Coincidence…or Godwink

co-in-ci-dence noun

A striking occurrence of two or more events at one time apparently by mere chance

synonyms: accident, chance, serendipity, fortuity, happenstance, fate

A few weeks ago Wade and I were in Houston for my 6 month checkup at MD Anderson Cancer Center.  I am a stem cell transplant survivor about to celebrate my 4 year transplant birthday.  It was my 22nd bone marrow aspiration and biopsy…yes, that’s right…22!  All went well with my appointments. My awesome doctor, Dr. Chitra Hosing, gave me a big hug and told me she wished all of her patients were doing as well as I am!  I am still in remission!  After finishing up at the hospital, we headed over to the Galleria to have dinner at The Oceanaire and then a nightcap at Del Frisco’s Double Eagle Steakhouse next door.  After a wonderful meal at The Oceanaire, we sidled up to the bar at Del Frisco’s.  The gentleman sitting next to me was alone, so Wade and I struck up a conversation with him.  He was in town on business, and when he mentioned he was from Philadelphia, I told him that my stem cell donor, Robert, is from Pennsylvania and was a student at UPenn at the time he entered the Bone Marrow Registry and ultimately donated his stem cells to me. Coincidentally, (or not), Gene is a good friend of Andy Talley, the head football coach at Villanova.   From his website, talleybonemarrow.org:  “The main goal of our foundation  is to add donors to the Be The Match Registry®.  Coach Talley has had a relationship with Be The Match® for many years. Together, through the initiative “Get in the Game”, they have organized many opportunities to join the Be The Match Registry across college campuses nationwide. As an extension of its mission, the ATBMF is committed to supporting Be The Match in its endeavors.”  My donor, Robert, has told me that his coach at UPenn, Al Bagnoli, encouraged his team to join the registry.  Coach Bagnoli was influenced to do so by his good friend, Coach Talley.  A year after Robert joined the registry, he was chosen as a perfect match to be my donor.  At 19 years old, Robert saved my life! Getting to visit with Gene was very special to me.  What a great man! 

Was this a mere chance sitting next to Gene from Philly, Coach Talley’s good friend? in Houston?

  A couple of weeks later, Wade took me to Santa Fe, NM to celebrate my 60th birthday, although I feel my stem cell transplant birthday is the one to truly celebrate.  We went to Pasqual’s for breakfast and sat at the big community table.  Two young ladies from Washington DC sat down next to us, Sanam and Amber.  Sanam told me she is working on traveling to each of the 50 states.  This vacation was New Mexico!  They were so much fun to visit with.  They told us of many interesting places they had visited in the Santa Fe area.  I’ve been going to Santa Fe for a long, long time and I learned about places and things I had never heard of!  This was their last day. They were catching a flight in the afternoon back to DC.  When I mentioned to Sanam that I am a stem cell transplant survivor, I learned something truly remarkable about her…she was nominated to compete for Woman of the Year for The Leukemia and Lymphoma Society in 2011!  She was one of twenty Washingtonians nominated to compete for the honor.  She raised a lot of money for this organization!  I felt a special connection to Sanam.  She is a beautiful and amazing woman, inside and out.  She was actually working on this campaign while I was in the hospital getting my transplant!  This truly touched me!

Was sitting next to Sanam and Amber in Santa Fe a mere chance or coincidence?

  Wade, Holly, Sanam, and Amber

Just saying and truly believing, getting to connect with these two, Gene and Sanam, far away from all of our homes was not a coincidence!  It was a Godwink!  And for that I am truly thankful!

What it’s REALLY like to have a concussion! 10-28-14

One afternoon in August, I was swinging one of my grandchildren in the back yard. It was a beautiful day, even though the mosquitoes were thick due to all the rain we had. I got the swing going really high when a mosquito bit me on the leg. When I leaned over to swat it, the corner of the big, wooden swing hit me on the head. All at the same time, I thought about what a loud, terrible sound it made, it was my head, and that oh no, this is not good! After making it into the house, calling my hubby, and using an ice pack, I decided not to go to the doctor. It did not break the skin, but I had 2 large knots and a gushy area in between (a hematoma under the scalp). My pupils looked normal, I had a headache, but everything was ok!

Symptoms, except for a big bruise on my forehead, didn’t show up until 4 days later. I woke up with the bed spins, nauseated, and a splitting headache. Ok, it was time to go to the doctor. After a CT scan, I learned I had a moderate concussion. I was told it could take up to 6 months to heal. A concussion is what happens when trauma causes your brain to slam against your skull which causes bruising and swelling of the brain. Luckily I had no fractures or bleeds. My instructions were to rest my brain so that it could heal. No studying, concentrating, computer work, video games, physical activity. This is a hard thing to do! When we got home, I settled onto the couch to watch television. Pretty soon the TV felt like the volume was turned all the way up and it was screaming in my head! Noise, even soft noise was not a good thing. Then my emotions started to be affected and all I could do was cry about nothing! The headaches got worse. I was in the throngs of a “moderate” concussion.

After a few days the nausea, intolerance to noise, and emotional distress got much better, although I still had headaches 24/7. I had a headache everyday all day. Then I started noticing extreme forgetfulness. Like I couldn’t remember something I had done the day before. I couldn’t think of names. I would go into another room to do something and had no clue what it was. The things I couldn’t remember we’re things you would never forget.

It was time to do get my hair done which is 30 miles away on a divided highway. I had driven very short distances close to home and had no troubles. But when I took off for the hairdresser, it felt like I had never driven before! I had to consciously think about every single maneuver, those that you do that are automatic, that you never, ever think about. Needless to say, when I got home, I was a nervous wreck! It is absolutely unbelievable what happens when your brain is injured, even if only “moderately”. I really can’t imagine what severe head trauma is like.

When I got knocked in the head, it also messed up my neck and back. Since I have arthritis in both my neck and back and a herniated disc in my back, I try not to do anything crazy to mess it up. Well, the swing thing messed that up too! It was off to my chiropractor to get straightened up.

Dr. Jeff Williams has been my chiropractor for several years. His office, Amarillo Pain & Accident Chiropractic Clinic, is in Amarillo, Texas. Being a Dental Hygienist, I have been going to Chiropractors for over 30 years. I can honestly and wholeheartedly say that he is absolutely the BEST! He is always attending seminars and training to stay up to date with the latest in Chiropractic care. His staff is well trained and friendly. Dr. Williams is caring and honest, and on top of that, a very talented musician and artist!  If you get the chance, go see his band, The Flying Elbows.  They are awesome!

A little over 2 months after I got my concussion, I still have some headaches. I feel like my brain is not completely healed because I still have a few of the above mentioned side affects, although they are so much improved. I am getting better every day. My neck and back are so much better, thanks to the awesome and amazing Dr. Williams.

One important thing I learned from my retina specialist, Dr. Edward Ysasaga, in Amarillo, is to take B Complex vitamins. He said that the B vitamins help the brain to heal. I’ve been taking them for over a month and truly know that it is helping. I’ll blog about Dr. Eddie Ysasaga another time.

As a stem cell transplant survivor, the survivor mode comes out in me when I experience these blips along the way. It is because of the awesome doctors who care for me and the road I’ve already been down that I know everything is going to be OK!

Nasty Melanoma 10-14-14

The dreaded yearly skin test….my first at MD Anderson was on May 29th of this year. I had been checked several times in years past by a dermatologist near my hometown and was told everything looks great! When Dr. Sharon Hymes, whom I had seen before at MD Anderson Melanoma and Skin Center for graft vs host skin issues, came into the room and looked at my makeup and concealer free face, she instantly started asking me about the spot on my left cheek. She had questions…how long had it been there? Several years. How long has it been two-toned? I don’t know because I have used bleaching creams and thought only part of the spot responded. She told me we needed a biopsy.

This seemingly innocent, annoying “age spot” was about the size of a pencil eraser. It was completely flat and smooth. The top half of the spot was a darker brown than the bottom light brown or golden color. When I asked Dr. Hymes what she was suspicious of and she told me melanoma, I was shocked! This spot was nothing like I imagined a melanoma to look like! I pictured a melanoma to be dark, purplish, blackish, globby, irregular.

So a biopsy was done. The top darker part of the spot was “shaved” and sent to the lab. The rest of my skin test went well, thank goodness! Now it was the waiting…do I really have melanoma? What if it isn’t contained? What will my face look like? I’m a stem cell transplant survivor…do I really have melanoma? Here is a photo after the biopsy had partially healed. I don’t have a good close up of the spot before the biopsy.

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A few days later, I got the call, and it was melanoma in situ, lentigo maligna type. I was set up for an excision with Dr. Valencia Thomas at the MD Anderson MOHs and Dermasurgery Unit. Dr. Hymes had presented my case at the dermatopathology faculty conference and it was decided that my melanoma was not a candidate for MOHs surgery. These faculty conferences at MDA are an awesome thing! Several top notch doctors discuss and decide the best possible treatment.

I instantly loved Dr. Thomas! Besides her excellent credentials (Harvard, Harvard Med School, numerous awards and honors, and the list goes on!), she is caring, compassionate, funny, professional, and an excellent surgeon. She took a lot of time explaining melanoma, the flap excision surgery, and the healing process. The actual excision went quickly. But she spent some time suturing! She is really really good with a needle and thread! This photo was right after she sewed me up.

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I had very little pain, just soreness. A week later I went to the Texas Tech Health Sciences Center Dermatology and MOHs clinic to have my sutures removed by Dr.Ikue Shimizu. She had done a Fellowship at MD Anderson under Dr. Thomas 2 years ago. Dr. Thomas was very confident with her removing my sutures and Lubbock is only 100 miles away verses Houston at 650 miles. Dr. Shimizu was great! The suture removal went very well. I was happy to get rid of them!

Everything progressed nicely until I developed a large purple bump on my incision. It got larger and larger and I could no longer resist popping it! The nurse had told me that the inside sutures sometimes work their way out before they are dissolved and I thought this was happening. It turned out to be a spitting suture. I had emailed Dr. Thomas a photo of it and she put me on doxycycline and told me it would resolve. It did! Evidently I had a reaction to the suture material. She emailed me a research paper she had written about spitting sutures. The photos in the paper looked just like my bump!

Two weeks ago I went to see Dr. Thomas for my follow up check up. I’m still having a reaction to those inside sutures. She gave me a shot into the incision site where I have 2 knots or bumps to see if they resolve. On Nov. 10th I will see her again and more than likely have another surgery on the incision. The spitting suture and the bumps have caused the incision not to heal properly. She assured me that when we are all finished and healed, it will look just like my other cheek! She truly is amazing and brilliant and I have complete confidence in her! I will post a photo and follow up after I am completely healed! Here is a photo of me and beautiful Dr. Thomas two weeks ago at my follow up appointment. Even with the suture problems, my incision looks better than I ever expected it to look!

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Bottom line…I am so thankful that I saw Dr. Hymes and that the melanoma was contained and had not spread. I am so thankful for Dr. Thomas and her excellence as a surgeon. Please get your annual skin checks and wear sun screen. I will get skin checks every 6 months now, and I will go happily! I’m a survivor! Most importantly, I’m a survivor because of the best Doctors at the #1 Cancer Center, MD Anderson! I can do this!!!!!

Three Years Out….just thinkin

Today is my 3rd birthday!  Three years ago I received a stem cell transplant at MD Anderson Cancer Center.  For the past week, I’ve just been doing a lot of thinking.

Thinking about Robert, my donor.  It was because of Robert’s totally unselfish, brave, and life saving act of donating his stem cells to a complete stranger, that I am writing this post today.  He was 19 years old at the time.  Even if he wasn’t my donor, I would still be completely impressed with Robert!  We had a great time together last summer in Chicago, along with my husband, Wade, Robert’s girlfriend, Theresa, and friends, Josh and Nicole.  Since Robert and I both like baseball, we attended a major league game in Chicago, the White Sox vs the Yankees (on that very day it was decided A-Rod could play…we sat 13 rows above 3rd base, and it was awesome!).  One perfect moment of this trip was getting a cab with Robert that had a Be The Match ad on top of the car with a photo of Robin Roberts!  It was mind blowing, and I really don’t feel like it was a random thing! 

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Thinking about how my life has changed.  I have a new ability to see people and things differently.  Call it intuitiveness, perceptiveness, achtung.  My priorities have changed.  I see things differently.  I have felt more connected to people, more caring toward people.  Just one example…last year while staying at the Greenbriar in West Virginia,I felt compelled to make friends with the doorman who has been employed there for more than 50 years.  We became great friends, and have in fact, corresponded.  His name is Frankie, and he is a loveable, perfect gentle man. He was very cautious not to breech any confidentialities, but did tell me Bob Hope was one of his favorite guests!   He was going to church that night and put me on their prayer list.  Here is a photo of Frankie and me.  (And go to the Greenbriar if you can!  It is an unbelievable place!)

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Thinking about MD Anderson Cancer Center, what a great institution it is, and how many lives they have saved.   Thinking about how caring and professional the staff is.  And my Awesome Doctors!  They truly are the best, the cream of the crop, unparalelled.  Dr.Garcia-Manero, my MDS doctor, and Dr. Hosing, my stem cell transplant doctor.  I can’t thank them enough!

 

Thinking about my husband Wade, my care giver.  He truly gave me the best care in the most loving, understanding way.  He provided me the opportunity to receive the best care in the world at MD Anderson.  And his caring and love never ends!  Thank you Wade!

 

Thinking about my family and the sacrifices they have made for me, and the unconditional love they have for me.  Thinking about my adorable grandchildren whom I love deeply am able to act normal and crazy with now that I am well.  This thought brings me back to Robert…

 

Thinking about Robert, who made this all possible for me.  Thinking about how thankful I am for him.  Thinking about how alike (but different) we are.  Thinking about how much I love him.  Thinking about how excited I am to see him and Theresa in just 3 1/2 weeks!  Thinking about how it was a “meant to be” thing that he joined the Be The Match registry.

 

It’s been a wonderful, eye-opening, blessed, amazing journey!  Thank you Robert!

 

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Wade, Holly, Robert, Theresa

02-13-2014 Results!

Wade heard from his PA yesterday concerning his needle biopsy…finally! And the results were good! The new tumor is just “tissue”, not cancer, not Castleman’s, just extra tissue. The tumors have not grown in size which is also great news! Dr. Fayad will be in touch soon to discuss what is next. We are so thrilled! And very thankful to all of you for your comments and concern. I will keep you posted when we get more news.

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.

Potential donors…. yay!

Back in October, Wade and I sponsored a donor drive with Be The Match National Bone Marrow Registry and 29 people did the cheek swab and entered the registry.  We were a little disappointed because the guidelines had been narrowed by the registry by age restrictions, so only 29 people were able to get in due to the new age limit of 44 years old.  We could have entered a significant amount of people if the age limits had not been lowered.

Two of Wade’s employees have been notified that they are potential matches!!!!!  Yes, out of our 29 people, 2 are potential matches!   My heart is singing and my feet want to dance, except that they are 2 left feet!  This is a huge deal for me, not to mention 2 other people out there who must have a donor in order to live.  Thinking about Robert entering the registry three years ago and then saving my life, I am humbled by this act of giving.  Angie, when she received her letter that she might be a potential match, ran to the bathroom and fell to her knees and prayed that she would be the one!  Libby is wanting to save someone’s life just as well.

So I am begging all of you to get in to the registry.  It is a simple cheek swab.  You could be the one to save a life just like Robert saved mine!  I am overflowing with happiness and joy.

Marrow.org will get you there!   You could save someone’s life!

 

P.S.  I just got to 30,000 views…thank you so much!  My heart is so full and happy!