My Cancer Update Page
RiCaL Cancer Awareness Home Page
On All Saints Day, November 1, 2005, Rich Lewis died as a result of complications from his battle with colon cancer. An inspiration to all, Rich will be remembered by many, but only those who have known him will truly know the courage and inspiration that he provided for his family, friends, and community. But more than that, Rich will be remembered for the lives he changed when he was healthy through coaching, teaching, and more importantly being a devoted parent and husband. Vigil will be held on November 4th, and the funeral will be held on the next day; Saturday November 5, 2005.
Rich Lewis
January 11, 1960 - November 1, 2005
Teacher, Coach, Family man;
INSPIRATION
October 27, 2005 - I ended up in the hospital for 5 days last week. The continued bloating was causing a lot of pain. Anyway, they checked for a blockage - wasn't one. They then drained fluid off of my stomach, to the tune of 5 liters. I also went back this week to have three more liters drained out. The doctor says it's from the cancer of course - in the membranes of the stomach and bowels.
We have decided there will be no more treatments. To begin with we don't know if I could survive it. Plus, I am just so tired. I have so many other problems along with the original cancer in the lungs, I just don't think I could go through a treatment that "might" hold it at bay.
October 13 - Well the last week has not been so great. I went to the ER Saturday morning throwing up and bloated. They put an IV in, gave me some
nausea meds, etc. They feared I might have a blockage so sent me by ambulance (because of the IV put in) to Billings.
They did a ct scan. Things are backed up (sorry) but the stomach bloating is because the cancer has spread. I guess there is a tummy tumor and some in my bowels.
(so this protocol is not working either).
So - not good. Naturally this is the week my doctor is teaching at John Hopkins, so we are on hold until the 20th.
I really don't see to much more we can try. The tummy wrinkle has caused a lot more pain. Oh, one lung has fluid build up to.
We pray and hope, but I don't think there is going to be much more that can be
done.
September 12 - I am through the first round of the new protocol. Not too bad. I have an infusion and then another infusion a week later. At the same time I take a pill every night for 14 nights. Had some nausea, but overall tolerated it pretty well. Wednesday I start round two. It will be awhile before we know if anything is happening.
Not much else. School has started without me. I miss going to work, but the fatigue is too much. Mentally I am doing a little better, but know your death is impending is another crappy thing about cancer. You know it is coming and have time to think about it. It is good I have so many people supporting us and helping out constantly - I live in a great community.
August 23rd - I am still waiting to get the clinical trial going. The clinic I go to had to get registered for the study. I was suppose to start tomorrow, but the meds won't be in until Friday. I have mixed feelings about it. I want to try, but I also do not want to put myself through more sickness if it is not going to make a difference.
I am up and down mentally. I am sort of okay with dying, it is the leaving the wife and kids that really breaks me up. We have been talking to the little kids that dad's cancer is getting worse - they know I can die from it. The older kids know everything but are sort of in denial - aren't we all. I sleep a lot still - I was hoping to break out of it. School starts this week. We have started the paperwork for disability. I already miss coaching and not working is going to be very strange. I just can't do it all anymore.
*******
August 10th - I am afraid the news is not good. It has taken me a week to be able to write about it. The scan was not good. The doc said if we did not do anything, I would have 3 to 6 months to live. I don't know what else to say. From the beginning it was a long shot.
I am not ready to quit yet. They are lining up a clinical trial drug to try, maybe to at least stall things for awhile longer. The cancer is having an impact. I am congested a lot, short of breath, and have back pain. I sleep a lot. It is hard to do much. I just try to still be here each day.
******
July 27 - I spoke to soon in the last post in regards to breaking out from the new treatment. I broke out almost as bad as the previous time. Needless to say the doc said I cannot take the pantimumab anymore - I just break out too much and it is too painful. I was on a lot of pain medicine. It is a downer as they have stats that say people who break out have a higher rate of success. As mentioned - Doc has never seen anyone break out like me.
So - on the 3rd I have blood work and a full ct scan. I meet with the doctor that afternoon to see where we are and discuss what we are going to do. Needless to say I am very scared - again we have gone two months without steady treatment. The doc thinks we may go back to the oxiliplatin and avastin. I have felt the avastin was what was holding things in check - so I want to be on it. I am also scared about it - as it might have been the cause of the embolism. Also, I am already on coumadin which thins the blood, and the avastin makes it harder for the body to heal, so combined...
I am very up and down mentally. Not being able to function normally, being weak. Typical feelings for what is happening to me. I get angry at the great possibility of dying at only 45, and worry about leaving the wife and kids. School starts in a month, and I do not know if I will be able to work. I sleep a lot right now - part recovery, part depression. It all worries me and I dwell on it a lot. I pray a lot, and whatever happens, in large part, I don't have control over, it is up to God, so I hang on and hope.
July 11 - After four weeks, the rash and acne were somewhat healed (I still have rash and some acne). Last week I went in for a treatment. The numbers continue to rise. I have only broken out a little after the treatment - I only got half a dose this time. My doctor, who also works at John Hopkins, said I had the worst reaction he has ever seen to this drug - lucky me.
I still suffer from a lot of fatigue. I am sure part of it is depression. I am down right now. Next week I will have a treatment, then a ct scan the next week to see what has happened. I pray constantly for good news...
June 21 - Summer is already slipping away. Already I have lost two weeks. The "little" side effect of acne became a major one for me. I broke out on my chest bad, my back some, and my neck, face and head are covered badly. The back of my head was swollen almost an inch there were so many. So now I am scabbed over and a mess - but finally feeling slightly human. I have not slept much - very hard to sleep when all sides of the head covered. I wake up and something has broken open and I am stuck to the pillow. It's embarrassing to go out in public, so trips out have been rare. Anyone want to buy a motorcycle - at the rate I am going I am not going to get to ride a while lot this summer.
So, it has been another miserable two weeks of misery and pain. I don't know how this is all going to shake out but I am not very optimistic at the moment. Every treatment does something to wipe me out. I'm really depressed about this new treatment that was not suppose to pose any problems. I was suppose to get treated tomorrow, but doubt it. They want me to still see the doctor and the dermatologist. Fun, fun.
June 10, 2005 - Today I went to the doctor for my first treatment in the clinical study of pantimumab. Got to have pictures taken of me (they document the rash and acne side effects), and lots of blood drawn. I made a list of lots of questions to ask, some hard questions. I have four treatments until the next ct scan - two months. My CEA was up to 13.9, expected but unsettling.
The doctor also explained (after I asked) that if we don't see results from this chemo in the next two months it will be time to start talking to the little boys in regards to dad probably won't make it. Needless to say I took the news hard (but needed to know). The chemo went well, no real side effects (yet). Not much else to say - we have kind of put everything on hold (we had thought of selling our place and moving into town) - so we are going to just hang out and see what happens.
So - a few tears (especially when I think of the possibility of having to tell the little boys (6 an 9 years old) bad news if this doesn't work. Lots of prayers, and we will have to wait and see what happens. I am a little numb today, so maybe I will write more about this later...
June 2, 2005 - Yesterday was a bad day...I went to the doctor to get set up for the cllinical trial with the pantimumab. My CEA has jumped frm 6.1 to 10.1. That was the start. I had to have a ct scan for the study. There has been "slight growth of some of the nodules" as the doc put it. Needless to say the news was not good to hear.
I am sure part of the problem has been the last few months. Treatment has been sporadic with all the other stuff going on. I also worry as I have said before that not getting the Avastin would have an effect.
So, next Thursday I start the new protocol. If it doesn't work we will add the irinotecan back in. There are also a couple of other protocols we have not tried yet. School is out for summer, so there is a little less pressure that way - good thing - slept a lot of today (anxiety and depression I am sure). I guess I will bounce back and get with it again - We still have a long way to go (I hope).
May 27, 2004 - The last few days have been up and down. I though I was over the fatigue - had three or four good days. Spent yesterday morning sleeping, and napped in the afternoon and went to bed early. VERY tired today but I did get up and get to work. Tomorrow is the last day of school and we are out for the summer (yeah!!!). I am hoping to get over the fatigue and start moving again.
I spoke with the doctor and nurse about the new protocol. As I said it is a clinical trial. I know it has had some good results n early phase trials, but from what I have read that was when using it with irinotecan (the protocol I am on now). I have not found a lot on using it (pantiumumab) all by itself. I will quiz the doctor next week when I go in. On the good side, the infusion is only an hour (unlike the 3-4 hours infusion before), and the only side effect is a rash.
So - I am ready for summer. School will be out. The new protocol will be easy to tolerate, so I can recover physically from the last two months. My only worry now is will the new protocol work? I worry about that a lot. Eight months we have kept the tumors the same, and I would like to continue that, or even see them shrink.
I do place my faith in God and Jesus. Tomorrow I am meeting with a priest who has been known as somewhat of a healer. I do not know what to expect, but of course will always hope and pray that God will choose to heal me.
May 23, 2004 - The last few weeks have been extremely hard on me. I recovered from the early may treatment and felt okay when I went in again almost two weeks ago. The treatment produced the same result, only worse. It took me almost 10 days to get out of the major fatigue and be able to stay awake for any length of time.
I have also had some scares with the possibility of another embolism - which I worry about after being in bed so much - it is possible even with the coumidin. I have had a couple times where my chest hurt pretty bad and had to get checked out. They say it is the residue from the clot in my lungs and my being so weak and out of shape.
The doctor has given me an extra week again. My CEA remains around 6 - not good but not bad. The last ct scan two weeks ago still showed no change. We are going to switch to the panitumumab - I cannot take the current protocol anymore - it is just way too hard on me. I don't want to spend the summer in bed. I hope it will work...I have obsessed about that as well. Switching and it doesn't work. Of course it could work better - let's hope. The only side effect it is suppose to have is a rash - so I am hoping to return to moving and eventually exercising and gaining some strength back.
It is amazing how weak I have become. I have lost a lot of muscle - for a guy who used to bench 300 pounds, it is hard to accept. In the last year I have lost about 40 pounds. I have not ridden my motorcycle (Vulcan 1500) because I am afraid I won't be strong enough to hold it. It is also amazing how fast time slips by. I cannot believe it has been almost two months since my embolism.
Mentally I am struggling some too. It is hard not to worry - either about the cancer, or the embolism, or bills, or the family, etc. Kind of all piles up. I just have to keep on plugging away!
On the good side, the town of Colstrip and friends held a benefit for me and the family that raised a lot of money for us so now we can catch up the bills and pay the clinic and credit card, so for awhile we are not in debt. It is an AMAZING community!
I also need to acknowledge my family. My loving wife Carol does so much to take care of me physically and mentally. I would be lost without her. We have been married 20 years and I pray to God for another 20. My four children have adapted as well. The older two (18 and 15) do so much around the house and to help out, and the younger two ( 9 and 6 ) have adjusted to dad being sick and not being able to do much with them. I think that is the hardest part of all this - not being to be at all the kids' activities and functions, and being able to do things with them. It is also one of those worries for me - the possibility of leaving all of them. It scares me and it hurts so bad at times. Cancer affects the whole family.
As always, I trust in God and pray for a happy ending to this. Every day I recite Psalm 23, and know God will be with me no matter what.
*******
May 4, 2005 - Things have gotten better. I have been able to get up and stay up the last few days. I saw the doctor this week - we postponed treatment. The doc really doesn't know why I have the sleepies - probably just my body wore out - it has been through so much in the last two months. I am scheduled for treatment next week - but the doc said if I am still down we can even wait another week.
There is a possibility that we may switch protocols - the doctor wonders if the irinotecan is wearing on me. If we switch it will be to pantimumab - an antibody therapy that is in clinical trial. Of course both courses of action worry me. I have already lost the Avastin, so worry. Waiting so long in between treatments worries me as well and of course switching worries me. My CEA has steadily dropped since we started the ironotecan so I am reluctant to change.
Mentally things have been tougher lately. I worry about the embolism thing reoccurring. Got winded the other day and panicked a bit. Of course I worry about dying - it was close with the embolism, and the odds are my condition will not get better. Honestly it does scare me - plus the thought of leaving my wife and four kids. I think the mental part of cancer is harder than the physical. I am being treated for depression and anxiety - can't imagine how bad it would be without the meds.
I try to stay positive. We have gone eight months since diagnosis and there has been no change in the tumors and my last CEA was actually lower than when I was diagnosed in August. It has been a long road.
I am glad to live in Colstrip, Montana - what a great town. There have been lots of donations to my family since I was diagnosed. We get groceries and meals brought to us all the time. I think the whole town prays for me. The people at school take care of me and fellow employees have donated 40 days of sick leave to me to make it through the school year. Last week a bunch of guys came out to my house, bought the wood and other materials and put the metal roof on our trailer for us. This weekend the town is having a big benefit for myself and my family. IT IS AN AWESOME COMMUNITY and I am so thankful for living here. I do pray a lot and believe God has a plan for me and I just have to accept it - and I thank him constantly for my family and my life. Gob Bless you too for checking on me - thanks.
April 26 - A long ten days. I don't know if I am ever going to get up over this hump. I started feeling better from the embolism just in time to get treatment. It hit pretty hard, plus had a lot of constipation. I got back in the sleeping mode the last few days. It is real hard to break out of. I have missed a lot of work too. I also have a lot of anxiety about everything - worrying about blood clots, cancer, finances, doctors, etc. I worry about not getting the Avastin as well and what that will do.
Financially things have tightened as well. Our insurance is okay - but the doctor trips and time in the hospital where Carol had to stay in Billings added up. The community is having a benefit in a couple weeks to help. Last weekend a bunch of friends came out and put the metal roofing on the trailer for us. It is a nice community.
I am beginning to wonder about the disability option. It is hard to get to school and keep things going. It is a difficult decision. I just don't know...I like working and don't want to lose the pay or insurance. Difficult decisions.
April 16 - I continue to have extra problems. It took me a week to recover from the dehydration. Then I kept having problems breathing. Walking in to my office would make me huffy-puffy, and it would take a few minutes to recover my breath. I went in to the clinic and they gave me fluids (my doctor was gone, the on call doc never came to see me). The doc told the nurse to tell me it was just the chemo kickin' my butt.
The breathing continued to get worse. Last Thursday I went to the local clinic. The PA told me my heart was fine, blamed it more on anxiety. Well, I would fool him. I got up the next morning and walking 10 feet and I could not get my breath. I laid down on the bed and my wife came in and said we were going to the clinic - I guess I was purple. I stumbled to the front room and collapsed in the chair.
My wife called 911 - the ambulance came and got me. They could not find a pulse in my arms - I was pretty bad. They got me to the local clinic, hooked me up, etc. They sent the EKG to the cardiologist in Billings and he said it looked like a pulmonary embolism (which it was). They sent the airplane to get me (Billings is about 120 miles away. Once I got to Billings they started me on heprin and did a ct scan to confirm the embolism. It was a large clot, almost blocking both arteries tot he lungs.
So, I spent two days in ICU, and three more days in the hospital. They of course thinned out my blood. I am now on coumadin to keep it from clotting. My doctor said it could have been from my legs when I was sleeping a lot, or it is possible the Avastin might have caused it.
Either way, I cannot have the Avastin anymore. It makes it hard for the body to heal, and with the thinned blood - they don't go together. I am a little weak, but can walk now without losing my breath. I do have chemo in the coming week - it will be one month since my last chemo, so we need to get back at it. Some good news, the ct scan showed no change in the cancer, and the doctor ran the CEA along with a lot of blood tests and it has dropped to 5.5 - even with the extended time between treatments, so hopefully we will make some progress. Hopefully I can stop all the extra things and just deal with the cancer. I have a brand new motorcycle to ride and have yet to get strong enough to actually ride it!
March 29 - The fun continues right now. It has been a rough month. I had treatment last Wednesday, and really did not bounce back too well. I had also started a new medicine for the depression, which the doc thinks really messed up m stomach. I ended up not being able to eat or drink for a few days and yesterday ended up at the hospital. Spent the night, as they re-hydrated me. I had lost 13 pounds from Wednesday to Monday.
I am better now, ate today and drank. Just really tired. Probably take a few days to get back. I am really tired mentally from all of this right now, very wearing. We did push back my next treatment a week, so I still have two weeks to recover - hopefully that will help.
I am suppose to be in the newspapers tomorrow. I think it ran on the coast already. An A-P writer contacted me about Avastin and how I felt about it. Hey, my tumors are staying the same - I think it is helping! My 10 minutes of fame...
Thank you to all who have emailed as of late - it is nice to hear from folks. Forgive the slow responses.
March 17, 2005 - Well, I hate to post this week, but - I have been telling it like it is. It has not been a good week. I developed a very bad toothache. The dentist says it needs a root canal - but because the Avastin would not let it heal, it can't be done. So I got pain pills and antibiotics and we hope it will settle down. I am off the pain pills but it still aches. The doctors spoke yesterday, and Monday they will open the tooth and put a medical filling to stop the infection (hopefully).
All of this is wearing very hard on me. The recent chest infection, now this, and the unending treatments. I have been at work almost every day - yes they take care of me and I can take a nap - but it is all wearing heavy. My income is all we have so too many days and I may see shortages (days have been donated to me, but they do not go forever...). I had a couple of meltdowns this week (crawl into bed and have a good cry). The doc is going to up the ol depression meds - which needs to be done. I have been in chemo now for 7 months - a very long time - and I am happy we have had no change - it is disappointing we cannot make it go away - which statistically it does not go away.
So we try and band aid the tooth, medicate my psyche, and keep praying. I think if we get warmer weather it would help - right now the cold is wearing on me too. I have not been able to make flutes due to weather and numb fingers - which is my release, and it is too cold to ride the motorcycle - so it has been a late winter depressing week.
I spent some time in church yesterday, just sitting and talking with God, and stayed home today and just rested. I can rest the weekend - then dentist Monday and treatment Wednesday. School is out Thursday through Monday - so hopefully I can get rested and recharged. Thank you to all who email and wish me well and pray for me.
March 10, 2005 - Yesterday was another treatment. A long day. The 120 mile drive in and back always adds to the day. The clinic was short handed, only two nurses working, so things were slow. I had to wait a half hour to get blood drawn, then treatment was extended as I had to wait 10-15 minutes in-between changes in meds for the nurse to have time to get to me. Frustrating, but understandable.
I got some clarification on my CEA tests. It was three weeks ago it was 6.5. Two weeks ago it was back to a 7.6. Yesterday it was back to 6.5. The roller coaster CEA. I think the CEA can be affected by chest colds, et (smokers have a higher CEA) - The week I had the higher CEA was just coming off the viral infection in my chest, so maybe that affected it.
Basically we (Doc, Carol and I) agreed we would not check the CEA as much and rely on the ct scans - no matter what the CEA, if the scans don't change, then I am doing okay. I am back in the frame of mind that whatever happens, happens - and I will continue to fight it tooth and nail. In the last three weeks I have started riding the incumbent bicycle and doing light weight lifting exercises with dumbbells. I am going to get back in shape and to heck with this disease. I got to ride my new motorcycle - and it was great - but I need to be stronger to ride more comfortably. Maybe I am simply in denial (I do like to float rivers), but I still hold the belief that this is not going to kill me - and definitely not spiritually
March 2, 2005 - Today ended another cycle with a ct scan. The news has been up and down. To begin with, as mentioned right before Christmas my CEA was up to 8.9. We then switched to the irinotecan. A month later the CEA dropped to 7.2, and last week to 6.5. So in that regard, things are looking a little better.
I did get a nasty chest virus a few weeks ago. It really beat me up bad, and I had to skip a treatment. I have been pretty beat up lately with the treatment's - kind of wearing on me. I have been going for just over six months now. With the new protocol, I get a bit sicker the first week - then the virus really wacked me good! I think right now that is the hardest aspect - just the daily wear of it all.
Side effects have been a major problem lately. The main problem is numbness in my fingers and feet. It gets pretty bad to where I get muscle cramps in my legs, and have a little trouble walking. I just started some neurotin for the numbness - one more medicine to take. It is helping a little. I also started some regelan for my stomach - the new protocol has been tearing it down a lot.
Today was my most recent ct scan. The results were the same - no change. I was pretty disappointed. With the CEA going down I thought we would see some shrinkage in tumor size, but no. Stable is still better than other news we could get. I of course am just worn out and would like to see something happen. The doctor talked about pushing for now, with the CEA results, but he does recognize somewhere here we need to get me a break. I think if the CEA stabilizes for a bit he may lengthen the time between treatment's for a bit and see what happens and give me a break.
I always like to mention what an awesome doctor I do have. He sat with me a long time today after the news - as I said I was upset that there was no change. We talked about stable being better than not, and the fact that we all just have to give everything over to God and whatever he decides that's the way it is. Hard for a guy at 45, but I agree - we just have to live daily and trust in God - which I will continue to do.
He also is one of the top guys in the field of colon cancer. He reinforced we cannot give up hope - first for what we are doing, and the several options we have left. ALSO - there are a number of new things coming "down the pipe" for colon cancer, so there is hope for new treatments in the future - and the longer we keep going - the more options that will become available to me.
On the living for today - I used a low cost promotion program ($39 a month) to buy a new motorcycle. I decided I have waited long enough - and what the heck - they can always have it back if things don't work out. I'm going to ride! It is one of those places where I really feel alive - riding down the highway - now on something "dependable" - not like my old bike. I am going to find those good days this spring and summer and make the most of them!
So that's it for now. A disappointing day on the one hand, but I will bounce back and get ready to go again - what choice do I have. There are four kids and a wonderful wife here that are not giving up on me, and I am not about to give up on them.
Feb 2, 2005 - Today was infusion. Augh! The new protocol hits hard but after four or five days I recover better than the last protocol. The last week was pretty good - felt almost normal for four or five days. The only real side effect has been numbness of my fingertips (besides the usual yuck feeling...).
I have had trouble with what the doctor guess is a hernia. I pulled something real bad this summer (which started all the x-rays) - and it still bothers me. I can't pick up much more than 20 pounds without getting a bad pulling sensation right by my sternum and feeling sick. Doc figures I ripped something around my hietal hernia. Of course nothing can be done about it until the cancer is gone. Hard for a guy who 8 months ago bench pressed 320 pounds and now can't lift anything.
I did get good news today. Right before Christmas my CEA was 8.9, up from 7.4. Today we ran the CEA again, it is down to 7.2. So, for the first time in six months, something positive. For some reason I have felt very positive since we switched the protocol to the irinotecan (CPT11). So, happy news and more hope. Never give up hope - ever.
I do still have my hair! It was suppose to fall out over a week ago. It has thinned out, but once again I am working on proving doctors wrong! I love being an oddball!
I do want to say, I believe the doctor I have now is one of the best I have ever known. I can only thank God he came to Billings, MT - from John Hopkins. He is a colon cancer doc, and I think one of the top ones in the country. He even went to China to work with their doctors. That said, he is a great person! If I email questions, he emails me back within 30 minutes (even when he was in China). When I have my appointments, he takes the time to answer all my questions, and just spend time talking about life in general. He makes me feel like a person, and unlike a majority of doctors, he acknowledges that we need the help of God to get through this. I have said before, and tell people all the time - if your doctor does not make you feel like a person, you may need a new doctor.
I decided one more time to "live" my life now. For two years I had been planning to buy a new motorcycle. I love to ride. I have an old 1978 KZ 1000 - good bike but old and not dependable enough to go very far. I kept putting it off because of my health. Well, last weekend I found a great deal, low payments that I can afford, and said I am going to be here, and I am going to get it - so I did. It was a big commitment for me. I kept thinking I did not want to get it incase things turned bad, making a purchase like that, running up debt at a time like this...but then decided to take my own advise - I have no idea how long I will be here, but I am going to enjoy the time I have!
I have one more treatment in two weeks, and then in three weeks we will do a ct scan to see if we are making any progress on the tumors. I just keep praying - and I believe it is working!. I have come to accept we are doing all we can medically - I just have to leave the rest up to God.
Thanks for reading and thinking of me. God Bless.
*******
January 12, 2005 - Well to start with something on my website got zapped, so my last update is gone. So...
Right after my ct scan I found out my CEA had risen - from 7.2 to 8.9. Of course we found out right before Christmas, so it tempered things (we still had a good Christmas). The news was not what we wanted to hear - so we went back to reading and making a list of questions - which the doctor answered. The tumors are stable, with the rising CEA probably indicates the protocol I was on was going to fail. So, onward.
My last treatment was the new protocol with irinotecan. I still get the Avastin, 5gu and leucovorin (I really hate that pump for two days with the 5fu). The infusion was pretty rough on my system. They gave me a lot of stuff to stop diarrhea, and the two fought brutal battles in my bowels. By the time I left I didn't feel too bad. The next three days were pretty much the same as the oxilliplatin. Saturday and Sunday I got hit with some heavy fatigue - on into Monday. The last few days have been better. I have had a bit more nausea and a stomach ache with the fatigue adjusting to the new drug.
I will have four treatments then a ct scan to see where we are. On the good side, the doctor explained the tumors are are 5% mass in my lungs, lots of little bb's. If they grew to 45-50% then I would be in a lot of trouble. Of course there are no guarantees, but the doctor figures if they do start to grow, the growth would be slow, so I have time to try different protocols. For colon cancer there are 6 basic protocols, and two new drugs in clinical trials. There are also three or four new drugs getting ready for clinical trials (this news from my doctor), so more hope is one the way!
December 23, 204 - I had my second ct scan pf the modern era (since re diagnosis) today. Thankfully I only had four hours to wait and see the doctor. We mixed in a little last minute shopping, but I have been very tired the last two days, so I napped some in the car.
The ct remains the same - just like two months ago - no change. Of course this is good in regards to no tumor growth, but disappointing. After four months of chemo I was hoping to see some shrinkage. My doctor of course remains optimistic - it could be worse. I had blood drawn for some additional blood tests and the doctor plans to call tomorrow and discuss the results and possible options.
We may make a change in the protocol, or try a different protocol to try and get some action against the tumors. We are not sure what yet, but have discussed; 1- continuing on as we are and remaining stable, 2- dropping the Avastin, there is some thought it might inhibit the oxiplatin from working, 3- switching to euricatan (I am sure spelling is wrong). A switch would probably lessen some side effects as well as they have been building.
I do still get the three week break - so still have two full weeks before my next infusion (YEAH). Time to recharge, refocus and get ready to go again. As always - I am still determined, no matter how long it takes! Will post more after tomorrow's discussion.
Also - thank you to all those who do read these little updates and email me. I don't know about you, but it helps knowing we are not alone in this. Merry Christmas.
December 19, 2004 - The first December treatment on the 1st hit pretty hard. I was feeling pretty bad before we even left the infusion center. Dragging mentally as well - getting to be a long haul. The doctor debated treating me as I had the flu pretty bad over Thanksgiving. I wanted to push on to my next ct scan, then take an extra week over Christmas vacation. As the week went I got feeling better, until the weekend. By Saturday I was worn and by Sunday a short walk to the garage made me short of breath. Monday was not good - hurt all over, my chest ached and had trouble getting a breath.
So - Monday was spent at the local clinic. They of course checked my heart (because of the chest pain) and all my blood counts (which remain fine). They figured I was dehydrated again and gave me a bag of fluids. Of course it took several attempts to access the port - which drove me a bit nuts. It should not be that hard to push a needle through a round port you can feel. Anyway - they (nurses) have never seen one before and Carol (wife) helped them.
Got better quick, had the next treatment on that Wednesday, the 15th. Treatment went well. Mentally I am up as I get a three week break this time. I am really looking forward to the extra week. I have my ct scan this Thursday. My doctor (who I think is one of the best I have ever had - and I have had a lot of doctors) - reminds me not to get excited should we still be stable or even see a slight movement. We still have a lot of options to try yet.
He also had just come back from a conference on colon cancer and was very excited. He said there are several new drugs getting ready for clinical trials, and lots of exciting research going on in terms of colon cancer. Of course news like that helps as well. I always hold hope that I will be one of the few who get rid of this and it stays gone - but generally that does not happen. So - we wait and keep going, hoping in time someone will find something to wipe this cancer out.
Will try to post ct results as soon as I get them. As always I pray to God for his help and healing - and there is always the chance of a Christmas miracle. Happy Holidays!
I was ready to get back to it for my last treatment on the 17th. I had the usual cruddy feeling Thursday, Friday and past of Saturday. I actually got outside some Saturday and worked a few hours around the garage on Sunday. As far as nausea I did a lot better.
The effects of the oxilipatin are starting to become a hassle – especially the cold sensitivity. The doctor told me it would get more severe. Last week I started to break up some lettuce in the fridge and my fingers almost froze off! They felt like it anyway. I have had cold sensitivity with drinking cold things, but not much with touch. I had to wear light gloves Sunday working with some wood because the wood was so cold to my touch.
Another effect from the oxiplatin is a heaviness in my legs and muscles. I had already mentioned this to the doctor and he had warned me it was a side effect. Today was very bad for me – my legs were so heavy. I called the doctor’s office about it – the heaviness and numbness seemed to be going up my legs and into my chest. The doctor told me exercise and walking would help – which I did – and it did help. Still, it is a struggle when you feel like you should lay down and rest and the opposite is actually true. The whole thing was of course accelerated by anxiety – I began to worry about it which made it worse. Once I got over the hump (walking some) the sensation eased up. It is still nagging some, but not like this morning.
I have been trying to do some exercise. Mostly I spend a few minutes on a recumbent exercise bicycle. Some days it seems like 5 minutes is a marathon, especially when my legs are heavy. Last night I rode a whole three minutes and had to stop. I also do about 5 minutes of light barbell action. For a guy who used to lift for an hour and bike for 40 minutes and bench press over 300 pounds (yes at age 44) it is sometimes disheartening at the physical shape I am in. Still, I spent the end of July until early November doing nothing but getting by, so I have slipped.
Unfortunately I have also gained a few pounds. The nutritionist of course is worried the chemo will cannibalize muscle (which it does), so I have been drinking some protein / vitamin shakes. They help, but the nausea meds also make me eat. I did lost 30 pounds this summer before I got sick again and do not want to put it back on again!
I always write about the medical here, and someday will spend more time on the spiritual. I do write in other places more about the transformation cancer has caused – both good and bad, for me. There have been good things. I am more at peace spiritually than ever before and feel I have a new relationship with God. I appreciate the little things more each day and am more thankful for them. The passage of time is also so fast – it seems just yesterday I started this new bout with cancer.
Of course there is the anxiety, and death issues, and worrying about family. I am doing better dealing with it all, but it still takes a lot of work. I have a wonderful wife who has such faith and strength that it is awe inspiring. I have four wonderful children to live for. I have an online support group, lots of caring friends and a great community (who continue to give our family donations).
I have also grown comfortable (finally) with the medical staff I am working with. I believe the doctor I now have to be a VERY good one, for a variety of reasons. It is not just his knowledge, but the way he handles things. He was very happy I sought a second opinion about treatment. He treats the whole person, not just the disease. We do not discuss statistics, or percentages – we talk about action and hope. It makes a difference. I ask a million questions, and he is always patient and answers them for me. He makes time to treat me – not the disease. If your doctor is not working “for” you – you need to find another doctor.
Finally, like many of those in my situation, I try to “live” life. A friend of mine and I were discussing my situation and he commented he didn’t know what it would be like to be in my shoes. I said “hey – we are all terminal. We’re all going to die, you can’t avoid it. It’s just when.”
I try not to worry about the when. I make plans for the future. I still believe I am going to overcome this – other people do, so why not me. I try to live and be thankful for each day and each moment. I am not always successful, but I keep trying.
On December 23rd I will have another ct scan (after two more treatments). Then we will decide where to go from there depending on the results. Until then…
November 5, 2004 - I have had my first ct scan since re-diagnosis. News was so- so - I am considered stable at this time. There has been no tumor shrinkage, but no tumor growth either - so that is good. If nothing else we have pushed the clock back two more months. The doctor said we will go four more sessions and decide what to do. If I stray "stable" - we may switch to a different protocol to try and get some tumor shrinkage, or keep going with stable.
Some good news. If there begins to be some growth, it should be very slow growth - which does allow time to switch to a different protocol. I also have learned in some patients this can be eradicated - the problem is it usually comes back once treatment ends. Time is the big thing - the longer we go - the more time for someone to find a better way to treat it or kill it.
So - we go on. I can do this a long time if I have to. I am adjusting to the chemo - recovering a little faster - usually three days then I start feeling better and pretty good by day five. Then a week off until the next one. Mentally I just keep trying to live one day at a time - live the ones I have, not worry about the ones I may not have.
October 30, 2004 - Four down, how many to go? I think that is the worst part about this. When I had adjuvant therapy I knew I had 18 sessions and then I was done. There is no way to know when, or if - I will ever be done with chemo this time.
I have learned that those who received the oxiplatin in adjuvant therapy two years ago in the trials have are 50% more likely to not have a set back. Too bad I did not get that then.
I am also disappointed in the monitoring for cancer since that time. My former doctor spent too much time simply relying on the blood tests. I have spoken to others with similar feelings. A simple chest x-ray three months earlier would have found a few tumors in my lungs instead of hundreds.
I am adjusting to the chemo. I have infusion on Wednesday - then wear a pump with more 5FU for two days. I did have a medport put in. If anyone is going to have chemo for an extended time, I would definitely recommend it. I get hooked up Wednesday morning through the pump, they take blood through it, then I get the infusion and pump. No needle sticks! I barely feel the insertion, and they have trained my wife to flush and remove it after the pump - I don't feel anything when it is removed. I just have a little foreign object in my right shoulder about the size of a nickel.
I usually feel very wiped out Wednesday night. Thursday and Friday I get nauseous by evening, and by Saturday begin to feel better. The biggest problem of course is fatigue. I just get tired easy, and quickly. I began exercising this week (my off week). It involves a whole 5 minutes of light barbells, 6 minutes (and building) on the exercise bike and five more minutes of barbells. The I am wiped out - very pitiful to me for a guy who used to bench press 350 pounds, but it is a start.
Next week we will know...my first ct scan is Tuesday and infusion on Wednesday. I feel pretty good - of course I never felt anything in my lungs anyway. Still, I don't feel sick other than the chemo drugs. I do a lot of meditation, visual imagery, prayer - convinced through God and my mind I can be healed. I am confident I am better and will get rid of this - if not, I will be disappointed, but firmly believe it is in the hands of God. I try to be thankful for each day and the blessings I have ~ too late we understand what a gift they are.
October 8, 2004 - First - I changed doctors. I found one who believes - and believes in me. He has been great so far.
I have now had three sessions of chemo. I am on the FIRFURRI (I believe) protocol - Avastin, Oxiplatin, 5FU and Leucovorin. I get a four hour infusion, then wear a pump and get more 5FU for two days. I go every other week. We ran the CEA this week (after two sessions) and no change - went up slightly which is discouraging to me, but the doc says it fluctuates a lot so we really don't know anything (easy for him to say).
I have one more treatment then before the November 3 treatment I will have a CT scan to see what is up.
After three sessions we finally have the meds right - got pretty sick the first time - ended up in the ER due to nausea and dehydration. It was pretty bad at first - I was really washed out and almost did not make it to get help. Each time has gotten a little better - I am doing pretty good (knock on wood) right now.
Of course I pray a lot and meditate a lot - trying to heal myself as well as the meds. I try to trust that whatever happens it is in God's hands to decide. The support, prayers and donations from co-workers and the great town of Colstrip, Montana has been unbelievable and means so much to my family and I.
September 4, 2004 - It has been two weeks since the bad news came in. My chest x-ray was abnormal, and the ct scan showed hundreds of small spots in my lungs. I had a lung biopsy and it is the return of the colon cancer. The prognosis is not good - my pessimistic doctor said maybe two years. The same person who said not to worry for two years even though my CEA was gradually going up.
I had a med port put in my shoulder this week, and will begin chemotherapy this coming week. The doctor wanted me to do a clinical trial, but it involves getting Avastin or a placebo. I called this week and said no trial, I want the FUFOX treatment (Oxiplatin) and the Avastin now. The nurse seemed okay with it - said she would pass the note on. I never received a call, so I am assuming I will get what I want - otherwise I will have to find another doctor.
When I had chemo two years ago I was in a trial. I understand the necessity of them - but...I don't know if Oxiplatin had just been approved then, or if it was approved right after I started the trial. The trial was about the Oxiplatin - which I did not get after being randomized into the standard treatment side. Today's literature says those who got oxiplatin for adjutant therapy have a 50% higher response and have no reoccurrence. I am insistent this time - I will do what I think needs to be done as well as the doctor. STAND UP FOR YOURSELF AND DON'T BE BULLIED BY DOCTORS!
My experience was also bad because of the negativity of the doctor when we discussed this. Does he think I don't know this could kill me? How about a little hope and prayers!
My spiritual growth in the last two weeks has been amazing. I have been blessed - I even drank some holy water - will melt those little bastards from the inside. Even having had cancer twice - I only now have come to terms with my mortality. I will die - someday. I do not feel this is the time - little children at home, a loving family, much to do in life - I am only 44 and strong - I will overcome the hurdle of cancer one more time! I hope and pray for the healing power of God and his son Jesus to aid me in my quest.
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