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.

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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04-12-12 Feeling The Love In St. Louis

On a recent quick trip to St. Louis, I had the opportunity to shop at a boutique next to our hotel – Blue Moon Activewear.  (It is actually in Clayton, Missouri.  St. Louis is made up of a lot of little towns).  Cheri has the coolest store…all kinds of workout clothing, and also comfortable active wear that is very fashionable.  For instance, I got a pair of really cute jeans that are actually yoga pants.  How cool is that?  While I was trying on, I admired the artwork on the walls of the dressing rooms and decided to snap a pic.  There were song lyrics from Boz Scaggs in one room and Crosby and Nash in the other.  I instantly knew Cheri is a music lover!  She caught me taking the pictures so we started to visit, which led to my blog, which led to my transplant journey.  Cheri is in the Bone Marrow Registry and is very much wanting to be a donor!  She said something that really touched me, (and yes, made me happy cry!).  Speaking of my donor she said, “He’s going to Heaven”.  I love that!  It all just brings to mind how many amazing people I have met throughout my journey in so many different places.  And how much encouragement and HOPE are generously given to me by Cheri and so many others!  If you are in St. Louis, you will love shopping at Blue Moon Activewear.  And be sure to go next door to Extra Virgin, An Olive Explosion where you will find amazing olive oils and balsamic vinegars from around the world and a tasting bar to try them all.  Also an olive bar, pastas, condiments, cookbooks, serve ware, and all kinds of cool stuff!  I bought an olive oil that is produced very near where my friend Rosanna lives in Catania, Italy. She has a great blog –  rap55.wordpress.com.  Check it out!

To become a stem cell donor, go to www.marrow.org for information.  You might be able to save someone’s life, just like my donor saved mine!

Love your soul and it will love your body…which will love your yoga jeans.”  This is printed on the tag of my yoga jeans.