10-30-11

My new motto:   I’M GOING TO FAKE IT TIL I MAKE IT !  Here’s why….there is so much more positive energy and jive in wellness rather than the funky feeling of not being well.  As I have said before, gotta keep moving forward!  I did look back (at my pill journal, that is) just to get a feel for how much I have improved.  Here’s the stats:  during the middle of September I was taking 48 pills a day.  This was when the BK virus was at its worst.  Today I will take only 18 pills.  That’s progress!  Of these 18 pills, 7 are preventive meds to keep me from getting sick.  Anti-viral, anti-bacterial, anti-fungal, and anti-pneumonia.  They have worked wonderfully…so far since I started this journey the first of May I have not been sick except for the BK virus which nothing can prevent!  These meds will be discontinued when I am no longer on steroids and I’m being weaned off of my immune suppressant drug.  Speaking of, still eating like a horse and weighing in at 89 lbs.  According to my scale I have gained a pound!  Yippee!

Got through Cycle 3 of my chemo last week.  Made the daily treks to Amarillo and Stephanie did a great of giving me those shots in my belly.  Harrington is a wonderful place with caring people!  About the only problem I’ve had is chemo-related fatigue.  No nausea since I take the nausea meds.  Nine more cycles to go!

I will be going back to Houston on Nov. 8th to see Dr. Hosing, have a bone marrow biopsy to see how my donor and I are getting along and how my chemo is progressing, and some secondary tests scheduled by my survivorship nurse.  I will have a pulmonary lung function test and bone density test.  This is because the extremely toxic chemo I took before my transplant that killed my bone marrow can cause problems elsewhere in my body.  Every time I go back I will have different tests to make sure I am OK.   And of course the immunizations since my childhood immunizations were wiped out.

Have a Happy Halloween!  Eat lots of chocolate!

And I’m going to fake it til I make it !

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10-16-11

Hi Everybody,

I’m about to be recuperated from the Houston trip this past week!  Travelled Tuesday, hospital all day Wednesday, and travelled home on Thursday.  My appointment went well with Dr. Hosing and my PA, Erin.  My weight loss problem is due to Graft vs Host Disease (rejection).  My donor just isn’t comfortable yet with me and wants to reject me, but they assure me that as time passes he will gradually settle in and decide he is where he is supposed to be and everything will be wonderful!  That’s when I will get to get off the immuno suppressant drugs and live a more normal life!  Meanwhile I am on higher dose of steroids to treat the GVHD, and have quit losing weight.  I’m just not gaining yet….hanging in there at 88 lbs.  Those magical steroids have raised my energy level somewhat which has helped.  I will go back in a month for my regular checkup.  Dr. Hosing cleared me to begin my third round of chemo so beginning tomorrow, I will make daily trips this week to Amarillo to get the Vidaza shots.   Two shots in the belly a day for 5 days.  I don’t know what to expect this time because the first round was brutal, the second round was not bad at all, just tiredness and fatigue.

Before I was supposed to be discharged the first time (before the BK virus hit me) I was assigned a survivorship nurse and had a lengthy appointment with her concerning what I can and can’t do once I get home.  It is part of the Stem Cell Transplant Survivorship Program designed to insure safer living after transplant.  Here are a few of the things I can and can not do:

I have to wear a medic alert bracelet for the rest of my life.

Children under 12 must wash hands and change clothes before coming by my house after school or daycare.  Lots of germs in these places!

Anyone coming into our house must wash their hands.

I can’t be around children who have had recent vaccinations with live viruses like the nasally inhaled flu vaccine.

Lots of rules concerning pets.

Can not do yard work, dig in the dirt, or pot plants.  (OH darn!)

Avoid church service during cold and flu season (Oct-April)

I no longer have any of my childhood vaccination immunity.  They were all wiped out by the chemo that killed my immune system before the transplant.  I will gradually start getting re-vaccinated.  Crazy, huh?!

Everyone in the family that I will be around this winter has to have a flu shot.

Still can not eat fresh fruits and vegetables, unless they can be first washed with soap and then peeled.

The survivorship nurse schedules secondary appointments when I have my regular checkups with Dr. Hosing at MDA.  All of the supportive stuff like follow up pulmonary function test, bone density tests, immunizations, endocrine testing, etc.  Chemo can affect your whole body and they really do stay on top of it.

And of course, there is a big Survivorship Day every year to get together and celebrate.  I’ll be there for that!!!

I have a couple of pics to post.  My son-in-law Richie whom I dearly love and adore, showing off our bald heads!  Richie, I am so thankful you are part of our family!

Here is a pic of my friend Monica.  We were put together by my Doctor in Lubbock early this past Spring just after she had been diagnosed with myelofibrosis.  We on the same journey, our paths are a little different, and I am somewhat ahead of her.  But it is an awesome friendship and support system for us both.  Thank you Dr. Owen for getting us together!  It has been a blessing, and I know we will be life long friends!

 

10-11-11

Just to reiterate the comment I just posted…..thank you all so very much for those comments!  Wow, your thoughtfulness, love, and concern just totally make me so happy!

Wade and I are on our way to Houston today to see Dr. Hosing tomorrow and hopefully find out what is wrong with me and this weight loss thing.  We plan to only be there a couple of days, but I have learned not to have many expectations about these things!  I will keep you posted when I get back home.  I’m a little nervous about flying but I am armed with plenty of masks and hand sanitizer, I will probably scare everybody to death!   LOL!!!  I have learned that when you put that mask on, people move away from you!

How about those Rangers yesterday??!!!  What a game!

Have a great week everybody!

10-04-11

Oh my gosh, there is an infomercial on TV right now playing all the 60s hits and I actually know all the words to every song (this is a 30 minute program yall!)…..I’m blaming my sister Jan who had tons of 45s!!!   LOL!!

I’ve been home for about 10 days now and I have to say it has been very bittersweet.  Sweet to be home with my big family and beautiful grandkids, sleep in my bed, fall weather.  The list could go on and on!  Bitter because I have not been well since I got here.  I have something going on causing me to lose weight very quickly even though I am eating fabulous stuff I usually have to leave alone like fried foods, mashed potatoes, ice cream, etc!  Drinking ensure, too weak to do anything, (I haven’t even unpacked yet!  Those of you who know me well know how out of character that is for me!) weighing in at 88 pounds.  I look like an alien with a big head and scrawny wrinkled body!  Something is causing me not to absorb my nutrients in my gut, MDA thinks it is either Graft vs Host or an infection due to all the meds I have been on.  I am also still fighting the BK Virus, so it pretty much sucks right now!  I have tried to stay positive throughout this journey, but this one on top of the BK has been tough!  My Dr. at MDA is in India and I am waiting to hear what the PA has found out from her through email.  I may be looking at a trip to Houston.  Will keep you all posted!  Please keep me in your thoughts and prayers!

Hugs,

Holly


                                                                                                                                                        My Team at MDA:  Allison my Pharmacy Doctor, me in my funky dark wig, Dr. Hosing my Stem Cell Transplant Doctor, and Yahzen my Advanced Nurse Practitioner

They are truly amazing and I received only the very best of care from them!  I love these ladies!