01-25-2014 Flip Flop

A really good sign of wellness is the return of the ole mojo, energy, busy-ness, and not taking the time to blog! I can finally say that I feel like my self again, that person I was before I got sick. It’s been a long journey, a journey worth every step whether forward or backward, a journey that has blessed me with new friends, random acts of kindness, and the belief that chance meetings with strangers weren’t so random after all. It has been a life changing experience, for the better. Deep down in my heart I know I would still feel this way even if my outcome had not been successful. The love, caring, and kindness of others in the face of adversity is, for the lack of a better term, life changing!

Dr. Hosing, my stem cell transplant doctor at MD Anderson Cancer Center whom I dearly love, took me off of my immune suppressant drug, sirolimus, last July. I had a few bouts of minor Graft vs Host issues which were treated. Each time it returned, it was easier to get rid of, until finally, it didn’t return! I credit this to my awesome donor, Robert, and his strong immune system which I now call my own! Robert is one of those blessings of my life changing journey. It is impossible to find the words to express my love and gratitude for Robert, my life saver. A future blog will be about our awesome trip to Chicago with Robert and Theresa last summer when we went to the Chicago White Sox and Yankees game, that highly publicized first game A-Rod played. We had a great time!

OK, now for the flip flop part. Wade and I will be returning to MD Anderson on Monday. This time we are going for Wade, my beloved husband who was the most amazing care giver. Last fall we went to MD Anderson, his first appointment and my checkup appointment. How strange for us both to have medical record numbers and to split up to make all of our appointments! He has a very rare disease called Castleman’s disease. These are lymph node tumors. He has had two tumors removed, the first one was under his arm and removed about 25 years ago. The second one, 7 years ago in his neck, and he now has a large, very vascular tumor in his chest near his heart and lungs, making surgical excision too risky. When this tumor was found last summer during his yearly physical at the Cooper Clinic in Dallas, we knew it was time to head to MD Anderson. My Dr. Garcia-Manero, who treated me at MD until my stem cell transplant, and whom I have the utmost respect and love for, recommended Dr. Luis Fayad who specializes in lymphoma and myeloma. After a pet scan, another tumor was found in his abdomen. Next week he will have another pet scan to see how much the tumors have grown, and a needle biopsy of the tumor in his abdomen. Then we will find out what his recommended treatment will be. There are two types of Castleman’s, one is a single tumor that affects one lymph node and doesn’t recur, and is not hereditary. Wade’s brother has had a single Castleman’s tumor removed years ago, and one of Wade’s daughters has had a Castleman’s tumor removed when she was 18 years old. So much for the non hereditary part! So, this is a nontypical difficult case. Most of the doctors whom Wade has seen haven’t heard of Castlemans since med school! The other type of Castleman’s occurs in clusters and sometimes turns into lymphoma. Thankfully, Wade’s tumors have been single lymph node tumors. We are both very pleased and have the utmost confidence in Dr. Fayad. On our first appointment with him, he played a little joke on us and made us laugh! We are so fortunate to be at MD Anderson, the number one cancer center in the nation with the very best doctors.

I will be starting on a new journey myself, that of caregiver. I hope and pray that I can care for Wade just as he cared for me…selflessly, lovingly, and completely. I will be able to understand the other side of the journey.

New Beginnings – Happy Birthday!

On was the day before Easter Sunday, Wade and I were outside doing some major yard work/cleanup.  Thanks to the drought we are in, there was lots of dirt from dust storms and suffering plants and grass.  Not a pretty sight…  The following morning there was one lonely, lovely purple flower on the vinca growing along the driveway.  I had to snap a picture…it was a sign of new growth, hope, rebirth, new beginnings…all of the things we are mindful about on Easter Sunday.  It was a sign!  I was in awe!

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Two days later, the birth of a new grandchild Ella, Haley and Jon’s first child.  A new beginning!  And since then, new beginnings everywhere in my great big wonderful family and family of friends!  Relationships mended, old friendships renewed, new friendships nurtured, moving on with new jobs and endless possibilities, new opportunities, and graduations from high schools and college.

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On my last appointment at MD Anderson a couple of weeks ago, everything was really good…only a few minor problems.  Dr. Hosing is letting me very slowly try weaning off of the immune suppressant drug I am on, sirolimus.  When I tried this last fall, it didn’t work very well. Graft Vs Host set in very quickly.  There were liver issues, and I was back on the drug.  However, last Monday when I had my blood checked, it was the most normal blood test results that I have had in years!

Today is my SECOND birthday!  Exactly 2 years ago I received stem cells from my donor, Robert.  What a trip it has been!  During those two years I suffered temporary blindness and migraine headaches from drug reactions to tacrolimus and cyclosporin, all of the usual terrible side effects from busulphan and ATG, weight loss of 40 pounds, graft vs host on my skin, in my upper GI and lower GI tracts, liver, and gums, muscle weakness and foot-drop from steroid use for GVHD, deep vein thrombosis in my left leg, and a very rare virus that we stem cell transplant patients are extremely unlucky to get – The dreaded BK Virus!  Then there are all of the emotional issues I dealt with.  Some of the most difficult were friends that moved on without me, chemo brain, and dealing with depression and forgetfulness.

I am not griping!  With my wonderful husband, Wade, constantly by my side, all of my energies, which were mostly spiritual rather than physical (fellow survivors will relate to lack of energy!), were devoted to getting through…getting by…getting well.  Each baby step offered new hope.  Baby steps turned into more normal steps, and sometimes even happy feet!

So, on this special day that I am now 2 years old, I want the world to know that all of those trying times are worth it.  Be steadfast, hopeful, positive and kind, appreciating each day, turning baby steps into happy feet.  We can only have positive outcomes when we have positive attitudes.  I pray daily for positivity in my life.  And I pray for those less fortunate than me.

Speaking of all of these new beginnings, Robert, my donor, is my life saver!  With out his complete and selfless act of love and compassion by giving me, a total stranger, his stem cells and a new chance at life, I would not be writing this post.  He just graduated from college and will soon be entering law school.  Another new beginning!  I know he will be very successful with anything he does.  Robert, you are awesome and amazing!  Today I am celebrating 2 glorious years of new life and new beginnings.  But I am also celebrating Robert!  I love you Robert!  And I love my great big beautiful family!

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01-31-2013 My “New Normal” – Survivorship

After dealing with illness, traveling, the holidays, and not feeling very creative, I have decided to get back to the blog.  To those of you who have worried about my absence, I totally appreciate your concern!  I am doing pretty darn good, all things considered…which has made me give a lot of thought to my new normal.

My friend, Julie, a cord blood transplant survivor, wrote me a sweet note a few weeks ago and mentioned that she was trying to find her “new normal”.  It was nice to have a name for this phase of my survivorship.  As a stem cell transplant survivor, I had been thinking a lot about it myself and struggling.  “Whenever I am off of my immune suppressant drug, sirolimus, I can do such and such” and then, “what if that never happens”.   I had to throw off my rose colored glasses and realize that “normal” will never be the same as it was before I got sick. This doesn’t mean it is particularly bad, it just means my life is different.  It is impossible to go through the journey without being changed.   

The first of December I got sick with a sore throat.  It was the first time I had been sick since my transplant at MD Anderson a year and a half ago.  I totally understand now why we must go through all the things we do to prevent getting sick.  Without much of an immune system (I am still on sirolimus), I became very ill very quickly, was hospitalized, and it took a month to get well.  Which made me realize the importance of compliance.  As time goes on, carelessness can creep in.  I truly realized the importance of all the things my survivorship nurse at MD Anderson had taught me.  I’m really good at hand washing and sanitizing, and staying away from people who are sick, but I had come to the realization that I must live my life like a healthy person out in the real world  instead of staying couped up at home afraid of getting sick.  I guess what started me thinking about all of this was that a  few months ago  I tried to get off of sirolimus, with the permission of Dr. Hosing.  It didn’t work.  It took only a week to have symptoms of Graft vs Host Disease, and much, much longer than that to get back to where I was.  Actually I don’t feel like I am as good as I was before trying to get off of sirolimus.  I am really looking forward to my appointments at MD Anderson next month.  This brings me back to my new normal.

I can honestly say that the things I occasionally gripe about…taking a lot of medicine, chemo fried hair, tiredness, frequent blood tests, feeling isolated, and lots of other “stuff”, are really not all that bad.  In fact I am really proud of where I have been and where I am now in this journey.  It is just a matter of acceptance and compliance.  And remembering all of the many wonderful blessings and friendships that have been given me!  The positive things far outweigh the negative.

So, here it is in a nutshell!  Find your new normal, keep compliant with your meds and care, live life to its fullest, and accept the beauty and wonderfulness of being given a second chance!

 

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10-24-12 Be The Match Donor Drive

Last year after I received stem cells from my donor Robert, Wade said he would like for us to sponsor a donor drive in Hereford and we finally got to do that last Wednesday!  Roberta and Julie from Be The Match came to Hereford from Fort Worth to conduct the drive.  Two newspaper articles, 3 radio interviews, lots of flyers, and getting out to talk to people really helped to get people there.  There is a misconception about the whole process being very scarey and painful.  Hopefully we raised some awareness about the procedures and the need for people to get into the registry.    The new age requirement of 18 to 44 years old prevented a lot of people from becoming donors.  We ended up getting 49 people registered and a sizable amount of monetary donations raised for Be The Match!  For the first donor drive in our community, we were extremely pleased!  The bank employees grilled German sausage for free sausage wraps, and each person who registered got a free t-shirt.  Being involved with a project like this makes me realize how awesome our community is to show support.  I am so grateful to every person who became a donor or contributed money, and to all those who helped in any way with the drive!  You could be the one to save a life…just like Robert saved mine!

Jonathan, our first donor!

Julie, yours truly, and Roberta

Wade and Danny after cooking 300 sausages!

Awesome t-shirts!

 

 

After I got home that afternoon, I emailed Erin Frazier, my wonderful PA at MD Anderson about some issues I was having.  I had quit taking my sirolimus (immune suppressant) about 2 weeks earlier.  Dr. Hosing had given me permission to try getting off of the sirolimus since I had already cut back on them for 2 months and had no problems.  She told me to get my blood tested every 2 weeks to watch for liver GVHD since I had that problem before.   Well….I had GI problems and my blood test showed that my liver function had gotten worse.  In fact I was pretty sick by Thursday.  So Erin told me to get back on the sirolimus, and I have been feeling better every day.  Yay!  I will go back to MD Anderson in February for my check up and a bone marrow biopsy and will go from there.  I guess I am through with “rushing it”!

My dad and sister Jan, were here for the weekend.  We had a great time visiting relatives, friends, family!  Here is a picture of my wonderful Daddy with my sweet Grandkids!  What a great way to end this post!

Until next time,

Holly