Living after chemo, part2
|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) 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, but far enough to know what it's like. Now it's time to go in another direction.
10/29/09 My last chemo dose was August 18, 2009, after a total of 8 "treatments" over 10 weeks. My body has been damaged enough. The chemo side effects are different for different people, thank God I didn't notice them all happening to me. The common treatments of the cancer industry in the US, surgery, radiation, and chemo are mostly determined by the FDA and the pharmaceutical companies, in other words, is it profitable? Non profitable drugs are not clinically tested as much, the main determining factor is profit, and the biggest profits are with patentable drugs. Normal for the US, but we have the most cancer so perhaps this is not the best approach.
Having experienced the three major approved cancer treatments, I've learned many things. Surgery is useful, for a large tumor in the wrong place with little time it can be the best treatment, as mine was. Radiation also has it's place, a small tumor in the middle of my brain was apparently killed with the Gamma Knife treatment. Both have risks of spreading the cancer. Chemo was a disaster, I began with my immune system working well and feeling great, and after 8 "treatments" I preferred death I felt so bad. I'm still trying to recover from the chemo side effects.
Chemo could have been better. I was not warned of all the side effects that are possible, and had no recommendations for building up or defending my immune system. What 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, 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.
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 would not be the optimal one for me. Conventional treatments may be required to keep the cancer under control until my body can handle it, and I will probably get another Gamma Knife treatment for the new tumors in my brain. Changes in diet will help at least slow cancer growth, like avoiding red meat 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.
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, but 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.
11/7/09 New surprise! Ha, looking forward to the end of chemo side effects, that's for sure. A new one appeared a week or so ago, peripheral neuropathy. My left foot, around the small toes, became somewhat numb and tingly. It spread to about half my foot, then to the heel, then to the right foot but just the heel at first. Spreading up the leg, but not as fast as the left leg. Nerve damage, caused by the paclitaxel (Taxol) and Carboplatin chemo drugs I was given. Alison found this site Chemocare with a good explanation. They say the chemo effects can peak 3.5 to 5 months after the chemo "treatments", and it's now almost 3 months after my last dose. Just when I think I've had the last side effect, another one begins. Kinda like a living nightmare, lol. May explain my general weakness too, it's quite a bit harder for me to step the mast on the sailboat than before chemo.
11/10 Neoropathy is slowing spreading, but I'm getting used to my foot being numb, sort of. Luckily it still works, but the strength has gone way down, some parts of the leg the strength has gone 90%.
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 leg 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. I'm experimenting with a GB 4000 a friend loaned me (generically known as a "Rife machine"), a frequency generator many think is effective against many health problems, including cancer. I'm lucky enough to have one tumor in a lympth node in the side of my neck that is close enough to the skin to feel, so I did a first experiment on it. After one treatment lasting about 45 minutes, I was surprised to be able to feel a noticeable increase in the size of the tumor immediately after the treatment. Not exactly the effect I was hoping for, but it seemed to show that the machine was having an effect on tumor or the lymth node. I used some photolacca oil on it this evening, which has a reputation for making the swelling of lympth nodes less. The next day the tumor was back to normal size and felt better, at least to my "looking for the best" attitude. Is this due to the machine or the phytolacca oil? Time may tell, if I can go slowly enough. There are many "unproven" cancer treatments that are not available in this country, and I'm very skeptical about them, but I don't seem to have much to lose, or the ability to afford many of them.
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. Need a local doc for pain meds until the neuropathy goes away, 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. I have a new oncologist, who I like, Dr. Aung. He's not pushy with the chemo or radiation and seems much more understanding. 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.
Hope yall had a good Thanksgiving, we went to Mike's and saw my grandkids and played some dominoes, it was good. My tumors continue to grow, I think, hopefully they're slowing down. I thought for two days that the neuropathy was reversing, I could feel a little in my small left toes! Feeling went away again today, but the numbness doesn't seem to be spreading up the leg anymore. I noticed a new symptom lately, very odd. I sleep in the dark, and of course I can see light through my eyelids then. So I would notice some light seeping through, and figured a door was open or someone had turned on a light, and opened my eyes. It immediately became dark! Close eyes - see light, open eyes - pitch black. Now that's really odd! After a few trials that effect went away, only to happen again later. Never seen this before. Very odd.
Get to see my Naturopath tomorrow, good fun. I get to try acupuncture again, perhaps that helped the neuropathy some, she said it might. That intestinal test showed I have almost no digestive enzymes anymore, so we'll get some more of enzymes to take with my meals, they really help me digest the food properly.
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 very fast. 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!
I'm sleeping more, and that is good, but that makes worse that I don't have enough time to do the work I must do. I've had to do less on the website, and on these updates, but I'm unable to creat more time and am usually behind. Making some changes on the sailboat ad rules, and that helps.
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. 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, but we have more bills than income right now, and property taxes are due in January.
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 last a month or two, but I didn't think I'd cry that much.
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 in bed on my birthday, maybe first time in my life! 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 I 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 the hospital that is. Too many problems, time for a new MRI looks like. I didn't get the MRI there, but will get one very soon near home and have the results sent to all my doctors.