Wednesday June 29th 2011 - 180 day follow-up visit

Today we received the long awaited results from my 180 day check where I had blood tests, 24hr urine and a bone marrow biopsy. Of course Kristy was able to check them early so we knew I was now in complete remission, which is better than at 100 days when I was in 'good partial remission'. I can now stop taking my prophylactic meds and may or may not take a low dose chemo drug in the future. This will be one of the questions I'll ask Dr Richardson in Boston. Normally someone in my position would take Revlimid to prolong remission but this is metabolized through the kidneys and as mine are affected by myeloma it may not be a good idea, we'll see what he says.  Also, since I'm in complete remission, that would be another reason we could potentially postpone taking Revlimid at this time. In the future I will be having blood checks every month and cancer marker checks every three months for the rest of my life. Blood work today was encouraging: hemoglobin 12.5, wbc 5.1, platelets 233 and creatinine 1.61.
So that's about it. I'm in remission!  The statistics say that on average someone with Myeloma stays in remission for 5-6 years. I have a chromosomal abnormality which means that average stats for me are not that good. Of course statistics are by definition immediately out of date and group all kinds of people together. I am hoping  to help make those stats a little better.
So this blog should get quiet for some time...a long time hopefully, nothing to report will be nice. The last year has been an interesting one. Thank you to all the people who have helped us along the way, it would have been so much more difficult without your help. My experience of cancer so far has mostly been highlighted by good people, from my doctors to my friends and family... with a little sickness thrown in. So that's not such a bad deal.

Friday June 24th 2011

I went in to the clinic on Tuesday to have a strep test and a cbc (basic blood test), the reason being I have a sore throat which is a little concerning. Strep was negative and counts were good: Hemoglobin 11.7 Platelets 195 and WBC 5.4. So it looks like a simple cough/cold/sore throat. I also moved my 180 follow up meeting to next week.

6 Months Checkup - June 7th 2011.

James & I on a family outing to see Thomas.

I had my 180 day check up at the BMT clinic at the Westwood campus.  I was able to do everything there without going up to the main KU hospital which was great. First job of the day drop off my 24hr urine bottles (yes I'm a 2 bottle man). Then down to X-ray for 40 minutes or so for a full skeletal survey. Then blood work at the Lab. By this time I was so ahead of my schedule we went to the coffee shop to kill some time and some oatmeal raisin cookies! The 'we' today is my Dad and I, he is visiting from Ireland at the moment. It was nice to show him where I've been spending my time over the last while. While we were waiting around with our coffees I got the results of the X-rays (pretty fast!) and nothing has changed since my 3 months check which is the news I was hoping for. Also blood work showed: Hemoglobin 11.4, WBC 4.3, Platelets 186 and Creatinine 1.73, all great news. The wbc is a little low but nothing to be too concerned about at the moment as all the other numbers are good. Numbers will fluctuate a little, and as long as all the numbers aren't going down it is just the natural ebb and flow of my body recuperating.
Next was the bone marrow biopsy which was fine, it's my 4th I think and in case anyone has to have one (and I hope you never do) they do not hurt that much. I had heard stories of pain and suffering on a grand scale and in all four cases this did not happen. I've had more painful dental work.
The results from the 24hr Urine and the biopsy will trickle in over the next week and I will get the official results on June 21st when I meet with a doc to discuss the full results.
One more encouraging result I got today was that in one of the blood tests my kappa light chains (cancer marker) were in the normal range for the first time which is amazing! To give you an idea of how things have changed when I was diagnosed my 'score' was 397.5, at 100 days post transplant I was 2.7 and now I'm 1.5 and to be in the 'normal' range you have to be under 1.9. So as I said amazing news and interesting that there has been an improvement from 100 to 180 days.
Generally I am feeling tired, I'm pretty sure the weather/heat has a lot to do with this. I'm still able to workout, but not as hard as I would like. But given some patience I'll get there.

Tuesday May 31st 2011.

Things have been quiet around here, partly because of a bug on blogspot didn't allow me to login. So anyway, my next appointment isn't for another 8 days or so. It's my 180 days (6 months since transplant) check. Which means lots of tests, well lots of x-rays and blood and urine tests plus a bone marrow biopsy. At my last check on May 23rd all was fine. I started the ball rolling for my second opinion trip to Boston, hopefully we can organize it for the beginning of September. All my counts were fine, platelets were 160 which is getting to the lower edge of normal but as this was the only number on the low side my N/P thought it was probably because of one of my drugs if been on since transplant, they have a tendency to suppress platelets. Happily after 6 months post transplant I can stop them. Soon I'll be on hardly any drugs until maybe they decide to put me on a low dose chemo drug, my old friend Revlimid. My hemoglobin was 9.8 which is still great. I can't remember the others so they must have been fine. I also had my last Pentamidine treatment. Still working out on the bike and the numbers are still getting better. Up to an Av of 16.44/hr on the trainer. Still slow but getting better. Resting HR down from 100 to 68...so far.

Fun in the Pentamidine tent!

Wednesday May 18th - BMT Clinic

They say working out cannot help your hemoglobin level, well maybe they'll find a link at some stage because mine is going through the roof! Well not the roof...it is still not even normal but at 10.1 it is at least in the same neighbourhood as normal (13.5 - 16.5). I think it had been dancing around 7 point something for over 6 months, then when I get back to an hour on the bike a day it only takes 3 weeks to get to 10.1! Whatever the reason I'm happy. Other numbers WBC 4.7, Platelets 198, ANC 2.87 all are a little bit down but still in the normal range so nothing to worry about. Blood Urea Nitrogen (BUN) is showing I'm a little dehydrated still - which is amazing as I'm consciously trying to drink more. That being taken in to account my Creatinine at 1.82 is pretty good I think. I'm hoping if I manage to drink enough it will show below 1.7!
So that is all the boring, hard to understand medical stuff. I weirdly enough understand most of it now and pay close attention to my labs.  And what the numbers are telling me my body has already let me know, I feel great and I'm getting stronger. On Sunday I dusted down my outdoor wheels, put them on my road bike, put on all my cold weather gear (it was cold and windy out) and rode out to Shawnee Mission Park. It is a hilly ride and not that much fun given my current level of fitness but I wanted to get out and back without getting off my bike on the hills. I also wanted to gather information on my Garmin to compare back and forward to plot my progression. Well I made it there and back without putting my feet on the ground. My average speed was...unprintable but I was pleasantly surprised I didn't feel worse. I'll be training on longer flatter rides for a while I  think. On the trainer in the basement I do an hour with 1 minute standing intervals every 10 minutes and that is feeling better. My distance is increasing (in an hour ride) from 13.4 to 15.27 miles, still a long way to go though.
I am starting to look at setting some goals on the bike which is great. For a while there the goal was to get on it again and now I can imagine it will be a bit more, although I've not figured out what my new goals are yet.
It feels like I can start to resume my life now, well a more normal 'my life'.

Monday May 9th - Clinic visit

All is going well at the moment. All my counts are doing well - wbc 5.2, hemoglobin 9.0, platelets 256 and creatinine 2.01. Now, the creatinine was affected slightly because I'm a little dehydrated. I've been hydrating when I workout but cutting the lawn in the heat required more fluid intake than I thought.
So all together things are going well and I'm feeling good. I spend an hour on the bike everyday and hopefully will soon venture out. Having enough energy to do normal stuff is great, I guess looking back I didn't really realize the full extent to my fatigue because it was so gradual from more than a year ago.

Tuesday May 3rd - Blood work at the lab.

I'm not a pill taker but...

Before August 2010 I really hardly ever took pills. If I had a headache there was a reason so why mask it with a pill, drink more water or spend less time in front of the computer. So I'm not a great pill taker, but I have had some practice of late. These are all the bottles of pills & potions I haven't finished. Anti nausea, blood pressure, chemo, vitamins, anti-viral, anti-biotic, anti-pain, fiber, "magic mouth wash" and of course hand sanitizer - all the time. I still don't like taking pills and if I'm given the option I normally keep the pill 'just in case'.
So anyway, all that said I have good news. I have been riding my bike! Mostly on the trainer but I have been on it about a hour a day 6 days a week. I keep my HR at 85% of max. and I think I can see improvement. Mostly cardio, my resting HR is coming down and I'm able to increase resistance on the trainer. I'm also starting back with some light weights. I went for a 30 minute ride on my mountain bike last Tuesday and really enjoyed it. It was hard and my muscles feel very heavy and useless but hopefully I can change that. I did have to get off my bike on the way back - even on my lowest gear, but the hill on 79th Street kicks up to 13% just before the top and there was no way I could keep going, having got off the bike I could hardly walk up it! But working out again feels great and I almost feel normal again, which has been a long time coming. I'm tired and will continue to be for a few weeks while I get used to regular exercise again but even in a week my baseline has got so much better and running up stairs no longer makes me blackout and while carrying James around during the day I'm now not always looking for the nearest chair to sit on, so something is working.
I had labs drawn today (Tuesday) and wbc is 2.6, hemoglobin 7.6, anc 1.49, platelets 236 and creatinine 1.70. I've been told level will fluctuate a little initially but all the numbers are okay and platelets are doing great but my creatinine is out performing my best guess at the moment! A drop of 0.12 in a week is amazing, I had conceded to it staying at 2 but I'll take 1.7 or anything better I can get. I'm down to one visit a week now and all going well will be once every 2 soon. I'm just hoping that all my numbers get a little better then stabilize. So hopefully before long I'll be out on my road bike hitting some hills!

Monday April 25th - Clinic visit

Good news today, all my counts are doing well. Wbc 3.1 up from 2.7, platelets 126 up from about 40, hemoglobin 7.9 up from 7.7 and creatinine is now 1.82! Also anc is 1.74.
Dr McGuirk said the boost had worked fantastically and that it had been the adenovirus that had knocked out my bone marrow. For that to happen again would be very very unusual and he said in 20 years he'd never seen it happen a second time. The only real way it could happen is if they had missed something and there was another reason for the bone marrow suppression. So I'm hoping that is not the case. We are going to ask another chap called Paul Richardson for a second opinion/further ideas on keeping me in remission for a long time. Dr McGuirk encouraged this and rates Richardson as the best in the country for MM. He's in Boston so it looks like we're going on a mini trip to Boston at some stage. He encouraged me to workout taking it easy at first, so I'll take him at his word. He said he has seen people acclimatize to a low hemoglobin level and still run distance/workout. So I'm hopeful I can get back some decent level of fitness on my bike, running depends on my back and I'll just see how that goes.

Saturday April 16th - BMT Clinic

Good news today, all my counts are going in the right direction! I think we can say that the stem cell boost is working!  WBC 2.5, hemoglobin 8.2 and platelets 16. My creatinine is 1.92, I can't remember the last time it was in the 1 point somethings! So hopefully in 3-4 days I'll be back in the 'normal' ranges and not need anymore transfusions for a while. My ANC needs to be 1500 before they stop daily neupogen shots and it's up to 900 so back in tomorrow for one of those and then blood test on Monday which I hope to 'pass' with climbing numbers!

Wednesday April 13th 2011 (8 months since diagnosis).

I have hip ache/pain! Hopefully this means there is some movement of stem cells and engraftment is just around the corner. Over the last few visits my counts have slowed their decline and I've needed less transfusions. I got platelets yesterday but my hemoglobin has risen to 7.9 which is the highest it has been for a while and that is without extra blood transfusions. Because my wbc is low I have managed to pick up viral and fugal infections but hope they will be beaten into submission by a rising wbc and drugs.

Friday April 8th 2011

Had meeting yesterday with Dr McGuirk - he is just great. Sorted out any issues we had, also pointed to the adenovirus as being the probable cause for the demise of my old marrow but expects with 90%+ that this stem cell boost will work and have me on the mend in the 10-14 days that it normally takes for a transplant to work. This is something Dr McGuirk has seen in the past on numerous occasions so it is not as unusual as I originally thought (I don't want to be anymore 'special' than I already am).  He also went through the potential plan B,C, D and I think there may have also been an E, plus the likelyhood of needing these to happen which are small. So a lot of fears were allayed.  I got blood yesterday and of course my daily neupogen shot and they also X-rayed my jaw to check it more thoroughly. The jaw x-rays came back fine, no bone problems.
Today my gums are a little worse and have a couple of extra sores so I'll mention that today, I've lost a little weight because eating isn't as pleasurable as it has been but of course my first thought was great, I'll be cycling up hills just a little bit quicker (maybe able to stay close to Kevin's back wheel...in about another 6 months!).
Just got to clinic for my shot and was greeted with "hello beautiful", by one nurse and "hello trouble" by another...today could go either way. Okay so they did a blood test...just in case... and I need platelets, my count was 8, so it looks like I'll be here a while.

Monday April 4th 100 day review at BMT Clinic

IHOP for my birthday

Lovely dinner by Kristy and first glass of wine that has tasted great for a long time.

a perfect moment

Getting more stem cells...and it hurt!

Interesting day but not for the reasons I was hoping. So my review says my myeloma is in remission and we're on track. This is where the conversation should have ended and Kristy and I should have skipped out of there to a small celebration of some kind, sadly not the case. As we know my bone marrow is suppressed and I've been getting blood products and neupogen shots to keep me going. Well last week one of my doctors thought my lymphocyte count was high and that pointed to a particular problem with a particular fix. After talking to another of my doctors he said the opposite, that the lymphocyte count was low....which is a little concerning. This is the first time in my treatment this has happened so I can forgive the error and move on. I did have my heart set on the easy fix that I was led to believe could be the case if the lymphocyte count was high but hey ho!
So my doctors are back to not knowing why at about 100 days post transplant my bone marrow stopped working.
To add a little insult to injury, the last 3 or 4 visits I've had to the clinic I have mentioned gum/tooth pain with swollen lymph glands. This was pretty much passed over until today's (Monday's) visit. My face/jaw is now quite swollen on one side  and I have an abscess. This happened I'm told because my wbc is still low (0.6), so I'm open to all kinds of infection with no defense. So they started me on IV antibiotics and decided I should get another stem cell transplant/boost...now! The stem cells are the next attempt to raise my counts and kick start my bone marrow so that I don't have to be kept going via transfusions. The stem cells don't start to grow (engraft) for about 10 days so my doctor wanted to start immediately to minimize the time I'm open to infection. Sadly they haven't had someones counts drop at this point before so we are in uncharted territory. There is no guarantee the cells will work and if they don't there is a plan B and maybe a plan C, which start to get a bit unsavory around C so fingers crossed for plan A!
So, in goes a huge needle "this is going to hurt" - thanks Kristy! I guess stem cells are relatively large little buggers...and off to the hospital to nab the last room on unit 41, yes my old friend where I spent 12 days in December, where I felt the sickest I have ever. They even had me in the room next to my old one - I'd like to think it was for old times sake, but I was told it was actually the only open room. However it was nice to see the nurses who helped me through those days, it is a cool unit. Last time I had a transplant I had a central line which dumped any drugs or cells into my jugular vein near my heart. I didn't feel any sensation when they slowly infused 4x50ml syringes of ice cold cells. Well I felt it today! It was same as a brain freeze in my arm for about 30-40 minutes! Not a lot of fun, the problem is if the cells warm up the preservative they are in becomes toxic. They also gave me 50ml of benadryl IV before the cells which confined me to a laying position as I had no sense of balance.
So our 'good news I'm in remission day' ended up not as fun as I would have hoped. It also took a lot longer than anticipated - thank you Kathy for looking after our kids all day! 
I know I've said it before but I don't think I can say it enough, thank you family and friends for your help and support. This is a very difficult process made easier on me, Kristy, Sophie and James because of you.
Good news, okay creatinine is 2.1 and all my GI, food and drink issues seem to have dissappeared over the last week or so. Coffee, wine, beer and food is pretty much back to normal and I get hungry and thirsty again - which is nice. I'll be going to clinic everyday for a while to keep an eye on things and for daily neupogen shots. So I'll update if anything interesting happens.

Thursday March 31st 2011

Well I was hoping for better scores today. It looks like my bone marrow is still suppressed and not up to much. WBC is 0.6, platelets 6 and hemoglobin 7.1. I also woke up this morning with a slightly sore throat. So I'll be here at the clinic for 3-4 more hours to get blood and platelet transfusions and a neupogen shot. My Lymphocyte level is 88 which I'm told means there is still inflammation or a virus somewhere in my body.  I don't feel too bad, a little tired maybe but the counts are not what I wanted to hear. They didn't run the creatinine test today so no numbers there till next time. I've just been told they are doing another blood test because of the Lymphocyte number. Because of the sore throat they did swab my nose and throat when I arrived. So we shall see...

Tuesday March 29th

Today my counts didn't do much, wbc 1.0, platelets 14 and hemoglobin still 7.8. Creatinine sadly went up to 2.3, so no fine wines just yet. They gave me a neupogen shot today but nothing else.   A lymphocytes value means they think I have something - a virus, still active and causing some sort of inflammation.
Nothing I can tell other than generally feeling tired.
I go back for more blood tests Thursday and then the following Monday I meet with a doctor to review all my counts and decide whether I need another stem cell transplant/boost.

Sunday March 27th - Clinic visit

Well the last few days have been a concern, but today is more encouraging. So I got blood and Neupogen (a white blood cell booster) last Friday, then after I showered Saturday morning I found more bruising on my body, called up the BMT clinic and they suggested I come in for platelets which I did. I had blood tests at the clinic at 8.15 this morning because over the last week or so my counts have been dropping.
Well today the count news is better, it looks like they're holding their own and coming back up a little. WBC is up to 0.8 from 0.4, hemoglobin is 7.8 from 6.6 and platelets are 24 up from 12. Even with transfusions last week things were dropping so although the numbers now are bolstered by blood products and drugs - it is good news and I think I'm on the mend. Whatever made my counts drop (virus I'm guessing) is passing or being beaten into submission, which ever picture you prefer.
So Tuesdays blood test will tell us more. Myself I think the Guinness I had last night helped a lot (thanks George!).

Friday March 25th - BMT Clinic

Got tested today counts are still dropping for some reason. WBC is 0.4, hemoglobin is 6.6 and platelets are 12. So I'm getting more blood today, more platelets Sunday, I've just got another neupogen shot - so I think I'm set for a few days! Good news is that my creatinine is down to 2.01. When it goes below 2 I'm going 'out on the town' to drink the finest wines known to man!

Wednesday March 23rd

Well I went into the BMT clinic on Monday to have a blood test and drop off my 24hr urine for testing and left after about 10 minutes for a 'coffee on the Plaza' as I knew the results would be read and would be revealed at a doctors appt a week later. However...I was just about to sit down with magazines and a coffee when the clinic rang to say I needed to go back asap. My WBC, platelets and hemoglobin counts had dropped dramatically and they didn't know why and it was unusual for everything to drop at this point.
So I went back and had another blood test which confirmed the first test was correct and indeed my platelets had dropped from 119 to 6, WBC from 3.9 to .9 and hemoglobin from 8.0 to 6.3. So the first thing they did was to send me for a bone marrow biopsy (bringing it forward by a week or 2) to see if it was myeloma coming back, they were also able to test my marrow for a particular virus (Parvovirus). Then they gave me platelets because a value as low as 6 (which means I have 6000 platelets in my body...normal is 150000-400000) leaves me open to spontaneous bleeding. When I think about it I don't want to be so spontaneous when it comes to bleeding! As it is my arms look the worst they have because of bruising from needles and wrestling with James!
Today I got back the results of the bone marrow biopsy and another blood test. The good news is that my myeloma is in remission and that isn't the problem. Also the Parvovirus test was negative. The BMT docs have only ever seen this issue once before where at this stage a persons immune system drops and the bone marrow is not producing anything.
They gave me a blood transfusion as my hemoglobin was 6.3 and also a neupogen shot which I haven't had since being in the hospital. At this point it is hoped that the neupogen will boost my WBC count. They're waiting for one more test result which is a genetics test (not sure exactly what that will tell us). Following that I may be getting another stem cell transplant or as they put it a 'stem cell boost' which they hope would kick start my bone marrow - if it hasn't started working on its own.
I won't need chemo to suppress my bone marrow...as I seem to have managed that all on my own.
Another bummer is that I'm back in isolation as I have no immune system, so hopefully I don't catch any viruses in the near future!
That's all I know at the moment, another clinic visit on Friday will shed more light on things hopefully.

Saturday March 19 - Day +100!

Hello hair!

100 days since my transplant...wow! It has been a long time coming and when I remember back...well maybe it's best to look forward. I am trying to remember where I thought I'd be at Day 100 and it is hard to recall. I think I am about where I thought I'd be fitness-wise but there are a few issues still hanging around that I didn't think would be...

I thought I'd be able to open the fridge and want to eat everything like I used to but for some reason food still doesn't seem appetizing. My taste for most things is back to normal or near to normal but for some reason I forget to eat and there is still an element of forcing myself to eat because I know I need to eat...every single day! This maybe because of my 'small intestine neuropathy', but to tell you the truth I'm not sure.

My heartrate is still high and that for sure I thought would be back to normal-ish by now. Sadly my resting HR is 92 and although I've been on my bike in the basement for up to an hour my HR is between 150-160 and I'm not going very fast...at all. This is because my hemoglobin was 8.0 last time I checked and it should be 15, so there is a lot less oxygen flying around my body, hence the HR trying to make up the difference! This may come back on it's own or I may need to take some more drugs to encourage a more normal level.

Speaking of drugs I'm still on an antiviral and an antibiotic so I don't get something nasty while my immune system is not 100%, plus some other bits and pieces (multivitamin, folic acid, blood pressure med, etc). These I believe I need to keep taking for another 80 days. They seem to make me feel a little crappy but I've been taking them for so long now I'm not sure what normal feels like.

So to recap, I feel better all the time (in small increments), I have a ton of hair on my head (I never lost eyebrows) and my beard grows quicker than before...which is a surprise. All in all I can't complain and hopefully one of these days the small issues I have now will get sorted.

Thursday March 3rd - BMT Clinic visit

So, I got back the RSV test results and I was negative. Kristy and I made the decision for me to stay at home (so I could get some painting done around the house) and Kristy and the kids to move to her parents. So I have been here on my lonesome all week. However I have got lots done. I do have a cough/cold but not RSV instead I have adenovirus. My family will be reunited on Saturday 10 days after James' illness, I'm looking forward to it!
Today went fine Carlos stuck me for my blood test, he got me first time of course, he's great. My levels are still improving, slowly. Hemoglobin is 8.0 up from 7.9, no need for EPO, they are happy to see it progress on its own. Although I was slightly dehydrated (whoops) my creatinine is still coming down 2.15 from 2.19. Platelets and WBC have both dropped a bit probably due to my cough/cold.
My cancer marker from the blood test last week shows as 2.7. This is considered remission as a normal persons number is 1.9. When I was first diagnosed my number was 398 and just before my high dose chemo (Melphlan) it was 8. So in a couple of weeks (around 100 days after transplant) I have further tests which will include a bone marrow biopsy which hopefully will be as positive.
My nausea is getting better, I'm still not eating and drinking normally but I'm getting there and one day soon it will disappear....

Thursday Feb 24th

I had a planned visit to the BMT Clinic tomorrow but ended up going today. Kristy took the kids to the docs this morning and he confirmed Sophie has RSV and James sounds like he is getting it. They should be okay but if I catch it it may be more problematic. It can end up as a RSV pneumonia but only in people with some sort of compromise to their immune system such as new babies and old folks...and me.
So, I went in for an RSV test and also had all the blood tests I had planned for tomorrow. The RSV test will take until tomorrow. But sadly I have to start taking precautions now in case I haven't picked up the virus. It means I have to stay clear of the kids, we're trying to figure out how to do this as I've been back looking after them a lot of the time lately while Kristy has been studying and working.
The blood results were encouraging, creatinine is down again 2.19 from 2.44. I was guessing my hemoglobin was a bit better at around 8 and I wasn't far off, it is 7.9 from 7.6. My WBC was down to 3.8 from 5.2 which could be because I have been fighting off a cold or could be RSV. They checked my cancer markers which normally happens 100 days after transplant and I'm on day 76. I'll get the results from that in 3-5 days. Still nauseated but slowly getting better I think - bloody slowly!

Friday Feb 11th BMT Clinic visit

This appt was set up because last week my hemoglobin was so low that I was probably going to need a blood transfusion today. Well my hemoglobin bounced back all on its own 7.0 to 7.6 so no blood needed and also the appt I made for an EPO shot next Tuesday could be canceled. Also a surprise was my creatinine which got better 2.68 to 2.44, a small step maybe but it is still going down which is great. So I don't have to go back for a couple of weeks.
I found out that artificial EPO has some 'baggage' attached to it. If for instance my kidney function doesn't get any better and the naturally occurring hormone EPO  doesn't 'naturally occur' and I have to get EPO shots on a regular basis then statistically people using EPO are found to come out of remission earlier which is a bummer! So basically if my kidneys are buggered and they don't produce EPO which in turn means it doesn't encourage my bone marrow to produce RBC's which means my hemoglobin level is low which means I have no energy. So I take an artificial EPO and it makes me feel better but shortens my remission....what fun! Lets hope my kidneys wake up and produce epo on their own.

Thursday Feb. 3rd

So I had my first appointment in two weeks today.  Due to the massive snow storm my renal appointment was postponed (unfortunately) for another two weeks.  Since my line was pulled a couple of weeks ago I had to be stuck for the first time in over 2 months - as always, Carlos (the BMT phlebotomist) did a great job and got me on the first stick!  My lab results were just ok - creatinine is hovering around 2.6, today it was 2.68.  Hemoglobin was 7.0 and other counts were fine.  At my last appointment they drew an erythropoetin (epo for all those in the cycling world!) level and we found out today that it is extremely low.  It is technically measuring within normal limits, but for a hemoglobin of 7 it should be much higher, stimulating my bone marrow to produce more red blood cells.  Epo is a hormone made by the kidneys and since my kidneys are still working at a fraction of normal, they aren't producing enough epo to rebuild my red blood cells in my bone marrow.  In numerical terms, my epo is 16.8 and normal is 3-24.  But these "normal" levels are for people who have a normal amount of red blood cells/hemoglobin.  The BMT doctor today told me that for a hemoglobin of 7, my epo should be closer to 500. Because epo is so closely linked to kidney function, it is a medication that has to be prescribed by a renal doctor in order to be covered by insurance.  So now we've emailed my renal doctor to see if we can move up my appointment with her, otherwise it is very likely that I'll need another blood transfusion next week.

On to my GI tract...I am still having a fair amount of nausea unfortunately.  I'm still waiting to hear about the results of my previous test, but it's looking like it's what the GI doctor initially thought - autonomic neuropathy which has caused decreased motility to my gut.  After a couple of weeks of treatment for this, it seems to be slightly improving so I'm hoping that it continues to right itself over time.

A couple of days ago I spent about 15 minutes on the elliptical and the past two days I've done some snow shoveling, so I'm starting to get a little bit of energy back!  Going pretty slow on the elliptical, my heart rate was 150 which is a bit of a joke.  So hopefully with some epo on board I'll start getting back to normal and soon I'll be back on my bike enjoying some hard hills!

Almost exactly 1 year ago on top of Slieve Bloom Mountains in Ireland with Alistair

Monday January 24th

Well today I went into KU and had my line (trifusion catheter) taken out. Now tomorrow I can enjoy a shower without press and seal for the first time in a couple of months. It did its job and never gave me any problems (no blood clots or infections), and allowed me to have labs drawn, etc without any issues. Kristy was able to come in and watch the line be removed as she knew the tech, and so she took some pics.
Last Thursday I went into the BMT clinic for a regular checkup. My counts are holding okay but my red blood cells are not multiplying as they should be at this point in time.  So they checked my EPO level thinking that this may be the culprit to my anemia. EPO is a hormone that helps stimulate RBC's be produced in bone marrow.
Also I am still enjoying nausea most of the time and finding it hard to eat and drink. This is unusual and should have disappeared by now, so I spent Friday in the hospital watching radioactive isotopes go through my body! It was a 6 hour test so a very boring day for me. The results showed that my small intestine is not working very well and not processing food very well so this could be the reason for my nausea and aversion to food and drink. One of the side effects of many chemotherapies is neuropathy, which most people experience as peripheral neuropathy (tingling and numbness in hands and feet).  The GI doctor I saw believes that I have an extension of that called autonomic neuropathy, so the nerves to my intestines are "stunned".  The good thing is that he think with some pretty minor treatment it could be reversed within about 3 months.

Ready to have this line out.

It took quite a lot of tugging!

Thursday Jan 13th 2011. Clinic visit.

Well I've been a bit lax, I did go to clinic last week and didn't write anything. The main story from last week is that I'm not eating or drinking very much. I've lost 20 lbs and am a little dehydrated. Creatinine still came down a little to 2.9 and all my other counts are still headed in the right direction. Fatigue is still an issue, I guess a big issue that will last a while.
So since last Thursday I have added a liter of fluid IV everyday and thanks to an appetite stimulant have eaten a little more than last week. So we'll see where things are today...
Creatinine is down to 2.65 which is great, sadly I'm still here after 5 hours getting a blood tranfusion! All my other (white blood cell, red blood cell and platelet) counts dropped. Which is a little annoying but nothing to be concerned about...or so my doctor says. So I need to come back for another blood test next Thursday. They also said they will be taking out my central line soon which will be nice. I long to have a shower when I don't have to cover half my chest with press and seal!