Still Low Blood Counts

My sluggish bone marrow is once again taking its time to start making those blood cells.  I thought maybe the recovery would be a bit quicker for consolidation chemo versus induction chemo but it seems to be about the same.  At least I am not in the hospital this time.  We have spent each day this week in the clinic for a blood work check and then getting transfusions.  On Monday I had platelets with the bad reaction.  On Tuesday I got red blood cells with no reaction.  Yesterday I got blood cells and platelets, and today I got platelets - both days with no reaction - yippee!  My platelets (the cells that help with blood clotting) have been below 5 for almost a week now and it is kind of nerve wracking to me.  In addition to my petechiae spots all over, my gums are bleeding some and I bruise very easily.  Hopefully they will start trending up soon, or maybe I will get a transfusion of platelets that "stick" around for a little while.

But I am very happy about not having another reaction.  They really dope me up with pre-meds now.  I get IV Benadryl, Pepcid, and Solu-medrol before receiving platelets.  The solu-medrol is a steroid and has done a number on my appetite.  There is a package of Oreos quivering in fear over in the corner of the room.  I know they are reduced fat but does that really matter when you eat like 15 of them???

This evening we had another volunteer group bring dinner to the Hospitality House.  It was quite a spread with bar-b-que, chicken, jambalaya, and lots of sides.  It is nice to have an appetite and enjoy eating again.  At this rate I should gain back all the weight I lost last month!!  We are so grateful to these various church and civic groups that come out and bring a dinner for the Hospitality House guests.  We probably have at least one a week and it is such a blessing.

One of the hawks showed up early this morning shrieking loudly from the vent stack. This time I had my real camera ready.   I posted several pictures on Facebook and have decided in my expert internet training that it is a Red-Tailed Hawk.  Pretty safe guess since that is the most common hawk around.

That's about all the excitement from around here.  Just patiently waiting to have some higher blood count numbers and be able to go home for a few weeks!!!

Weekend Pass

As expected, my blood counts have continued to drop after finishing the chemo.  I had labs done last week and my Hemoglobin was 7.1 and platelets had dropped from 93 on Tues to 33 on Thursday.  I asked if we could go home for the weekend and be back for my next visit scheduled for Monday.  Even though counts were likely to continue to fall, the Dr. was ok with some R&R after giving me a transfusion of Red Blood Cells.  He just wanted me to be extra careful.

So a BIG THANKS to mom for driving me home to Blacksburg knowing that my counts would be getting lower.  I was either going to sit around in Richmond or sit around in Blacksburg.  She kinda prefers having the MCV hospital down the street!!  I think I behaved very well.  It was great to surprise the kids Friday afternoon when I arrived.  They had no idea.  I was able to see Chris off to soccer camp and go to a softball scrimmage and game with Katie.  Brant and I also enjoyed a short visit with friends out on their deck under the super moon.  But mostly I rested around the house and enjoyed sleeping in my own bed.

I did wake up with petechiae on Saturday - I figured you all would like a fancy new word like petechiae.  It can occur when the tiny blood vessels under your skin spontaneously erupt due to low platelets. Platelets are what help the blood clot.  Petechiae looks like red spots on your skin and for me it typically occurs when my platelets drop below 5.  I paged the Dr. on call to see if I should go to an ER for a transfusion.  He said I could if I wanted to, but that I should be fine until Monday.  We opted to stay away from sharp objects and wait until Monday.

Today I arrived for labs at around 9am which was a very busy time on a Monday. My counts were low...I am probably at my nadir (another fancy word meaning your lowest point before the blood cells start to recover).  My platelets were below 5 and my Hemoglobin was 7.0.  White blood cells are at 0.4 which isn't even high enough to report my neutrophils.  I was sent back to the treatment area for two units of platelets and a bag of red blood cells.  I had a reaction to the platelets - hives! I welted up all over my torso, arms and legs. It was very uncomfortable and itchy.  I had IV Benadryl, two doses of a steroid solu-medrol, and then lastly an IV dose of pepsid.  Apparently pepsid has antihistamine properties useful for more than just gastric problems.  They got in my two units of platelets and got the hives under control.  But by then it was 5pm and we decided to wait until tomorrow for the blood transfusion.  I am praying there is no reaction to it in the morning.

I was very disappointed that the hawks have left.  Last week I enjoyed watching two of them who spent lots of time around that vent stack.  I wonder if they had a young one that left.  One of the other guests said they saw a third bird that was smaller over at the park.  By Friday they weren't on the roof top nearly as often, so I wasn't too surprised on Sunday to not see them.  But they were fun entertainment.  Oh well...guess I will just go watch another episode of Downton Abbey with mom.  We are getting into Season 3 and will be so bummed when we are done!

Fire Alarms and Urban Wildlife

Richmond has been a pretty exciting place since I left the hospital on Sunday afternoon.  I finished up my last chemo dose and then headed off to the Hospitality House (HH) a few blocks down Marshall Street to start my recovery.  The HH is an old hotel that has been renovated and is run as a non-profit place for out-of-town patients and families to stay.  As you can imagine, it stays pretty full and there is a demand for the rooms.  But they have a separate floor for cancer transplant patients where we have our room.  It is a community type affair and we have met several other families going thru a similar madness.  It is comforting to be around others who know what it is like and appreciate a good bald head.

Sunday afternoon my sister came up to visit and helped get us settled into the room.  I was feeling pretty good and we snuck out to get pizza....at a restaurant in Shockoe Bottom. I can't believe that mom allowed such a thing but my counts were actually decent when we left the hospital.  It was nice to be out for some fresh air, although I missed being with Brant on Father's Day.

On Monday we headed to the outpatient clinic to check my blood counts and get a Neulasta shot (speeds up my white blood cell recovery).  I was having issues with being light headed and weak, but managed to get around the hospital ok.  My neutrophils dropped below 1.0 so I could no longer claim "but I'm not neutropenic...!".  My platelets and Hemoglobin are still hanging tough so no transfusions and it was back to the HH for the afternoon and evening.

We have a large bird that perches on the roof top nearby.  We think it is a she and that she has a nest in the vent stack where she stays.  She is very entertaining to watch from the front window of our room.  I tried to take a picture but there is not much resolution.  Anyone out there think they know what it is?  I am thinking some sort of hawk or falcon.  She is very light colored and seems to have a white ring around her neck/chest.

But the big excitement started early this morning when we were awakened by a fire alarm....that was REALLY quite loud in a hotel room.  After a few minutes to get oriented and grab meds, phones, shoes, etc.., we headed down the five flights of stairs and to a park across the street.  Thank goodness it wasn't raining yet.  Turns out a lampshade had caught on fire in a room but it didn't spread.  It took a while to get back up to the room and by the time I arrived on the 5th floor I was feeling like I would pass out.  So I sat down on the radiator and sure enough....was gone.  Luckily mom kept me from hitting the floor and got me back to the room.  She wanted to take me to the ER right away but I made her wait until clinic opened at 8am....who proceeded to tell me to go to the ER....

I guess we are just trying to get our money's worth while we are here and want to check out all of the medical facilities offered by VCU.  The ER staff was great and said I am just dehydrated from the chemo and no longer being on IV fluids.  My blood counts were good and my neutrophils popped back up over 1.0 again - yeah.  So I sat around half the day in the ER getting a big bag of saline and some potassium pills.  Then they moved me over to the "Observation Unit" for another bag of saline.  I don't think there was a whole lot of observation that really went on there, but nonetheless, I got what I needed and am now safely back at HH for a good night's rest.  We are hoping for no fire alarms tonight and we will stock up on Gatorade tomorrow!!

Chemo Blues....

I am glad we had our big outdoor adventure on Thursday because I got hit with major fatigue yesterday after completing Dose 3 & 4 of chemo.  I also started with the rash again....no fun.  They now think I am reacting to the chemo and not a medication. I am taking some anti-inflammatory meds and they have helped.  Hopefully it won't flare back up too bad after Dose 5&6 of chemo.

I have spent most of yesterday and today napping about an hour for every 2-3 hours that I am awake.  We did go outside again today for a little sunshine before starting my chemo.  It was a quick trip just to the bench outside the door and to eat a Chick-fil-a sandwich for lunch.  The sunshine was wonderful.  One of my nurses is getting married today and I am so happy she has nice weather for the big event.

I just finished Dose #5 of chemo and will get my last one at 2am in the morning.  Then I should be discharged tomorrow (Sunday) even though I originally was told I wouldn't be out until Monday.  I'm not complaining....lol!!  Today has been very slow and I feel like the day will never end....

Escape to the Outdoors

I completed my first two doses of chemo on Tuesday and had a day off yesterday.  My counts are still high enough to not be neutropenic and to still have some energy.  So I asked for a pass to go off the floor before my next chemo run started this afternoon at 2pm.  We headed off the floor and out the building.  We went over to the Healing Garden and enjoyed the green and blooming plants from a nice swing. 

Then we headed up Marshall Street - Gertrude was quite a sight going over the bumpy (detectable surfaces) ADA ramps.  We made it up the hill and to a nice bench where we enjoyed chicken salad lunches from the Christopher's vendor cart.  But all good things must end and we had to get back for chemo time....

Things are going pretty well.  My chemo this time around is high dose Cytarabine.  This is the same drug that I had for seven straight days at a lower dose during my induction chemo.  At the higher dose there are some different side effects including a potential impact on your cerebellum.  So before every dose I get to take a sobriety test of sorts - say a tongue twister, touch my nose, finger presses, and sign my name.  Good thing they did a baseline first...lol...

I have started to have more fatigue (especially after running around!) as well as some issues going from hot to cold and flushing.  But no nausea so far...  I'm about halfway done with this hospital stay and looking forward to getting out on Monday!

I'm keeping my friend and fellow VDOT-er Ellen in my thoughts and prayers as she battles melanoma with a clinical trial thru NCI in Bethesda.  I love her humor and positive energy as she faces this nasty disease.  We can do this ELLEN!!!

It was a LOONGGG Day

I am all settled here in my room back at the Massey Cancer Center.  I am on the same floor but I have a different room.  I had a familiar nurse as I checked in and a "Welcome Back Rachel" sign on the dry-erase board.  I also had another card waiting for me with lots of cheerful wishes from VDOT co-workers. Thanks!  It was a wonderful 2 weeks back in Blacksburg.  Sunday I was able to go to church on a beautiful sunny day.  There was lots to be thankful for even though the thought of leaving the family again (not to mention the chemo) had me pretty close to the Emotional Twinkie stage most of the weekend.  After church we drove down to Hampton Roads to say hi to family and be closer to Richmond.

So Brant and I headed out at 6:30am from Chesapeake this morning after a nice 1-1/2 day visit with family and friends.  Yesterday at my mom's suggestion Brant drove me and the kids down to the oceanfront to see the water.  Despite the nasty weather, it was between storms and we got to enjoy some fresh steamed shrimp on an outdoor patio. I put my feet in the water and felt the wonderful ocean on my toes. It was good water therapy to get ready for some chemo!!

Today was a whirlwind of meetings with transplant team members and admitting procedures (questions....information...breathe deeply...more questions...vitals...labs...breathe again...more questions.... information overload!!!).  At one point I thought they would do the "take a number" system on my door because of all the different people that needed to get in and meet with me.  Then the meds started and finally my first bag of chemo was hung at 3:15.  I will do six treatments that each transfuse over a 3 hr period.  I do 2 treatments 12 hours apart, then a day off, and repeat.  I know...kinda confusing but they gave me a chart to follow.  Basically I should be done and discharged by Monday morning, but will stay in the Richmond area for 2-3 weeks to recover and go to outpatient clinic.  I can expect mostly same side effects.  My counts will drop again, but hopefully not as low.  And this time I will get a drug called Neulasta to help my white cells recover faster.

The transplant meetings were very interesting.  Brant was here with me for them and mom brought the kids up later so Brant could head on back to Blacksburg.  I learned a lot of little things about the process that I did not know.  Like for instance in the transplant I will be getting my brother's stem cells that will graft into my bone marrow and become my new factory for making blood cells ....but I will also get his immune system in the form of tons and tons of T-cells.  These are the ones that attack and kill foreign bodies.  The doctors will try to let his T-cells attack any trace leukemia that my T-cells are unable to recognize (because cancer is so sneaky).  But they don't want his T-cells to go crazy and attack my other organs and cause severe damage.  This is called Graft vs Host Disease (GVHD) and is probably the biggest side effect they have to try to manage post-transplant.  Good news is that my brother is a perfect match for the major HLA sites and that greatly reduces the risk of GVHD.  The other good news is that we are different genetically (you would get this if you saw us...lol) so there is a good opportunity for his immune system to recognize my cancer, i.e, they would not want to transplant me from an identical twin if I had one.

I also learned that because of my more "challenging" leukemia (sounds better than poor prognosis, huh?), the immune response from George's T-cells is as or more important than the chemo they give me to wipe out the disease.  I had thought that the nasty chemo prep they give me prior to transplant was solely to get rid of the leukemia, but it is also being done to knock out my immune system for several weeks to let George's stem cells come in and get comfy (graft) into my bones with no interference from me.  It will also allow his immune system come in and take over...but not too much!  They know that the chemo alone is unlikely to find and kill all of those sneaky mutating cells.  The transplant immune response should take care of the rest of it, but if not, they have some clever ways to give me "booster" cells from George to sort of ramp up the attack should any bad cells reappear.

So maybe this was more info than you wanted/needed, but hey - you got a mouse and power button!  The long and short is that even though I may have a little more challenging version of AML,  I have lots of stuff going for me - perfect sibling match, leukemia that has shown a good response to chemo, "in remission" status, healthy & active, no recent infections, etc etc.  So the docs are all very upbeat and positive and I am right there too (at least today.....).  We are tentatively looking to start the process in mid to late July and hope to be well on the way to recovery ("normal"???) by Christmas.

Thanks for keeping all those prayers and support going!!!

#IHaveAnAwesomePrayerTeam!!!!

It is a great news day!!!  The transplant coordinator called to say that George's second test was good and he is a match for me.  Then I went and had labwork done and my WBC's were 3.4 and my neutrophils were 1.4.  This is the highest they have been.  Last but not least, Dr. Perkins called and said that my bone marrow biopsy showed no evidence of disease!!  So I am considered to be in remission.  He did say that there is a possibility that cytogenetic tests will show I still have some abnormalities/disease, but those results will not be back until later next week.  And I don't really understand what it means if those tests come back bad since I will be starting consolidation chemo on Tuesday regardless of the results.  I am not going to worry about that now. 

Thanks for the thousands of prayers that have been lifted up for me.  I feel truly blessed.  After a prayer of thanks, we celebrated with some ice cream at Cold Stone...yumm!!

I will meet with the transplant team in Richmond on Tuesday morning.  Now that we know I have a good biopsy and I have a matched donor we can really start making some plans.  I look forward to understanding the process better and asking my kazillion questions.  Once I finish with the transplant team, I will be admitted back to the Acute Care Oncology floor to start my consolidation chemo.  This treatment is to keep the leukemia from showing up again.  Ideally, I will do 5 days in the hospital, and then spend about three weeks in Richmond as an outpatient while my blood counts recover again.  My poor little bone marrow...it keeps getting beat up.  Dr. Perkins was kinda funny though, he said they weren't too worried about taking care of my bone marrow since I will be getting some new marrow soon.  And George just ran a half marathon, so I am thinking he must have some good stuff!!

Another Biopsy Complete

I returned to Richmond yesterday to have another biopsy.  It wasn't too bad since I am getting used to them.  Fentanyl is my good friend now (it is the pre-med)...and Brant was there to sit with me.  Just a sore hip afterwards! The goal of this biopsy is to see if my bone marrow has recovered without any signs of leukemia.  This would mean that the chemo was effective and I am in remission.  I should know results by the end of the week.  Please pray that it will be more good news.  We are also waiting on the final results from my brother.  His second test kit has made it across the Pacific and is at the lab being tested now.  I don't know when those results will be in.   So lots of anxious waiting around here.  But at least I am doing it at home!!

We arrived at the hospital early and I stopped by the 2nd floor because they had called to say I had a some mail that had trickled in.  I had two packages and about 8 cards!  It was a great little pick-me-up to read them before heading off to the clinic.  Thanks everyone!

Regardless of the results of the biopsy, I will be admitted again next week to start my second round of chemo.  If the biopsy results are good, I will be given what is called "consolidation chemo" to keep me in remission and not let the leukemia have a chance to show back up while I wait for going to transplant.  If the results do not show a complete remission, then the doctors will find some other cocktail to get rid of the leukemia. 

I am doing well and feeling good.  My mom went home today to spend a week in her "real life" before starting at the hospital with me again next week.  She taught Brant how to do the daily flush of my central lines and he can now add some new skills to his expanding resume.  There will be some people back in Portsmouth happy to have her for a week!! I love all the support and care that my mom provides, but I am also looking forward to a few days of us just being our normal little family.  I drove Katie to a friend's house today and later made dinner.  It is these little things that I never thought I would miss so much and am so thankful I have had such a long break at home to enjoy a few of them.

Enjoying Time at Home

It has been a nice week here at home.  I have taken it easy and managed to avoid any fevers or complications so far.  My mom and Brant make sure I don't do too much!!

It was nice to be here for the last week of school, to see some of the kids sporting events, to visit at work. to eat regular food, sleep in my own bed....the list goes on and on.  I have taken a few walks around the neighborhood but it is hard to find any flat spots.  I can walk a long time on level ground but give me a little uphill climb and I am struggling!! That's ok, I am getting a lot more activity just being up and around the house.

Earlier in the week we found out that my brother George is probably a perfect match for me.  They have to do some re-tests to be sure, but they are pretty confident.  This would be great news and would mean I can get moving towards a bone marrow transplant sooner.  Not to mention that complications from a related donor transplant are often less than those with an unrelated donor.  For those without enough siblings (I needed 3 to have 1 match!!), the Be the Match Registry is a vital non-profit organization to help find bone marrow donors.  My sister Ruth completed a walk in Richmond today to support their organization.  Check out her link on the side of the blog.

Yesterday Brant and I drove back to Richmond for a follow-up appointment.  We stopped at the scenic overlook near Charlottesville since it was such a pretty day. Everything looks good and my counts are still recovering.  I will return again on Monday to get a bone marrow biopsy with the results expected by the end of the week.

I think I should have another week at home before I start my next round of treatments. I will certainly enjoy that!!!  Thanks for all the continued prayers and support.