Vidaza Days in Richmond

We are on Day 3 of my 8th round of Vidaza.  This is my first "maintenance" dose so we are only here for 5 days and I hope to be home by Friday afternoon! The knockout roses around the Coliseum are in bloom for our afternoon walks.  I just love to look at them.

My WBC count has been rising and today I was up to 2.2.  My platelets have been a little more sluggish and only got up to 68.  They were down to 56 today.  I would like to see them up above 100 again - that was nice.  My HgB (the red blood cells) have been 8.0 every day here in clinic.  That is what they transfuse me at, but I have pushed it off each day waiting for them to drop below 8.0.  It was really cool to see my blood type as B Pos on the lab sheet for my type and cross.  I guess I didn't fully believe I had switched to George, but looks like it has stuck.

I saw the Dr. today and discussed my biopsy results, which of course wasn't much.  The pathology summary statement was something like: the lack of bone marrow aspirate for.....special studies precludes additional evaluation, and it cannot be determined if the immature focus (cells I think) represent delayed bone marrow regeneration or residual acute leukemia.  There were a lot more words than that, but I didn't understand them...lol.  So I have to take away the good things from the report: they didn't find any obvious signs of leukemia and my chimerisms (% me vs % donor) are all 100% donor for what they could test. 

They are going to probably do my next biopsy with Interventional Radiology.  The doctor feels very confident I have aspirate somewhere....I couldn't be producing the blood counts that I have and I couldn't have switched to George's blood type if I didn't have it.  He just thinks either my bone structure, or too much chemo and too many biopsies have "relocated" it. So they will use a Cat Scan ( I think ) while they do the next biopsy to look for the aspirate and guide the needle.  I really don't care if they just put me out and find the stuff.  He didn't seem in too much of a rush to do one.  Great..... more waiting for info.  But the medical team seems happy with where I am at right now and they want to focus on getting my counts up and looking out for GVH.....not poking me for bone marrow.  The photopheresis is also on hold for now.  We will see where my counts are at the end of the week and I may come back next week or they may hold until my next cycle of Vidaza. 

My prednisone was reduced last week to 40mg per day and I have definitely started to feel it.  I am more like Supergirl now than Superwoman.  I have more days with less energy - especially after days when I have done more activity.  Yesterday was a high energy day and I used the elliptical for 10 mins here at the Hospitality House.  That was a new set of muscles since I have been doing the recumbant bike when I exercise at home.  I woke up today very tired and sore, then realized I was fever-achy.  I spiked up to 100.4 before taking Tylenol.  They did cultures and viral testing in clinic today, so I will know tomorrow or Friday if I have caught a bug.  But I really don't feel like it.  I was just tired today.  My fever never came back up and I hope it doesn't reappear tomorrow morning.  It seems like whenever I overexert myself and get sore, I get a temperature and achiness.  Not sure if that is what is going on.

I gotta mention what an awesome Mother's Day I had.  It was such a blessing that they pushed off my Vidaza a few days so I was at home instead of in Richmond.  The kids got up early and made me muffins...without any assistance or fires.  They brought me breakfast in bed.  You know you have "cancer kids" when they bring you your morning meds with breaksfast so you don't have to get up.  We went to the early service of church which wasn't too crowded and then Brant and the kids planted my summer flowers since I'm not supposed to dig in the dirt. I also got some new clothes in my "smaller" size for the summer. There were a few quiet hours at home alone in the evening to round out a perfect day.  Thanks so much Brant and kids!

Well, I better get ready for bed.  Only two more sleeps as they would say in Australia and then I can go home!

Photopheresis Fun

I had another nice week at home after returning last Wednesday from my biopsy.  They gave me the whole week off but I did go to the local oncologist on Monday to get my labs checked.  My white count creeped up from 0.6 to 0.8 and my platelets were rising from 32 up to 46.  Not very big increases, but at least we are headed in the right direction.

Mom and I headed out Wednesday morning - again early for an 8:30 appt and again with me feeling tired and not so energetic.  I think the prednisone gives me a false sense of energy and every few days my body says - "whoa! time to take it a little easy and rest."  It was Nurse Appreciation Week so we stopped at O'Doodle Doos to get two dozen (plus 1) donuts for the nurses.  I did not touch their stash for the 1-1/2 hour ride up.  Very impressive.

I headed over to the Apheresis clinic and got the same nurse that George had on his last day here in February.  I had to be consented by the Resident before beginning the procedure.  He explained the process a little bit more - take out a portion your blood, put it in a spinning machine to separate out the white cells, add some medicine that makes the blood sensitive to light, shine UV lasers thru the white cells, return blood to your system.  Repeat for 3-4 hours. I knew my white count was low, so I asked him how much this dropped your white count.  He wasn't sure...

So I got my labs drawn and they started me on the machine.  Fortunately the port I have installed on my left shoulder will work so no needle sticks in the arm.  The needle they use is VERY large and even with the port it was somewhat uncomfortable.  I felt very badly for George having TWO of these in his arms for two days.  I fell asleep pretty quickly only to be woke up in a hour when the nurse got my labs back and my white cell count was only 0.9.  Well, yeah, I could have told you it would be low. (My platelets were up again to 57 and my HgB was holding). Apparently you are supposed to have a white count of 2.0 or higher (preferred) or at least around 1.5.  This is both for safety and effectiveness.  Since they are treating the white cells, if there are none there, the treatment isn't really doing much.

So there was a flurry of activity and they paged one of the bone marrow doctors.  They went ahead and did the light treatment on what was in the chamber - it only took 10 minutes since there were so few cells.  Then they took me off the machine and cancelled me for Thursday.  Mom was highly annoyed since the whole mishap could have been avoided by several different people in the chain starting with my doctor last week and ending with my nurse that morning.  But it is not a perfect process for sure. 

I headed over to the bone marrow clinic and had a  quick visit with the doctor.  They will do the photopheresis when my counts come back up.  They seem to be a little sluggish this month and so the doctor took me off of the immunosuppressive drug and reduced my prednisone from 50mg to 40mg/day.  My liver numbers are all back in normal range, so hopefully they will stay there as the meds come down.  I am still scheduled to come back on Monday to start my lower dose of Vidaza chemo.  Oddly enough, my counts tend to be the highest the week of and one week after chemo, then they fall for 1-1/2 weeks before starting to climb back up.  They should get high enough to do photopheresis later in the month.

So we gathered our things from the Hospitality House (mom had already unloaded for our overnight) and headed back home.  I have been a little less energectic and had a lot of muscle and bone pain Wednesday night.  I have been exercising both doing the recumbent bike and some light strength training (at home since my counts are still low).  So I don't know if it is soreness from that, or maybe my bone marrow getting busy making cells because that tends to cause aches, too.  They will check me on Monday for graft vs host of the muscles which can happen as well.  It has been a little better and Tylenol works well to keep the discomfort down.

I am looking forward to the weekend even though it will be HOT.  I like heat and am so tired of being cold.  Happy early Mother's Day to all of you moms out there.  I hope you get spoiled rotten!!  I so remember last Mother's Day of being in the hospital.  My doctor came in for rounds and casually mentioned that my biopsy showed empty bone marrow with no leukemia present.  It was such an exciting day and my first good results in this whole process.  But I will enjoy even more this year of being at home with my kids where a mom is supposed to be!

Disappointing Biopsy

After several days of feeling great and having lots of energy (prednisone) I was nervous about my biopsy appointment on Wednesday.  I woke up feeling not so good.  We had to leave earlier than usual for an 8:30 appointment.  I did manage to get in a donut on the way which made me feel a little better.  At clinic I had a low temperature of 99.7 which is probably why I felt kinda bad.  Amazingly my weight was about the same despite my new appetite.  They had to wait for my lab results before I could do my biopsy.  My platelets came up slightly from 22 to 31 which was good.  My WBCs fell a lot though, down from being over 2.0 to 0.6.  I have been tracking my counts and I had this kind of drop last month after Vidaza chemo, but still it was disappointing.  I had hoped maybe my bone marrow would be stronger and get thru things this month.

So the biopsy didn't go well.  Even though they have the best guy who does the procedures, he couldn't find any aspirate.  That is the liquid material in the spongy part of the bone.  He tried 5 spots...after giving me 50 mg of extra phentonol...so the pain wasn't too bad, but I was in tears from disappointment.  I knew that it meant I won't get any results about blasts or whether they see leukemia.....so more weeks of unknown.  It also means my bone marrow is very empty again.

The doctor came to see me and was very sympathetic.  They have so much to try to balance - fighting leukemia with chemo, backing down the graft vs host with prednisone, and trying to build up my bone marrow.  Of course,  treatments for one of these usually means making the other two worse.  They have decided to focus on building up my bone marrow for now.  So I will start photo-pheresis next week to control the graft vs host.  This will allow them to take me off the prednisone and immunosuppressant drugs which are suppressing my bone marrow and limiting the ability of my new immune system to attack leukemia.  They are also switching me to a maintenance level of chemo (still Vidaza).  It will only be half the intensity and for 5 days instead of 7.  It will be less effective at killing leukemia, but it will not hit my marrow so hard.  They are delaying my next treatment a week to give my marrow some extra time to build back up.  They would like to give me more of George's cells, but because of the liver response last time, they are going to wait and see how the other things work.  I don't know too much about photo-pheresis yet.  It is for two days a month for a year.  I sit in a chair for about 4-5 hours each day while they pull my blood out of the port, run it through a special light that kills specific t-cells that cause GVH, and then put it back into the port.  It will be in the same place where George did his stem cell collection.  I go next Wednesday and Thursday for my first treatment.  It is a fairly new treatment method and I think I will actually be part of a clinical trial.

So it was a very long and emotional day.  I also needed a blood transfusion and I just had one 9 days earlier.  But on the way home we hit Steak and Shake, and a good milkshake seemed to make things a little better.  Plus mom, who was upset herself, is always such a good encourager. I think I am pretty well over the disappointment now.  My energy was right back on Thursday and I have been insanely busy again for the last several days. There has been much work done around the house.  I enjoyed a night with some girlfriends at home on Friday.  We went down to the beach today and walked on the boardwalk.  It was chilly but a beautiful day and way to get my walking done!

My family got me a new exercise bike/elliptical as a one year gift so I can do my cardio at home.  No one seems too excited about me going to the gym, especially with my counts low again.  Brant and I talked today and he encouraged me to back it down a few notches.  The prednisone has me feeling like I am normal (or a little super human) and I am doing and eating normal things, but I really shouldn't be pushing the limits so much.  So I am going to try to get back into a more cautious mode again even though I want to do like 10,000 different projects.  It is exhausting for him to just listen to me.....ha!  I wonder what my energy will be like when I come back off the prednisone....?

It is late and I should get off to bed.  Thanks for keeping me in your thoughts and prayers.

One Year Anniversary

It is hard to believe that one year ago we walked thru the doors of the Massey Cancer Center Bone Marrow Transplant clinic and were in a hospital room that night.  What a blur it all was - less than two weeks between when I first felt sick (weak) and having to choose where to receive treatment for a disease I didn't really even understand.  We were so scared, confused, anxious....you name it. Yet now we have gone thru an entire calendar year of holidays and milestones, of tears and of celebrations.  Although I am not free of this disease as I had hoped, I am so thankful to be sitting here at home typing this in relatively good health.  If you look at the statistics for secondary AML (which I do not recommend), I am a major success at being a 1 year OS (overall survival) data point.  Next goal: 2 year DF (disease free) data point.


I am so glad we chose VCU.   It was tough to know what to do.  People said Duke or Hopkins, we also considered going back to Sloan Kettering in NYC where I was treated in 2007.  But Richmond seemed to fit.  The team of four doctors has been wonderful and I feel like my case is handled with more individuality than at a larger center.  The nurses are like our extended family, and the other patients really form friendships with you as we keep up with each other's progress.  Virginia is fortunate to have such a good cancer center available to us - I just wish it could be in Hampton Roads!!  We do know I-64 very well by now!


I am still having a good week.  The prednisone is causing me lots of water gain so I feel like I have elephant legs and feet.  They called yesterday and reduced my dose some, hopefully at clinic tomorrow I will be reduced even more.  I can't sleep very well and you probably don't want to get in a conversation with me right now as I am totally wired.  Another exciting tidbit is that my blood type has officially switched over - I am now a male B+ blood type thanks to George's cells taking over completely.  It took a while, but we are getting there.


Why is it so hard to believe in miracles??  As we approach next week's biopsy I am so hopeful that it will show good strong marrow and no signs of leukemia.  We pray for this daily. We tell God that we know and trust he can do anything - beat the odds, make it happen when science says it can't.  I have been feeling so good and all of the signs are pointing that way. Yet I find myself still full of fear and scared to let myself believe it could actually happen.  It's like it is easier to trust when things are looking bad than to believe when things are looking good.  I have images of God being a tad bit exasperated with me...."You've been asking.....did you think I wasn't listening?".  Anyway, I will quit rambling, I just find it odd that sometimes I am most scared when things are going most well.


Here's to the start of another year!

An Awesome Easter Weekend

After getting back from Richmond on Tuesday I was pretty wiped out. The couch and my electric blanket with Max the Cat at my feet was most of my day on both Wed and Thurs. The kids were on Spring Break so there was still a fair bit of running around and fixing food and cleaning up, but it was a struggle. I had some tears just being so tired of the whole unending process.

Then Friday I woke up with energy - I think the steroids have kicked in - who knows. Chris had a volleyball tournament in Richmond on Saturday so we went up to VCU clinic Friday afternoon and spent the night in Richmond. My counts were still good and I didn't need anything at clinic. We had a nice time going out to dinner - food is definitely my new hobby. On Saturday we were at the gym most of the day - the boys did great and I had a nice time talking with the parents and watching them play. We made it home late Saturday evening after a fun dinner with our friends in Richmond. Poor Brant had to drive us home while we all relaxed in the car.

Sunday we were able to go to church. I am still a little apprehensive around crowds and Easter is definitely not a slow day at church! But it is one of my favorite holidays with so much hope and promise for the start of a new year (winter is part of last year in my opinion!!) and of course celebrating the Greatest gift the world has received. So we threw the gang together Sunday morning and our friends held us some nice seats together in the back. The music was wonderful and one song "I'm Free" just really resonated with me. I have felt so trapped by this disease lately, especially when my energy is low I get depressed and just want to be DONE WITH IT!! But on Sunday as we sang that song, I truly felt free of it - whether it was there or not. I could enjoy right now, being together, worshipping with our church, feeling strong enough to stand up the entire music time (which is no small feat!!). Anyway, it was just wonderful and I was very happy. Here is our impromptu Easter family pic.

Later we had a nice meal and visited at my parents with Ruth and then for dinner had an awesome time at Brant's cousin's house with his family. We didn't get home until almost 9pm but I wasn't exhausted. My belly was full (did I mention I like food these days??) and I was ready for a good night's sleep. So I had a great weekend.

Today my energy level has continued to be high. I definitely think it is the prednisone steroids. My lips are slowly disappearing into my fattening cheeks (steroid face). Mom thinks it is nice, I hate it. We went up to clinic together today and it was a LONG day. They were very backed up and I needed a blood transfusion. It has been three weeks since my last one so that is really good. Mom and I didn't make it home until almost 6pm but at least the sun decided to come out and the drive wasn't too bad. I will go back on Friday and see the Doctor. My goal is to get off prednisone, although I am sure the best I will get is to have it lowered some. My liver is almost back to normal, but they will most likely taper me to prevent a flare-up.

Next Wednesday is biopsy and seeing the cardiologist. Again, I hope to talk them out of some drugs. But it just seems like when they put me on something and it works, they are SLOW to take it back away. We are eager to hear biopsy results. My wish is that they become more definitive and show that the leukemia is not around. But you just never know what they are going to see.

Well, I better go find something to do with all of this energy. Eating donuts is on the top of my list, but I am trying to be good. My tastebuds have lost the salty/savory sensation and apparently tripled in the sugar area. Bummer. I have put back on about 5 lbs which is good. I think I will start trying to go to the gym and work on building those muscles up. The doctor said I could go if it was the middle of the day and if I cleaned off the equipment really well.

That's the update from here. Hope everyone has a good week.

Finishing Up Round 7 of Chemo in Richmond

Tomorrow is my last day of Vidaza chemo for this month and hopefully I will be going home for my three weeks off (except for day trips for clinic checks). The week started with me being very weak and feeling bad. But the drugs they have put me on have really dropped my liver enzymes and I am almost back to normal levels. I will continue to stay on the drugs for a while to make sure this flare-up of Graft vs Host (GVH) does not come back. My heart rate has also dropped back to normal and I am hoping I can lose a cardio drug after seeing the cardiologist in a few weeks. I counted up my pills and I take about 32 a day - yuck. There are several of the same kind, but it is still a pain getting them all down!

I will not get a boost of donor cells this month as previously planned because they don't want to cause any more GVH right now. The cells I got from George back in February still seem to be working strong!

My blood counts have been really good lately so I am hopeful that the bone marrow is regenerating. I haven't had any transfusions in quite a while. Even my Hgb seems to be staying up on its own which has not happened since my transplant last year. I still expect my counts to drop a little here in a week or so from the effects of the Vidaza chemo, but hopefully they will bounce back before long.

I have a biopsy scheduled in about two more weeks. I am anxious to see if the blasts are still there. It is tough living from biopsy to biopsy....especially when the results aren't all that conclusive. But as mom says, I am here to enjoy another day and we just have to go with it.

The predinisone steroid they have put me on has really increased my appetite - especailly for SWEETS!! But I haven't really put on much weight because all of the new meds still seem to have my intestinal tract tore up. But in general, I am feeling better now than when I arrived here last Wednesday. When I lay down I feel like I could sleep all day, but if I get up (or am kicked out by mom) I find a little energy. We have taken a few outings to get out and stretch my legs. My muscles are really weak and I know I should be exercising more but my motivation is low. It would be nice to have a trainer or therapist come over and just tell me what to do, but that is one more thing to deal with and I really do know how to exercise - I just need to do it!

I am excited to get home tomorrow and see Brant and the kids. It will be nice to get back into the family things. It has seemed like a long week away from home. But we have had a nice stay and I am grateful for all that the nurses and doctors are doing to get me better.

A Rollercoaster Week & Living in Limbo

My biopsy went well last Monday without too much pain. Ruth and I had a nice trip up to Richmond. We had to wait some extra time because my Hgb was down to 7.3 and they waited to send my type & screen until after my labs were back which took forever. My labs were wacky in that my platelets went way up, but my WBCs plummeted. That was a little discouraging. So an hour wait for the type, then 2-1/2 hours to transfuse the blood, after getting the biopsy.... It was a long day! Maybe it was the fentonol, but I was in a good mood and chatted with several of my transplant friends. We did make it home by 5pm. On Tues it was such a pretty day I went walking twice around the block with a friend. But thru the rest of the week my energy seemed to drop.

On Friday Brant took me up to Richmond for a clinic check and preliminary biopsy results. My WBCs continued to drop, but my Hgb held and platelets went up. I was a little concerned when we got put in a consult room instead of an exam room. The Dr. came in to say that my blasts were at 60% after being <5% (normal) at my last biopsy. The doctor seemed as surprised as us with the results which the pathologist deemed as a major relapse of leukemia. He suspected maybe something else was going on since my counts in general were rising, and my bone marrow is now 100% donor which is a good thing. Last time there was about 17% of my stuff still lurking around. He ordered extra slide stains and said we would just have to wait and see. So it was a long weekend and we opted to not say much to the kids or update the blog since we didn't really know what was going on.

Over the weekend I got weaker and weaker. It is frustrating when you just want to get up and do stuff. I'm sure some of it was the mental load on us as well. I did enjoy sitting and watching Chris' volleyball tournament on Saturday. By Sunday I was so weak I made an appt in Richmond for Monday thinking I surely needed blood...plus I wanted to see if any more results came back.

Monday Mom took me back up to Richmond. I had lost 5 lbs over the weekend...not good. My Hgb was fine but I found out my liver enzymes have skyrocketed and they are thinking Graft vs Host where the donor cells are attacking my liver. They sent me home after stopping one med (again, I needed no repletions which is a good thing), but I wasn't happy at how cruddy I felt. I was due back on Wed to start my chemo and they will see then what my liver is doing.

On Tuesday, the Dr. called me twice to report that my additional tests, including the FISH and cytogenetics, had come back with no signs of Leukemia. This was pretty exciting. He thinks the blasts are my donor cells trying to make some new marrow, which is still pretty sparse, but a little better than last biopsy. It isn't a traditional way of seeing things, but since when have I been normal??? They will biopsy me again in a few weeks to see what all those blasts have done.... Hopefully grown into normal blood cells. The doctor still feels that the weakness and fatigue are a result of possible GVH of the liver. Even though I was still pretty weak I enjoyed watching Katie's volleyball match and passed out the team shirts. Don't even ask me how I got suckered into that one, but to her credit Katie did the majority of the work. I woke up the next day with sore triceps from folding the shirts while holding them up. Guess I haven't used those muscles in a while!

So today I am back at MCV for a week of chemo.... Just what I want to start when feeling like dirt...lol. My liver enzymes almost doubled since Monday and my blood pressure was below 90. So it has been a busy day. I got fluids to plump me up, but again didn't need blood or platelets and my WBCs are starting to rise. The doctors decided to jump on the liver issue as though it is GVH without doing a biopsy since that is kind of invasive. I have a liver ultrasound tomorrow to rule out leukemia or infection in the liver. I have started a steroid, an IV anti fungal, and a mild immunosuupressant to beat back the donor cells a bit but hopefully not interfere with them keeping the leukemia away. And of course they are going to suck lots more vials of blood out of me to run more tests. We may make it back to the Hospitality House by 7:00pm - ha ha! But mom did say we got a sweet corner room with two beds (no cot for mom!) and a desk - wow! We must have hit the Platinum level based on our number of stays.

So that's the news from here. Lots of stuff going on, some sounds good, some may be a little scary. But it is always good to hear they don't see any leukemia. Hopefully treating my liver issues will get some of that energy back. One day at a time.... One prayer at a time.