Trick or Treat

Hope everyone had a nice Halloween.  I guess parts of the country had pretty bad weather and some bummed-out little ones.  Mom & I had our holiday fun by making this "Monster Fruit Salad" to take into the clinic for our wonderful nurses and other staff.  Don't you just love the internet?  You can find all sorts of neat ideas.

Clinic went pretty well today.  My platelets dropped from 28 to 18.  That was kind of disappointing, but at least they weren't less than 5.  I got a transfusion of platelets that only bumped me up to 21.  I think they are starting to work on finding me matched platelets again.  My hemoglobin held at 10.1 which is pretty high for me, but my white blood cell count is still low and didn't show any signs of coming up.  I go back again tomorrow and I really hope they will "plump me up" and send me home for the weekend.

Mom and I enjoyed the day off yesterday.  I slept in and took a nap.  Yes, it was pretty industrious of me.  We did take our afternoon walk around the Coliseum and we were able to go again today before any rain moved into the area.  It would be nice to have a higher energy level, but I guess I need to quit complaining about it.  My body has been beat up and needs rest.

No news from the biopsy.  I will probably schedule an appointment with the doctor for early next week when we can discuss results and hopefully Brant can be here with me. I am supposed to start my second cycle of Vidasa chemo next week, but I don't know how they can do that if my counts are still low.  It would be nice to have another week to recover.

That's it for today...I need to go check out the Brain HQ website my brother has given me a subscription to...and is bugging me to get logged on.  Doesn't he know I am "really" busy with my naps and all????

Biopsy Day

After my post last Friday I had another weekend with continued low counts.  They did let me go home after clinic on Saturday but I was back in Richmond by Sunday evening.  It is a lot less nerve-wracking when you are just down the street from your doctors and nurses.  The 24 hour visit home was worth it though.  Just to be with the kids and Brant in our home feels so good. I know it has to be therapeutic!

On Monday morning at clinic I was very dizzy and had low blood pressure.  My platelet count was below 5 and I was having some bleeding again.  They were talking about admitting me again....ugh!  But they gave me a unit of blood and a unit of platelets and then did a re-check of my platelet level.  They bounced up to 27 - woot woot! That was good enough to let me go back to the Hospitality House and to keep my biopsy on schedule for today.  This morning my lab work showed my platelets at 28...it is the first time they have held in a while - yea!!  My HgB and WBC count also inched up a little.  I'm trying not to get too excited, but I am hopeful that this is a sign my counts are on the rise.

They did my biopsy today.  It was probably the worst one I have had because it took several tries to get a good sample.  They gave me good drugs, but they aren't that good and it was pretty uncomfortable.  Of course, it made me worry that something is wrong with my marrow since it has never been a problem before getting a sample....  I know, I know....worrying is a waste of time and does no good so I have tried to let it go.  I probably won't have results until next week.  Waiting is hard, but we are used to it.

Since my counts were so good, they let me have a day off from clinic tomorrow.  I look forward to sleeping in.  Other than a very sore hip, I felt pretty good this afternoon.  Mom and I took a walk around the Coliseum - it has been a while since we could do that.  I enjoyed seeing the knockout rose bushes that are STILL covered in blooms.  I am tempted to plant some in our yard when I make it home, but I have a sneaking feeling they won't do as well under my care. 

Well it is off to bed for me.  Today was the first day in a while that I didn't have a transfusion...so I didn't get any steroids either.  I am actually sleepy before midnight!

It Was a Long Week

After returning from my awesome visit back home, it was back to long daily clinic visits for repletions - I get platelets and potassium daily and have needed blood and magnesium some too.  They said this chemo was "mild" but it has knocked my blood counts down pretty good.  My platelets seem to be the worst of the group.  They were at 6 on Monday, but have stayed pretty much below 5 the rest of the week.  On Wednesday I started having some bleeding that got everyone excited and they admitted me back up on the 10th floor to get some more platelets overnight and to "keep an eye on me".  They let me go on Thursday so it was a quick visit - just long enough to check in with a few of the nurses and to remember that the food really isn't very good.

My platelets are still low but no more bleeding.  Apparently after transplant I am still very refractory to platelets, so when they give me a transfusion it really doesn't bump them up much and they are gone the next day.  Hopefully there will be some signs of recovery in the next few days and my bone marrow will start producing cells again more consistently.  My bone marrow biopsy is scheduled for Tuesday and the doctors will be able to tell better what is going on when they get those results.

Mom and I are doing pretty good.  She is such a strong woman going thru this with me.  It is a tough time as we wait to see what is going to happen and when my body will recover.  I am weaker than I would like to be, but I get a steroid shot before my platelet transfusions each day and that does give me some energy.  I joke that they are my PEDs.  I may be disqualified from any cancer records due to my doping....

Brant took off from work and drove up to surprise me in clinic today.  He seems to know when I need a little boost.  I will see him and the kids again at some point this weekend.  It will be nice to catch up on their week.  Katie had her last softball game - they honored the 8th graders and Brant was there to be on the field with her.  Chris had his first orchestra concert as a high schooler.  He looked really nice in his tux.  It is hard missing so many events, but I appreciate all of the pictures and texts that people send to keep me in the loop.

My new quote (which sadly I saw on TV from the teacher's facebook page that was killed this week):

"Not every day is a good day....but there is good in every day."

A Wonderful Weekend at Home!

Last week the doctors decided that a trip home would be some good medicine for me.  I wasn't sure that it would work out since my counts have been low and I haven't been feeling too great.  But the nurses seemed determined to carry out "doctor's orders" and pumped me up with "two of everything" on Friday and told me to get out of here and enjoy the weekend.

Mom and I made it home by 5:30.  The James River never looked so beautiful as we crossed the Monitor Merrimac bridge and knew we were almost there.  It was a surprise for the kids and they were so happy to walk in the family room and see me sitting there.  I didn't have a ton of energy, but it doesn't take much to cuddle, watch movies, and be waited on by Brant and the kids. :) We had a wonderful family dinner on Saturday and Brant's mom was able to make it over to visit. It was also nice to see a few friends who dropped by, but we kept it pretty quiet since a lot of company was not what I needed.   And to sleep in my own bed...after three months.....heaven!  It was hard to leave today, but how can you really be that upset when we got a weekend we weren't expecting?!? 

We made it safely back to Richmond by 7:00pm this evening.  It will be off to clinic tomorrow for what I expect to be a long day of getting repletions after two days on my own.  The nadir (low point) for this chemo should be sometime this week so I am hoping we will start to see some improvements in my blood counts before the end of the week.  But as always, I know not to expect recovery too quickly.

I brought a whole lot of positive energy back with me and really think the visit home helped me get mentally "back in the game".  It just felt so right to be with the family that I know I am going to get back there soon!  Thanks for all the encouragement and prayers.  In the last week I have had two sets of friends drop by in Richmond and offer up powerful ones for me.  Love you guys!!

One More Day of Chemo...then Waiting

Tomorrow is my last day of Vidaza chemo.  It hasn't been too bad, but chemo is chemo and my platelet counts have stayed low.  We are hoping that during the next three week recovery period we will see those counts go back up.  I have had some long days in the clinic getting repletions of whatever happens to be low - mostly platelets and potassium, but there has been a bag of blood and some fluids and magnesium in there too.  Again - thank you to all the blood donors out there!!!

I have had some great caregiving the last week.  Ruth was up here a few days last week while mom went home for a little break.  Then Brant and the kids came up for the weekend.  We stayed in a hotel to have a little space.  It was wonderful to have a family meal together, watch movies, and just hang out in general.  If only we could move the Massey Cancer Center to Norfolk!  The kids and Brant are being so strong to go thru this separation. It really isn't easy but I know God is with them.  And we certainly cherish our time together more than ever.

There isn't too much else to report.  I will be getting a biopsy on Oct 28th to see if the chemo is having any impact.  Please pray hard for medicine and miracles to happen.  We really won't know much until the first or second week in November. My job is to stay positive and fight, fight, fight!

Day 2 of Chemo

FYI - If you receive this via email you didn't get my song link in the last post.  Oops.  At the bottom of the emails there is always a link to my blog page that you can click on and go to the web page.  The song link does show up there!  It was Kutless - What Faith Can Do.

It has been a tough few days as you might imagine.  I have hopeful moments, then periods of fear.  There are so many verses in the Bible that tell us not to fear, but it takes a lot of mental energy to turn your brain off sometimes and just focus on the now.  Right now I am feeling about as cheerful as the weather outside (gray and raining all day), but I am happy that all those new plants at our house are getting a good soaking!

Brant has taken off work and driven up to be with me Tues, Wed, Thurs.  It has been a very nice to have him with me in clinic.  On Wednesday we met with one of the other doctors.  There are four, they work as a team, but each has a little different style.  Dr. Toor broke the news to us on Monday.  Dr. Chung followed up on Wednesday confirming the game plan.  There wasn't too much new, but he did emphasize the positive and said this is early and we have a good chance to wipe it out.  I started my chemo yesterday.  It is called Vidaza and only takes 20 minutes to infuse.  Today was my second dose and I will take it for seven days. It is pretty mild and they don't expect me to feel many side effects.  I am hoping I keep this lovely bit of hair that has grown back.  Brant says I am at the Sigourney Weaver in Aliens stage right now.

All of my cultures and tests came back negative for any type of infection or virus.  So I am off of the antibiotics again.  Dr. Chung is pretty sure that the daily fever spike is related to the influence of the pre-leukemia cells working on the marrow.  He went thru that pretty quick and I didn't really understand it too well.  Something about things being released into the bloodstream that can cause a fever.  I have also been very achey thru my lower back and my thighs.  It is like I had a big workout yesterday and the muscles are sore.  Dr. Chung thinks it is a bit of GVHD where the donor cells are attacking the connective tissue around the muscle fibers and irritate them.  It is manageable with Tylenol.  They actually want to see some GVHD so they know the donor cells are doing some attacking.  Tomorrow I go down another 25mg on the immunosuppressant so those donor cells will have more freedom.

Thanks for all of the comments and texts and emails and messages sent my way.  I was reminded by my brother that this is a gift to realize how many people love and care about us.  I'm fighting each day to stay strong and positive.  The army of support I have makes it so much easier!  Thank you.

Flirting with Fevers and Hitting a Speed Bump

First of all Happy Birthday to my parents!  Yesterday was 75 for mom and today is 79 for Dad.  Some people are funny about their age, but I think that it pretty impressive for them to hit these milestones.  And I especially admire how much they still do each day to try to help others.  Love you guys!!

So the chills/fevers have gotten a bit worse each day.  The blood cultures (think science class petri dish experiment to see if bacteria grows) have continued to be negative.  But over the weekend the fevers got high enough that I had to "call-in".  I was worried they would re-admit me, but so far they have let it ride with some Tylenol and more tests.  Today I saw the doctor and they started me on two antibiotics to see if it will help.  I also had several other tests done and will get a CT scan this week.  Hopefully they can identify the source of the fevers before too long.  It is most likely why my platelet count has been dropping so much.

We also got some bad news today.  My biopsy results came back and although there was no evidence of disease in the peripheral blood or the standard bone marrow slide, the much more sensitive FISH test detected about 5% of bone marrow cells with genetic mutations consistent with my leukemia.  This is obviously not a great thing to hear at Day 68.  We knew going in that secondary AML is a tough, resistant disease and that this transplant was in no way a guarantee to get rid of it.  But when you are fighting so hard to stay positive and think about beating it, it is tough to hear it isn't going the way you had hoped.

The doctor was very good with me and said we will get thru this. It must take such special people to work in Oncology and to be so caring and supportive with the job they do. There are definitely treatment options that are effective and they did find it early on.  So the game plan seems to be:  first - take a few days to get the fevers under control and rule out any viruses/infections.  Second - start me on a chemo that is targeted at trying to "re-program" the mutated cells.  This chemo was developed by the Germans and is supposed to be pretty mild and has been effective in this situation.  I will do it on an outpatient basis for one week, then take a three week break. Third - drop me off of immunosuppressant drugs pretty quickly to let the Graft vs Tumor (GVT) effect have a chance to kill some leukemia.  That is where the donor T-cells would recognize the leukemia cells as bad and attack them.  Ideally, the docs would like to wait another month before doing that because now I will be at higher risk of Graft vs Host Disease (GVHD) where the donor T-cells will see my normal organs as foreign and attack them too.  But my donor cells came from a really smart dude, so I am praying that they only needed about 68 days to figure things out!  Down the road I will likely get a boost of donor cells as well that are sitting on ice to help super-charge my cancer fighting immune system.

I have an awesome family and we all got a chance to chat tonight and encourage one another.  Each sibling had something to say that gave me hope and support.  Brant as always is my rock.  We will get thru this.  I turned on Pandora while sitting alone in the infusion room (Mom had stepped out to get me some lunch) and I heard several great songs.  This one really stuck with me.  I hope you will listen, too, because it really applies to all of us when things get tough.



Well I have had enough tears for today and am ready for bed and to wake up tomorrow to face a new challenge.  Remember to be thankful for every day - the good ones and the bad ones.

Past Day 60.....

Sunday was my official Day 60 and on Monday I had a bone marrow biopsy and lots of blood tests for re-staging and checking on my progress.  Of course, results won't be back until next week's doctor appointment so I am trying not to think about it too much.  We are praying hard for good results and continued progress.

The last week has been somewhat eventful.  I had my central line removed last Friday morning.  I did not pass out despite only receiving local numbing with painful lidocaine shots.  The whole process sort of freaked me out, but I have had it done before.  So that hole in my chest is healing up and I now just have one access point for IVs - a port that is under my skin so much lower chance of infection.  They also started me on antibiotics last Friday because a culture came back positive, but the re-cultures done the next day did not grow anything so they stopped my antibiotics on Sunday.  I guess it was another false positive.  I have been dealing with some afternoon chills and my temperature goes up but then back down later in the evening.  I get cultured again tomorrow so we'll see if there is some sort of infection going on.  The good news is that my white blood cells and neutraphils are at pretty decent levels so maybe they can do some fighting.

I saw the Nurse Practitioner today.  Overall I seem to be doing very good.  Just need to get my stomach feeling a little better and my blood counts moving in the right direction again.  I had another blood transfusion on Sunday (I get about one a week now) and my platelets have been falling. But everyone seems to take it in stride as part of the normal process. Must....be.....patient......

We had a really great weekend as a family.  It was Katie's 13th birthday so we rented a hotel room with some space to spread out and enjoyed Friday evening together and had some ice cream cake.  On Saturday, Brant took the kids up to Blacksburg for a visit and they both spent the night with friends.  Sunday they came thru and spent some time again with me.  While Brant was out of town a really awesome group of friends transformed our yard with fresh mulch, trimmed shrubs, cheerful flowers, and two pumpkins for the front porch.  It was such a blessing for us and the house looks so nice for the Fall.  Thanks again to the Cox Yard Party crew!!!

I am glad it is October...another month has started so surely I am a little closer to going home.  I have a lot of tears sometimes but I think it is good to let them out.  This by far has been the most challenging thing I have dealt with in my life.  And it isn't nearly what some others around me are dealing with.  I repeat often....It is in your hands Lord.  Each morning brings new hope and each evening brings rest (which I am very thankful for!) and another day closer to home.