Past Day 30....

Well Day 30 came and went yesterday without much fanfare, but it is a significant milestone.  I am thankful that there have been no fevers, infections, etc thus far.  I realize things can always change tomorrow, but it is nice to have made it to this point with only the annoyance of nausea, loss of appetite, and fatigue.  My white blood cells have been trending up the last few days - I hit 2.7 yesterday and was 2.4 today. They will fluctuate and that is normal.

I had my Day 30 biopsy on Thursday.  It went fairly well.  They are testing out a new drill to replace the hand auger method.  I allowed them to use it on me since it didn't seem like it could be much different.  But I was a little startled when it sounded like he was working on a deck. Guess I wasn't thinking that a drill would come with drill sounds!! Duh.  I think it is probably just a Black&Decker that they made in white and jacked the price up a kazillion dollars.  The biopsy results probably won't be available until Tuesday because of the holiday weekend.  I will post as soon as I know something

Funny mom story - On Thursday we headed into the infusion room which has about 10 recliners for patients getting treatment and a little chair next to each for a caregiver/visitor.  Mom barely had time to set her stuff down before she started making rounds to say good morning to everyone, check on those she knew, meet those she didn't, etc.  I mumbled something about mom thinking she was the official greeter in the room.  Next to me was a guy sound asleep under his blanket.  As mom came back to my chair, the nurse asked her with a completely straight face - "I can wake him up if you need to talk with him"  We all laughed so hard.  The nurses are so funny and upbeat. It is good to get a laugh in like that at least once each day.

I had a visit today from a friend in Blacksburg, and it was so nice to chat.  It is great that Richmond is along the route between the beaches and the Burg!  It has allowed me to see a few friends.  I also have to send a big THANK-YOU to my co-workers in Salem that sent a check because they wanted to help pay for George's plane ticket.  You guys are awesome and have really been a great support.  Thank you so much!!

Brant is busy getting ready for the first day of school with the kids. They will be up tomorrow to visit - YEAH!!  I think he has the hardest job of all, especially with starting a new job at the same time as being a single dad.  You are truly awesome Brant and I love you!!  Good luck the next few weeks!  Thanks so much to our friends who have dropped off meals, included our kids in stuff, and given them rides when Brant couldn't be in three places at once.  My sister, especially, has been toting them all over the greater Hampton Roads area!!  Thanks everyone.  We could not travel this road alone.

Day +27

There is not a lot new to report from our little homestead here in Richmond.  Unfortunately my white blood cell count drifted down to around 2.0 and has fallen further to 1.7.  My platelets are hanging in there at 115 and my Hemoglobin floats around the 8.5 mark.  But it was 8.1 this morning so I am guessing I will have a transfusion tomorrow if it drifts any lower because they like to keep you above 8.0.  My white blood cell count when I left the hospital was a bit higher but that was because I had been given a growth factor that artificially bumps up WBC production.  I have been feeling worried about my lagging blood counts, but I saw Dr. Chung today and he is happy with where I am at and can see that there are a lot of precursor cells in the pipeline.  I have a bone marrow biopsy on Thursday and that will allow the doctors to see even better what is going on.  I also had a follow-up with the cardiologist today and he thinks I am doing well.

We head to clinic every morning.  I have not had a day off since I left the hospital, so it is nice we are close.  We walk most days now to get a little exercise.  My electrolyte levels seems to be improving, but they are working to get my cyclosporine levels correct.  Apparently this will be an ongoing process.  Cyclosporine is the immunosuppressant drug that keeps the donor marrow "under control" for a while as it gets settled into my system.  Too much of the drug is hard on my kidneys and keeps the donor from "setting up shop".  Too little of the drug and the donor system can go crazy and start attacking me - GVHD.  I think we are getting close to having it at a good level so maybe I will get a day off soon.

They do keep a really close eye on you here.  I get daily labs as well as weekly chest x-rays and blood cultures to watch for anything that might be brewing.  The nurses are on top of any symptoms you tell them about.  You see a Dr. or Nurse Practitioner at least weekly.  And the pharmacist meets with you frequently as well.  By all accounts I am doing well at this point.  My stomach is still not a friend to me, but I eat because I know that is necessary for recovery.  Mom does a great job of trying to find things I will like and that are good for me.....and that meet the ridiculously strict dietary restrictions they give you post-transplant.

The kids and Brant try to make it up most weekends which is great.  Last Sunday Katie was dropped off by some of our Blacksburg friends heading home and I had almost the whole day with her.  That was a lot of fun.  I am looking forward to this weekend and a nice visit from Brant and the kids.  I am bummed that I will be missing the first day of school, but Brant has promised to take pictures for me.

Hope everyone is enjoying their end of summer - or is looking forward to spring for my Australian family!!

Sista Support!

I would have updated this earlier in the evening, but first I had to refill my pill container for the week and that took some time!!!  I have one of those really big ones - 7days x four times a day.  I don't really want to count the pills, but it is between 20 and 25 each day....fun!  If I am working on an honorary PhD in oncology, I have to also be headed for a minor in pharmacy.

Mom went home Wednesday night for a little R&R (actually she probably worked harder down there catching up on stuff and doing the Food Pantry at church).   So my sister was up here to be the "caregiver".  It has been fun and she has done a good job.  Today when I got out of clinic, we packed up our lunch and had a little picnic in the shade on the Capitol grounds.  It was very nice weather and a good change of scenery!

Medically I am doing ok.  I don't feel awesome, but I keep my food and pills down, and seem to have pretty good strength.  It is nerve-wracking wondering if I am developing GVHD symptoms of if maybe I have picked up a bug or something.  Going to clinic each day is a bit tedious.  But the nurses are friendly and we have a regular crew in there getting our various fluids.  I am still a potassium, magnesium, saline fluid kind of client. Although yesterday my Hemoglobin had dropped and I got a unit of blood. This morning I had my weekly chest xray, so that was something different.

Today marks 4 months since we first found out it was Leukemia.  I was at work that morning and had a call around 3pm and left to meet Brant.  Since the kids were already home from school, we talked in the Panera Bread parking lot and drove around Blacksburg....funny what you remember.  Since then I have had 59 nights in the hospital, 40 nights at home, and 24 nights in the Hospitality House.  It has gone by so slowly, but it amazes me that we are already at the 4 month mark.  Just gotta keep plugging along and saying those prayers that slowly but surely I will be healthy again and back with my family.

Day +18

You can tell when I don't have much clever to write about because my title is just my "Day" post transplant.  It is funny in clinic, though, because it is the first question most people ask..."So, what day are you?"  One guy pins a little piece of construction paper on the front of his hat announcing his day.  Guess he got tired of being asked, or maybe he is just really happy for each day....as we all are.

We are settling in pretty well post-hospital.  We report to the clinic at 9 am each morning where they draw labs to check my blood counts and electrolytes.  Then I go over to the transfusion room where they give me repletions for anything that is low.  You pretty much see the same folks every day who are recent transplanters plus a few others that mix in and out but aren't on the daily routine.  My blood count levels have been good, but I get magnesium, potassium, and a bag of fluid each day.  We are usually out of there by 1pm.  They have really nice recliners and heated blankets to try to make your stay as pleasant as possible.  And of course very nice nurses, too!

Back at the Hospitality House, mom is working to keep me drinking and eating enough.  My stomach/appetite still hasn't returned to normal and nothing tastes any good.  Based on conversations with other transplant patients, it may be a while. But it is still good to have access to a wider variety of foods.  Today my sister Ruth came up to visit and fixed a delicious (I think) roasted chicken.  It was like having Sunday dinner together.  Yesterday Brant and Chris visited.  We had fun playing pool down in the lobby area and ordered pizza for them.  I had a pre-packaged frozen meal...yum yum! Katie is finally back home today from her big trip and I can't wait to see her when the kids visit next.

I have been pretty homesick but appreciate all of the comments, mail, email, texts, facebook, etc support that I receive to encourage me to be strong and keep fighting.  I really have to focus on the Step by Step, Day by Day attitude and have faith that God will see us through...even if it does feel like forever!!!

Discharged!!

As predicted, the doctors released me yesterday on Day +14.  Of course, I didn't go very far, just about 8 blocks down the street to the Hospitality House.  It worked out great that my dad was up to attend the Caregiver Class with my mom that morning, and he was able to get me moved over and settled that afternoon.  Mom said the Caregiver Class will scare you about everything you have to do to avoid infections/complications.  But it was good information.

We are settled into our new room.  It isn't much bigger than the hospital room, but at least I can get out and about.  A mask must always be on when I am outside my room or the clinic, so I feel somewhat like a candy store robber when I wear my pink hat and hoodie combo along with the mask.  We may look for a little larger place to hang out in Richmond as time goes on, but since I have to be at clinic everyday right now, this place seems the most convenient.

The first 100 days for a transplant patient are most critical.  I am very nervous about what can happen, especially graft vs host disease (GVHD).  I already have a little of it with a rash on my palms and soles of my feet.  This is apparently pretty typical and they just want me to put steroid cream on the area.  I try to remind myself that they want to see some GVHD and it doesn't mean I will progress into the scarier stuff. 

My stomach is a little better today but my mouth and tastebuds are still gone.  I did enjoy some fresh cucumbers and tomatoes tonight.  They were super well scrubbed by mom.  I am not even allowed to handle fresh fruit or vegetables until they have been washed.  Like I said, the restrictions to avoid infection are a bit extreme.....

I leave you with the Top 5 for being out of the hospital:

5.  No vital signs at midnight and 4am
4.  Showers without Gertrude the IV pole
3.  Walking without Gertrude the IV pole
2.  Don't have to measure input and output (you will know what this is if you have had to do it!!!)
1.  No More Hospital Food

Day +13

Yesterday and today have been a little challenging as I have not felt very good.  It is hard to say exactly what is wrong, I guess just a general blechy feeling as if I had chemo.  Oh yeah, I did, but I thought I was past those feelings.  Today was a little better and maybe tomorrow will be an improvement as well.  My appetite is gone and I have a very metallic taste in my mouth. Extra napping has been on the daily agenda.

But medically I continue to improve.  My WBC count is 4.8 this evening which is very good.  My platelets are above 100 and hemoglobin is 8.7.  So I am no longer receiving transfusions.  What a relief to get those steroids out of my system!!  Today they took me off almost all of my IV meds and gave them in pill form.  Several of my antibiotics were also stopped.  They are saying I may get discharged tomorrow if I do well thru the night and don't spike any fevers. That is crazy that I could be out of here on Day 14!! . Everyone comments on how well I am doing....just wish I kinda felt that way. When I get discharged I will be right down the street and be spending most of my days in the clinic.  But I am thinking a little fresh air, sunshine, and non-hospital food will help how I am feeling.

I have enjoyed following Brant and Katie up at Cooperstown this week while she is playing baseball with her team at the Cooperstown Dreams Park.  Two of her six games are televised via the internet and she hit one over the fence while I was watching!!  It was really special.  I wish we could all be there together, but I'm glad they were still able to make the trip.  Chris has been hanging out back home with my sister and she brought him up for a visit which was wonderful!  I have been pretty homesick lately and really enjoy every chance I get to see Brant and the kids.

Some Pain....Much Gain

Yesterday and today I had severe pain in my lower back.  I have had bone and joint pain before but this was something else.  We worked thru several pain meds without much luck but I did get some relief during the night and again this afternoon  - both times after receiving platelets.  They think maybe the Benadryl helped.  The good news is that everyone thinks the pain is from the engraftment process of George's stem cells kicking into gear.  And it appears they are right because in just 1-1/2 days my white blood cells jumped from 0.2 to 1.3 to 3.4 this evening!  And my platelets went from 10 to 20 to 101!!  Woo hoo!  They are starting to use the "D" word - discharge.  Maybe later this week.  But I will continue to be patient.  George has given me the charge to commit to a "Year of Boring" in order to not waste this opportunity by taking any unnecessary risks.  So that has become my mindset and I will not push to get out of this joint any sooner than the docs are ready.

Day 8 - Doing Well

I wouldn't say that the days are flying by, but it is a lot nicer to see Day +8 on my whiteboard instead of Day +1.  Plus, I am feeling much better so I can endure the time easier.  My blood counts have continued to drop as expected from the chemo treatments I received.  I haven't had any white blood cells since Day 1, but now the platelets and red blood cells are pretty much gone, too,  so I have blood and platelet transfusions often.  Since I have reacted to the platelets with hives, I get a lovely dose of Benadryl and steroids before each transfusion.  I do not like the doped up drowsy feeling, but I guess it beats being covered in itchy welts!  I hope that my new stem cells are busy at work and we will see a glimmer of new life here in the next few days.

My heart rate has dropped pretty low over the last few days.  It could be from all of the Benadryl or maybe one of the other meds.  I was just thinking that maybe my inner Olympic athlete was shining thru, but the med team doesn't seem to agree.  So they are keeping an eye on that.  I have started exercising on my bike again and trying to do some gentle strength and stretching moves.  That is really supposed to help with recovery.  Of course, I do still get my fair share of naps. 

George will be leaving on Saturday.  It will be sad to see him go but I know Davina and the kids will be so glad to have him home.  A month is a long time to be gone and we all truly appreciate the gifts of time, love, and stem cells that have been given.  Most of you may have seen it on Facebook, but I got us a pair of matching hats for our Donor/Survivor status.  Thank you George, and safe travels!!  I look forward to seeing you one last time tomorrow before you leave.

Gertrude ver4.0

Things are picking up a little for me.  I haven't spiked a fever in two nights and my nausea is getting better.  I ate enough today to avoid going on IV nutrition.  Not sure why the thought of that bothers me, but it just seems unnatural.  It must be better to get calories from Oreos, and not a bag of goo.

So today's post is dedicated to my new friend - Gertrude version 4.0.  The other day my pole almost tipped over because it only had four "feet".  So I asked if it could be upgraded to one with five or more feet.  This was also a big deal for mom - Nurse Safety Police - who couldn't stand that I had a "four-footed" IV pole.  They wheeled out a new pole.  It has six feet - safety issue addressed.  But it is also a mammoth of a IV pole.  This baby has double uprights and a crossbar, plus it's own little caddy tray.  It should have an oversized load permit to roll down the halls, and it seriously takes up half the floor space in the bathroom.  On the bright side, I have more room to hang my "bling" and I am considering the possibility of selling advertising space on the uprights.  Gatorade should be interested.

Other news - it has been a nice few days with company helping make the time pass.  Brant and the kids were here Friday. Dad and my sister Ruth came yesterday.  And today my Uncle and Aunt from Florida visited along with my brother.  Everyone (including mom!!) headed home to Portsmouth tonight to spend a little time together before George has to leave for Australia.  I am so happy mom is ok to leave me for a day or two.  The nurses here are really great and I can survive.  But it is certainly nice that I don't have to do it very much. 

Day +3, Creepin'....

I never really liked or understood that Eric Church song "Creepin'" when it was popular, but it now has new meaning for me....lol.  Although time is passing slowly, we are making progress.  My fevers are not quite as severe.  They have put me on some heavy duty antibiotics and they appear to be keeping any infections at bay.  The allergy testing I had done before admission has already paid off since they have used two antibiotics that I was flagged as being allergic to.  So far no rashes either - yeah!  I also got a rather painful 3 month birth control shot today - like that was really critical....ha.  Actually, it is just to prevent any bleeding since I will have low blood counts for quite a while.

My energy is coming up a little but my stomach issues and nausea keep me feeling less than spunky.  I have been approved to receive IV nutrition if needed, but so far I am keeping down enough Gatorade, pretzels, crackers, and soup to not require it.  I am pretty sure I may never eat dry cheerios and drink Gatorade again in my life.  The exception for the Gatorade would be if I could drink it while playing in a beach volleyball tournament.

My white blood cell count is pretty much zero.  According to the "plan", right now George's stem cells should be setting up shop and making some new blood cells in my bone marrow.  This takes a little time and they expect my white cell count to start rising around Day 11-12.  Once his cells start showing up in my bloodstream, the next phase is "training" them to behave in my body.  Most of that will be done on an outpatient basis.

We had a minor crisis today when the iPad quit working.  Mom has become such a pro on that thing. You would not believe how her hunt and peck technique on the touch screen has evolved over the last three months!!  So it was with great relief when the thing mysteriously turned back on, and all is well in our hospital room again.

Have a nice weekend everyone - enjoy your families!

Day +1....You gotta start somewhere!

Yesterday was Transplant Day, also known as Day 0.  I survived it with less fanfare than expected.  My yucky days have extended since Sunday so there just wasn't any energy to get on the party heels and celebrate.  But that is ok.  The stems cells transfused well and should be finding their way into my bone marrow as we speak.  Now it is just a waiting game to let everything grow and recover.

I have still been very weak and not eating much.  I am spiking a fever which leaves me wiped out.  I have had blood cultures and a chest x-ray, but so far they have not found anything to be too much of a concern.  The Tylenol works to keep the fever at bay and I have walked the halls a little when I have the energy.

But I am anxious to start feeling a little better.  The days go by very slowly when you are feeling sick.  The staff here on the Transplant Floor are encouraging, and I appreciate the many thoughts and prayers sent my way. You all are in my prayers as well - I thank God for such an awesome support network!