Results 12 Month Post Transplant

I am such a lucky girl. My results from the "restaging" are in, and they are good. Blood work almost all normal.  I still have a higher than normal creatinine level of 1.2. They think this might just be my new normal.  My cat scan was normal, the breathing test was normal, I have fully switched to my donors cells, and have a strong immune system. And no sign of GVHD. We will continue to monitor until 1 year off immunosuppressant drugs. That will be April 2016. Until then I will continue on Acyclovir to stave off the possibility of shingles. 

So I asked m doc point blank "Can I go back to work?" He responded "why would you want to do that? Flying is terrifying." I responded "I promise not to do loops and rolls." That freaked him out.  But he said I can go back to work. So ASAP I will reapply for my medical and wait for the FAA to approve it, which may take a couple of months. Paws crossed.

Then I got 6 injections. I am getting inoculated like a newborn child, and the schedule will continue for 24 months post transplant.

We took a nice "do-over" vacation spending a week on a sailboat in Belize. Then Kent, Dave and I stayed a few extra days to dive. We did 5 dives in 2 days most notable the Blue Hole. I have great respect for the dive shop, Amigos del Mar. They took great care of us. I felt like a princess. 

I go back for more shots in 2 months, check blood work in 3 months, then restaging in 6 months.  Next update May 2016. 

It's Scheduled

October 17, 2015 will be my one year anniversary of receiving a stem cell transplant from my brother.  Thank you, Ed! That also triggers a restaging.

The restaging is a series of tests (blood draw, bone marrow biopsy, CT scan, pulmonary function test, etc.) to check my progress.  It has been scheduled for October 16. Then we have to wait for the results. The appointment to receive the results is scheduled for November 6. (Happy Birthday, Mom!)

Pending the results, I should be able to get permission from my doctor to go back to my normal job.  It will be a process, but at least it's getting closer!  Don't get me wrong, I am thankful to have my part time job teaching.  I do enjoy it, but it's not my first choice in careers. 

I am so humbled and thankful that I had a perfect match in the family for transplant donation.  Many, many, many do not have that option.  In those cases they have to look outside the family.  There is a wonderful organization that has a national database of potential donors.  It's called Be The Match Foundation.  The men and women who sign up submit a cheek swab and wait until they are needed.  Then they get an all expense paid trip to the doctor and donate whatever cells are needed.  Volunteer donors never pay out of pocket.  How fabulous.

It's a great program, but as you may guess, they need to raise funds.  A friend of mine bought tickets to the fundraiser and asked me to go as her guest.  Yay! I am honored to attend.  I even asked a neighbor to donate an airplane ride as a silent auction item. (Thank you, Vic!) I hope it raises a lot of money!

http://www.bethematchfoundation.org/site/PageServer?pagename=soiree_2015_atlanta

Other news, September is Blood Cancer Awareness month.  I was asked to tell my story for Northside Hospital as part of a campaign to raise awareness, and solicit funds for those who cannot afford treatment.  Here is how it turned out.

http://www.northside.com/faceleukemia

To be honest with you, I am surprised if anyone is still reading the blog.  But, I said I would continue to write with news, and this counts!

Now go enjoy this beautiful Fall Season with those you love! 

That's an order!

September Visit

Hi all!

My office visit went well yesterday. My Physician's Assistant (PA) was happy with how I looked and with my numbers. 

Weight 129, temp 98, pulse 80, resp 16, blood pressure 112/74

WBC 4.5, HCT 30.0, Plat 150, ANC 3.12, CRE 1.2

All the other numbers were normal or close to it.

Last time my CD4 count was slightly low. It is the count that tells whether my body can protect against pneumonia (PCP). The results came in today and they were good, so I don't have to do another pentamidine treatment. 

I was hoping to get my BIG TESTS scheduled for October, but as of yet, I don't know. In October it will be blood draw, CT scan, bone marrow biopsy, etc.

October 17 will be a year post transplant. Wow. Time really flies!

So, in other news, I took my first big plane ride since June 2014.  I was so excited.  I visited my family and even a few friends. I also got to go for a couple of boat rides on a lake. How fun!

Me on the Jet.

With Gilbert

Mom, Aunt Pat, and Grandma

With Dave

With David, then we saw Barbara! (Duh...should have brought her some ice cream)

Driving to the Lake with my Sister

On boat #1 

With Brother-in-law on boat #2

Not pictured, but who I got to visit with: Dad, Dave, Ed, Marie, Jeremy, Elizabeth, Samantha, and Lil Dexter.

I wishihad more time. There were so many more people I wanted to see, but Kent went out of town Saturday night, and wasn't expected back.  Thank you, Dave, for dog sitting our 2 plus a foster.  See you tomorrow!

Hmmmm

8/4/15

I have been asked to "tell my story" which will be used as promotional material for Blood Cancer Awareness Month. (September). They are hoping to start an endowment to help patients who need financial assistance. 

I don't really know what that entails, but I will find out.  I signed the release, but added stipulations that they cannot pull any records protected by HIPPA. In addition, they can only use my first name, and the materials cannot be used for the press or news media. (For Northside use only).

Dr. Morris was in the brainstorming meeting and suggested me as a candidate. Oh, that's nice. But my friend, Helen, had written an article and heard about the team looking for stories, and that's how I heard about it first.

Hair watch:

It's crazy.

The numbers were good. Red blood is still lagging, and my creatinine is still elevated. I am not happy, but my PA is very happy.  Oh. OK, then. 

I also ran into another patient I have known since the beginning. Last month she learned her cancer was back. She has a different kind, and it didn't respond to chemo or a transplant.  As she put it today, she is concentrating on quality of life.  There is no cure for her. She is the sunniest, happiest woman I know. I am going to miss her. But not yet. I have her number and we will get together.

So... The numbers:

WBC 5.4, RBC 3.22, Hgn 10.6, HCT 29.4, Plat 173, ANC 3.91, CRE 1.2

Weight 51.2, temp 97.5, pulse 95, press 107/73

All in all, a very good day. Tomorrow I go to work at my part time job.  Boy, was I lucky to get that. I am so glad to be useful again.

Next appointment September 2nd. 

Reality Check

Monthly check. 7/2/2015

Vitals:  95/60, heart rate 82, respiratory 18, weight 56.3, temperature 97.8 F.

Blood work: WBC 3.9 (normal is 4.8-10.8), RBC 3.21 (4.2-5.4), HCT 29.0 (38.0-48.0), Plat 139 (150-450), ANC 2.52 (1.70-8.90) CRE 1.3

No problems.  My PA, Octavia, says I look amazing and she will tell Dr. Morris. Well ok then.

I ran into another patient I knew from last year. We both were checked in at the special Blood and Marrow Transplant Unit at Northside Hospital. We both had transplants. My 6 month check showed no sign of cancer. Hers did. Today she has an appointment with Dr. Morris to discuss "plan B" options.

She also tells me she ran into the husband of another patient we knew.  This patient caught a virus and was in intensive care. She has heard no other news and doesn't know if she survived.

There was another lady in the lobby who came for a check up. She is getting admitted today due to GVHD.

I am in touch with a lady whose husband had a transplant. He has had many complications. I think he was also admitted to the hospital with GVHD.

Lastly, I got another vaccination today. While I was in the waiting room I ran into a lady I have known for many years. She has been fighting uterine cancer for 5 years. She gets chemotherapy infusion every 28 days. Her tumors aren't growing, but aren't gone either. She is a fighter with an amazing perspective. She is just who I needed to see to cap off the visit.

So far I am one lucky girl. I feel 100% normal now. Let's hope that keeps up. We still have some work to do on my numbers. Only time will tell.

Next visit August 4th at 1245 for a monthly blood check.

Monthly Check

June 4, 2015

What a month it has been since my last entry. Chip, the part timer, went home, I got a part time job, we bought a new (to us) car, and rescued two dogs.

Busy!

We flew up to get them, of course.  Kent is holding Bubbles. The other is Razzle.  We will have them a very short time, then off to another foster home.

He finally did it. He got his Lexus.

I had a visit to the clinic for my monthly blood work.

Weight 58kg/127 lbs.  oops. 7 pounds over my goal. No more nightly ice cream.  We will see how that goes for a month.

Blood pressure 124/77, heart rate of 86.

WBC 3.8, RBC 3.07, platelets 139, ANC 2.61, CRE 1.2, Mg 1.8

Next appointment is July 2.

The 6 Month Results

I am still in remission!  There is no sign of cancer or graft vs host disease. I have less than 5% blast cells just like a normal person. Chimerism test results are 100/95.  That means there are actually less than 5% of my original cells left, so the transplant has taken hold and working well.  There was a type of test to see if I am gaining an immune system. I am. There were many more tests looking for known complications from the transplant, chemo, and total body irradiation.  I have no signs of any problems.

Weight 56.1, temp 97.2, 102/66, 100% O2.  I didn't get. Copy of my labs, but Dr. Morris read them to me.  My hemoglobin is still catching up. CRE is still 1.2. But neither of these caused him concern. He said now I only need to be seen once a month for blood work.  Next appointment is June 4th.

So I can still be out in public.  In addition, I am off my food safety diet. I can eat whatever I want: sushi, yogurt, Bresse Bleu, etc.  The doctor said anything except live goldfish.  I asked about the worm in the bottle of tequila. He said I could have half a worm. (Kidding! I would never!!)

Finally, I can have live plants in my house. Darlene has been babysitting for me. They will miss her! 

Unfortunately, Dr. Morris also cleared me to clean up after the dogs again. No excuses now. I got so used to Kent being my pooper scooper! Oh well... Back to independence.

It will be two years before I will be fully vaccinated.  Here is my vaccination schedule.  I cannot get any live vaccines until at least a year post transplant. No yellow fever shots.

I got two shots today.

In celebration, we rounded up some convertibles and neighbors on a motorcycle and went out for a treat.

Peanut butter or caramel? BOTH!

I am super thankful the doctors and staff at Northside Hospital were able to help me. Super thankful.