Long time no talk...

It took a while to be able to log back into this blog, though the desire to do so has existed for some time.  There just does not seem to be quite enough of that - TIME - to do everything I'd like to do.  Anyway...

I AM 10 YEARS POST TRANSPLANT...AND STILL CANCER FREE!

Thank you, God!

About this time, 11 years ago, I'd just gotten laid off from my job.  Wasn't feeling well...at all.  Two weeks later, I finally visited the doctor only to be hospitalized that night.  My hemoglobin was 4.6.  Not good.

After induction and several rounds of chemo, I was blessed to be matched to a PERFECTLY matched donor.  Six months after diagnosis, I received my stem cell transplant.  

I was so blessed!

Ten plus years later, I am here...still a part of my kids lives, which was the drive behind my fight.  After I reached that 10-year pinnacle, my daughter cut her very long hair and donated it to an organization that makes real hair wigs for kids and women who are also battling cancer and have lost their hair.  She'd spent years growing her hair out with that intent in mind.  Such a thoughtful thing to do...paying it forward to others in need.  She remembers me being sick, she was old enough at the time.  My son was so young, he really has no memories of the time.  My daughter's curse...my son's blessing.

 

I am so glad I created this blog when I did.  I read through some of my old posts, and do not have any actual recollection of a lot of what I recorded.  If you are reading this blog, and are the one fighting for your life, or supporting someone you love who is, and reading my journey helps or lends you any comfort that this battle can be won...I am so glad.  

Don't give up, my friends, no matter what you are going through.  

I will forever be grateful to my family and friends for being here/there for me as I went through this whole process.  Without God, my kids, my donor and YOU, I do not think I would be here today.  

God bless you all!  

D

Happy Fifth Birthday to Me!

Has it really been five years?  Wow!  I am happy to say I have reached this pinnacle and am still cancer-free. Though the doctors do not like to use the word “cured,” I have been told that the odds that the AML returns are very small.  So I will use the “H” word...as in HEALED!!!

I continue to experience minor GVH. I think what it is coming down to is that my body no longer metabolizes food like it used to/should resulting in lower vitamin/mineral absorption. I have found that such a thing results in many of the symptoms I encounter. Super dry skin, eyes and scalp. Joint achiness. So I take supplements, try to eat/drink things high in what it seems like I am low in, and drink a lot of Poweraid.  I have developed allergies I did not have before.  The egg allergy comes and goes...which is very odd. I just have to keep a supply of Benedryl handy.  Other than that, life in this “new normal” is just that...normal!

I wish Mom were here to tell the good news to. She passed away a year ago. But she knows...

Thanks to all who continue to love me, listen to me, and continue to be supportive of me and my kids as I continue to Get to Dianne 2.0. 

Before:  https://www.facebook.com/photo.php?fbid=4913821129946&set=a.2386416426408.2150734.1430709439&type=3

During:  https://www.facebook.com/photo.php?fbid=10201233204018746&set=a.2386416426408.2150734.1430709439&type=3

Now:  https://www.facebook.com/photo.php?fbid=10216321006804386&set=a.1581775190880.2087070.1430709439&type=3

Happy 4th Rebirthday to Me!

Four years ago today I received the cells donated to me.  I remember the nurse attending my transplant telling me how unusual it was to receive so many cells. Most patients only receive half the number I was receiving. I already felt blessed to have had a perfect match found to receive my transplant from.

Today, I am so grateful to be here...telling you I am still "cancer free."  Woo hoo!  Minor GVH issues continue to necessitate the need to remain on a low dose of steroids; we are hoping to ween off them "soon."

Only one more year until I am "cured."

Happy 3rd Rebirthday to Me

Wow. It is so hard to believe it has been three years since my transplant. Those years, in hindsight, went by in the blink of an eye. At the time, well, it still went quickly. 

I have had the opportunity to make contact with my donor, Katrin. We have had many questions of one another. It is a really neat process getting to know more about her and her family.  I have been able to confirm that, no, she is not allergic to eggs. Something I appear to have developed at least to an extent. 

There is still healing and change occurring every day. My tastebuds have, for the most part reawakened; some things taste just a little bit off. Anything artificially sweet. I still love spicy foods but cannot tolerate as much intensity as I once could. I have developed an affinity for Italian food and red sauces I didn't really care for before. My hair is growing out nicely but still thins at the temples and on top periodically. It thins around the time that my face breaks out in what looks like acne but feels like a heat rash on my face, neck and back. My eyes are intermittently (or is it alternatingly?) either so dry my eyelids stick to them like suction cups, or so wet it looks like I am crying - there isn't a whole lot of in-between. So, after being off all meds for about 2 years, I am back on a low dose of steroids to control the skin and scalp issues believed to be caused by GVH. Even at that low dose, however, I have gained 20 pounds (not good), and I have an even quicker temper. It isn't nearly as bad as the higher doses from the past, but STILL!   It does seem to be helping some with the eye issue. Steroid drops to the eyes work really, well but aren't a long term solution, though, as they can stain the cornea. =0(

Back to that egg allergy, I have found that I cannot have caesar dressing and if I "want" to have eggs over easy (or with a runny yolk), I had better take a dose of Benedryl in advance. I have to keep Benedryl in hand just in case something gets through with runny or raw egg in it. Having your tongue and throat swell up, keeping you from breathing is pretty uncomfortable and scary!  Flu shots are ok. Hard boiled, fried, scrambled, or omelets are ok. Prior to getting sick, eggs and chicken were my primary source of protein.  For a time, afterward, I couldn't stand the taste, smell or texture of chicken. I am happy to report that that particular issue has been resolved. I am still not a big red meat or pork eater. 

My energy levels have been much better. I have to say, this has been the slowest to truly recover, overall. 

The kids and I have taken up biking together. That is a lot of fun and brings back good memories of my parents and brothers and I riding our bikes 6 miles round trip to have a picnic lunch at the park. I see some bike rides to the park in my kids and my future!  I have had an opportunity to spend some good quality time with the kids. At school events, with friends. We even figured out how to pitch our "easy to set up tent" in our backyard for sleepovers with friends (adults must overcomplicate it because it takes a couple of 12 year olds 5 min to set up and much longer for the adults). We still have to master taking it down and folding it so it fits into its own case, but we are getting lots of practice. 

I am ever grateful for this second chance at life and for those family and friends who have stuck by me through it all. Grateful for my donor and her family for their generous gift of life. And to my doctors and nurses at MD Anderson and Mayo, for your compassion and expertise and guidance over the years. I truly do not know where I would be without your encouragement and support. 

Love to all,

D

A Happier By Far Thanksgiving

Three years ago today I was going through one of the most difficult times in my life. I was sicker than a dog because of the toxic cocktail coursing through my body, killing the cancer that tried - and failed - to take my life. I got to spend Thanksgiving in the hospital that year. But I was still thankful. 

This year, Thanksgiving will find me more grateful than ever. I am here. I get to watch my kids grow up and participate in their lives. The hurt and anger of relationships gone wrong is subsiding. My heart is healing. The side effects from my stem cell transplant are evolving away. My taste buds, after about a year's hiatus, are returning. My skin is clearing. My hair is thinning less frequently. I am hoping the issue with my eyes also goes away...soon. I am surrounded by family and friends who matter and love me. I get to speak to fellow patients and survivors and encourage them along their journey. I am growing in my faith and understanding of God - without whom I could never have achieved any of this. I count among my friends some of the nurses and staff who helped me in my journey to beat cancer, including Beth Chapin (who looked me in the eye and cried w me during my first biopsy), Mary Peterson (who was a bad ass mama bear/patient advocate, fighting for and educating me along the way), and Stacey Hayduke (the best people ice packer, shoulder to cry on and generally keeping you healthy so the toxic cocktail can do its job). And I am grateful to have the continued opportunity to get to know my donor, Katrin, whose cell donation saved my life. 

I pray you have much to be grateful for, too. Happy Thanksgiving everyone!

TAG!!! We Are Both "It"

I am so incredibly happy to have an opportunity to get to know my donor, Katrin! We are asking questions back and forth via email. She lives in Euskirchen, Germany and is married with two children who I believe are in college. 

Thank you, Jesus, for making this possible!

State of the Dianne 2.0 Union

An update on my recovery. 

My hair is thickening up and growing out faster. Hooray!  A few grays but not too bad. Oh, and yeah, my hair actually has some curl to it that it did not have before. 

My eyes have improved with the assistance of meds. No more constantly tired, watery and irritated eyes. 

I have determined I must have developed an allergy to eggs in the form of over easy, scrambled, omelettes, boiled, fried, etc.  My throat feels like it swells up and my stomach gets super upset. I can eat things that have eggs in them, though. I used to eat eggs all the time so this change is a bit "painful".  I can live with it though. 

My face continues to break out. It feels like puberty except my skin is now dry vs oily.  Work in progress. 

My weight loss has slowed now that my taste buds have returned and I can eat again. I have lost 75 lbs.  While I needed to lose the weight, there is nothing to fill out the wrinkles that have cropped up around my eyes and on my neck. I feel like I look older than I am. 

My taste buds did return. At least some of them did. I think some are taking an extended vacation. Maybe some have defected. My sense of taste is still off in that I do not taste salt or sugar well but do other spices. I do not really like chicken any more, though I force myself to eat some for protein. I like shrimp and salmon but that's about it for seafood.  I can eat beef once in a while. Do not like pork. Do not care much for milk - probably because I cannot taste it very well - but do like yogurt and some cheeses.  Love fruits and can taste many of them.  Like most vegetables but not big into salads. Bummer!  (Seriously!). Do not like ice cream, candy, cakes, etc.  Imagine all of these sans sugar. Yeah, thats why.