Monday, November 14, 2011

Andy Beck Memorial Marrow Donor Drive - December 4, 2011


Sunday, December 4, 2011
10:00 AM - 2:00 PM
at the Robert E. Loup Jewish Community Center
350 S. Dahlia, Denver

Beth Evergreen congregant, Jane, will be meeting her recipient, Fran, for the first time, a year after transplant. Jane and Fran will be at the JCC throughout the drive. They look forward to meeting you there!

Registration is quick, simple and safe, and can save a precious life!
  • Good health, between the ages of 18 and 55.
  • Complete a brief medical history and allow a simple cheek swab for matching.
  • Donors remain on the Registry and may be called upon until age 60.
  • Costs are completely underwritten by Love Hope Strength and the JCC.
Tissue types are inherited, and complex. A good match is hard to find. It is up to us with common ancestry to support each other in this lifesaving effort. As the number of donors increases, so do the odds of survival for our loved ones, and others like them.

Dropins welcome, but if you can, please preregister so we can ensure adequate staffing.

Don’t know what being a donor is all about?

Come to an informational presentation:

Tuesday, November 29, at B’nai Havurah, 6445 E. Ohio, Denver - 7-8 PM

Thursday, December 1, at Beth Evergreen 2981 Bergen Peak Drive, Evergreen 7-8 PM

Questions are welcome. Please take this opportunity to meet and discuss the donor process with a donor and a medical professional.

Questions? Ready to preregister?

Call Susan Marcus, 303.526.7330.

Fran Waldman - My Sister, My Daughter, My Friend

After a year of corresponding with a nameless and faceless woman, I was finally able to make personal contact with my patient. Her name is Fran Waldman, and she is alive! She is 100% cancer free and getting better every day.

She and her husband Harvey and daughters Chavah and Dvorah have become part of my extended family. We’ve all spoken on the phone numerous times, traded emails, become Facebook friends. The first time we spoke we could barely get the words out through the tears. In no time, we were like old friends.

I will write more next month after we meet in person. I’m helping to organize the Andy Beck Memorial Bone Marrow Drive on December 4th in memory of my friend Susan’s husband. Fran always said that she would help out anytime and be the face of successful bone marrow transplants. I don’t think she realized it would be so soon! She and her family will be flying into Denver on Saturday December 3rd.

I can only imagine how moving it is going to be to meet Fran and her family. Stay tuned for the stories!

Friday, September 24, 2010

Letter #2 From My Patient, "Lily"

9 September 2010

Dear Angel Donor,

Tuesday we were told that 99.13% of my marrow is now from you and I am thriving.  Thank you again for your generosity and total unselfishness. The doctor was very pleased, as he was hoping for 90-92%. Everything is going well.

Slowly, the taste buds and saliva glands return and I am able to eat more and walk more. I listen to my body and take my medications. The doctors and nurses and support staff have been the most nurturing. In the hospital there are recreational therapists, occupational therapists and physical therapists. Everyone wants you to be strong and social, as much as possible. I am an avid Jazzerciser for 30 years, and my friends made 6 cd's for me to take and dance in my room. Some of the nurses and therapists laughed with joy to see me active.

You contributed 7.78 MILLION stem cells to me, dear Angel donor. I looked up, said a prayer of thanks to you and the people who developed this easier way of harvesting and transfusing these life-saving cells. Then, I fell asleep for the nearly 4 hours of transfusion.

Family and friends donated blood and platelets daily. My daughters and husband often conducted their work in my room, to keep me company. Friends nurtured my family during this time also.

I sincerely hope that you were able to quickly resume your life after your donation. Thank you again. Enjoy the autumn. I will, as I look out on our garden, watch our dogs playing, and I will think of you.


Your Stem Cell Recipient

Sunday, August 22, 2010

A Quote from Osho, Japanese Philosopher

A while ago a friend of mine gave me a set of Zen Tarot cards. I have no idea how to read tarot cards, but I'm always interested in the commentary that each card brings. I try to interpret the commentary as it relates to the idea that I'm thinking of.

A couple of days before my donation day, I took out the cards after not looking at them for months. As I thought about my patient and my process, I shuffled the cards. I focused more heavily on my patient and then picked out a card. It was the 10 of Rainbows. While I have no idea what that card might mean to someone else, I thought Osho's commentary was incredibly poignant to my situation:

"Humanity is depicted here as a rainbow of beings, dancing around the mandala of the earth with their hands joined together in joy and gratitude for the gift of life. This card represents a time of communication, of sharing the riches that each of us brings to the whole. There is no clinging here, no grasping. It is a circle without fear of feelings of inferiority and superiority.

When we recognize the common source of our humanity, the common origins of our dreams and longings, our hopes and fears, we are able to see that we are all joined together in the great miracle of existence. When we can combine our tremendous inner wealth to create a treasure of love and wisdom that is available to all, we are linked together in the exquisite pattern of eternal creation."

So true. Life is a gift that none of us should take for granted. If we all work together in a common goal of spreading love and aid to others, that gift will give back for an eternity.

Friday, August 20, 2010

Peripheral Blood Stem Cell Donation: A Letter From My Patient

While I was on vacation in the Tetons, Tish, my donor coordinator called to tell me that I had received a letter from my patient and that she would be forwarding it to my home. I told her I couldn't wait until I got home - would she mind reading it to me on the phone? All I can say is WOW. This person is becoming more and more real everyday. The connection I feel to her is growing stronger. Here's the letter - it was written before I even knew that I was going to be donating to her.

23 June 2010

Dear Donor,

I learned today that your gift of life will be transplanted to me on 28 July 2010 (it was actually about 5 days after that). To me you are an unknown angel, giving me the possibility to continue teaching special needs students, growing old with my husband, and enjoying my daughters in their adult lives.

The diagnosis of acute myelodysplastic leukemia was hard to accept, let alone pronounce. However, with amazing doctors, nurses, maily, friends, and colleagues, I am in remission, preparing myself with good food and daily walks and exercise for the transplantation procedure. Every time I received a whole blood or platelet transfusion or thought about my Match Unrelated Donor, I thanked God for the angels and miracles in my life.

My family and I wish for you and yours good health and happiness, joy in the beauty of our Earth, and sincerest gratitude for your total unselfishness.

Yours truly,

Your humble recipient

By now, she's about "two weeks old". I say a daily healing prayer for her and hope to God that my "product" is helping to keep her alive and healthy. In 2-3 weeks, I may even get an update on her progress. Stay tuned. I'll keep y'all posted.

Monday, August 9, 2010

Peripheral Blood Stem Cell Donation: An Open Letter to My Recipient

Dear "Lily,"

You may be wondering why I chose to call you "Lily". Well, it seemed too impersonal to just write "Dear Recipient," so I tried to think of names to call you. At first I was going to call you "Annie-Mathilde" after my grandmothers. They were both strong women who came to this country with nothing but were able to build two beautiful families that came together when my parents married in 1948.

But then I though of something else. I've never had children and most likely never will. If I ever had a daughter I thought I might name her after my favorite flower - the lily. So even though I have never known the beauty of giving birth to a child, I hope in my small way that I'll be giving life to you. Even just the thought of giving you a second chance is a legacy that I will be proud to pass on.

I hope and pray that you are doing well. I say a healing prayer for you every day.

All my best, Your Donor

[All contact between me and my recipient must remain anonymous for at least the first year]

Thursday, August 5, 2010

Peripheral Blood Stem Cell Donation: My Personal Experience

Before I could officially donate my stem cells, I needed to have a full physical to make sure I was healthy enough to donate. Patty made an appointment for me at the Rocky Mountain Cancer Center for Friday morning, July 16, 2010. As I walked into the cancer center it was apparent that I, as a healthy person, was the minority. The first person I saw was a woman, probably in her 60s wearing a ball cap to cover her balding head. I immediately thought of my patient. The only thing they could tell me about the person who would receive my stem cells was that she was 62 living with Leukemia somewhere in the United States. Seeing this other woman at the cancer center started making this process for me very real. Seeing everyone else made me thank God right then and there for my health.

My physical consisted of an EKG, a chest X-Ray, more vials of blood, a urinalysis and a meeting with an oncologist who asked me a lot of questions, listened to my heart, lungs, etc. and checked out the veins in my arms. He jokingly told me that if he didn't know any better he'd think I was on Digitalis my heart rate was so slow (50). I explained it was probably because I was half asleep! The night before I returned from a business trip at midnight and had to leave the house at 6:30 the next morning to make my appointment. He did mention that he thought my veins were just "fair" but that the nurses at the donation center would have a better idea if they would be strong enough to handle the aphaeresis.

Not surprisingly, I passed my physical with flying colors and the August 3rd donation was set in stone. On Friday, July 30 I went to the Presbyterian St. Luke's Hospital Infusion Center for my first injection of Neupogen. Because it was my first day they had to take more blood (to get a pre-injection baseline of the levels in my blood), ask me a slew of questions, take my vitals and check my veins. Dr. Rifkin, the oncologist, was right. The veins in my arms are wimpy!

They explained to me that this process was very different from donating blood. My veins were always okay to donate blood because that donation was all based on gravity. I’d sit there, my blood would drip into the bag, and when they got a pint I was done. In aphaeresis, they would need to draw out a larger amount of blood at a faster rate. The veins in my arms just wouldn’t be able to handle this. Alas, they would have to do this through a central line (more explanation about the central line later). About 18% of women and 3% of men find that the veins in their arms aren’t adequate and need to have a central line put in.

Then they asked a question that I couldn’t believe they had to ask: Was I still interested in donating? It’s not my place to judge other people’s decisions, but I couldn’t imagine saying no just because the donation process might be a little more complicated and a little more painful. I had the same feeling as I did when Patty asked if I wanted to postpone the donation until after my vacation. Ummm, I don’t think so! Again, I couldn’t imagine asking a cancer patient to wait until I came back from vacation to start a process that might save her life. So, back to the first question: Was I still interested in donating? Hell yeah!

It was time for the 2 shots of Neupogen. I had them injected in my belly. I could barely feel it. The needles are very thin. It burned slightly as they injected the Neupogen into my stomach, but all in all, no big whoop.

I must have been more nervous than I thought because as they took my blood pressure (for at least the 5th time), it had dropped to 85/45. My blood pressure is normally low (100/60) – might have something to do with living at 8200 feet! I felt light-headed, so they had me stay seated until my pressure rose to 95/55 and I felt better.

Once my blood pressure rose to an “acceptable” level I was able to leave. My cousin Sue just so happened to be visiting from CT that weekend, and she promised to keep an eye on me. We left the Infusion Center and went to spend the day in Boulder. I was told to take it easy and pay attention to any aches and pains that I might feel from the Neupogen. I was prophylactically taking Tylenol, but I was surprised that I really didn’t feel much achiness or pain. I had a little achiness in my lower back, but I was also premenstrual, so who’s to say where it was coming from.

The next day, I went to the Infusion Center at P/SL first thing in the morning for my 2nd round of injections. I hadn’t slept well the night before despite taking Tylenol PM. I wasn’t in pain. I just couldn’t sleep. That is one of the side effects of Neupogen. Because this use of Neupogen is still in the clinical study phase, they asked all sorts of questions about how I was feeling. “Do your bones aches? If so, which ones? Do you have a headache?” Etc. They continued to take my vitals (blood pressure, temperature, pulsox, etc). My blood pressure was still low, but I wasn’t feeling light headed, so they administered the second set of injections. The second set was as easy as the first. They took my vitals again (this would happen multiple times per visit), saw that I was okay and sprung me for the day. Sue and I spent the rest of the day hiking in Red Rocks as I still had little to no pain from the Neupogen.

Day 3: I didn’t sleep well the night before again, so despite having little to no pain, I was really tired. After the third set of injections, Sue and I took it easy for the rest of the day. I knew I must have been tired as I didn’t even have any desire to go shopping!

Day 4: I dropped Sue off at the airport early in the morning and headed back to P/SL. Didn’t sleep well again, and Sue and I had to get up at 5:00 am to get her to the airport on time. Oy was I exhausted. The Colorado Donor Program was nice enough to put me up at the Doubletree Hotel in Denver that night so I wouldn’t have to get up at the crack of dawn on donation day. They thankfully let me check in right after my fourth set of injections. I hit the sack at 9:00 am and barely woke up for my 3:00 conference call. I was actually able to get in about 6 hours of work, had dinner with a friend and then went to sleep. It was the first night that I only took Tylenol, not Tylenol PM. I slept like a baby! Turns out it was the Tylenol PM that was giving me insomnia not the Neupogen! Go figure.

Day 5: Donation Day! At 6:30 am, I met Tish, the donor coordinator who was taking Patty’s place while she was on vacation. I was a full-fledged patient today, so I went through admissions and headed up to the Infusion Center for my final set of injections. One of the things I worried about was whether or not my bone marrow was producing enough stem cells. I really wasn’t feeling any pain – what if that meant that I wasn’t producing enough white blood cells to give the patient? Well, my fears were relieved when they took another blood sample. My white blood count was nice and high. PHEW! The Neupogen was doing its job, and I didn’t even feel it.

Then it was time to head to radiology where they would insert my central line. This, I have to admit, was the least pleasant part of the entire experience. It wasn’t overly painful. It was just weird and uncomfortable. I laid down on a gurney and they covered my head with a surgical tent. There was a small hole in the tent that exposed my neck where the radiologist could access my jugular vein. He injected the area with Lidocaine to numb the area and went to work. I felt like a toilet being snaked! I told him that I didn’t want to see how big or how long the catheter was that they were inserting in me, but it felt like it was going all the way down to my feet. He tried to alleviate my discomfort by talking about our mutual love for folk music, and after 10 minutes, it was over. Again, it wasn’t overly painful, but it was definitely freaky, and it grossed me out!

I headed back up to the Infusion Center where I got into the bed they had prepared for me. I’d be hanging out in this bed for the next 6 hours with nurses Barb, Rhonda, Tonya and Mary. The nurses hooked me up to the centrifuge which would spin and separate the stem cells from the rest of my blood. The stem cells would be deposited into a bag, and the rest of the blood would be returned to my body. They took one more vial of blood – this time straight from the central line – no more pokes! They just wanted to take one last pre-donation baseline of my white blood cells. The count was even higher than earlier that morning. Neupogen works fast!

It was 8:30 am, and I settled into my home away from home. The good thing about having a central line meant that I could use my arms – I could read, surf the net, continue on this blog, post pictures on Facebook, etc. I’m embarrassed to say that I also checked work email and even responded to a few. Yes, I’m hopeless.

I couldn’t even feel the blood moving from my body to the centrifuge and back. Since the entry point where they inserted the catheter was a little sore I continued to take Tylenol after the Lidocaine wore off. It also helped to alleviate my menstrual cramps (sorry to all of you squeamish dudes out there)! Other than that little bit of discomfort, it was like I was just hanging out in bed. I ate 2nd breakfast (they kept raving about the breakfast burritos – how could I resist?) and continued to catch up on this blog. Of course I had to post a picture of myself on Facebook – a friend entitled it Tubezilla. Once the Lidocaine wore off, I felt a little queasy for the rest of the day. I think it was mostly psychosomatic – having a tube in my jugular was still grossing me out! Yes, there is a valid reason why I never went into medicine.

The next 6 hours went by very quickly. Before I knew it, the nurses were getting ready to disconnect “the product” (my stem cells) from the centrifuge. Tish was meeting a courier at 2:45. The courier would transport the product to the airport where it would be flown to wherever the patient lived. It was amazing. She would be starting the transplant later that night! While I was never told where she lived, I suspected that it was somewhere on the East Coast based on the arrival time.

After the product was disconnected from the centrifuge it took another 15 minutes or so for the rest of the blood to be deposited back in my body. Then it was time to have the central line removed. Mary promised that taking the catheter out was much easier than putting it in. It definitely was easier, but for this squeamish patient it was still gross! I actually asked to see the tube – mega gross! It was about 8 inches long and about twice the width of a Q-Tip stem. Ick!

I had to lie there for another 30 minutes so I took my first nap of the day. And just like that, I was done.