Good Testing Results

My brother (aka Donor) took me up to Richmond on Thursday and Friday to finish up my testing, giving mom some much needed rest from running around.  On Thursday they checked me for allergies against six different penicillin related antibiotics.  It took all day to advance thru the steps - four rounds of skin pricks at advancing doses, then four rounds of needle sticks under the skin at increasing drug concentration, and finally a "drug challenge" where I took a pill of Amoxicillin.  Only the needle step really hurt, and not because of the needle but because the drugs had a big sting when they got under the skin.  I didn't test positive for any of them - yeah!  The Dr. said I still may develop a drug rash to any of them, but there isn't a concern about an severe anaphylactic type of reaction.

On Friday we were back to check on my heart.  The angiogram tube entered at my left wrist and DID NOT feel good.  I was hoping to be a bit more out of it but unfortunately they were a little light on the pharmaceuticals....  I and my left forearm were fully aware of them trying to get their tube to all of the correct spots to inject the dye and see the coronary arteries.  I probably could have watched it on the monitor if my eyes hadn't been clamped shut.  It didn't last too long and the good news is that my coronary arteries all look great.  As suspected, the heart damage is most likely caused by previous chemo and may or may not be permanent, but it is not severe enough to impact a normal active lifestyle.  George and I were back in Chesapeake by 6pm and I was quite happy for no overnight visit in the hospital.

The kids are home from a fun week at the beach, so we are all finally together as a family under one roof back in Chesapeake.  We will have a few days to enjoy each other and I am so thankful to be feeling mostly healthy and well.  The plan is to be admitted next Thursday, the 25th. I will do a six day prep regimen and the transplant itself should be on July 31st.  I just need to stay healthy and rested before starting the transplant process.

My Donor is Here!!

My brother George has arrived safely from Australia. It was a long flight and he is a bit jet lagged, but assures me that his bone marrow is in good shape - ha ha!  We have lots of jokes going on right now as you might imagine.  George teases mom for saying "Don't get hit by a car."  Like it was ok for him to get hit before, but now that we need his marrow he better not.....

Since today was Brant's first day of his new job, George rode with me up to Richmond for my cardiology consult.  I have a left ventricle ejection fraction (LVEF) of 47% which is slightly low - they like that above 50%.  I also showed 10% damage to the bottom area of the heart, which is considered "moderate" damage.  So he wants to do an angiogram to make sure there is not a blockage in the coronary arteries causing the problems.  He suspects it is chemo that has caused the heart damage, but I did have radiation to the chest for my Hodgkins treatment and that can cause hardening of the arteries.  Better to find out now than to have problems during the stress that will be placed on my system during the transplant process.  So I will be up there Friday for that procedure.  If everything looks good I will have an admit date of July 25th.  If they find a problem they will put in a stint during the same procedure and my transplant date will likely be pushed back.  It's not really what I was hoping to find out today, but I am glad they are able to work so quickly to get everything done and to minimize the risk of complications as much as possible.

Over the weekend we headed down to the Outer Banks with the kids.  This is supposed to be our annual vacation week we take with four other families in a great big cottage.  Brant and I stayed Saturday night and left Sunday afternoon.  That was just enough time to get on the beach twice, enjoy some good company, and to have my very own martini invented and prepared by the world's best bartender.  Thanks Ron, I think, for the "Dirty Rachel".  The kids will stay for the rest of the week with the beach crew - THANK YOU!  We love you guys and wish we were there to enjoy the beach and everyone's fantastic cooking!! We are looking forward to next year when we will double up on the relaxation and fun to make up for this year.

One Step Closer to Transplant

It has been very nice to be at home in between my many trips back to Richmond.  The only day I wasn't in Richmond this week was Thursday. But the roundtrip drive isn't too bad and well worth it to be at home in the evenings!  Earlier this week I did the majority of my pre-transplant testing that included CT scans, pulmonary function, nuclear medicine cardiac stress test, and a psychosocial evaluation (no comments, please...haha).  They also did a TON of labwork.  I seriously got lightheaded when I saw the table top full of tubes lined up for the blood draw.  The lab stickers to go on the tubes was easily 5 feet long.  I later found out that it takes between 6 and 10 of these tubes to fill up one shot glass, so that made me feel a little better.  I think they took between 15 and 20 tubes.

Today Brant and I spent most of the day in Richmond for our consult visit prior to transplant.  They went over the results of my testing and discussed my transplant regimen.  We had lots of good news. 

First of all, my labwork looks great with very normal numbers by cancer patient standards.  My platelets were 209 today.  That is normal even for non-cancer patients! The were 20 last Friday, so quite a jump in one week. My bone marrow has definitely kicked back in.

Next, my biopsy was still clear with no evidence of Leukemia.  This is great news since it is critical for a successful transplant to start with little to no disease.

I was most excited to learn that they have selected a reduced  intensity chemo pre-transplant regimen with no radiation.  At first I was surprised and worried that it wouldn't be effective enough.  But the doctor said there was no reduced chance for a cure.  Then I was a little defensive because this regimen was originally developed for older patients who can't tolerate a standard transplant regimen.  I was like "you don't think I can handle it??"  The doctor assured me that for my disease type and being in remission this is the regimen they would select regardless of my previous chemo and current organ function.  I quickly realized I was arguing for more toxic chemo with a man much smarter than myself and got my ego back in check.  Less chemo will be just fine, thank you. 

The consult with the transplant doctor was really awesome the way he explained everything and even made some sketches and graphs.  My tooly personality loved all the data.   It took me back to the couple of physiology and biomedical engineering classes I had in college.  And my doctor even got his undergrad in mechanical engineering like me!  Everyone we met with today was wonderful and we are once again so impressed with VCU-MCV-Massey as we transition from the oncology group to the transplant team.

The only bit of bad news is that my heart and lungs did show some damage from previous chemo treatments. The lung function isn't too bad but the heart issues will require a consult and clearance from the cardiologist.  So back to Richmond I go on Monday.  For you cardio people I had reduced left ventricle ejection fraction and I think something about some heart wall damage that could be related to coronary artery problems.  A lot of that really didn't sink in but he did say that there was a chance I will need catheterization.  I will learn more on Monday and prayers are appreciated that I will not need any procedures.

My tentative admission date is July 24th or 25th.  This may slide back depending on what the cardiologist wants to do.  The inpatient process will last around 3-4 weeks.  Lately I have really been struggling with dreading to go back for more chemo and not wanting to be away from out family.  But today was so upbeat that it gave me some more energy and desire to get on with this and take another swing at cancer.  I hope it lasts!!

Home Sweet New Home

I am happy to report that they let me leave the hospital on Tuesday afternoon with a plan to return to clinic on Wednesday to get my super-duper-fancy-matched platelets.  They told me the platelets were flying in from Wisconsin....and hadn't yet arrived....really?!  At clinic on Wednesday I found out that the platelets were not coming from Wisconsin, it was my blood sample that was sent to Wisconsin to be tested and typed.  I'm thinking we have a pretty crazy healthcare system if my sample had to go out west to be analyzed...  The testing wasn't complete and so obviously there were no matched platelets.  But Dr. Perkins had mercy on me and told me to go home for the 4th of July after getting a batch of regular platelets as long as I came back on Friday for labs.  Maybe my matched platelets would be ready by then.  We couldn't get out of Richmond fast enough!!  On Friday my platelets hit 20!  They had been 5, 6, and 7 on Mon, Tues, and Wed so this was great news and meant I didn't need a transfusion.  Good thing, because they still haven't been able to match my platelets.  Now that I am making my own platelets, it isn't such a big deal, but hopefully they will find a solution before next month.  Other than that, I am feeling pretty good and have not fainted lately.....lol.  Mom doesn't find this as funny to joke about.

My other big news is that we have moved back to Chesapeake, so I came "home" to a new house for the 4th of July.  It was really tough to leave Blacksburg.  It has been our dream for quite a while to live up there, and we enjoyed our year so much.  However, Brant had a good opportunity to go back with his former employer.  With everything going on with me, it makes sense to move back closer to family and to not be stretched out three different places across the state!  Plus, it is nice having only 1-1/2 hrs between Richmond and the kids.  Needless to say Brant has been busy for the last two months getting us moved with no help from me.  He has done a great job and it was wonderful to walk into a house (in our old neighborhood) that is 75% unpacked and have a grilled steak dinner at our dining room table to celebrate the 4th of July!

One of the first things I saw on the kitchen counter was a little rock that I had received at a prayer service at church in Blacksburg a while back.  The rocks at the service had different names of God inscribed on them and you could pick one that spoke to you. I had taken one that said "The Good Shepherd".  I'm not sure how this little rock, that I had tossed onto a shelf months ago, made it onto the new kitchen counter.  But seeing it made me smile and reassured me that God has us in His protection and is guiding our journey.  Even if the path is NOTHING like I had planned..... 

July...Really??

Wow, I can't believe we started a new month today.  It seems like my world is on hold and yet is flying by all at the same time.  The bad part is most of the "flying by" stuff is happening outside my little cocoon here in Richmond....:(

My blood counts have still been stubborn.  I thought I would be ready to go home after a clinic check last Friday.  Instead, they set me up to come in for lab work over the weekend since my platelets were still less than 5 along with low hemoglobin and not many white blood cells.  I was feeling a little weaker on Saturday but got my platelets and then enjoyed having lunch with mom on the State Capitol grounds - gorgeous!  On Sunday I felt a little weaker and when the nurse had me stand for a blood pressure I did the whole fainting thing again.  That got everyone pretty worked up and it landed me back in the hospital with a bright yellow wristband that says "Fall Risk".  So I am back over on the 2nd floor checking in on all my great nurses.

I think they are finally taking my platelet issue a little more seriously and I will be getting matched platelets as soon as tomorrow.  That will carry over to when I do my transplant and hopefully prevent such an extended period of low platelets during that time.  The cardiologist stopped by and assured me that my heart is fine, I just don't have enough blood going around in my system.  So I am on a medication to help keep my blood pressure up until my counts recover. And they are giving me a little extra blood to keep my hemoglobin closer to 8 than to 7.

This morning my labwork did show a slight uptick.  I am hopeful they will release me tomorrow after platelets or Wednesday at the latest.  Of course...I should really know better than to plan...! But for now I have to stay put and be a patient patient.  Mom and I continue to do our best Rain Man impersonation by catching Wheel of Fortune and Jeopardy each night after the evening news.  I know....it is sad.  Tonight Katie will have another All Stars softball game and I look forward to the text updates that the softball moms are so great to send me.  They won last night in extra innings after a rain delay.  It was 11:30pm!!

Despite the disappointments of being in Richmond and not at home, I am reminded of the many blessings I do have.  You don't need to walk the halls of an Oncology clinic or hospital floor very long to realize that!  All in all I am quite healthy (for a cancer patient!!) and pain free. Thanks as always for the love, prayers, and support that are sent my way.

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!