So Much Up In the Air...

Dear Family & Friends,

Last week started with the wonderful report from the biopsy and was followed by so many hours of more pain in my knees, legs & feet, enough to confuse anyone, especially me. Still trying to keep up with my walking, which is the last thing, so I thought, left to do to keep me moving. Then came the Tricycle idea. My doctor hasn't permitted me to ride my bicycle for fear of me falling and without platelets, bleeding out of control. Also, it becomes quite painful to stand or walk for any length of time. Long story short, I sit on the tricycle, peddle for good circulation (have had swelling in my legs, feet and ankles, and this helps reduce that as well)and can handle that amount of pressure since I'm sitting. I have been constantly reduced from one activity to the next, but just can't stop moving or we'll all be in trouble.

With the wonderful arrival of my cousin Freddie, from Cape Cod, my mental medicine was again given a boost I very much needed, first fitting in an hour at the beach under an umbrella with the beautiful Gulf breezes we've been having. Second day she bicycled alongside my Tricycle and I. I know this all sounds so trivial to most of you, but to me every second is such a gift! Friday the 13th brought another beautiful day, early Tricycle ride with my Dad bicycling alongside me. We had a wonderful dinner and change of scenery that evening at Cathy & Gary's, any time I have the energy to get out of my usual surroundings, ends up being a special moment.

My afternoons are usually full with pain and trying to control it with meds that have been difficult to remember to take or worse, not remembering if I had taken them twice. Either way, it has all been too many drugs for my mind and body to deal with, mostly without enough relief. This was alleviated somewhat on Monday when Dr. Tomblyn prescribed a pain patch which delivers an even amount of meds and I don't have to worry when or if I took it.

The biopsy took place Monday morning and I also needed 2 units of blood and 1 of platelets. A very long tiring day is an understatement. As difficult as it was, that's how beautiful Tuesday was! My tricycle ride with my Dad and topped off with a fun visit from our cousins, Frankie & Sandy, now living in Boca, came to visit for a few hours again lifting spirits I had almost forgotten were there. Sandy topped it off with a much needed hair cut to help control my new doo of curls. Given & received with so much love.

As mentioned in the title, up in the air, I expect some preliminary results next monday, again looking forward to them, as long as they're good.

Thank you all for your sweet comments, emails, cards, phone calls, visits, good wishes and vibes I can feel even through the rippling water I so very much miss. If I haven't returned a call or comment, I still appeciate every thought and word and hope you will stick with me until we meet again.

Love To You All,
Carol

Brief update

Hi everyone and sorry for not posting updates to the blog as often as I would like to.

Carol is continuing with her regimen of multiple medications and doctor visits every Monday and Thursday. Mondays are always in Tampa but Thursdays are sometimes at our local doctor.

Her biweekly lab work determines the need for transfusions of either blood or platelets. In most cases she needs one of them, and occasionally both.

One thing that has been very difficult to manage is the pain on the lower part of her legs. For the past few weeks even with some strong medication, it’s been very difficult to control an acute bone pain that stretches from her knees to her toes, making it a challenge for her to take her walks or function normally when it’s even painful to be standing.

Dr. Tomblyn says that these are probably manifestations of the GVHD activity (fight) between the donor’s cells and her own. Some of the medications that could stop the leg pain could interfere with the donor's cells progress, so Carol is having to take meds that will not cause any issues against these very valuable donor cells.

Another bone morrow biopsy is scheduled for May 16^th. Where we hope the results to show an increase of the donor cell counts, which will explain why there is so much pain in her legs.

Will keep updating you.

Thank you.

Jaime

Breathing In Good Biopsy Results...

After so many months of fear, doubt, hope being held onto with every bit of strength I had, my Dad and I got to hear the final biopsy report from 4/4/11 showed my leukemia blasts went from 15% prior to the first Donor Lymphocyte Infusion to 3% after the first DLI!!! My neutrophils went from .26 to .4, one small step in the right direction, and hopefully we'll see some some rising blood counts in a few weeks. So, still waiting, but with so much more hope than ever!

My next biopsy will be in 4 weeks, very exciting! I'm in the middle of a mental adjustment I wasn't expecting to have the pleasure of experiencing.

Back to last week, I had a great time being with Sherry(sis-in-law), walking, talking, shopping, cooking & all full of nurturing for me as well Daniel. There was also time off for Jaime to spend the day in Miami on business, while Sherry covered any IV's needed during that time.

Friday, just as my Donor Lymphocyte Infusion (DLI) ended, Susan appeared. I had been watched for an hour before they released me to make sure there were no immediate side effects, then off we went down where our driver, Jaime, was waiting to take us home to SRQ. Had a yummy dinner and Upwords was played and as per Aunt Natalie, Upwords/Upwards have been closely related! Saturday morning was a challange with my leg pain intensity just not wanting to cooperate even with the drugs, so at one point I just said "%$#@@$% it, let's go to the beach. We grabbed some supplies and off we went. Walked a bit in lots of pain, so back to our chairs where Susan faced her chair toward me, I put my feet up and slowly the pain went away and I was in heaven with an unbelievable breeze, yellow warning flags flying for swimmers and surfers, and it was just more than anyone could have expected for 11 in the morning! What great beach and sister time all in one! Susan did all kinds of cooking in the afternoon. For us, delicious yellow tail snapper coated in pecan meal and a veggie lasagna and for the carnivores, a meatloaf with veggies, then topping it off with chocolate covered special dessert to take to our Passover dinner.

Skipping ahead to Sunday morning, my donor was in the mood for a power walk, so Susan and I did a 4 mile walk in the beautiful morning air! A quick little shopping trip to Ellenton in the afternoon, and back in time for a most wonderful Passover dinner at Joyce and Dads's. We couldn't have have had a more perfect ending to Susan's trip! Thank you, Joyce, for your warmth, love and good cooking!

I am now awaiting the arrival of my cousin David from Seattle, who won't get to see the space shuttle launch as he planned, but I stayed in his plans. So yeah!! I'm getting ready to spend the next 24 hours laughing. More good medicine!

Thank you all who have been brave enough to continue calling and writing even during all my crabby days and hours. I am so happy to finally be able to give you all some good news!

Love to you all!

Carol

Approaching My Second Lymphocyte Infusion

Hi Everyone,

These have been a very trying couple of weeks due to the waiting and balancing pain in my legs, medication, weekly transfusions of platelets, and red cells. I feel pretty good when the pain is gone and I can, even for a short time, forget what's really going on.

Good news... yesterday while at Moffitt, my doctor visited us while I was having yet another transfusion, and said that although she only had preliminary results from the biopsy, still showing about 15% leukemia blasts, given that my GVHD has been kept to a minimum and and I've been able to stay fairly fever free, just low grade at times, she has scheduled me for this Friday for my next donor lymphocyte infusion. I'm ready. It's getting old, this statis quo. Of course I'm looking forward to some, even just a little positive results. The first one was positive in that I tolerated it well.

In the meantime, my April fun has already begun! Last Sunday while Aunt Brenda & Uncle Jerry were visiting at Dad & Joyce's, Frankie & Sandy made the 3+ hour drive from Boca so there was a small family reunion. So sweet for all of us. As I write, I am waiting for Sherry, my sis-in-law to knock on the door and spend the next three days doing everything we can. Friday, when we have our appointment at Moffitt, we will be picking up my sis, Susan, for a short but sweet visit til Sunday, then Cousin David, from Seattle will come for a 24 hour visit. He was supposed to be coming to see the shuttle launch, but, so much for plans.

I have been walking almost every day with my dear ole Dad and he has come up to my speed and even gone an extra mile without too much complaint! He is also perfectly accomdating when I need to be slow. It has been very good for both of us in many many ways and I am grateful that they are close enough that we can just pop out our doors at a moment's notice.

This past Sunday evening we met Donna & Joe at Turtle Beach for a most beautiful Sunset and even a bite to eat at the Thai Restaurant since it was late and no crowds to worry about. So great to finally see Joe and Donna after all their weeks of business travel!

Thank you to all of you who have called and visited, it's so wonderful for me just to feel your hugs and know you're still there supporting me. It has been a long long road and is still in motion. I so hope to be able to share good news with everyone very soon.

And one more little upcomimg visit, Alexia, Trevor & Bella will be arriving on Thursday, April 21st for spring break, which I am so grateful to be present for. Can't Wait, but, one day at a time.

Love to All,
Carol

Good afternoon everyone, Sorry it has again taken so long for an update, but as I'm sure you all know life gets busy and then there are those times that just take unplanned routes and you have to go with it.

Since my lymphocyte infussion on March 10th, I really can't say that there has been much physical change as of yet. It still may be early. I had hoped that the fact that my last transfusion of red cells which lasted three weeks was a good sign since I just had to be transfused this past Monday with one unit of red and one of platelets.

I went to Dr. Chu's office today instead of Moffitt due to some very good weather advise from my friend, Jeri. I had my blood draw and PA appointments here in Sarasota so as not to chance the wicked weather and traffic risks. I'm not quite as bouncy this afternoon as I was this morning during my power walk with Daniel, my reds are down to 8.5 today and I'm scheduled to be at SMH Day Treatment Center for 2 units of red tomorrow. So it's a bit of a downer and I'm a bit discouraged, but here I go again. If you think this story is getting monotonous, I agree. This is the only way to keep me up and running until something more positive happens with the lymphocytes.

This coming Monday I'll be up at Moffitt again, starting with a Bone Marrow Biopsy and the usual blood draws and doctor or PA appointments as well as a visit to Dr. Greene who oversees my need for daily IV antibiotics which Jaime and Daniel have been administering morning and night. As soon as there is enough information from Monday's biopsy, Dr. Tomblyn will determine if it will be beneficial to infuse a second and larger dose of my donor's lymphocytes which were divided and frozen on March 9th upon arrival.

I have been walking 3 to 4 miles almost daily, depending on the pain in my hips, knees and legs, either with my Dad and/or Daniel, and many of you sweet friends as well. I've also kept myself quite busy with some fun art projects, reading, cooking and the usual daily chores. Taking care of myself has been quite a chore for me, Jaime & Daniel. I am grateful for all they are and to all of you and the enormous amount of support from all who have touched my life during this long year...and counting.

Thank you all for keeping me near and for being such wonderful spiritual boosters.

Susan's visit and blog contribution

While this is a delicate time -- waiting and hoping with every positive thought & bit of karma, that the new donor cells will boost the others to take over -- we focus on the moments when we share smiles & hugs, a game of upwards, and a walk whenever possible! Dad took a few walks with his girls which was very nice.

There is also the positive energy that comes with team work...taking turns shopping, prepping & cooking food (among other daily "chores") ... all less of a burden when divided & conquered. There's that satisfaction of seeing a meal come together & being enjoyed by all...life's simple pleasures (not to mention the even better pleasures of good leftovers for later or the next day, right, Daniel?!).

There are times of the day & eve that are difficult because of pain and/or fever (related to GVHD and neutronpenia), but the times that are pain & fever-free are when Carol's energy returns and we are able to just "be" ...and we all feel that surge of freedom and relief.

Yesterday was a real gift -- Carol & I spent several hours at Turtle Beach -- warm breezes, perfect temp in 70's, clear gorgeous water. She was feeling good all afternoon so we closed our eyes for a little while to breathe in the ocean sounds, walked a bit towards Midnight Pass (one of our favorite places), and just felt very thankful to have a good span of time to enjoy the beach in each others company. We decided dinner was second priority & stayed as long as we wanted to...made a late dinner & stayed up to watch 2nd half of a movie we'd started the night before. Guess you can say we squeezed everything we could out of that day!

Today Dad & Joyce came over to visit for a while...after a slow-ish start, Carol & I fit in a walk in the neighborhood -- it was great to see her pace pick up since her energy somehow rebounded...despite her need for platelets today...mind over matter? Then we headed to Moffitt for Carol's appointment & I left for the airport.

Thank you again for sharing the last 4 days with me....love-filled & lots of amazing team work :-) Susan

A fun weekend and some schedule changing

The lymphocyte transfusion has been rescheduled to Thursday, the 10th due to the donor's availability. Then we will look for a reaction of GVHD within a few days to indicate that the lymphocytes are doing their job.

This weekend we have our always fun visit from Alexia, Trevor and Isabella. My mom has been feeling very achy, but she's able to keep somewhat distracted with games, art-ing, good food and fun outdoors at the beach and around the neighborhood.

Carol’s donor cells will get a boost

Carol will be receiving a lymphocyte transfusion scheduled for March 8th at the Moffitt Cancer Center. The same bone morrow transplant donor (whom we don’t know but so much appreciate her cooperation and invaluable matching blood) is again volunteering her time and blood for her lymphocytes to be harvested.

All the scheduling had to be planned and orchestrated in advance. The harvesting, currier transportation from somewhere in Europe and Moffitt’s own screening procedures before going ahead with the transfusion. Only a small dose of the lymphocytes will be transfused on March 8th. Keeping the rest frozen and used if needed. All at once could cause acute GVHD (fancy word for rejection).

Ideally doctors are looking to have a moderate GVHD reaction to the transfusion. This will show the activity of the donor cells trying to overtake Carol’s own cells, specifically her Leukemia cells. Once the donor cells attack her Leukemia cells, more lymphocyte transfusions are an option if needed to reinforce the donor’s cells' to put her Leukemia into remission.

Doctor Tomblyn informed us that with Carol’s aggressive Leukemia cells, the odds of the donor’s cells plus the additional lymphocytes have a chance to work but are not guaranteed. We all know about Carol's reputation of not going by anyone else's odds. So here she goes to prove that she can beat this disease again.

While we are gearing up for March 8th, we are all excited about another visit from Alexia, Trevor and Isabella from March 4th til March 8th. And Susan from the 10th to the 14th. We all know how much Carol treasures her visitors, but when the visits are from her Sister, daughter, granddaughter and son in-law, words cannot begin to describe her excitement.

On a personal note, sorry to all of you that had to call about Carol's updates. Maintaining this blog as much as I would like to with so many other things going on at the same time becomes a bit overwhelming.
Thank you for your patience.
Jaime

Meds and more meds.

Last Thursday Carol resumed her Vidaza treatment after having to be admitted to the hospital twice in the last two weeks due to constant fevers. The first time she was admitted to SMH, and the second time to Moffitt.
She is now on the second cycle of Vidaza and it’s given at her local oncologist clinic in Sarasota for a total of 7 days. There are two more days left for this cycle. (today and tomorrow Friday)
3 weeks after the Vidaza cycle is completed a bone morrow biopsy will be done to monitor the blast cells. The objective of this drug is to put her Leukemia blasts into remission so the lymphocytes from the donor can be transfused to Carol, giving the original donor cells a much needed boost. Dr. Tomblyn said that additional Vidaza cycles can be given to Carol to accomplish this goal.
The weeks to come are again a waiting game until the next biopsy which will determine what the next steps will be. While at home, she continues with her 4 daily IV antibiotics along with her other meds.

The fun part.
Over the weekend Carol’s sister Susan visited and what a fantastic help she was (as always) not only for Carol's spirit, but also for the body and mind.
Susan took great care of Carol and then she found the time (twice) to cook the most delicious dinners, not just for Carol. She also managed to make some special meals for Daniel and me. We really enjoyed and appreciate it.
Also over the weekend, Carol’s Brother Mike, who was sailing from Burnt Store Marina to Venice, stopped by for a visit.
In the meantime, we are looking forward to Natalie and Al’s visit from Philly next week and Susan returning on March 3rd to be with Carol while I work away from home for a few days.
Will update more soon.
Thank you.
Jaime

Back to Sarasota to continue treatment

To resume her Vidaza treatment at her local oncologist in Sarasota, Carol is being released tomorrow Wednesday from Moffitt after being treated for her fevers during the last 4 days. The antibiotics that were started at Moffitt, will be continued via IV while at home.
Preliminary results of Monday's bone morrow biopsy continue showing signs of stubborn Leukemia cells, so Dr. Tomblyn will start the process of contacting the original transplant donor in order to set up the collection of the lymphocytes to give the needed boost to the transplanted morrow. This process could take one month, but if more time is needed Carol will continue with more cycles of Vidaza until the lymphocytes are collected.
Will continue updating soon.
Thank you.
Jaime

Back to Moffitt

Only a few days after being released from the Sarasota hospital, Carol was having mild fevers on and off.
Once they reached over 100.5 I called Moffitt and was told to bring her directly to the BMT floor where she was immediately admited.
She is now being tested to identify the source of her fevers. Tomorrow morning she will finally have the postponed biopsy.
Thank you.
Jaime

Minor update – Carol is back home

Carol was admitted to Sarasota Memorial Hospital last Thursday due to a spike in her temperature. Being neutropenic (insufficient white cells to fight infections) she had to spend 7 days receiving antibiotics via IV’s to get her fever under control.
Now we are home with her fever gone. I will be administering her antibiotics via IV for another 2 weeks (+/-)
The bone morrow biopsy was rescheduled at Moffitt for next Monday the 31st and a visit with Dr. Tomblyn was rescheduled for Friday the 4th.
Then we should find out the biopsy results and discuss future treatment.
I will update in a few days.
Thank you.
Jaime

Bumpy road

Carol needed to be admitted to Sarasota Memorial Hospital early Thursday morning after she developed a high fever during the night. The doctor on call at Moffitt suggested I take her to the local emergency room instead of driving all the way to Tampa in her condition.
Since she continues having sporadic high fevers and her blood counts remain lower than the minimum required to be released we are still at Sarasota Memorial for at least another couple of days until her condition improves.

The bone morrow biopsy and follow up appointments with Dr. Tomblyn scheduled for tomorrow at Moffitt will need to be rescheduled for a later time to give Carol an opportunity to recover from this bump on the road.

On the lighter side, Carol’s cousin Freddie was visiting during this time. They managed to do a few fun things just for a couple of days before Carol was admitted. Carol felt pretty bad that for the last few days of her visit they weren’t able to go to the places they planned and enjoy walks on the beach but with the hospital stay limitation they had a chance to spend some time together.

Cousins Richard and Cathy Diamond had planned a bird watching trip to Myakka Park and they took advantage to visit Carol on Friday along with Freddie. Their visit lifted all our spirits.
Today Cathy Lankenau came over to visit Carol for a little while, followed by Sybil and Jay later in the afternoon.

So for now Carol is at the Sarasota Memorial Hospital and looking forward to going home soon.
Thank you again to everyone for all your support.
I Will try to update you soon.
Jaime

The waiting game

That was what Dr. Tomblyn proposed to Carol this past Monday. Wait until the end of January for another bone morrow biopsy.
Basically another bone morrow biopsy will be done by the end of this month so we can find out if the donor cells are also attacking Carol’s Leukemia cells, aside from last month’s very acute reaction on her skin that caused her to be readmitted to Moffitt for 6 days.

In theory, if the previous bone morrow biopsy was done while the donor cells were in the midst of causing such a reaction on her skin, Dr. Tomblyn’s opinion is that we probably should have postponed the biopsy to allow the donor cells to attack the most needed area. Carol’s bone morrow.
So, in the meanwhile, we are playing the waiting game, regular “biweekly” visits to her local oncologist for lab work until the 24th.

And talking about lab work. For the past weeks Carol’s blood counts for the white, red and platelets stayed +/- level. This past Monday her lab work showed a little increase on the platelets count, reaching 40. It’s not a huge increase, but since this is possibly a sign that Carol is making some of the platelets on her own, it is very encouraging.

One new discomfort area is now in Carol’s thighs and knees. It seems that there is some donor cells ongoing activity in the femur bones that could cause occasional aching pain. With Dr. Tomblyn’s approval, a couple of Tylenol pills can be taken to help with the pain, but only occasionally, otherwise there is a risk of masking a fever.

The past couples of weeks have been pretty busy with family visiting from far and close.
Cousin David flew in from Seattle to stay for a few days, Frankie and Sandy drove in from Boca to visit both, Carol and also David.
Cousin Howard and Gabriella from Colorado visited while in the area for a trade show.
Cousin Freddie is due to arrive to SRQ this afternoon for a week long visit.
Thank you again for all the calls, cards and emails giving Carol tons of encouragement.
Jaime

Hello My Dear Family & Friends

Although, I have to admit, going home was almost as frightening as going into the hospital, I am SO happy to be home and have my freedom, my surroundings, bed, food and husband, back. I have been healing and getting stronger every day, rash is gone…that’s a miracle!! No more fevers or any other of the problems I went in for, or got, while I was there.
I do wish this had happened at a different time. Alexia, Trevor & Isabella did not get to share with us, the stay-cation we had all envisioned. They were, however, most supportive and more than good sports about having to drive an hour to Moffitt every day where none of us could enjoy Trevor fishing or Bella running around on the beach collecting shells and making castles. I am very in awe of their sweetness & dedication, and help making me feel better, getting things and food to me and just being the best medicine there could have been during that time.
This past Monday I had my normally scheduled appointment with Dr. Tomblyn at Moffitt (I went without my suitcase and made sure to have my precious yoga class). She was very pleased, as are we, that I was doing so well and was anxious to share my blood work results of that day. My white counts had gone from .39 on the 30th to .69 on the 3rd by themselves, as they cannot be transfused. My hemoglobin was holding and so were my platelets. My albumin took a big leap as well (hospital food vs. home cooking) so my nutrition is also on the rise. Due to these results, my doctor told Jaime could stop administering IV antibiotics around the clock and I may or may not need another round of Vidaza (chemotherapy). Also, that it may have been too soon for that frightful biopsy.
Tomorrow, Thursday, I will go to Dr. Chu’s office for my scheduled blood work and hope to see rising numbers. My take is that there was a war waged last week. My donor’s cells became strong enough, after being off all the immune suppressing medications, to fight the Leukemia cells. Sunday I felt peace in my body and I’ve been feeling stronger ever since. Today I even power walked to my normal tunes!
Exceptional Thanks, to my husband who doesn’t leave my side until he knows I’m safe and who cares for me no matter what the circumstances are, and they have not been pretty. And to all who have kept in touch, visited, listened & loved. Thank you.
I look forward to cousin David arriving Sunday for a few days from Seattle followed by Freddie coming from Cape Cod for a whole week after that!
Carol