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.