood pressure and pulse rate became elevated during chemo, which is a possible side effect of either the chemo or anti-nausea meds. My resting pulse rate had gone up to 115, but has been coming down and I hit a new low of 79 today. My blood oxygen percentage has gone up, it was usually 90-95% several weeks ago but now is usually 95-99%, much better and probably related to bringing my red blood cell count back up (spinach really helps).

9/29 Another 2 mile walk today, and finished remounting the rudder and installed a new forestay on the sailboat for tomorrows class. New blood test results - I've been trying to keep my platelet count below 400, and it seems I did that a little too well, my platelet count is down to 249. Creatinine is back in normal range and RDW continues it's approach to normal range by dipping below 20.

9/30 A very good first day of class, I have a good student. Very good wind, and I was tired. Had a bad headache in the evening and wound up taking another Maxalt.

10/1 Had a good class, we made a long spinnaker run and had good wind all day. 7pm headache but it wasn't bad.

10/2 No headache! Had a good day, tired from the 2 day class and had a nap before our town trip. Got some liquid vitamin D at Atkins pharmacy, 1,000 IU per drop. I'm taking 5 to 10 drops a day.

10/3 Met Rich at the LCRA ramp to help with his first mast raising and go sailing on his new Mac 26M, but the rain started with no signs of stopping so we took it down and planned to do it later. I forgot to take my 1/4 gram of steroids this evening, and the 2nd day without a headache, so it's attempt #3 for getting off steroids. Wish me luck, the steroids were the only prescription I was taking, and it sure would be nice to get back to zero meds except for food.

10/4 Day of rest. My first day off the steroids this time, so I lacked energy and Sunday was a series of long naps. I did get a little bit done, but not much. Looking forward to Monday when my energy level will start going back up. Had a dream middle of the night where I was getting a headache, finally woke up and I did have a headache! No Maxalt, banished it with tea and oxygen. Only reason I was taking steroids was to get some relief from the cluster headaches, and they are better this time. Two days without any so far, until tonight.

10/5 Cluster headaches returned with a vengence, too many to count. Luckily, they are a bit weaker than the last time I tried quitting steroids, and I'm not taking any Maxalt for them, just tea and oxygen. They are tiring, and I don't get much else done.

10/6 Still too many headaches to count, I'm really going through the tea and oxygen, but I'm drinking about 1/2 liter of tea instead of 1 liter to get rid of one.

10/7 Took Alison to Austin to give her fingerprints, she's decided to become a US citizen. Incredibly efficient office, we were almost home before I had to stop to disperse the first headache today. We did stop and buy an exercise bike for Alison's leg, which has begun to get a little better, she thinks. It's 9pm now, and I've only had 3 headaches today so far, finally few enough to count!
The long steroid use has caused my skin to thin and be easily torn and bruised, especially on my forearms and the back of my hands, and also to heal very slowly. It really is incredible how quickly this has improved since I quit the steroids. Just a few days and the bruises are almost gone and the wounds are almost all healed! The difference is obvious each day as my skin returns to normal much quicker than I thought it would. Stopping the steroids did cause a great lack of energy as normal, but that seems to be going away this evening, first time I couldn't sleep!
Picked up this weeks blood test results today, RDW continues to approach normal range of 11-15 with a score of 18.3, and the rest looks good too.

10/8 Had a headache right after midnight wake me up. I have a class this weekend, and with these headaches I wouldn't be able to teach, and the lack of energy doesn't help, so I'm starting the steroids again this evening. To bad, as the headaches are slacking off a bit and today I feel a little better, but the students are counting on me. Dr. Fritz, a naturopath, called me today, and I'll see her next week. She said the first thing to do is get the heavy metals from the chemo out of my body. I didn't know about the heavy metals, just the platinum in the Carboplatin, learn something new every day.

10/9 It's incredible how much better my skin is doing, no bruises at all and wounds are healing fast. I'll try to get off the steroids again tomorrow after the class.

10/10 Good class but light wind. Only one headache, late night. Good to be working again.

10/11 Today we sailed in the rain, but had better wind. I'm off the steroids again, so had a couple more headaches in the evening. The total medical saga continues, and is always getting more interesting as we learn more.

10/12 Very odd, my doctor cut me off the blood tests today, over my protests! Worse, apparantly he made this decision before he saw me. It seems if he can't get me to take more chemo he can't see any reason for ME to see what my body and blood are doing, or even to know when/if my bone marrow recovers from the chemo. I find this very strange indeed, but no worries, things they are a changing! I have a new CT scan scheduled for Friday at least. The bump in my neck is becoming more noticeable and painful, so it'll be good to get another look at it. The skin fungus is growing on my left foot, and I'll see my dermatologist on Thursday about that. Never had it on the skin before, just the toenails. Just two headaches today, so far, tomorrow could be a bad day, we'll see.

10/14 Fewer headaches than last week, hoping to get off the steroids this week. I'm lacking energy today of course, but only 1 headache today so far, 3:30 this morning and it's 11am now. Had 4 total today, and very tired from no steroids, but I'm hopeful this time.

10/15 Woke up feeling good again! Hopefully I'm going to be off the steroids for real this time. My brother just called and he has the insurance company straightened out! We should get the roof fixed finally from that hailstorm last spring. One adjuster really slowed us down. We're off to see my dermatologist to see about the new fungus, probably caused by the chemo reducing my ability to fight fungus.
Oh, today's my anniversary! 5 months since the brain surgery, and I'm still alive! Seems I'm going to last a bit longer than the oncologists thought. A good day today, only two cluster headaches and I'm still off the steroids. New CT scan tomorrow.

10/16 Got a new CT scan today, not much different, the tumors look like they grew a little. Get the new report on Monday. Lot's of cluster headaches all night, ouch.

10/17 Last night I had at least 6 headaches, it was not fun at all, but I made it. Tired all day and slept a lot, and worried about the race tomorrow.

10/18 Amazing, no headaches all night! Woke up and to the Little Brown Jug race on Stillhouse Hollow we go, my first race since last March. Alison and Dr. Jack Carter for crew, we laughed a lot. The spinnaker was only a partial fiasco. I could tell my strength was down, but we did well for the first half of the race with a good lead. Then I blew it, going the wrong way for a few miles and having to backtrack. We wound up with third place, ah well, the food afterwards was great. Had a light headache on the drive home, but with some tea not bad enough to stop driving. Midnight now so only that one today. Hope to get the new scan report tomorrow.

10/19 Bad repart, the tumors have grown, and quite fast. Plus they found more in my liver. Wonder how the brain is doing, new MRI for that scheduled tomorrow. New doctor on friday. Had a Maxalt headache early this morning, first Maxalt in a long time. I'm still off the steroids, over a week now.

10/24 Sorry for the delay, I've been sick with a cold. The MRI on wednesday showed three new tumors in my brain, possible new round with the Gamma Knife. Saw my Naturopath on Friday and she's very good, I should have gone to her long ago. I'll have to make new pages for all these as soon as I feel well enough, but I'm doing fine.

Continued, part 2

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