6 months Post Transplant

Tomorrow will be my 6 month anniversary since my stem cell transplant on April 18th, 2014. I left the hospital on May 5th. My updates are now monthly unless something major happens. I hate to dwell on myself as I am feeling stronger and stronger and there seems to be less significant changes from month to month. My appetite is getting back to normal. I rarely get nauseas, except during my week of chemo. I am still taking a low dose of chemotherapy (Vidaza) 5 days in a row every 28 days. So about once a month I'm feeling blah. But not bad enough that I can't go about my normal routines. The chemo usually drives my white count down so I have to be extra careful about being around sick people during that time. My next dose will start on Monday, Oct. 27th.  

The hardest part of the recovery for me at this point is always watching with a hawk eye what I am choosing to do and where I am going to be ending up. I still can't hug people and that is REALLY hard. I LOVE hugs! I have to be very careful with hand washing and sanitizing, wearing my mask in crowds or in the hospital, not standing too close to people or trying to sit farther apart. And of course I have to avoid being around anyone with an active infection. They say October through March is critical for us transplant recipients due to the flu season. A lot of bugs are going around out there already....and then there had to be this Ebola scare!! By the way, my nurse practitioner who meets with Jerry and I regularly about "survivorship" issues explained that I should tell all my close family and acquaintances to get their flu shot!! Not the one that gets swabbed into the nose, but the actual injection kind. (The one in the nose is a live vaccine and that's not good for me either). I am learning that my body is not able to fight an infection like the average person. So should I contract anything, it would likely lead to hospitalization and could be VERY serious. It's a hard concept, because I look like I'm doing so well. I will receive my first 6 month vaccinations soon.

I still have to watch my food choices, but now that I am off the tacrolimus (anti-rejection medication), I am given more leeway about what I can eat. I still have to avoid buffet style meals,
especially fresh vegetables and fruits in that setting. I can't have any raw fish/sushi, or any other raw meats.

And for the rest of my life I will need to be extra careful to wear sunscreen, hats and sun guarded garments when I'm outdoors. If you know me well, you know I LOVE OUTDOORS! I had just started to learn golf before I was diagnosed. Have my new clubs, golf wear and all. I haven't approached my nurse practitioner or doctor about when or if I can get out in that much sun. It seems so hot to wear long sleeves while golfing in June. But where there's a will there is a way. So eventually I'm hoping to golf twilight hours. But I will most likely wait till I get closer to my one year anniversary. The reason for the sun scare is that too much sun exposure can activate a GVHD (graft verses host disease) in my skin. Also my chances of getting a new cancer....melanoma is a big one...are highly increased! I have been following one woman's blog who has received a stem cell transplant at MD Anderson two years ago. They just discovered melanoma on her face. YUK! Kinda Scares Ya! Maybe that's a good thing! At the same time they don't want you to hibernate in your home and become depressed. That is NOT a quality of life unless your called to be a hermit!

I am still receiving physical therapy for what started out as a frozen shoulder. Now my Physical Therapist, Julie, says it's thawing! She's doing a great job and I almost have full range of motion and rotation. There is still pain with certain movements, but it is sooo much better. Maybe I'll remember to take a picture of my PT next time.

My last bone marrow biopsy was on Sept. 29th. The results came back looking really good. Still in remission! Thank the Lord!!! I still have to face the reality that it could come back. According to Dr. Champlin, 33% of the patients who go into stem cell transplant have a recurrence. He also quoted that 33% of those patients will see a cure...and  I am still hoping for the last 33%!!

Finally, in September,  Jerry and I were able to go to Colorado Springs for his company's executive board meeting. My first long trip in which I ventured out of the state. It was scary to be away from the safety net of my major cancer center. I dutifully wore my mask on the airplane and sanitized everything on the plane near me thoroughly! But everything went well and obviously we made it back without a hitch. The weather was beautiful and scenery was fabulous!
We were able to stay at the beautiful Broadmoor Hotel. Praise God for such beauty He gives us to behold!

 These are photos the professional photographer took of us at the Broadmoor.

 This is Velma, the nurse who give me my chemo injections!

This is my sister in-law, Claire, who never wants to be photographed. She is such a beautiful person inside and out. She accompanied me to MD Anderson to have my bone marrow biopsy and chemo in September when Jerry was out of town. Don't know why she's photo shy. But I finally twisted her arm to allow me a "photo sharing moment"!

Thank you all so much for my continued support and prayers! It means so much to me that so many people I still run into say that they are keeping me in their prayers. Air hugs back at ya! And by the way...I thank God everyday for all the people he has put in my life who bring me support and love!