6 months Post Transplant

Tomorrow will be my 6 month anniversary since my stem cell transplant on April 18th, 2014. I left the hospital on May 5th. My updates are now monthly unless something major happens. I hate to dwell on myself as I am feeling stronger and stronger and there seems to be less significant changes from month to month. My appetite is getting back to normal. I rarely get nauseas, except during my week of chemo. I am still taking a low dose of chemotherapy (Vidaza) 5 days in a row every 28 days. So about once a month I'm feeling blah. But not bad enough that I can't go about my normal routines. The chemo usually drives my white count down so I have to be extra careful about being around sick people during that time. My next dose will start on Monday, Oct. 27th.  

The hardest part of the recovery for me at this point is always watching with a hawk eye what I am choosing to do and where I am going to be ending up. I still can't hug people and that is REALLY hard. I LOVE hugs! I have to be very careful with hand washing and sanitizing, wearing my mask in crowds or in the hospital, not standing too close to people or trying to sit farther apart. And of course I have to avoid being around anyone with an active infection. They say October through March is critical for us transplant recipients due to the flu season. A lot of bugs are going around out there already....and then there had to be this Ebola scare!! By the way, my nurse practitioner who meets with Jerry and I regularly about "survivorship" issues explained that I should tell all my close family and acquaintances to get their flu shot!! Not the one that gets swabbed into the nose, but the actual injection kind. (The one in the nose is a live vaccine and that's not good for me either). I am learning that my body is not able to fight an infection like the average person. So should I contract anything, it would likely lead to hospitalization and could be VERY serious. It's a hard concept, because I look like I'm doing so well. I will receive my first 6 month vaccinations soon.

I still have to watch my food choices, but now that I am off the tacrolimus (anti-rejection medication), I am given more leeway about what I can eat. I still have to avoid buffet style meals,
especially fresh vegetables and fruits in that setting. I can't have any raw fish/sushi, or any other raw meats.

And for the rest of my life I will need to be extra careful to wear sunscreen, hats and sun guarded garments when I'm outdoors. If you know me well, you know I LOVE OUTDOORS! I had just started to learn golf before I was diagnosed. Have my new clubs, golf wear and all. I haven't approached my nurse practitioner or doctor about when or if I can get out in that much sun. It seems so hot to wear long sleeves while golfing in June. But where there's a will there is a way. So eventually I'm hoping to golf twilight hours. But I will most likely wait till I get closer to my one year anniversary. The reason for the sun scare is that too much sun exposure can activate a GVHD (graft verses host disease) in my skin. Also my chances of getting a new cancer....melanoma is a big one...are highly increased! I have been following one woman's blog who has received a stem cell transplant at MD Anderson two years ago. They just discovered melanoma on her face. YUK! Kinda Scares Ya! Maybe that's a good thing! At the same time they don't want you to hibernate in your home and become depressed. That is NOT a quality of life unless your called to be a hermit!

I am still receiving physical therapy for what started out as a frozen shoulder. Now my Physical Therapist, Julie, says it's thawing! She's doing a great job and I almost have full range of motion and rotation. There is still pain with certain movements, but it is sooo much better. Maybe I'll remember to take a picture of my PT next time.

My last bone marrow biopsy was on Sept. 29th. The results came back looking really good. Still in remission! Thank the Lord!!! I still have to face the reality that it could come back. According to Dr. Champlin, 33% of the patients who go into stem cell transplant have a recurrence. He also quoted that 33% of those patients will see a cure...and  I am still hoping for the last 33%!!

Finally, in September,  Jerry and I were able to go to Colorado Springs for his company's executive board meeting. My first long trip in which I ventured out of the state. It was scary to be away from the safety net of my major cancer center. I dutifully wore my mask on the airplane and sanitized everything on the plane near me thoroughly! But everything went well and obviously we made it back without a hitch. The weather was beautiful and scenery was fabulous!
We were able to stay at the beautiful Broadmoor Hotel. Praise God for such beauty He gives us to behold!

 These are photos the professional photographer took of us at the Broadmoor.

 This is Velma, the nurse who give me my chemo injections!

This is my sister in-law, Claire, who never wants to be photographed. She is such a beautiful person inside and out. She accompanied me to MD Anderson to have my bone marrow biopsy and chemo in September when Jerry was out of town. Don't know why she's photo shy. But I finally twisted her arm to allow me a "photo sharing moment"!

Thank you all so much for my continued support and prayers! It means so much to me that so many people I still run into say that they are keeping me in their prayers. Air hugs back at ya! And by the way...I thank God everyday for all the people he has put in my life who bring me support and love!

5 Months Post Transplant

It's hard to believe that I was receiving my new stem cells 5 months ago today. And even harder to believe that my journey with MDS started one year ago on Sept. 6th. It's been quite a journey which I couldn't have made without the hand of my Lord leading me and giving me strength to overcome each new obstacle. Jerry, Stephen and Nathan have been my cheering squad. And all my friends and family have been my support system. I am feeling extremely blessed.

I feel strong and my side effects are minimal. I continue to receive physical therapy for my frozen right shoulder. At this point my range is almost normal and I mainly need to strengthen the muscles that got so weak by none-use. I will start my third cycle of chemo on September 29th and will have another bone marrow biopsy that day.

Below is a photo from the summer issue of the MD Anderson Messenger magazine. The stem cell floors have a Pole (IV poles) Parade each Easter and this issue discussed the parade and several photos of the patients. The photo below shows Jerry and me at the Parade.  I'm the masked and gowned person standing next to Jerry with the pole that says "He is Risen"! I wanted to convey the true meaning of my celebration of Easter! So there you go!

A Wedding in the Family

My handsome boys Stephen (oldest and tallest) and Nathan and husband, Jerry. My new hairdo! I've decided I have enough hair to get by, so I ditched the wig for the week! Now I'm trying to copy my son Stephen in hair styles! My niece, Becky and her new husband Jeremy Rogers were wed last Saturday in Georgetown. Some how I never ended up with a photo of them and us. But I did end up with a photo of our family.
It was a lovely wedding and was my first big "outing" since the transplant. I even was able to partake in a glass of Champaign and a glass of wine. Since I've been taken off the tacrolimus, I read up on my "do's and don'ts" list and found out that I could actually start enjoying an alcoholic beverage occasionally.  No more than the allowed two alcoholic beverages on any given day...I promise I didn't cheat :) I even enjoyed "shaking a leg" out on the dance floor!

I started my second cycle of chemo on Tuesday after Labor Day. Since my last post I have also been receiving physical therapy for what they call a frozen right shoulder. I go out to Katy for the rehab. It is helping tremendously! I almost have full range, but still have difficulty rotating my arm outward. I have been seeing the therapist twice a week.

Day 123 Maintenance Chemo Started - Tacrolimus Stops

On my last post I failed to mention that Dr. Champlin started me on a maintenance chemo treatment.
The same drug, Vidaza, I received during the 5 months of "gentle chemo" before I was ready to go to stem cell transplant. My dosage is not as strong now and I receive it through an injection into my stomach. The treatments last for 5 straight days and only happen once per month. This is projected to take place for about a year. The doctor explained that not only will this potentially increase my odds of not having a recurrence of the MDS, but also could help the odds of not developing GVHD (graft versus host disease)...at least some research has indicated this potential benefit.

So I had my treatments the first week of August. I am due to start another set of injections on September 2nd. My primary side effects during that week were the constipation I get secondary to the anti-nausea medicine and some lingering nausea. My stomach has not cleared up all together anyway and the digestive issues, nausea persist. It seems to come in waves with not much predictability.

The doctor discontinued my tacrolimus (the anti-rejection medication) yesterday after a tapering back period. He is still pleased with my blood counts and I'm hoping we will be able to have my central line removed soon. I start physical therapy tomorrow for a pretty sever pain that will not go away in my right shoulder. I first started having it during my hospitalization, but it went away shortly before being discharged. It returned again around a month later and hasn't gone away.

So all else is well. Thanks for the continued support and prayers. I'm getting back to my normal routines and finding it hard to stay within my restrictions placed because of my suppressed immune system:
1. No hugging- except for my immediate family.
2. Lots of careful hand washing and sanitizer.
3. Wear a mask in crowds if you are less than two arms lengths from the person next to you.
4. Hand shaking is ok as long as you sanitize your hands afterwards.
5. No working around dirt or lots of dust --- which means no gardening for now...no renovating our  cabin which I had hoped to get back to finishing what I had started before my diagnosis.
6. Traveling out of the city is OK. Airplane travel should be limited to places with a major hospital and always wear a face mask during the flight.
7. Avoid any visitors with any infections or even a runny nose.
8. Foods restrictions continue, but are not nearly as restrictive as before.
9. Sunscreen and protective clothing (hats and long sleeve shirt) when out in the sun for more than a few minutes.

So my return to work as a speech and language pathologist is still not advisable. I'm debating about whether I will go back at all right now. My newly acquired golfing interest is still on hold during this summer heat....I can't imagine wearing long sleeves and a wide brimmed hat and even a game of 9 holes is probably longer than my doctors would advise. Not sure when I will be able to pursue that again....I miss my lady golfing friends at Jersey Meadows :(
I still am unable to be an Extraordinary Minister of Holy Communion at my church. The cleaning and consuming the communal cup of wine and the close proximity with people just isn't advisable yet.
I'm learning a lot of patience and doing a lot of in home projects which never fit into my busy schedule before....so I guess that's what it takes to get an "on the go woman" to slow down!!

A Fun Time with Old Friends

I am purposely not reporting on any thing about my illness. This weekend was about getting away from my Cancer struggles and taking time to have fun and laugh with old friends. I am so thankful that I am feeling up to these visits now! Four of my old speech buddies from Austin were able to come to Houston for an overnight visit at my house. We all worked together at what used to be called Healthcare Rehab Center in Austin. It now goes by the name of "Texas Neuro Rehab" It was an unusual place in that we had some very difficult patients (many with traumatic brain injury and some were adolescence with severe emotional and psychological issues) to work with,,,,many were patients that were sent to our facility because no other facility in their state could handle them. These patients call this facility home for an extended period of time.
This group of about 10 speech and language pathologist have stayed connected for some 25 plus years. Most of us didn't have children at the time we started working together and now many of our kids are out of college and leaving home! Two of our group have passed away. But there has always been a bond between us that was unexplainable. We just connected, and have stayed connected although many of us have been separated by distance and work environments for numerous years. Here are four of my good friends from Austin and the surrounding area: From left to right:
Cydney, Diana Kim and Barbara. I enjoyed the weekend guys...till our next "girls weekend"!

Love, Gail

Day 107 - Bone Marrow Biopsy Results

On Tuesday I met with the Infectious Disease Doctor, Doctor Chemaly. He reviewed the results of my CT scan of the chest that I had done on Monday. And though the spots on my left lung showed improvement, the spot on my right lung looks about the same or possibly a little worse.  Dr. Chemaly said this infection, called MAI, is something many people are exposed to. It just takes someone like me with a suppressed immune system a long time to get rid of. He said it could take up to a year or two. So I am staying on the antibiotics for now.

Thursday I met with Dr. Champlin. He was very pleased with the results of the bone marrow biopsy as well as my blood counts. He is tapering down the tacrolimus (anti-rejection medication) to one time a day. When I asked the intern if the biopsy indicated that I was in remission, he said "Yes".
I realize though that the fact that you're

 

in remission does not mean I am out of danger for the disease returning, it only means that there is no sign of disease at this time. Praise God!

This week I enjoyed a visit from my old college roommate (May) and her husband (David). We lived together my senior year along with my good friend Becky. May moved to the Toronto area and it's been about 30 years since we have seen each other. So I made sure they got their fill of my Texas twang and had some good Tex-Mex food at Lupe Tortilla's.

Day 93 Things are Plugging Along

With one week to go before celebrating my first 100 days, things are looking great. I am still taking quite a few medications including 3 different antibiotics, an anti fungal and an antiviral. Next week I will have a repeat CT scan of my chest to see if that dad gum organism is still growing in my lungs. The last chest X-ray still showed some opacities in the lungs. On Tuesday I will meet with my infectious disease doctor, Dr. Chemaly, to see if I can start getting off some of the antibiotics at least.
Last count, I am taking 12 different medications and 19 different pills each day! Ugh...my stomach still doesn't know how to digest all this at times.

I met a woman in the waiting room this week at MD Anderson who had a diagnosis of MDS initially.
She had a stem cell transplant almost 2 years ago. At about 18 months after the Stem Cell transplant she had a bone marrow biopsy that showed the MDS had returned. The MDS progressed into AML after only about a month later (I may have details a little confused) and was not responding to the chemo drug Dacogen. It brought to light the fact that we all need to support each other through prayers, and also that we just need to be thankful for each day God gives us here. No matter what your health is like, there are no guarantees!

I have been lucky to have my next door neighbor, Amy, as my "sitter next door"! We checked in with each other regularly through out the day and ran errands together. Amy went to MD Anderson with me on Wednesday and My sister in-law, Claire, was able to go to my PA appointment with me on Thursday. I am so grateful for all the help I have received during these last 93 days!