Special little diet

June 8, 2016: 

So I went to a nephrologist for more blood work. They also evaluated my 24 hour urine sample. The good news is there was no protein in my urine, and "it didn't look as bad as suspected."  But they are only functioning at 40%.  

It's at least an improvement. When I was first diagnosed in June of 2014, they were at 20%. Leukemia cells had pretty much taken over my blood, marrow and organs. Oops. Wish I would have caught it sooner. 

The nephrologist wants to see me again in 3-4 months.  For now, I am on a special diet for kidney health. That means no coffee, no alcohol, NO SALT, no fat, no sugar, no dairy (milk, cheese, creamer, etc.) no grains (pasta, rice, bread, pastries, cookies, cake, etc.), no well marblesd meat, no canned or convenience foods, no preservatives, and absolutely nothing that comes in a wrapper.

What does that leave? Fresh fruit, vegetables, eggs, nuts, and lean poultry and fish. What a stark contrast to my neutropenic diet when everything had to be well cooked. 

The way I see it, either I throw 100% of my efforts to fixing this with diet, or I face the possibility of dialysis, or worse, a kidney transplant. That would again suspend my medical and I wouldn't be able to fly. 

No thank you. This diet is my new job. I am 100% committed to making it work. 

July 2

 I have been on this Diet for 3 weeks.  It hasn't been as much of a burden as first anticipated. We go out to lunch as a group often.  I can usually find a salad (no cheese, no dressing) or I simply pack a lunch from home. I have never been confronted by a restaurant worker, but I have my speech all ready. 

Its not easy, especially when traveling. But I bring my food from home, then visit a grocery store instead of going out. 

When I was sick, I had to eat even when I didn't have an appetite. They gave me free reign to eat everything. I especially enjoyed ice cream every evening. But, I kept up that habit a bit too long and overshot my target weight. I went to 134 at my apex. Now, I am down at least 7 pounds and feeling like my old fit self. 

The hardest part is regaining muscles. I was strong like bull. I would like to be there again. And I will eventually. 

Next appointment will be nephrologist in September, late October restaging, and vaccinations in November. 

All is well with my sleepy little family!

Biopsy day

April 21, 2016

It's a lovely spring morning. I was once again able to share the fast lane with my neighbor Buffy. She drove me to the clinic for my "restaging" this morning. I am ever so grateful for her driving me to clinic those 100+ days after my stem cell transplant. I don't know what I would have done. Thank you, Buffy!

It's been almost 6 months since my last restaging. Today's tests include blood work, bone marrow biopsy, and a ct scan of the chest, abdomen, and pelvis with and without contrast. Mmmmm barium....

The blood results came back quickly. My creatinine levels are still up. They say it's my new normal. RBC were down a tiny bit. Everything else was in the normal range. 

TMI alert!

I finally got smart. The worst part about the biopsy so the removal of the compression bandage afterwards. It's a lot of strong adhesive and measures about 6x6 inches. It pulls on each little hair, and I can't remove it by myself. So, this morning, I had the bright idea to shave my back in the shower. Maybe, just maybe, I got the little hairs that make me cry when pulled. Ok. Not really cry, just wince.

All testing was done just before 10 am, just about the time Mom was texting to check on me. Then I just had to wait for Kent to come get me. 

Results: everything came back ok, except the creatinine. Dr. Morris said "since these id yes have to last you 40 or 50 years, you should get them checked out." Yay! 40 or 50 years!

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.