Having Fun....Happy Thanksgiving

My big brother John is in town from Australia. He has been shuttling me back and forth to Richmond which has allowed Mom to have an extended break back home with Dad.  It has been fun with a new caregiver - even though Mom left him a six page list of instructions, we have made up our own rules - lol....  It is so nice to have been able to spend time with all of my siblings over the last few months.

I love being home so often.  I was home last weekend and then came home after clinic on Monday.  We went up and back today (Wednesday) and will be home tomorrow for Thanksgiving and hopefully thru Saturday.  It was a long day with two bags of platelets, a unit of blood, and a biopsy.  John did a great job getting me there and back in all the rain and also hanging out while I snoozed under the influence of lots of drugs.  I'm not sure when I will get the results of my biopsy.  I am discouraged with so many weeks of low counts that I am really not expecting too much.  But it would be nice if it showed that the Vidaza and DLI is knocking back the leukemia.

Back home we have been enjoying time together.  My energy level has been much better, but I still don't do too much.  With such low white blood cells I don't need to encourage a cold or infection.  On Sunday Brant and I celebrated our 20th anniversary.  I asked to have some family photos as our anniversary gift, so on Saturday we went out to Bennett's Creek Park with a photographer.  Even though not everyone was crazy about my request, they all humored me and I hope one or two photos come out nicely.  Even with my GI Jane haircut.  On Sunday, the kids helped me get my wedding dress zipped up.  Brant was very surprised when we walked into the living room.  I can't believe it has been 20 years!! I am so blessed to have him and he has been my rock thru this journey!

Feeling Better...but Still Low Counts

First the good news.... I have been feeling a lot better since my last round of Vidaza and the DLI dose last Thursday. I went home for the weekend and had a great time. My energy level was much better, I even took a walk around the block with Brant. My sister made us the most fantastic dinner on Friday night. I enjoyed just being home without feeling totally wiped out. Brant did take me for my Coke Slurpee and it was awesome!

So the bad news is that my blood counts have not gotten the memo that I am doing better. They are still very low - although I came back from the weekend and my platelets were still at 11 - double digits!! My hemoglobin and WBCs were low and I got a transfusion of blood on Monday but no platelets. They gave me the day off on Tuesday, but I started having some bleeding Monday night so I went in on Tuesday for platelets...the were at 6. Tuesday afternoon and evening I took doses of Amicar because I was still having some bleeding and it is supposed to help. I hate that stuff. I have only taken it a few times, but each time the next day I am very lightheaded and have almost passed out....

I woke up around 5:30 this morning to go to the bathroom and made it just inside the door before fainting. It happened so fast I didn't really feel it coming. Luckily mom is a light sleeper and heard the "thud". I was very blessed to not be injured, just a sore butt cheek. Guess I fell with grace...lol. I really could have been hurt if my head hit that tile floor. That earned me an ambulance ride to the ER and then an admission to Floor 10 to see my good transplant nurses and doctors. Poor mom, I think I aged her another 5 years again!

The ER was not impressive this morning. It took almost 20 minutes for them to start some fluids on me (it really should have been done in the ambulance but we were only 5 blocks away). My blood pressure was in the low 80s/40s range. Mom was beside herself with the lack of speed and was asking for the number to the head of the hospital. She would have connected the bag of saline herself if she could find it. I think there may be a picture of her on the ER wall of irrational family members to watch out for. She really did have a point and they didn't treat her well at all. But I finally got my bolus of fluid and was quickly sent up to the 10th floor.

I feel much better now as I sit here in my hospital bed wide awake from the steroid meds they gave me. I had a transfusion of blood and some platelets during the day. My blood pressure has come up some and we will see what the doctors have to say tomorrow. I am hoping they will let me go and tell me to never take Amicar again. I am still hopeful I can come home for the weekend, but obviously that will depend on how I am doing. I think the Vidaza is having some positive impacts on my disease but I just hope it is enough. I worry about the number of transfusions I receive, but I leave it up to the Big Man to look out for me. I have faith that miracles can happen and this body can recover.

DLI Day

Today I received my fist DLI dose.  That stands for "Donor Leukocyte Infusion" but Brant renamed it "Destroy Leukemia Immediately".  These are the t-cells that they extracted from my brother's blood that he gave back in July.  Besides the stem cell transplant material which I received the day after he donated, they also collected extra stuff and filtered out the t-cells into 4 doses of DLI's.  They have been sitting on ice - really cold ice.  I meant to take a picture of the infusion but it was over in about five minutes.  There is a preservative in the bag that tasted really bad (yes, I tend to "taste" things that are going in my IV).  I almost gagged and he took a break with the infusion, but a piece of mint gum later I was fine and we made it the rest of the way thru.  The hope is that the t-cells will seek out and destroy any bad cells (leukemia).  The Vidaza chemo that I am taking makes it a little easier for the t-cells to find the leukemia.  The DLI/Vidaza combo is not always effective, but is my best shot for right now.  I am doing lots of visualization today imagining those little cells getting to work.

Other than that, not too much to report.  My counts are still low and not showing any signs of moving up.  This treatment is not a fast one....often people try it for 6 months unless the leukemia progresses.  The doctors are keeping an eye on that with my daily blood samples. 

They gave me the day off from clinic yesterday and we enjoyed a change in the routine and scenery.  I wanted to walk some but it was very cold so we went to a mall and had a stroll.  There really aren't many people around in the middle of a work day!  Even though Dr. Chung said I could lift most of my food restrictions, I am still pretty picky about what I will eat since my white count is low.  But I did opt to have a fresh batch of french fries from one of the burger places iu the food court and it was well worth it.  I think mom was happy to see me enjoying to eat something!  The drive home down Monument Ave was really pretty with fall leaves and a crisp blue sky.  It sure beat sitting in a recliner getting platelets!

Tomorrow is Friday and if all goes well I should be able to go home for the weekend after a clinic visit.  I can't wait to see Brant and the kids!

Weekends are the Best

I didn't get to go home this weekend because I am taking Vidaza chemo daily in clinic.  But Mom & I headed out after clinic on Friday and surprised Chris by showing up for the conference championship game since the tournament was in WAAAY northern Newport News and barely an hour drive from here.  Western Branch won - woot woot! It was fun to get to go to a volleyball match.  They advanced to the zone tournament next week.  Good Luck! (Chris is front row, second from left, #18)

Afterwards, mom went on home for the weekend and Brant and the kids took me back to Richmond.  We stayed together in a hotel and had a really nice time.  The kids and Brant came with me to clinic on Saturday.  It is pretty quiet on the weekends and we sort of took over the Infusion Room.  Katie gets a kick out of pushing me around in a wheelchair - even when I can walk!!! Chris was so nice chatting with me while I had to sit in the chair.  One of my fellow transplanters who was there said how much Chris seemed to enjoy talking with me and how nice our kids are. :)  After clinic, it was great to come back to the hotel and watch a big Hokie win over Miami!!

So I don't really know where I am at with stuff.  I will probably talk to the doctors more this week.  My fever and aches got really bad the first few days of Vidaza and I was having to take Tylenol every six hours.  But it seems to be better since the weekend and I am stretching it out to 8-9 hours now.  I guess if the doctors think the Vidaza is working I will get a DLI boost later this week.  That is an extra batch of my brother's donor cells.  If they don't think the Vidaza is working then I need to start induction chemo of some sort to get rid of the leukemia.

My blood counts have been pretty low.  I get platelets every day and was doing the < 5 routine again for several days.  They sent my blood to Wisconsin (again) to be analyzed for matched platelets.  Then they sent six potential platelet samples out there to see if they would work.  I was antibody resistant to all of them.  So after all of that effort, Virginia Blood Services recommends that I get random pooled platelets (which is what I was already getting!!)  Oh well, at least they tried.  The good news is that yesterday my platelets were 9 and today they were 12, so maybe I am climbing back up there.  My white blood cells are about 0.5 and I get red blood cells about every 5 days.  I am what they call "transfusion dependent".  (This is another plug for you all to donate blood whenever you get the chance!!)
 
It was tough to say good-bye to the family today, but our new motto is - "just gotta make it to next weekend".  My sister came up for a night and is hanging out with me until mom comes back tomorrow.  Katie sent me the sweetest text on her way home.  She is a natural encourager.  She sent one of my favorite verses to me -  'For I know the plans I have for you' declares the Lord.  'Plans to prosper you and not to harm you.  Plans to give you hope and a future.'  Jeremiah 29:11.  She admits she doesn't understand what good there is in this situation but says she knows there is a plan for this family and God will see us through it.

Not the Greatest of News....Not the Worst Either

Well today was my doctor appointment to hear results from last week's biopsy.  Brant took off 1/2 day so he could be up here with me & mom when we met with Dr. Chung.  The leukemia is trying to make a comeback.  I have 20% blast cells showing in my marrow now, which is right on the borderline for being considered leukemia.  He discussed my options and still wants to try one more cycle of Vidasa chemo. During the first cycle I was "immunosuppressed", but I finished being tapered off of those drugs on Oct 31.  So during this cycle of Vidasa I will have my full immune system working to help fight off the leukemia.  If the chemo goes pretty well, I will get a booster of my brother's donor cells (called a DLI) shortly after finishing my 7 days of Vidasa and then see if it can take on the leukemia. 

Using Vidasa preserves the donor graft (ie, my brothers cells that have set up shop).  The next option is back to some cocktail of Induction chemo that wipes out everything and try for a transplant with an unrelated donor. That doesn't sound like much fun, and I would have the option to try a clinical trial instead.  But our motto is Step by Step, Day by Day, and that means that tomorrow is Day 1 of Vidasa and I don't need to be looking down the road too far.

The Dr. also took me off almost all restrictions as I am technically no longer "immunosuprressed".  In part because I think he wants me to enjoy things as much as possible, and for another part he wants my immune system to experience things and get fired up.  So Brant and I went out for dinner after I finished in clinic.  It was nothing fancy or exciting, but I did enjoy a fountain drink!! He headed back home to be with the kids which is so tough because he wants to stay in Richmond to be with me.  As much as I would like him by my side (we are such a team), I take comfort knowing that he is the one tucking in our kids at night and saying good morning to them before school.  If only he could clone himself!

Have I mentioned that I am really tired of being sick and weak?  The leukemia is causing me to have fevers and aches so I take Tylenol about once every 9-10 hours.  God gives us strength when we are at our weakest and my faith continues despite not knowing what His plans are or why I am on this path.  I believe in miracles and will continue to fight and be as strong as I can.  Your thoughts and prayers lift me up as always, thank you all for being my "army" on this journey,