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.

The Student becomes the teacher

Confused? You won't be.

It's so nice to be here again as caregiver.I have treasured my time with Carol as much as I did all those years ago when we lived so close and spent so much of our time together.

But to explain my first comment. Each time I've been here I have brought art and craft projects to get the creative juices flowing and lift Carol's spirits.

( Of course Carol's spirits haven't needed much lifting through most of this, she is the one that lifts all of our spirits)

That being said I'll tell you what happened this time. Carol taught me an incredible new way of beading, it's called "Peyote stiching" and it is so sweet and beautiful. Something I don't think I would have tried had she not started me. So as I said, the student has become the teacher.

This has been an incredible experience for me. One that has shown me the strength and generosity of the human spirit, in so many people, in so many places and in so many ways. I have done some healing of my own. I won't go into it, but thank you Bari and Sharen. If you read this blog, know that you have given me back my inner balance.

If all goes well , the next time I'll be with Carol it will be at home in Sarasota. And very soon too!

Girls Whirlwind Weekend...

Hello Everyone,
This Saturday, after Jaime and I went for our morning walk, he passed the helm to our wonderful friend and neighbor, Cathy. Since she is one of our experienced caregivers, no instruction was needed other than letting her know I was given permission to drive, so we dove right into lunch and non-stop catching up, then went right for the Upwords game. Two of them, actually. My new cells have proven to be much better, but still there's just no beating Cathy. And in her own words:

What a Difference a Month Makes
We had such a fun girls' weekend full of firsts...Carol drove for the first time since June...I had Bok Choy and Dragon Fruit for the first time (not together)...we both were enchanted for the first time by the exquisit Tampa Theater where we saw Mao's Last Dancer (thanks for the recommendation, Natalie!). I was so tickled to see Carol's much improved energy, appetite and hair! She is looking and feeling so well!
Cath

Back to me...Sunday morning after our power walk around the lake we went to the clinic for my blood work, (which I drove to!!!!) Then lunch and off to Tampa for the film, which we totally enjoyed as well as our self tour of the theater. Then we took a drive in and around downtown Tampa, Bayshore Drive, Tampa University and even over to Ybor City to check out the main street. It was a beautiful afternoon and a great gift for both of us to be having more fun than having to give care!

Just a short update and much thanks to Cathy for driving up to Tampa to be my caregiver, yes those are still the rules 24/7!

Love to all,
Carol

Busy week!

Good Evening Family and Friends. This week has been full of surprises and adjustments, mostly good and wonderful, some adjustments nevertheless.
Monday morning my cousins Frankie and Sandy told us they had been taking care of their 7 year old granddaughter who was sick with a sore throat, cough and fever and had not recuperated yet. Together we decided it was not a good idea for them to be in contact with me and we sadly canceled our fun 4 days together. They won’t get gipped though, they’ll be visiting in Sarasota as soon as they can!
Daniel was with me and in the afternoon during our appointment with the P.A. I asked if I could go home for a few days due to the circumstance and was granted permission since all was going so well! I could have left Monday afternoon, but didn’t want to miss my very special 5:00PM yoga class or my Tuesday midday class. Jaime came up to take me back on Tuesday afternoon since Daniel had plans in Tampa, and home to Sarasota we went! Upon arrival my Dad and Joyce invited us out to one of our favorite restaurants, Veg, in Gulf Gate. All of our dinners were delicious and such a treat being out in good company.
Wednesday morning I took a wonderful walk with Daniel, the air and the breezes were wonderful, even through my mask, and as always Daniel’s long legs gave me a good workout. Upon arrival back home, my precious friend, Chris, pulled up laden with gluten free bread and scones so it was an automatic mid morning tea/coffee time with lots of good chat time and hugs.
Being at home, my own shower, having slept in our own bed and just enjoying being in our home was sweeter than I had imagined. Later that evening I made a big yummy soup and we got to share that with yet another precious friend, Jeri. Again, lots of long overdue hugs and good conversation.
Thursday morning was my first time on my bicycle since June and …you guessed it, just like getting back on your bike! I rode around the neighborhood a little and to my parent’s house, “picked up” my Dad and off we went for a beautiful walk! After my return and good shower…you guessed it…another precious friend, Mimi came for lunch and brought the most yummy zucchini muffins made with the most delicious and healthy ingredients…still being enjoyed! Conversation with Mimi is always good, fun and in Spanish since she is from Colombia and she doesn’t even realize what a treat that is for me!!
In the meantime, Daniel found out he is being promoted again, this time to manager and will be working at a Radio Shack out of the mall on the north side of Tamiami …for those of you who know Sarasota. Great job Daniel! We will have to make some caregiving adjustments as his days off will change and I will be missing one of my favorite caregivers and game players! Luckily, not for much longer.
Ok, one more evening plan, one more precious friend, Donna, and yes, more food since our “yoga on the beach” plan got washed away with the rain. Another cup of tea (my doctor is going to be so happy that I’m drinking and eating enough!) and given the time, Jaime, Donna and I went right into dinner with three way conversation in between bites and spoonfuls.
This morning, Friday, we packed up and were back in Tampa for our appointments at the clinic for blood work, dressing change and doctor’s visit. All went well and a few questions were answered. I am allowed to drive with someone in the car for now…what’s the point…and by myself once home and will not need a caregiver 27/7 anymore! I need to be very careful not to come into contact with people who have had the live flu vaccination and out in public where I won’t know who has had that one, continue wearing a mask and being super anal about washing hands and not touching things and then washing some more. I will be vaccinated before I’m discharged, which brings me to the next answer we got. Assuming my bone morrow biopsy results are as good as my last one, and everything else continues to go well, I will see my doctor on Monday October 11th and she will bid me adieu. My cousin Freddie will be my caregiver at the time and leaving on Tuesday Oct. 12th, so we will enjoy one more day together and when she packs, I will do the same. My suitcase will be bigger!
So will soon ends my long stay in Tampa and on Friday, my 100th day since my transplant, my sis, Susan will be my celebration as she comes for a whirlwind weekend. Catch us if you can!
Looking forward to seeing Cathy tomorrow driving from SRQ, and my sis-in-law, Sherry on Monday flying in from PHL to TPA!

Thank you for bearing with me during this long story and for all of your sweet calls, emails, cards and visits! I really love reading your comments on the blog too!!
Much love,
Carol

In my own words

Dear Family and Friends,
It’s been quite a while since I’ve actually blogged, but I want you all to know that I am so thankful to all of you who have commented on the blog, phone calls full of support, e-mailed, sent cards, visited me in the hospital and come to our apartment with much cheer and goodies to nourish, fatten me up and see how well I am actually doing, reassuring you all that I am on the mend and will be home in about 28 days if my doctor sticks to our original plan.
As many of you have probably read, and I don’t mean to be redundant, but I have been in awe of my caregivers. I’ve been so blessed to have such caring family and friends who have come and taken care of me, driven me to Moffitt and the many other outings needed, cooked for and with me, kept up with my walking, attended yoga with me, created art work with me, played all kinds of games when I could or needed to sit still, spoiled me, and all the special care that was needed especially in the beginning. Many of you came by plane. Some on long car rides some both. I just love and appreciate every one of you and every minute of your time and effort…even in your new role as enforcers of the doctor’s orders. You are the ones who know how intricate this healing time has been since not every detail is posted.
Before I continue, it doesn’t go without saying that my main caregiver, Jaime, has been here for me through very thick and very thin times and I don’t know how I would have fared if it hadn’t been for his support, direction, understanding, dedication, tenderness, protection, tolerance, and love …to name a few. My second main caregiver, Daniel, who has come here every single week on his only two days off of work to do all the same as above and not only without complaint, but reminding me that it was his pleasure, has been priceless.
I am so grateful to Alexia, who left my wonderful son-in-law Trevor and most precious granddaughter (thank you Trevor and Bella for giving Alexia the freedom to be my caregiver). Especially the time I had been released from Moffitt 3 weeks after my transplant, so looking forward to our time in the apartment, only to be dragged back to the hospital to endure 4 days of fever. She reassured me it didn’t matter and that it would be fine as we would still be spending time together, and thank goodness for that because she helped keep me out of a funk while feeling so crappy those days, not to mention, it came upon her to move me out of the hospital when I was finally released and settle me back into the apartment.
Thank you, my dear sister, for making your monthly trips of fun and cheer sharing every activity we could fit into your extended weekends, stolen time from your hubby and work.
One of the major activities keeping my sanity has been my yoga classes which is a pretty amazingly wonderful program here at Moffitt, free to patients and their caregivers. My two teachers/gurus have been most personally nurturing tender people who will be very difficult for me to leave. I know I will find classes in Sarasota, but to be cared for by people who know what I’ve been through and attend to me and the other patients with such loving kindness has penetrated my heart and soul. There have been classes as small as private, to no bigger than 6 or 7 people. I can tell you, they have been as important as the healthy food I eat, the meds I have to take and the masked air I have to breathe.
So my new cells have been with me for 72 days and they have so far been pretty friendly, not too much trouble while taking over my old ones. I won’t be able to thank my donor for a year, but how incredible that a 24 year old female from somewhere in Europe has been so giving and literally saved my life, a stranger to her.
I expect the next 4 weeks to fly since I will have the extreme pleasure of the company of Daniel, cousins Frankie and Sandy for 4 fun days, friend and neighbor, Cathy, next weekend, Jaime then Daniel again, my sis-in-law, Sherry for 4 artistic days, my cousin Freddie from Cape Cod for 6 whole days of adventure (she’s a rower as well and it will be all we can do to stay away from the water!) and as we wind down the last week, my sis, Susan, will be back for a short but sweet weekend perhaps in Sarasota…or she may be helping with the move, we shall see!

Medically, in the next 4 weeks, I will continue to have my blood drawn twice a week and see my doctor once a week. The two biggest medical events will be my bone marrow biopsy on my 90th day and a few days before I go home, I will finally have my central line port removed! I will finally be able to take a shower without covering it and worrying if my shower shield will leak and get it wet. I won’t have to flush it 5 days a week and it won’t be sticking out from my clothes giving me one more thing to be self conscious about beyond the mask and my lack of hair (which is making a steady come back!)
I look forward to seeing everyone soon in SRQ!
Carol

Steady pace!

Hi everyone. Sorry for not blogging as often as we would like to, but not much has changed since the last blog.
Carol continues her progress at a steady pace and she looks forward to going home in 4 to 5 weeks. This by no means is final, but it’s what the original plan called for. Carol had her bone marrow transplant on July 7th.
The required 100 days to stay at the apartment nearby the hospital is about 4 to 5 weeks away to be completed, so the finish line for this stage is getting closer.
One of the physicians assistants tells us that if everything continues going smoothly, about 10 days before going home Carol will have another bone marrow biopsy to check the percentages of the new cells taking over hers, and she will also have the central line in her chest, used for transplant and all of the transfusions and blood work, removed (hurray!)
Once at home her follow ups will continue at her local oncologist with continued visits to Moffitt either once or twice per month, depending on her progress.

This past Wednesday, Carol managed to prepare a great Rosh Hashanah dinner. Aside from the 3 of us, Carol invited Bari, one of her favorite Yoga teachers. So we had a Delicious dinner and a good time overall.
Yesterday, Carol’s good friend Mimi came for a nice visit and brought with her some goodies and Miso soup she made for lunch. I did the smartest thing and left for a few hours, leaving the 2 of them to some girl's talk. After Mimi left, Carol and I took a ride to the very nearby Lettuce Park (recommended by Bari) for a stroll at the beautiful boardwalk through a good portion of the park. (nice picture)

Carol is looking forward to her parents Joe and Joyce visit today around lunch time. They either bring some goodies along or lately since Carol is allowed to go out, they take us for a bite to somewhere nearby.
There is more to look forward in the next few weeks because some family members will be visiting and taking the care giving responsibilities.
Frankie and Sandy, Sherry, Freddie, and then Susan. Of course Daniel will be our steady once a week wonderful relief and savior. I am sure Carol is going to take all of them for a walk in the new park we just found, but maybe by the time the next of them arrives, we will find other interesting places nearby from Bari's "must see" list to stretch our legs.
And to top it all, the most uplifting visit down the line will be Alexia and Isabella in November for Thanksgiving, and again at the end of December with Trevor as well.

That's it for now. Thank you again to everyone that calls, writes, texts and emails.
Jaime