Hi Bill (Chicago Bear Fan)! sorry about our year! Leukemia and the Bears aren't getting it done. tough stuff.
I hate to say it but I found Consolidation much, much tougher than Induction. Most of my sickness started after I was put in remission. I remember, after about a month, finishing the initial Induction therapy, wondering why my Chemotherapy was feeling so easy. I had been made aware by my nurses, many times, that Chemo's effects are cumulative. and they were right. big time. It was at about this point that I started to feel most of my severe illness symptoms. I had terrible digestive problems - heartburn, diarrhea, constipation and cramping, It definitely kept me up at night. I finally got the much talked about mouth sores and had "other-end" problems as well. Chemos kill quick growing cells first so the lining of your digestive tract is affected - from end to end. It felt like food would just sit in my gut and hardly move. The best thing for my digestion problems was protonix (a pharmacist told me this is the equivalent of 2 over the counter Zantac pills). But I often used stool softeners and laxiaives too - and getting the dosage right could be tough. They sometimes helped. but often they did not give me much relief. I had many other side effects that started at this time as well. nausea, lack of appetite, intense headaches (some of these most probably from a head clot reaction to asparaginase at the end of Induction), extreme fatigue, sore throat, congestion, fever, chills. I experienced all this, to varying degrees, for 4 months. I remember vomiting from cab doors and crawling on the clinic floors at check-ups. At times my confidence in the system would waver but those around me were great about keeping me motivated and in the game. I tell you all this because, I believe, it would have helped me to know how sick I would/could be and that it will, in fact, pass. You will feel healthy again after a few months. The chemo takes you almost to a breaking point and leaves you very weak. You smell, taste and feel like chemicals - I remember that so well. They seemed to ooze out of me. I guess they were. It is a period to be endured with not much relief - but sleep and distractions. But it will pass!
As I've said before, ativan and other sleep aides and pain relievers were helpful in getting me through this tough period. I used them often. That said, they have their own side effects like constipation (dehydration), coherency and memory problems. Tapering off pain relievers like fentanyl, hydrocodone, and particularly diladid left me hot/cold, fevery, and very emotional. At one point, for about a week, I thought I was having a mental breakdown. I could not stop crying - even at times when it seemed inappropriate. But then I talked with nurses and other patients and learned that this is common. Overall. I think it was worth these side-effects. and I know there are other opinions on this subject. My experience was that these drugs were a big help to me.
It is tough to know which specific Chemo is causing which side-effects since most have similar side effects and I was taking so many at the same time or in close succession. Methotrexate, Daunorubicin, Vincristine, Prednisone, Aparaginase, Etoposide, Ara-C, and 6-MP, all continuing into consolidation therapy. I think seeing these drugs for a second time, a 2nd cycle, really starts to take it's toll. Somewhere near the beginning of my blog I have posted my drug protocol or schema for my ALL treatments. I think the exact dosages are there. I'll try to post them again here if you want to compare. Prednisone I did not like as I had a lot of anxiety and I could feel my heart racing with hot/cold flashes, insomnia, and high blood pressure - I though at times I was having a heart attack. When I described this at clinic, my nurse said "oh, that's just the prednisone" - like it was to be expected- but unfortunately I was not warned before hand. As I remember, towards the end of my second cycle taking Predisone, (60 mg/day~28 days), I really started to feel "hyper sick." I think the duration of time I had been taking my chemos and the long stretch on predisone combined to make this period difficult. I knew 1 patient that actually liked the effects of prednisone - so I guess everyone really is different.
So, after all that Bill, my best advice is be prepared to suffer through being very sick. It can be very hard with a lot of uncertainty. and the whole nutrapenic/immunocompromised aspect is tough too. Going to the hospital with fevers over at 101 degrees or above. no fun! I think if I could have known how sick I would get, it would have been helpful because the uncertainty factor would have lessened. I remember often wondering if I should feel so sick. I did not look at the experiences of others much and I probably should have. I might have stressed a bit less. I really hope it's not as bad for you and from what I've seen and read, that's entirely possible. Everyone reacts differently. so hang in there and feel free to ask me any other questions you have. Anything I can do to help. It will get easier, Bill!
I'm just back from my EuroAsian work/play trip. 3 tennis tournies. Madrid, Paris. Shanghai. 2 months away from home. I had a really good time. I did catch the flu in Madrid and that took me quite awhile to shake (~3 weeks). and I was congested the entire time I was away so I had become a little concerned about my health. I just had a clinic visit and everything is fine. Priscilla, my NP, says it'll take me longer to get over things like the flu. Maybe even twice as long being slightly immunocompromised. The congestion is another matter. We think all the chemos may have left me with some allergy's. and Shanghai is the most polluted place I have ever seen - I think that had an effect. I suspect the head clot (that's when I noticed the congestion starting), but Priscilla doesn't think this is the case. Anyway, I'm obviously very happy with the clean health report (and my liver is functioning well still!). My chemo levels (6-mp and methotrexate) will stay the same and they don't want to see me again for 3 months! More and more I am becoming less of a patient - and I like it!
I will post some pics of my summer in Chicago/San Fran, my summer tennis jobs, and my trip soon!
Here is my ALL drug schema in case other leukemia patients want to compare.
Hi Sandy. I just read your post. I really appreciate your honest questions and comments. I remember feeling the same way but not expressing it much - except to a couple folks like Beth and my Dad. hymmm....where to start?....
First of all, to address your first question, from what I've read, most leukemia patients survive. There are obviously many factors involved so exact percentages are tough but - to me - that is the important part - most survive. I remember being frustrated by the, at times, vague comments of my doctors as well. But I realize now that they really don't know exactly how any 1 person will respond so they keep it positive, but vague, because they probably believe that STAYING POSITIVE is one of these factors - and I believe they are right. Just KNOW that you are going to get better as you roll with the punches. If it helps, look at it like a competition - something to win. Visualize how good things will be after you make it through this tough period - and you are already through the really tough part! It'll much easier from here on out. You are at the "go on long long walks" stage. You get to explore your neighborhood. What fun! It's all about slowly regaining your strength now. It took me about 6 months and now 10 months out - I'm still not 100%. But that's coming.....With 2 years of maintenance therapy ahead we will have to be patient. You will be feeling better and better every day.
What you're feeling in normal so try not to worry about these feelings too much. It's ok to be sad sometimes. When I was really sad, here's some things I did that really helped:
- Try to find a close friend or 2 and really lean on when you are down. Just talking to, venting on,and crying with my "rocks" or "stabilizers" really helped me stay positive. And all the extended support and positive comments of friends out of town is big, too. Starting a blog or website helps with that. and you get your feelings out and expressed. you already have a vox site....
- Walking, I've said, really helped. especially with friends. Ask your friends to come visit and take a walk. It gives them a way help and gives you access to their love and energy. and it gets you out of the house and in the sun. I remember feeling very weak and tired at the start of maintenance. Walking to a park with a friend or 2 really cheered me up. And the released endorphins are good too. Sometimes I threw a frisbee - I'm a bit biased towards this activity... My doctor gave me the ok to start running, without exhaustion or fatique, around this time. So I did - first a block or 2, than a few blocks, then a mile after a month or so. I strongly endorse walking/running at times of stress but, really, it's any heart pumping activity that "stirs up" the positive endorphins.
- watch videos/shows that entertain you or make you laugh. Leukemia is a great excuse to catch up on tv with no shame! and the distraction is nice when exhausted. Soon after being diagnosed and put in the hospital, and after 2-3 months, when the exhaustion and malaise really started setting in, I watched a lot of stuff. I highly recommend: Scrubs - (savor the irony of your current medical situation!), Curb Your Enthusiasm (acidic cynicism can feel so good!), The Wire (best cop drama ever), The Sopranos (a comedy, really), and 6 Ft Under (this one was a bit heavy for me at times). I will forever associate these shows with being sick.
- Accept and trust in the drugs that are a big part of life for you now. They are proven to work by all the folks surviving cancer now. Obviously the chemo is poison. It'll make you feel bad. 1 month after diagnosis and starting Induction therapy, I began feeling sick and tired and it just got worse from there for 5 months - almost the exact duration of time that really huge doses of chemos were infused and ingested. Even with my bad reaction to aparaginase, which caused all the headaches, the chemotherapy made me sicker than I thought I'd be at the start. I remember feeling confused by the seemingly constant vomiting, hot/cold fluxuations, fevers, extreme fatigue, and headaches particularly when away from the hospital. Prednisone, a steriod, in larger amounts, seemed to enhance the anxiety and made me irritable. When the anxiety was bad I took ativan which also helps nausea and insomnia - a problem when I stress. I also ate THC, marijuana, edibles. I took painkillers for the headaches. When the time came to cease the services of these drugs, even with tapering, I had a rough few days. But I do believe they helped get me through a difficult period (sorry, Tom Cruise). Obviously, the amount of painkillers/antianxiety drugs to take along the way is a very personal decision - I had a friend your age with ALL whose father was very much against it. I disagreed. I just believe it's healthier to not have to suffer as much with the many side-effects of our required poisons. It was around the start of maintenance that I began tapering away from most of these drugs.
- seek out and enjoy the success stories. The best one I remember was of a 60 yead old Japanese American gift shop owner who lives in my neighborhood. He was diagnosed in the 1970's, when leukemia success was rare. He's looking very healthy at 60. He kept saying "don't do sport," which confused me at the time so I had to go back and ask him about it. no more sports ever again!? He elaborated saying he meant during the chemotherapy - when you need your strength to fight the cancer. This goes with the don't exhaust yourself advice of my doctors. I also met an 80 year old woman with leukemia who said when she was diagnosed she was given only a few days to live and that was 4 years ago! She is still progressing well. There are so many stories like this. This is another reason doctors are vague - they simply don't know how people will react to the process. So they stay vague and positive. I do think they could communicate a bit more along the way particularly when I'm feeling really sick. and having an information hotline with better advice than "go to the hospital" would help.
- Lastly, philosophically, being sick is an early chance to address the whole death and dying thing. It can't be avoided and everyone must make make their peace with it eventually. We just have the opportunity to do it a little earlier than we expected. And the obvious conclusion is smiling and enjoying every day you can. and learning to enjoy life with out being sure of the future. Cancer, for me, is living with uncertainty and feeling ok about it. I realize it can be taken further, but without getting into religious views, this is where I'm at.
I hope I've been of a little help to you, Sandy. and any other new or experienced patients reading this. Feel free to ask further questions. I had many along the way. I'll be around if you need to talk. take care of yourself and stay positive! You're doing just fine! I'll be thinking about you.
to my regular readers, looking for an update: briefly, I've had a great trip working tennis and playing in Europe and China. I was sick with the flu in Madrid but made it thru the tennis whilst hacking quite a bit. In Paris, I had 24 hrs of extreme fatigue but I made it thru that as well. Again, living with a bit of uncertainty. In China, I was able to see Shanghai, Suzou and Lijiang - the 2 later both considered "Venices of Asia" for their extensive canals and bridges. I saw Leaping Tiger Gorge, the First Bend of the Yangtze River, and 1000 Tortoise Mountain, all near Lijiang in the lovely Yunnan Province. I will write more about these experiences in a future entry. For now, I'm off to the Rijksmuseum as I impulsively stopped off in Amsterdam on the way home because, well, it's Amsterdam! Museums, canals, beautiful Scandinavian rationality, blessed liberalism, flowers, Boom Chicago, restaurants, and, oh yeah, um, coffee shops, I guess they are here as well. I'll have to check one of those out... :)
much love to all. talk to you soon. I will be picking back up in July at some point soon. I have had many blog uploading problems on this trip. Holland will come thru for me though. some photos....
My tennis friends are calling me "Mitch" because of my hair ...not nice... from some show with P. Anderson...
um...so where were we? My friend Mike Pithey was kind enough to bring my blog absence to my attention recently. While I may have been similar to the lazy...uh...person.. that he described, I have had an eventful summer in which I took many pictures - but now I feel a bit swamped in the editing process. I knew this next entry would require a link to another website and I have been trying to get that together, while working, playing, being lazy, etc.... I am sorry to leave Mike and those wondering about me in limbo....
So, first the important news. I had a clinic visit last week that showed no signs of returning leukemia cells so I am obviously very happy about that. Also, my liver is doing a stand up job of filtering my daily and weekly chemos. It is functioning normally. So we both celebrated with a double shot of yeager! (just kidding...) Yesterday, for the first time in awhile I felt a bit tired and dizzy but I feel much better today. If I hadn't just had a good check-up I might be concerned. But I think it is normal as my blood levels can still be slightly below normal. Priscilla and Dr. Linker also cleared me to go on a super long road trip of 7 weeks in Europe and China for tennis in Oct/Nov. I'm excited about the trip and I hope to catch up on the blog so I can report on things while I'm over there. we'll see....
So, in early July I stopped by my "cult" camp in Wisconsin. It is the Midwest Unitarian Universalist Summer Assembly. Those that know me know I'm not a "religious" person but this camp has been a huge part of my life since my Mom first took me when I was 3. I haven't missed a year since. I have met most of my oldest friends at this camp and I look forward to attending the reunion every year. All my "firsts" happened up there (well... most of them - my first one-on-one full-court 1 am basketball in 25 degree weather came at UNCW in 1990 with a hack named Frank Colvin. I won) including my introduction to the wonderful game of Ultimate Frisbee, which would also become a big part of my life. We dance, hang out, hook-up, laugh, cry, learn, perform, grow, compete, and generally have a really good time. We had met on Lake Geneva for 60 something years, on a beautiful college campus overlooking the water. Last year, the conference center changed directions and we were forced to find a new home. Next year we will try out Trout Lodge near St. Louis, MO. This transitional year, we met a "resort"-a hotel actually- in the suburbs of Milwaukee. So, it was a strange year, not having the rustic, natural setting we were used to, but we still had fun as the pictures below will attest to. To all my camp friends I have assembled all my digital photos at http://web.mac.com/chrisboring/iWeb/ going back to 2001. The rest for this year are there and I hope to scan older photos in and put them there eventually. They can be dragged to your desktop once enlarged. I hope to inspire Daren Fowler to start a large photo data base for our camp.
It was great to see everyone again and I'm excited about our inaugural year next July at Trout Lodge. I will see you there in a tent, tippee, or whatever it takes....
Linda is the wonderful woman who made me the lovely prayer quilt back in my sicker days.
Hi all. I've just finished 3 weeks of fun but exhausting tennis. I holding up well, enjoying a couple days off before delving into 3 golf tourny's. I feel great and feel little from my daily 6-mp (100mg) and weekly methotrexate (20mg). If I get a good report Monday at the clinic I think my dosages will go up. We'll see what happens from that...
I'm still playing catch up. Here's some photos from work at the end of June. First is a tour of Rochester, NY - where I worked the Weigman's LPGA Classic (or something like that...). Most of the pics are from a run I took along the Genesee, River. There was a bike race going on as well. Cool little town, Rochester. I liked it.