Continuing treatment while at home

For the friends and family that follow this blog, it’s easy to see that for the past couple of months Carol has been feeling great and looking even better. She is without a doubt the best example of how a patient should confront this disease. Never stopping her exercises, walks, yoga, cooking her organic meals and keeping her chin up, higher than anyone else I know.

With things running very smoothly it’s surprising to see that her white cells, red cells, platelets and % of donor’s cells counts were slowly getting lower. Her last biopsy showed 85% of donor’s cells, compared with 97% on her previous biopsy.

Dr. Tomblyn explained that the medications given to Carol to prevent GVHD could also be preventing the donor’s cells from propagating and completely taking over Carol’s cells.

As a result, Dr. Tomblyn is now rapidly reducing Carol’s steroid medication giving the donor’s cells less obstructions to complete their job. Another bone morrow biopsy is scheduled for mid November to see if these steps accomplish their objective. Other medications could also be increased or decreased if needed.

Of course, with the steroids soon gone, some issues may appear, such as digestive, skin, loss of appetite, etc.

Wednesday Carol will be getting a blood transfusion at Sarasota Memorial.
Rowing is on hold until platelets bounce back.
Everything else will continue as before.
More updates as they develop.
Thank you.
Jaime

I love you my beautiful sister

Thank you for sharing your very first weekend home with me.
What an incredible, courageous, positive, fun, energetic-beyond-words schvester you are!

All weekend long I just couldn't believe I was there with you in Sarasota -- it was like a most delicious dream, and I'm just so glad I didn't have to wake up to an alarm and a rude- awakening that it was time to get up & go somewhere without you -- there we were...it was real!!!

I was hoping to write something for the blog...I'm not sure what I'd write other than this because there are just no words to capture how joyous a weekend it was to know you're HOME and that your smile, appetite, energy, outlook, sweetness, sensitivity, creativity, humor, joie de vivre (I could go on!) are all quite in-tact. So much joy in sharing some of life's simple pleasures...biking, beach walks, art festival, UpWords, cooking & laughing together.

Reading some of the latest posts and especially Jaime's post from the other day, clearly the depth of influence your journey & attitude has had on those who love you is impossible to measure. For you there may be an endless sense of gratitude for all the love & support you've received. While I'm probably not speaking for myself when I say that we wouldn't have had it any other way, I bet that most of us could not have imagined the degree to which our lives too are forever changed ...we have new strength and love, new ways to cope , that we never thought possible. You may think I am the wind beneath your wings as your cell phone sings when I call, but truly you are mine!

I love you to the moon... and back,
Susan

Carol is back home

This past Tuesday October 12^th. Carol was given the OK to return home after spending what felt like an eternity at the Moffitt Cancer Center, where she was given 2 chemotherapy treatments to condition her for her transplant which occurred on July 7th. 2010 and was done at a special wing of the hospital dedicated only to these types of transplants.

After the transplant she remained at the hospital for about 3 weeks, and only after reaching acceptable blood count levels, she was allowed to move into a nearby apartment. Nearby housing was needed to have quick access to Moffitt if anything unusual surfaced. The stay at the temporary housing lasted another 97 days.

In total Carol had (+/-) 6 months of continued treatment and by no means is she done yet. While at home (YEAH!!) she will visit her local oncologist weekly for lab work , and go to Tampa to have Dr. Tomblyn review her progress and adjust the multiple medications Carol takes.

She is getting back to her “new normal life” at home. She got back into her routines without wasting a minute. Cooking her special healthy recipes, going around the house putting things away, cleaning or doing some laundry. Already taking walks around the neighborhood and riding her bicycle on the trail. With Susan (her sister) arriving for a visit today, walks on the beach are already planned. Rowing could be happening soon too.

After all we went through for the past 6 months, we wanted to thank all of our friends and family for the enormous support we received since Carol was diagnosed with Leukemia in February. Without the help from so many of you, it would have been very difficult to handle.

Very special appreciation goes to the volunteers that took the responsibility to be Carol’s care givers. Many had to travel from far away, flying and/or driving long distances. Many stayed with Carol for days at the hospital and later at the apartment. All gave Carol the best possible care, physically and mentally. A few must have enjoyed care giving, because they came back for more. All that visited for just a few hours or days helped the time to go faster for Carol.
Most of the care givers know Carol pretty well, but some that didn’t know her that well learned what a spectacular women she is. Under such circumstances, Carol always managed to be upbeat and contagious at it too. Always with some type of activity or special meal planned, walks, yoga, cooking and arts & crafts, you name it. There was always something planned.
Every single care giver walked away amazed at what this little person was capable of doing. I am still amazed myself after many years of seeing it.
Daniel created this blog and named it “Keeping up with Carol” without knowing at the beginning that it was the most appropriate title. Any of the care givers can vouch that Carol made them keep up with her schedules.
Also many thanks to all of you that kept in contact with Carol via Skype (especially Isabella), phone calls, emails, texts, etc. all of which helped bring some normality to her days.
Thank you again.
Jaime

Sending Carol Home

First of all, Carol looks cuter than ever as she sports her fashionable doo, hair growing close to her perfectly shaped head in little curls. She has indeed regressed to childhood as she plans to get her childhood vaccines for her new blood tomorrow. Her apartment is filled with her colorful artwork and cards hanging from the ceiling. The atmosphere is filled with positivity and special care is taken to stay aware and present in all we do, especially playing our favorite new game, Upwords. Who says you can’t teach an old dog new tricks?
Carol and Jaime are packing up, getting ready to drive back to Sarasota tomorrow, after 97 days post transplant! Today marks the end of this period in Tampa as the healing continues back home. Each day I’ve been here brought Carol closer to resuming normal life. It’s been a gift to be Carol’s caregiver for 5 days and join in her incredible spirit and gratitude for life, family and friends and last but not least, good nutritious food. It was a milestone when Carol’s port was finally removed from her chest so that she could be unencumbered by apparatus. Today she got the green light from her doctor to resume her beloved rowing and other activities. She still awaits the final results of her biopsy but doesn’t have to return to Moffitt until next Monday.
Much of our time together felt like a wonderful relaxed vacation. Each day was a new adventure in cooking and good, healthy eating. I leave with a wealth of information about new ingredients and delicious recipes. We enjoyed new cultural experiences including the Cuban exhibit at USF, the historic Tampa Theatre which featured the iconic movie, Making of the Boys in the Band, and the best of all, the Dali Museum in St. Petersburg. This was a surprising introduction to the wealth of Dali’s hallucinogenic imagination which delighted both of us. Each day when Carol was permitted to exercise we took our power walks and the grand finale included yoga together today.
Jaime and Daniel arrived today to complete the transition back home. I feel lucky to have reconnected with all of the Grays. But the greatest gift of all was to share this closeness with Carol and be part of her journey home. I dearly love her.
Cousin Freddie

SEASONS OF CHANGE - Good Vibes, Art and parking karma

October 5 2010
What a gift Carol is to me! I have had the blessing of celebrating with Carol on her 90th day in the 100 days of Moffitt Care Plan.(began post transplant). It is so inspiring to see Carol’s inner and outer strength and beauty shining brighter than ever. It is truly mind boggling the awesome power of our bodies.
Arriving Sunday for my holiday in Tampa- the change of season is evident.
Autumn has arrived, with clear cloudless skies, cooler breezes and such pleasant days in the high low 80’s humidity free. The Lakeside temporary home of Jaime and Carols’ offers wildlife at it’s finest with ibis, moorhouse hens, geese, egrets and wood storks!
Not to mention the delicately crafted origami peace cranes residing indoors so reflective of the sand hill cranes that grace the Grays home neighborhood in the Hamptons.
The crisp October air is trans-formative as we walk for an hour in the morning and evenings witness to the change of season. The fall is a time of transition slowing down to appreciate the cycle of life. In the garden of Carol’s days she cultivates play, festivities and celebration. Taking time to laugh and bring laughter to others as she is transitioning back to her home in Sarasota. The Docs, staff and volunteers at Moffitt will surely miss Carol’s upbeat persona and fun humor. It has been a treat to share the experience with her as she attends to the last few appointments, classes, biopsies and for me to witness the affection of the team towards her as she bids a farewell.
The doctors are impressed with the progress and have given her a green light to make the move October 12th!
Café Carol is never to be passed up. Carol’s knowledge and passion for healthy foods is incredible. Each meal and tea break is a calming moment filled with the patience, planning and loving kindness of preparation of the earth’s goodness. I have been turned onto the use of turmeric (note to self.. never use your palm &fingers to use “just a dash”), garlic lime shark, curried cod, asian tilapia, delicious squashes, healing misu, sesame tortillas, sautéed bok choy, yummy chickpea patties and the most Amazing almond, banana muffins!
No festivity would be complete without a decadent dessert..
Dragon fruit!! The delicacy of a hand picked rare dragon fruit.
Sometimes when we are open to the law of attraction we begin to see the effects in our lives. We had been setting intentions with desire and welcoming them in to our life in actions these few days. Thinking about how grateful we were for the dragon fruit last evening… Coincidentally, as we checked in for the biopsy, at the clinic this morning the women admitting us was dressed like a dragon fruit…. if only a pink sweater!
The days progressed with carefree joy … yoga classes, wandering the USF campus which houses the Moffitt Cancer and Research Center. The campus was alive with youthful energy, bright minds, cutting edge science, technology and medicine and arts. It is homecoming week…who would have thought tonight was mechanical bull riding event and tomorrow Bob Dylan!
A magic event that occurred today we had a private after hour tour of the Contemporary Art Museum. The curator recognized Carol and invited us in. Fortunate for me Carol was able to translate the exhibit, which was in Spanish and is a mind expanding look into Cuba, social change, human rights and the decay of 20th century utopia. The arts are a luxury that presents us a place to experience our senses and to check inwards for change.
If only we all could have days like this with Carol. I for one can’t wait till she is home with us in Sarasota!
No wonder this blog is called Keeping up with Carol –just like it is a challenge to keep up with Carol as she glides on the water in her scull , her days are so full it is rewarding to try to keep up with Carol as she excels on her road to wellness.
Donna Smith.