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

Caring Cousins

Frank and I arrived on Tuesday, August 30 at 3 pm to be greeted by Daniel and Carol. Our instruction lesson took place shortly after our arrival; our instructor was quite good and well versed on the subject. His name is Daniel Gray, and he covered everything in short time. He hooked us up and we were ready to go. Then Daniel was off for a few days to do his own things.
Frank went to the grocery store to stock up on the things to make our party complete. After his return home we started preparing the evening meal. We had so much fun cooking and eating, laughing, chatting and just plain family time. Our time here with Carol has been great; to say she is an inspiration to us is putting it in the simplest of terms! Keeping up with Carol is no easy task! But she is keeping us on our toes. Carol is the fastest power walker of us all, and has run us ragged each evening. Spending time doing word games has been lots of fun, and believe it or not, watching TV is almost non-existent because there are so many other things to do. The puzzles are maddening, but we can’t resist trying to find those tiny stinking parts to fit into a 1000 piece puzzle where everything looks alike. I think it is Jaime who stirs it up then leaves the puzzles for us to complete. He starts them for others to suffer over. Thanks Jaime!!!!
Our time here is coming to an end and I’m saddened to say we will miss all of the fun we have been having. All of the simplest things that we all take for granted at times, are the things we have enjoyed the most while being here. The yoga classes, the trip to the hospital for the blood work report, the family meal time and preparations, games, the evening walks and most of all spending time with Carol have been great. By the way, Carol is doing extremely well, all of her numbers are up and getting to where they need to be!!
Thank you, Carol, for honoring us with the opportunity to share in your recovery. It means so much to Frank and I.

Warmly,
Sandy & Frank