Back To Work

Today I started retraining for my normal job. The last month I had been preparing, and today I took a big technical test. And passed.

Yay!

I have another week and a half of training and testing, then I will be back up to speed and released to work. 

I always have the thought in the back of my head to monitor my health and be aware of changes.

I remember things that were glaring hints pre-diagnosis: bruising, extreme fatigue, insatiable sweet tooth, unexplained weight loss, loss of muscle mass (Twiggy arms and legs), and swollen belly. I am sure I had skin and hair changes, but I didn't notice that much. Do me a favor and get checked out right away. Trust your instinct. 

I still am ever so grateful to the doctors and nurses as Northside. I wonder about the ones who have moved on to other jobs. I know they are making a huge difference in someone else's life, just like they did for me. I hope they are happy. And I hope the ones who have stayed are happy too!

So, returning to work is another step forward. My health will be closely monitored. I am still trying to get up to date on vaccinations.  I had 4 injections a week ago and am still a little sore.  I know all of a sudden it will go away, but until then, I have this little reminder each time I bump my shoulder. I forget when I am due for more. There will be more until 2 yr post transplant, then antibody testing until 5 year post transplant. Wow. That will be 2020. I will be turning 50. 😳

Next restaging will be in May.  Will try not to thnk about that too much since it's not enjoyable. If I remember correctly, it's really not a big deal. Time heals all, though. I do remember the last bone marrow biopsy didn't hurt at all, but I still had some anxiety going in.

The other big news is the 1.5 billion dollar lottery draws tonight. Can you imagine the hassles associated with that? Well.. I still bought one ticket. I guess because everyone was doing it. If fate wants me to win, fine. But I am 99.99999999999% sure I won't have to worry about it.

So, it's off to bed.  I have a 4 am wake up. Yikes.

Thanks for reading. I hope you are enjoying each day. Remember it can all change in a blink of an eye.

And if you are experiencing a challenge: This, too, shall pass.

Dexter helping me study

Me and Linda

Kent with Annie and Mattie

Me, Melissa and Dave on New Years Eve

Kent and Aaron

Me, Mary and Ross

Darlene and me.

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.