11 months post transplant!

March 18th came and went and I wasn't able to get around to posting because Jerry and I were in San Juan, Puerto Rico for an AGC business convention. I was able to tag along. I really love the people and the scenery there. The Puerto Ricans are very friendly, and most know English enough to help you.  We stayed in San Juan which is on the Atlantic side of the island. The views were magnificent from the various forts on the perimeter of Old San Juan. See the photos below.

 

I continue to feel well. I have beefed up my exercising to about 3 miles 4-5 days a week. I am also lifting light weights and doing to muscular strengthening exercises on the machines. I will have another bone marrow biopsy on Thursday of this week. So that will tell if all is clear. We are keeping our fingers crossed. My one year mark is right around the corner.

I will also have another CT scan on Thursday as well. That will determine if the infection is still growing in my lungs. Hopefully it is clearing up. However, I did develop a cough in San Juan. I think it may have been allergies, because several people were sick with similar symptoms.

 

So there isn't much to report this time. Check back next month. I'm hoping all is well for me to celebrate my BIG 1 YEAR MARK!



 

 

10 Months Post Transplant

In this 10th month I have continued to heal and grow stronger. I did not get my next set of vaccines yet due to a stomach issue. But hope to receive them when I see my doctor tomorrow. I feel extremely fortunate. My chemotherapy is on indefinite hold due to the lung infection that started getting worse in December, just a month after I started my chemo. The doctors put me on a new antibiotic and decided that the chemo was drawing my white cell count too low to fight the infection.
My latest CT scan of the chest and chest X-ray now show some nice improvement in what they call a pneumonia. I have no clinical symptoms at this point.

At the same time I was very saddened to have to say "good bye" to a dear friend whom I met in the hospital. Sharon and I met in the waiting room of the "Fast Track" blood collection area in September of 2013. This is where most of the Leukemia patients spend their time while they wait for a nurse practitioner or physician assistant to check the results of the morning blood draw. They are the ones who determine if you need hemoglobin or platelets, or other medical interventions. Sharon overheard me telling another patient sitting next to me that I had MDS. Her face lit up. She explained that she too was diagnosed with MDS a month before me. As it turned out, we had many more than a few similarities. She was diagnosed at the same clinic at Methodist Hospital, wound up at the same Leukemia doctor (Dr. Garcia-Manero) for a second opinion at MD Anderson, and would have the same Stem Cell Doctor, Dr. Champlin. Sharon was born approximately a year before me, which is a young age for most patients with MDS. Furthermore, we ended up realizing that we were raised in the same neighborhood in Houston. Well in my mind there was no coincidence to our meeting. Throughout the next year and a half we repeatedly looked forward to our waiting room time together, where we would compare notes ("So what did he tell you?"), latest research we had inquired about, ways we dealt with particular ailments...and the list goes on.  Sharon and I were a team so to speak!

She suffered several set backs, the greatest one being that the MDS returned after only approximately a month after her stem cell transplant. It quickly went from MDS to AML (Acute Myeloid Leukemia)Finely her body became too week for the fight. Sharon passed away on February 6th. I know that she no longer suffers the consequences of this horrible disease and that I have one more person in Heaven rooting our team on! May the saints and angels carry you to eternal bliss, my friend!! I pray we will one day be enjoying each other's company again!

Ninth Month Post Transplant

My follow up visit with Dr. Champlin on January 12 went well. He reviewed the results of the bone marrow biopsy I had received on the 29th of December. No signs of the MDS. My blood has completely changed over to my donor's type (A+). Chimerism study shows that I have 66% of my donor's T-cells. That is still going up (57% last biopsy). They just want to monitor that it's going in the right direction and I assume that in the end the goal is for me to convert to 100% of my donor's T-cells. The T-cells have to do with the immune system. He wants me to receive my second dose of vaccines at the beginning of February. In addition, my chest CT scan showed that the infection in my lungs has improved over the previous two scans. So the new antibiotic and the hold on the chemo must be helping that issue!

Speaking of my donor...I received a letter from him last month. It was a response to the letter I had sent him right before entering the hospital for my stem cell transplant. I had thanked him
wholeheartedly and had expressed to him what all his very precious cells would allow me a chance to experience; given that all was successful. Of course, all communications go through our stem cell coordinator and the national bone marrow registry and "Be the Match". We are not allowed to know our donor's name or location. However, he happen to tell me in the letter that he lived in Germany (oops). If all goes well, in two years I will be allowed to receive his name and address so I can write him directly. And perhaps one day we can pay him a visit :)

In the past month, Jerry and I were able to take a short trip to Key Largo, Florida together for his work. It was a very nice getaway! I also became a great Aunt to my godson's (and nephew) and his wife's new baby boy. Collin and Casey New brought a beautiful baby boy named Cade Patrick (after my deceased brother, Pat) into the world. I was able to hold him today. He's got the entire family beaming!!!

I'm beefing up my exercise regimen and hoping to get back to some golf lessons in the spring. Jerry gave me a "fitbit" for Christmas. It's motivating me to get my 10,000 steps a day....which aint easy to
tackle. I haven't reached that goal yet. I feel I can physically do it, if I just had and hour and a half to spend on exercising each day! That's a big chunk of time!! I primarily use an elliptical machine or walk. Recently, my doctor gave me the approval to be able to work out in the gym. Prior to that he advised against the gym work outs due to too many germs. My nice neighbors and friends, Dottie and Clay, have been extremely generous to let me use their personal gym in their home over the nasty winter months when I can't go walking outdoors. I don't particularly like jogging. So we'll see how long these New Years resolutions last...haha!!

Finally, several people have said that they can not post comments on this blog for some reason. My computer literate son tells me that you have to register for a google account  and get a password in order to make a comment. Sorry, but I don't think it's too hard since I did it!

Below are my bragging photos!

 Family Christmas photo. Hair is growing out. It seems to have a mind of its own right now. A lot more body than I ever had before. Have you ever heard of hair putty?? That's what my stylist recommends!

Some of my St. Agnes high school friends got together at the school last week. Cindy (behind me) is the one who organized the Houston group to have a healing rosary in my honor while I was in the hospital.  Polly (grey sweater) made the prayer blanket that everyone contributed to by tying the knots to connect it together....so beautiful!

 

 

Introducing Cade Patrick New....my great nephew!

Key Largo Biking Tour

Happy New Year!

The dawn of a new year allows me time to reflect on the whirl wind of a year 2014 was for me. Full of emotional ups and downs. Last Christmas (2013) and New Year was extremely enjoyable, but also tenuous in that I knew I still had the remainder of my gentle pre-chemo treatments and the stem cell transplant ahead of me. I spent the majority of the days during the holiday of 2013 at MD Anderson receiving chemo and blood transfusions, as my blood was getting sicker and sicker due to the deterioration of my bone marrow. My energy was slowly getting zapped, but I was fortunate that I never had incapacitating symptoms. And best of all for the most part I was able to maintain an unexplainable sense of peace about everything that lied ahead. The only way I can explain this is that through all the people praying for me and my own prayers, the Holy Spirit filled me with that sense of peace. I didn't know how things would end up and still don't know. But in reality none of us knows what tomorrow will bring. And the most positive thing about this illness is that I am reminded daily to take each day as a gift and try to make the most of it. Not by what I accomplish, but how I respond to each little detail or incident that fills my day.

This Christmas 2014 was another beautiful holiday and I am so extremely blessed that I have felt so good. The stem cell transplant is behind me. I wasn't even taking my maintenance chemo during the holidays because the doctor has put a hold on the chemo until I can get this infection growing in my lungs cleared up. The chemo pulls my white blood count down and suppresses my immune system making it even harder for my body to fight infections. I did get a fever the week before Christmas, but it turned out to only be a cold bug and I got over the fever quickly and am slowly getting over a nagging cough.

I had my tenth bone marrow biopsy on Monday the 29th. What a joy those are....(NOT)!!!But unfortunately they are the only way the doctor's can tell how my bone marrow is doing as a result of the stem cell transplant. My doctor informed me that I will likely be receiving bone marrow biopsies every two to three months for the near future. The results of the biopsy should be coming in over the next two weeks.

I am hoping that your New Year is bright and that you all can keep the light shining for all those who are having difficult times emotionally, spiritually and physically this holiday season!

8 Months Post Transplant

Well I let my 8th month anniversary come and go on Dec. 18th. I have been harboring a little cough that ended up turning into a worse cough with body aches. So on Friday at around 3pm I took my temperature and realized I had a 100.4 temp and decided I had best contact Toby, Dr. Champlin's PA (physician assistant) She spoke to Dr. Champlin who wanted me to get to the clinic as quickly as possible so that he could examine me and they could run some blood tests, do a nasal flush and start me on some Tamiflu. Unfortunately my car was in the shop and my son and husband were both gone. By the time I found someone to take me, it was closing in on 3:30pm and it would have been hard to make it to MD Anderson on a Friday afternoon before they closed at 5pm.

So Dr. Champlin just called in a prescription for Tamiflu to my local pharmacy and I started the first dose that evening. My fever went up to 100.9 during the night. But by Saturday's second dose, it seemed to kick in pretty quickly because my fever was down to 99.4 on Saturday afternoon and gone by Sunday. I still have a lingering cough. But they want to see me tomorrow morning and will take a chest x-ray and blood tests in the morning and I will see Dr. Champlin.

The only other significant thing that happened since the 7 month mark was that my CT scans showed the infection in my lungs was getting somewhat worse. So Dr. Chemaly, the infectious disease doctor switched one of my antibiotics and will have another CT scan of my chest done in a few weeks. I have another bone marrow biopsy planned for Dec. 29th. As a result of my infection getting worse in my lungs, Dr. Champlin wanted to put my Vidaza chemotherapy injections on hold.

Maybe next month I will have some Christmas pictures to share with everyone. I have a short bob like hairdo, that is filling out, but doesn't seem to be growing in length very fast at all.

As a last request, I would like to ask if there is anyone out there that can make the time to give blood or platelets during the holidays to please give me a call. I have a dear and courageous friend at MD Anderson who was diagnosed with MDS a month before me. We met in the waiting room shortly after I was diagnosed in September, and have encouraged each other on throughout our similar journeys and have stuck together for this year and 3 months process. She has had an unfortunate turn of events and needs platelets daily. I can give you more information about where and how to donate that I don't want to share on my blog. So please call me at 281-814-9507 if you feel like you could do this! She and I would greatly appreciate it!!

I hope everyone has a very Merry Christmas, thanking God for the special gift of His son!

Gail

7 Months Post Stem Cell Transplant- Vaccination Time

Today marks my 7 month mark. I received my vaccinations that a normal 6 month old would receive. Polio, Hepatitis B, DTaP, Hib, and PCV13 (pneumonia). This is important so I can start building up immunities to these diseases. I was unable to receive the MMR vaccine because it is a live vaccine and I my immune system can't handle that. I don't know when and if I will be able to tolerate those. I know that I can not be around babies who have just had a live vaccine either!

I had another CT scan of my chest today. Unfortunately the report showed increased opacity in both right and left upper lobes of the lungs consistent with an infectious process. I saw the infectious disease doctor, Dr. Chemaly, and he wants me to have another bronchoscopy to determine exactly what infection is still going on in my lungs so that he can target it with the appropriate medications.
I am scheduled to have that tomorrow. Hopefully they will determine what the organism(s) are and he can give me the appropriate antibiotics/medication. Keep your fingers crossed!

No other major changes at this time. My blood counts are all in acceptable ranges....white count at 3.7, Platelet count at 135, neutrophil absolute count at 2.43, and Hemoglobin at 12.0

Sorry no new photos this time!

Thanks again for all your support and prayers!


     

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!