Living after chemo, part 3
|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 treatments (brain surgery, radiation, and chemo and even some alternative treatments) can go in the year 2009 and 2010, will ease minds and give some hope, comfort and success. I went through the first three, although not as far as they wanted with the chemo, but far enough to know what it's like. Now it's time to go in other directions.
12/27/09 My last chemo dose was August 18, 2009, after a total of 8 "treatments" over 10 weeks. Now it's really time for us to concentrate on my nutrution. I need to rebuild my immune and other system before the cancer completely takes over, and I don't know how. I don't have any time for "guesswork", I need proof.
My new Dr. Fritz is a Naturopath, and after examining me and my history went after this unknown "cause" of my body failing. More testing required. I colleced samples and sent them off to Washington for gastrointestinal tests. Results showed a lack of digestive enzymes, so I'm supplementing this with bio enzymes and my disgestion started back up. The test showed and intolerance to glutan, soy and dairy so I quit eating thosee, never did soy anyway. The test found two bacterial parasites, so I'm taking two things to kill them off without antibiotics.
Chemo was surprising, is that the causes of cancer was not discussed, the doctors just wanted to treat the symptoms, not change what was causing cancer to spread. Their "success rate" was not discussed, and articles I read about that just talked about an "alive after 5 years" rate, as if being alive after 5 years was a success of their chemo therapy. On the other side is the "death rate" and seemingly ignored. Chemo can cause death, but when it does the "cause of death" is not listed as chemo but instead things like lung cancer. An example is my uncle, who had shortness of breath and was diagnosed with lung cancer. He was in good health and would have lived a long time, but he was offered chemo even though in his 70's. Chemo therapy killed him in 3 days, but his death was listed as caused by lung cancer, not the chemo. Why?
People have told me, "I know so and so, he had chemo and it cured him, he is still alive". True perhaps, but did the chemo cure him or did he survive in spite of it? People don't tell me, "I knew so and so, he had chemo and he died". The failures are forgotten, and they are not around to tell their story. Chemo appears to work for a few cancers, mostly for young people but we have a lot to learn. It appears more useful to control the tumors and give us time to find the true cause and cure that.
Well, I'm not one to sit around and do nothing, nor is my wife. We spend a lot of time looking for information on cancer treatment. There is a lot of misinformation available and it takes time to read enough to tell the difference between a scam and a treatment program that helps. To make it harder, there isn't a treatment that will work for everyone. We are so different, and we are different in how we live our lives, nothing will work for everyone.
One thing that seems to almost always "work", is to take care of your body. This includes a lot of testing, because we are all different, have had different diets, exercise, exposure to carcinogens, and have different needs. This is where I'm at now, getting tested to find out what I need to return my immune system to optimal operation. If my vitamin D levels are high already, then taking more vitamin D will not help. But vitamin D is not normally tested for with a blood test, nor are many other vitamin levels. So just taking supplements can be a waste or even harmful, it's a guess without the right kind of testing. Professional help is essential, one that knows what to check, what to look for. I have a Naturopathic Doctor now, with her guidance my testing has begun. I'm having a gastro intestinal test, and a vitamin D and vitamin B12 test now, with the B12 results back already, which look good to me, but my doctor may not think so. I have a new multi vitamin designed to flush out the heavy metals left by the chemo Carboplatin treatments, and then I'll have a multivitamin designed to rid my body of the heavy metals left by the chemo Taxol. Now the focus is on rebuilding my body and immune system, not on killing the cancer, or whatever you want to call it. I need a guide, even if I followed a treatment that someone else had success with, it might not be the optimal one for me. Conventional treatments could be required to keep the cancer under control until my body can handle it, as that could take time. Changes in diet will help at least slow cancer growth, like avoiding certain meats and sugar. More outside exercise will also help.
If you investigate alternative cancer treatments, watch out for scammers, there are many. It takes a lot of reading to decide which ones may help and which are just trying to make money. Graviola is a good example, it looked good to me first, but with much careful reading I decided it is basically a scam, and it was hard to tell. So whatever you find, be skeptical and use your expert to help.
Wish me luck, this could be very interesting. I'll post developments as they happen. I'm still off the steroids, last one 10/11/09, and the cluster headaches are usually bearable and slowly becoming less frequent. In fact no headaches for over 24 hours today (10/30/09). At present I'm taking no prescription drugs, but this changes when I need some.
11/4 We made it to the Wurstfest Regatta, I still have a ways to go it seems. They kept me up past 11 Friday night, but Sonny and I did all three races on Saturday. We didn't do well against the Flying Scot circuit racers but learned more. Sonny helmed the 2nd race, and we did better the 3rd race by making some adjustments. I had two cluster headaches that night, and the local fireworks kept me awake, so I was too tired to race on Sunday. Just as well and the wind died and the races were called off after one race.
I gradually felt better and Alison and I went to Austin for our blood tests on Tuesday, and made an appointment for us both on Friday with Dr. Fritz. I got lot's of sleep that night, and woke up Wednesday feeling good again. I've been up and down the last few weeks, but today I'm feeling more hopeful again. For some reason I woke with the conviction my tumors are smaller. The chemo and steroid side effects continue to lessen, I've been off steroids for over 3 weeks and off chemo for over two months, they sure last a long time.
Today is the Gamma Knife conference, so we should learn if I'm a candidate for that soon, to take care of the new tumors in my brain.
A friend of mine, also with cancer, was recommended Super Curcumin, which is part of curry. He sent me a link and I ordered some. At least one report said it can reduce cancer tumors, his doctor ok'd it, so I asked my Dr. and began taking some too. Again, no side effects.
11/15 Ah, my anniversary. Six months since my brain surgery, and still alive! I'm still recovering from the chemo, have been two weeks without a cluster headache, and five weeks with no steroids, so I'm making progress. The new treatments with Dr. Fritz are showing promise, and I'm on no prescription drugs. Still have neuropathy causing the numb foot, although it has spread up to my knee. Still have some pain in the leg, and also in the back, etc., but I can still move and walk. Good days and bad days, but on the bad ones I try to look forward to tomorrow being better, which it usually is. Many thanks for the donations, so far I've been able to pay the bills except for the total amount owed to the hospitals. Reserves are getting very low, and I had to stop teaching again because of the legs which really hurts my income, but I'm looking forward to spring!
11/17 Alas, had another cluster headache today, and I was doing so well without those. They are getting less frequent.
11/18 Leg pain kept me in bed most of the day, it doesn't hurt when I'm asleep. Sure will be nice to get up again, going to see a new oncologist tomorrow, Dr. Aung. Need a local doc for pain meds and scans, we'll try to learn more about this doctor tomorrow. Seems to be no cure for neuropathy, but sometimes it eventually "goes away". I received an email from a friend who had a friend with it, and it took years to go away but finally did. Mine does seem to have stopped spreading lately.
11/19 My, time sure flies when you're busy! Not that I'm very busy, but I have been sleeping more. I have lot's to do when I am awake, not enough time to do it all. Dr Aung is good not pushy with the chemo or radiation and seems much more understanding, so he's my oncologist now. He gave me a script of Oxycontin for the leg pains and they've eased off enough for me to get some sleep. I can still feel the pains, but they ease off enough for me to fall asleep.
I'm losing weight, almost down to my normal weight, 170. I haven't been "trying" to lose, but I've not been trying to gain either. I've been feeling ok physically except for the pain, but it's hard to stay upbeat mentally, getting depressed too much. I guess I'm tired of feeling poorly, but that's getting better as the chemo side effects lessen. I've been off the chemo for 3 months now, but some of it's side effects last longer, that is very strong stuff. I think I'll go to bed so I can drive to Austin tomorrow.
12/2/09 Well, up and down I go. The good news, last month I had a total of only 2 cluster headaches! Best month in a long long time for those things. My neuropathy seems like it may get better also, at least it's not getting worse. I got my 2nd acupunture treatment for them Monday and it was very interesting, the needles placed in my legs caused a noticeable "flow" to occur in my legs, I could feel something moving. Also got a few needles for my constipation and both I and the doctor could hear gurgling coming from my intestines, and the next day on that was better!
It's a bit confusing now, because I'm doing better as the chemo side efffects are going away, but worse as the cancer progresses and some side effects do not go away. Some say I'll be gone soon, and others say I'll recover. I'm sure I can't tell, but it sure is nice to be off the chemo, that wasn't right for me, although some people do better with it I've heard. I got to play dominoes with my grandkids on Saturday, and we played the way they wanted to instead of my way. Was great fun though, we just put them in rows so they would all fall down! They really liked that.
12/3 Wow, do I feel better this morning! So nice for a change, maybe it was those Chinese herbs I took right before bed. Felt so good this morning I was up at 4:30 am, just like old times. Going to see my new oncologist again this afternoon, I'm looking forward to that. Only down side today is we're running out of money and I still can't teach a class. We'll manage somehow.
12/14 Gosh, I've been feeling poorly. Sold my boat last week, doesn't look like I'll be able to sail and ran out of money. Selling the boat will float us a month or two, but I didn't think I'd cry that much. I miss that Flying Scot.
Been feeling nauseous lately all the time, but have thrown up very little. Back to see Dr. Fritz this morning, thanks to Katy giving us a ride to Austin. Alison has been doing most of the boat ads, thank goodness, since I rarely feel good enough.
12/17!!!!! I made it to an age of 59 today! And what a special birthday it's been! Alison had to go to San Antonio to be accepted as a United States citizen! I missed that as I wasn't feeling well, but Katy took her and I had several nice "presents" today??? First I had a cup of coffee with cream and went back to bed. For the first time in my life I threw up near bed on my birthday. Luckily, I usually DON'T puke, for years at a time. The coffee came out first and instead of a normal yucky pain stuff, I had a nice coffee flavor and no pain! It was so much better I threw up again, and never got a drop in bed, all in the plastic waste basket. Then I had a BM and almost make it to the toilet, only missed one glob onto the ceramic bathroom tile, not in the grout, so it was so easy to wipe up! Another joyful moment, but I hope they don't happen again, of course, missing the grout is great!
The wood to redo the roof arrived today too, Johnny should start on that soon. That's from the hail storm last March, finally getting some co-opperation from the insurance co. So it's a good birthday indeed!
12/24/09 Happy Holdays everyone! They made progress on the roof this week, hope it finished next. I fell down today on the porch, got to test my bone flap as it hit the railing just right. Guess it healed back well. Been feeling pretty poorly this week. I'm about ready for a new year.
12/27/09 Back again, in hospital that is. Too many problems, time for a new MRI looks like, to check for possible increased cranial pressure and edema from that fall.
1/1/2010 HAPPY NEW YEAR! The coming year looks good, time for me to get well and back to work soon. Last month, December, I had zero cluster headaches! Finally. The last end of 2009, hopefully, was Alison falling and spraining her foot on New Years Eve. No, we weren't partying, just a town trip, but we went to the ER to start our New Year off right, and make sure it had not broken again. Bad sprain but no new breaks, she saw two hospitals today, and has an appointment with a specialist soon. Good not to get another break, but they're finding more evidence of bone loss so there is still something wrong, we'll keep looking for the cause of that until it's fixed and she's growing bone again.
I'm feeling better, but it's slow. I get my new MRI on Monday and then we'll decide about possible treament. The neuropathy is holding steady, I'm at the peak time after chemo for this to be a normal side effect 3 1/2 to 5 months after chemo, I'm at 4 1/2 months now, so maybe getting past the peak now. Goes up and down, I can walk, but slow, and have good days and poor. Haven't had to use a cane for a few days, and my balance was good yesterday. I'm taking Unique B12, sublinqual, with B6 and folic acid, for some assistance in repairing the nerve damage of neuropathy, helps grow a new nerve sheath. I'm very optimistic about 2010 now, and expect a full recovering from the cancer this year, if I can stay alive a few more months we'll know more and I don't think that cancer will be a problem.
1/3/2010 Progress continues slow, that last trip to the hospital may have saved me again with the cranial pressure control, but was a setback in several other respects. Stress, poor food, lack of sleep and other supplements, etc. combined to slow my recovery. Thank god I have some friends helping me take care of Alison's recovery from her recent resprain of her foot, I'm not able to do it all myself.
1/6/10 It has been rough since that hospital trip. We are making progress, such as getting new scans on Monday, but I'm getting worse too. I've never felt so close to death in my life. Alison and I must care for each other, and we're both down and tired, but still alive. Friends and family have helped, but they've worn out too and need a break. Hope it warms up soon.
1/7/10 I still have peripheral neuropathy in my legs. I can barely walk and must use caution. The problems are caused by nerve damage, the nerve signals are not making it from brain to foot OR foot to brain, although some signals do get through.
I found that the signals from my feet to my brain were used to help maintain my balance. With some nerves deteriorating, these signals were inteferred with enough that if I closed my eyes too, I lacked enough information for good balance and would fall. Walking in the dark became impossible. At times I use a cane to help.
Signals going the other way, from brain to feet, are different. I can tell my foot to move and it doesn't always go where I tell it to, and sometimes not at all. Sometimes I have to move it two or three times to maintain balance. The foot usually moves, but with an incomplete signal it doesn't move far enough. Flexing the right foot is also affected, I can push the toes down a bit, but I cannot lift them up at all. I can TELL them to come up, but nothing happens. The foot is not frozen and can be flexed by hand, but won't move that way when I tell it to. I can still bend my knees, and have to flop the foot until it is standing level on the floor, then I can walk on it, very carefully.
Here is a link to the paripheral neuropathy page, with two treatment methods. Two videos. First see me get my 5th acupunture treatment.
1/10/2010. My neuropathy is worse. I can walk, but I hold onto things and am slow. More pain and my feet want to swell. I again notice loss of pointing toes up in right foot. Apparantly, I send a single to the foot to contract the muscles, and the muscle is ok, and it just doesn't move. Perhaps the signal is not getting all the way through the damaged nerve. So I need to regrow the nerves, I wonder how we're going to do that?
I had my 5th acupuncture treatment last week, and it seems to help sometimes. Helps enough that I'm going back for more acupunture.
1/13/2010 I'm doing better, it is slow getting my intestines to work properly again, but I don't want to overdo it. Feeling better daily.
Peripheral neuropathy, nerve damage in the legs. This has been gradually getting worse the last few weeks, and with other problems was not getting better. Somewhat common after chemo, and with diabetics and others, with little hope of a fast cure. Apparantly caused by nerve damage, my symptoms have been a growth of numbness in my feet, mainly the left one, loss of feedback from the feet and legs to help with my balance, loss of ability to control my feet and legs, loss of strength, and pain. It has made it easier to fall down, and my legs degraded until I could barely walk. I lost a nerve in my right leg, my foot "dropped" and I could not raise the front of it. Normally when walking I use that nerve to hold up my toes during a step, and last week I could not. That caused one fall as the front of my shoe hit a crack in a sidewalk, a very short crack.
To cure this, it is necessary to regrow the damaged nerves. This is very difficult when ill, so returning to health and providing the body with the materials needed to regrow nerves is essential. Normally, the healing process can take months and/or years if possible at all, it is not easy to regrow nerves. Here we're mainly talking about regrowing the "nerve sheath", and vitamin B6 and folic acid together are said to provide the building materials.
Also, there are many reports that acupunture can help, so I'm on an acupunture treatment program. After over a month of treatments, and supplements, I have started to regain control of my "dropped foot", I can now move it some and to me this is very fast progress. I must restart my walking program, which I did, to avoid losing any more strength in my legs. I very much want to avoid taking months or year to return the legs to normal, a much shorter time would be better. I must also control and reverse the growth of tumors at the same time, I have no choice with that. At least the last set of scans showed no new tumors, but I have some in the brain and liver that have grown.