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. 

We Have Contact!

I just received contact information for my donor!   I am beyond excited at the possibility of getting to know more about each other.  I hope she is as interested in doing so as I.  That she consented to provide her contact information says she might be.  Thank you JESUS for making this possible!!!  And to the beautiful soul whose donation enables me to continue to be a part of my kids lives... DANKE SCHON!!  <3

Feliz Quatro de Mayo

My daughter and I on this day, as good an excuse to eat yummy Mexican food as any!  A Girl Scouts meeting scheduled for May 5th meant we had to "celebrate" a day early. 

Thank you, my sweet donor, for making this possible. Always in my thanks and prayers...

D

Happy Two Year Birthday, Dianne 2.0!

It doesn't FEEL like it has been two years since I received a second chance for life. Two years ago today, I received my stem cell transplant...six months after being diagnosed with Acute Myeloid Leukemia. I feel good!  Not a day goes by that I am not grateful. So much change!  

I have experienced minor GVH over the last two years and was hospitalized last summer for pneumonia, but have had a relatively uneventful recovery. I have lost 70 lbs. My taste buds have returned after being on hiatus for about nine out of the last 12 months. I truly eat to live today, there is no "wow" no matter what I eat but I am fine with that. My hair grows, thins and regrows about every six weeks. I sometimes feel as if I am going through puberty all over again when my face breaks out...weird since my skin is very dry now. I have been beyond post menopausal for over a year now. My eyes, at times water all day long. My allergies are worse. I do not have the stamina I once had but little stops me when I want to do something. I tire more easily. I have gotten to spend a lot of quality time with my kids over the last two years and that I wouldn't trade for the world. My daughter tells me she does and doesn't want me to go back to work.  She likes having me at home.  There are a lot of things and people I do not remember from that first 18 months following diagnosis. I feel bad when someone remembers me but I do not remember them. Hopefully they'll accept my 'chemo brain' excuse, it is real!  =0).  

Thank you, Jesus, for healing my body and making Dianne 2.0 possible. Through You all things are possible!  I am in awe.  Thank you for bringing the collection of people you did into my life to get me to this point, and for removing those whose influence were either no longer necessary or just not positive.  To my donor, with whom I may now have an opportunity for direct contact, THANK YOU for your gift. You have made a difference in my health and life. My kids still have their mom, and my parents and brother still have their daughter and sister. I will forever be grateful to you. To my friends and family, you helped me weather the ups and downs this journey has had, cheered me up and kept me sane. To my doctors and nurses at MD Anderson, Banner Gateway and Mayo Clinic, your expertise and skill got me to now. Mary, Beth, Stacey, Deb, Mark, Brian, Gulnar, Kayla, Nena, Margo, Jennifer and Drs Slack and Ulrickson...THANK YOU. 

Happy rebirthday to me!