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!

Thursday Dec. 30th (Day +21)

Hanging out Christmas morning

Sophie & James cuddling - so cute!

Thank goodness things have been fairly uneventful since we've been home...we had a wonderful Christmas together as a family, very relaxing and stayed in our pj's most of the day!  It's hard to believe that so much time has already passed and it's time for me to return to work this weekend.  But I'm ready to go back, if for nothing else than to feel that our lives are starting to return to "normal".

Today at clinic we were in and out in an hour and a half, not setting any records but pretty good going!  Labs are more or less continuing to trend in the right direction.  All of Brian's blood counts (hemoglobin, platelets, and white blood cells) are slowly but surely regenerating and repopulating.  His creatinine is his biggest rival right now (and very possibly forever), as it's wavering around 3.  It went down as low as 3.05 this past Monday and was up to 3.19 again today - not huge jumps like before, but discouraging that it went up versus down.  So Brian's job right now is to drink as much as he possibly can and to work on eating more - sounds like a dream come true to me, but sadly it's a chore to him.  On a good note though, we don't have to go into clinic for another week!  And if his counts are stable next Thursday they'll decrease his visits to every two weeks - sounds good to us!

So now it's all about eating, drinking, and getting some energy back.  Just wait until a Guinness tastes good to him...it will be difficult to stop him once he starts!

Thursday Dec. 23rd (Day +14)

Went to the Clinic today, all I needed was some more IV fluids. My WBC is 5.6, platelets are 21 and creatinine is 3.19. So all in all everything is getting better each day. We now don't have to be back at the clinic until Monday which is a great 'present'.
It has been a long hard road to get here and I want to say thank you to everyone who sent messages of support and encouragement and everyone who just looked in on the blog. The prayers and positive thoughts from friends and family have been enormously appreciated and meant a lot when I was on the edge.
So thank you for helping get me through this and I hope you have a Merry Christmas!
Brian

Wednesday Dec. 22nd (Day +13)

Today has been a great day!  We started with a visit in the clinic at 7am - bright and early.  Labs continue to improve - white blood cell count is up to 3.6, hemoglobin 7.1, platelet count 12, and creatinine 3.3!!  So all in all, Brian's body is healing itself!  It will take anywhere from 3-6 months to fully recover all of the counts, but at least we're continuing to trend in the right direction.  We've been told that the creatinine would slow down in its' decent towards normal, so the small decline is neither surprising nor discouraging.  In fact, I was encouraged that it continued to decline when this was the first time in over two weeks that Brian has not been on continuous IV fluids.  Brian is still very tired and spends most of his day resting, but he is doing remarkably well walking up and down stairs, eating meals with the family, etc.  He is a real fighter and can't wait to get back on his bike!  He's already organizing getting his bike and the trainer over here to my parents' house so that he can start riding again next week!

After the clinic visit we visited our house to gather a few little things and then hung out with the kids the rest of the day at my parents house...our home for the time being.  Sophie has been great with Brian.  At first she was a little timid due to the lack of hair, but after a little while she cuddled up next to him and has hardly left his side since.  I've included a photo of them hanging out in bed watching tv - very sweet!

Tuesday Dec. 21st (Day +12)

Guess what?  We're going home!!!  Brian's recovery has been amazing over the past couple of days.  His creatinine has dropped steadily and is now 3.5 (normal is around 1, so we still have a ways to go but we're safely "out of the woods"), white blood cell count jumped from 0.7 to 1.9 today, and all other labs are holding steady.  He hasn't needed any transfusions over the past 2 days, so platelets and hemoglobin are maintaining - they still have a long time before they're normal, but at least he's not continuing to drop each day.  Electrolytes still need some tweaking, but that's not too big of a deal.  So he'll have clinic appointments tomorrow and the next day and then hopefully they'll drop down to 3 days a week - so basically we spent our busiest time in the hospital.

He officially started losing his hair two days ago and decided to shave it all off yesterday...but as of right now eyebrows, eyelashes, etc haven't started coming out.  Here are some pics!

Hair's falling out...very patchy so it's got to go!

Action shot!  We thought stripes would be a good look...!

Notice he's near the exit sign...ready to flee when they give him the "okay"

Monday Dec. 20th (Day +11)

Today has been a good day!  Counts are improving, Brian is eating a resting better, etc.  It's been busy and I'm heading home to see the kids now, so I will post more information tomorrow with some photos of the balding man!  Sorry for the short entry today...the day just kind of got away from me.