5th re-birthday

In April I celebrated my 5th re-birthday and last Thursday I had my 18th bone marrow biopsy. I was so excited to receive the news that my blasts continue to maintain at 1%. The other information is not as relevant. I started this journey six years ago on September 6th that my bone marrow biopsy had come back positive for MDS (Myelodysplastic Syndrome) and as the tests continue to come in it appeared I had a high risk level of this disease. At that time my blasts were at 12% and there was one chromosomal abnormality (Trysomy 8).

It was clear that my only chance of long term survival was to have a stem cell transplant. I was extremely fortunate to have had a 10/10 match to my unrelated donor named Siegmond from Germany. I will forever be grateful to him for 5 more years of health and happiness. We have communicated by letter and email several times, and he knows how grateful I truly am.

The older I get, the more I realize God's plans for me and what he wanted me to learn from this experience and all the encounters I have had in my life. I will never stop learning and growing. My desire is to continually focus on my personal growth toward the love He wants to show me in each aspect of my life. Even in the more difficult moments.

I am also grateful to my wonderful stem cell doctor at MD Anderson, Dr. Richard Champlin and his PA Toby Fisher for their care throughout the stem cell process. They watched me like a hawk, always bringing me back in for a check ups and testing any time I exhibited symptoms of fever or illness. I am also grateful to Dr. Garcia- Manero for getting my blasts to a level that I could successfully have the transplant. I am told he was less optimistic than Dr. Champlin about my chances of a 5 year survival.  But that's why he and Dr, Champlin are doing what they do....always pursuing perfection and success in what they do and the patients they treat!!

I am told that I won't have to receive another bone marrow biopsy, unless something suspicious comes from my blood checks. My blood levels will continue to be checked every 6 months. So that was wonderful news to me!

Thanks for traveling this journey with me.

Gail

4th Re-Birthday

I am celebrating my fourth "re-birthday". Still feeling fabulous and thanking God every day that I am going to be able to be a part of my son's wedding this Saturday. It is remarkable how well I feel and I am so excited to be able to have come this far. This is my dream come true for my husband, Jerry and I to see our oldest son marry a wonderful woman who shares his love and dreams. Dr. Champlin and Toby Fisher, PA have been there with me throughout the majority of this medical journey. I am eternally grateful for their medical diligence and expertise.

Third Birthday

Today I celebrate the anniversary of my third year since my stem cell transplant. I am still cancer free. The results of my last bone marrow biopsy on April 3rd (My 15th biopsy...yuk) came back looking good....1% blasts and normal cytogenetics!  They did find an infection (actually two organisms growing...one bacterial and one viral) in my lungs. So I'm on two different antibiotics.
I have no observable symptoms though. Go figure. I guess this is a lingering sign that my immune system is not normal. Which I was warned upon leaving the hospital that my immune system would never be the same. I just haven't had any real observable illnesses though. They only found this one out after doing a routine CT scan of my chest.

I have decided not to return to my profession as a speech and language pathologist for now, because I feel God is calling me to spend my time in volunteer capacities. I am taking a course through the archdiocese to do pastoral care ministry in the hospitals. I also volunteer at St. Cecilia Church as a sacristan and have other responsibilities in the Regnum Christi Movement. I still enjoy work and play at the family ranch and horseback riding, golfing and traveling. I am so blessed to have the opportunity to do all these things and still have my health as well.

 Dr. Champlin and Toby (PA) at my last check up in April. They are wonderful!

Family Easter photo!

My Two Year Birthday

Today marks two years since I had my stem cell transplant on April 18, 2014. I am so VERY blessed!
I am feeling great and doing all the things I had hoped to do in life. I haven't gone back to work yet, but I'm not sure I will...at least for a while! I am doing a lot of volunteering though. My days are busy. I walk and exercise almost daily, as well as attend mass frequently during the week. Jerry and I have had some opportunities for traveling with his work related functions and we were even able to take a family ski vacation in Banff Canada this winter.

Below is a photo of our team "The Marrow-thoners" from the March for Marrow 5K run/walk sponsored by the AAMDS foundation (Aplastic Anemia and Myelodysplastic Syndromes). The run raises money for research and awareness about bone marrow failure diseases. The event was organized in conjunction with the University of Houston's Frontier Fiesta on March . In addition, "Be the Match" had a bone marrow swabbing station and more badly needed potential donors were added to the National Bone Marrow registry. The weather was fabulous and it was a joy to share this event with my family and friends.

Guess who I ran into at the race?... my Leukemia/MDS specialist at MD Anderson, Dr. Garcia- Manero. It was great to give him a big thank you hug! You can see him in the photo next to me! What a powerful day! I never dreamed that one day I would be able to be walking and raising awareness for the disease that nearly took my life!

 

 

I will go back to MD Anderson this Thursday for a follow up bone marrow biopsy and blood work. Thank you, Jesus, for staying by my side through all my trials and joys in life!  

18 months post transplant

Today marks my 18th month post transplant.  I had a bone marrow biopsy on October 8th and a CT scan of my chest the week before that. I am still in remission, and feeling extremely blessed. Hurray!
The CT scan is pretty status quo so the little opacities (chalky markings)left on my lungs are most likely the result of scar tissue. My pulmonary function tests are staying about the same....I think you would say they are in the normal range, but I'm not sure of that. I still take the anti-viral and anti-fungal medications. But I was taken off all antibiotics. So I am thinking they will take me off those meds before long. There are no signs of Graft Verses Host Disease at this point, which is good! I recently found out my thyroid level was way high, but the doctors don't seem overly concerned and they don't think it was related to the stem cell transplant or the chemo.

It is hard to believe that two years ago on September 6, 2013 I was diagnosed with MDS by Dr. Kelty Baker at Methodist Hosptal. September 16, 2013 was my appointment with Dr. Guillermo Garcia-Manero at MD Anderson to seek a second (third) opinion. This is where my diagnosis was confirmed and I was placed in the high risk level with a blast level of 12% and one chromosomal abnormality. The outlook for this level of disease was sobering, placing me at the 18mos. average survival rate; unless I was lucky enough to be able to find a donor to lend me some healthy stem cells or bone marrow. As I moved on to seek advice from my stem cell transplant doctor, Dr. Richard Champlin at MD Anderson, I was told that only about 33% would make it through the stem cell transplant and then avoid a reoccurrence resulting in a "cure". Dr. G-M was not willing to say I would ever be able to talk "cure", but he agreed that my best outlook would be to have the stem cell transplant following a regimen of gentle chemotherapy This was my only hope, so I went on with faith that the risks were worth pursuing in hopes for the cure. The rest is history! And I know in my heart that God had a plan for me to hang around here a while longer.

Jerry and I have been taking dancing lessons and have really enjoyed them. I asked for the lessons last Christmas and we finally got around to taking them in July. Jerry and I just returned from a board meeting in Fredericksburg and were able to try out our rehabilitated dance skills with a real country band and a German Oompah band. It was a ton of fun!

I have been staying physically active and volunteering in a several areas. Basically, I'm doing a lot of things I never had time to do before. I also am taking a bible study course and enjoying all of it. My fitness is usually walking the neighborhood. Jerry and I are tracking our steps with our "fit bits" and kinda have a competition going with who can get the most steps each day. Jerry usually wins out, but I'm getting my targeted 9,000 to 10,000 steps most days. You get a lot of steps dancing....a great exercise...I recommend it to anyone!

Things are going well and I feel great! I feel so blessed to be able to enjoy life. There are so many in my shoes who are struggling each day.

Thanks for caring enough to keep my recovery in your heart and prayers.

Gail

Jerry, Gail Stephen and Nathan at my birthday dinner!

Bone Marrow Biopsy #12

I have had a very busy summer with several out of town get-a-ways. Since our trip to Lourdes, France in May, we were able to go for a fun week at the Frio River near Concan, Texas from June 14-20th. Then just a week later on June 27th Jerry and I headed to Nappa, CA for his AGC Executive Leadership Conference. I also had a nice time at my 40th St. Agnes Academy reunion at the Braeburn Country Club on June 13th. We actually joined with the other classes at IWA, Jesuit, and St. Thomas. It was good to see old friends, some from as far back as my grade school days at Corpus Christi Parochial School.

This past weekend I was able to enjoy a weekend at lake LBJ with my speechie friends in Austin and the surrounding area. Then I picked up my friend Carol, who lives in Austin and we headed back to Houston for an enjoyable several days just catching up since I hadn't seen her since before my stem cell transplant.

My last bone marrow biopsy was performed on July 13th. Though I haven't formally met with the doctor about the results, Dr. Champlin's PA contacted me by email shortly after to tell me the blasts were still at 1%, which is well within the normal range. I guess it is a sign you are doing better when the PA only emails you and there isn't even a phone call to notify you of the results....haha!  I continue to have routine CT scans of my chest every few months. This latest one on the 13th of July showed some slight improvement, but there is still some signs of the growth on my lungs. I continue on one antibiotic, and an anti-viral, and an anti-fungal medication for this. It is odd because I still don't have any sign of any breathing difficulty.

I am feeling so blessed to be back to just about all activities as normal. I still have to be careful of the sun and so I wear SPF guarded shirts and a hat and of course sun block when outside for any length of time. I was told by the "survivorship nurse" that due to the chemo I had, I am 12 times more likely to develop skin cancer. YUK. I love the outdoors so this is a new set of routines for me to get used to.

Thank you for caring enough to check up on my status. I thank God daily for my health, for He is the Great physician!

A Time of Reflection

    As many of you know, I was given an incredible opportunity  to make a Healing Pilgrimage to Lourdes, France with the Order of Malta. Lourdes is the place where The Virgin Mary, appeared to a young peasant girl named Bernadette Soubirous in the year 1858. Aside from the apparition of Our Lady, numerous confirmed miracles have occured and countless other nonconfirmed healings continue to take place in this tranquil village at the base of the Pyrenese Mountains in France.

    The deacon at our church, Deacon Sam Mancuso, recommended me to the Lourdes Order of Malta team leader in Houston, who is Kate Signorelli. Kate and her husband Bob, met with Jerry and me one evening last year along with our good friends Kathleen and Bill Schoefield, who also were in the order of Malta. They encouraged me to apply for the pilgrimage which was an all expense trip for the malade and their companion from Baltimore to Lourdes. The word "malade" is French for (one who has a malady). A long selection process occurred throught the order of Malta.  The first thing I needed was a  written concent from my primary oncologist stating that I was able to travel outside the U.S. Luckily, Dr. Champlin approved that late in 2014.

    In February, I was notified that I had been selected to attend the pilgrimage. Jerry and I were elated, but I actually felt a bit undeserving because by that time my blood counts were looking good and I was feeling so much better. I mentioned to Kate that I was really feeling better and if there was a more needy person, I would not be offended to be replaced. She promptly replied that the decision was ultimately in Mary's hands, and that she had decided. Realizing that I still have the chance of recurrence of my cancer and other complications that could occur, I decided to look at this as an opportunity for both physical and spiritual healing and a way to give thanks for my progress thus far.
 
  So on April 28th we departed for Baltimore and met up with all the rest of the 48 maladies and 334 pilgrims from all over the country. There were 6 maladies from the Houston area and about 10 from Texas. My experiences at Lourdes on this Pilgrimage were difficult to describe at the deepest levels. I experienced both joy and sadness. Joy for the kindness and love that was ever present and poured out toward the malades and their companions by the Knights and Dames of Malta and the volunteers that accompanied them. Jerry and I were surrounded by good and faithful Christians who paid their way to France just to make our trip as pleasant and burden free as possible. On the other hand, I couldn't help but feel sadness for the many families who were experiencing great burdens and hardships due to illness; but in the midst of their suffering they presented with great dignity, humility, hope and resolve. By at large it was an upbeat and happy bunch of people, contrary to what many of the new pilgrims were weary of.

   I also experienced feelings of "awe" over the breathtaking beauty and grandeur of the Grotto compound area. The river Gave (meaning turbulent) runs through the town of Lourdes and right next to the grotto. As you stand on the bridge passing over the rushing water and strong currents of the Gave river and look to the immediate left and see the statue where Mary once appeared in the Grotto: I was overwhelmed by the opposing sense of the strength and magnitude of God's beautiful creation in nature and his serene and loving Mother who is capable of bringing peace and control in our lives, through her intercessions to her son, Jesus.

    I think my greatest emotion was that of immense gratitude. I wanted to come to Lourdes to give thanks to Jesus and Mary for the powerful healing I have experienced through my illness and stem cell transplant. At this point I have had a year of increasingly good health and well being. For this I will always be grateful. I still face the reality that my leukemia could return, or that I could acquire graft versus host disease, or be affected by an out of control infection, or have a different kind of cancer as a result of the chemo and prior cancer history. But right now, it's time to be thankful and to live each day God gives me with gratitude. And I am so, so grateful and blessed and feel the blessings that have been poured out on me that go deep to my soul.

   The first day we all were wheeled down to the baths in our carts. The baths are where the pilgrims are allowed  to get quickly submersed in the spring water that erupted as a result of  Bernadette's digging at the request of Mary in the 1800's. One of the women on our team was a malade two years ago and she was back this year as a Dame volunteer. Two years ago she was experiencing a neurological impairment that kept her from walking without a scooter or walker. After being dunked in the spring water at the baths at Lourdes she walked away from the baths and returned home from her pilgrimage without any need for the scooter or walker. She is being worked up for a miracle by the medical and investigatory body of the church, which takes years. Jerry and I thought it was more than a coincidence that my "bath" in the waters of Lourdes took place on the feast day of St. Peregrine, the saint that is called upon to heal cancers.

  Whether I have a cure or not, I trust in God's great wisdom and Mary's intercessions for me. He knows Jerry and I want this more than anything but He knows what's best for me, even if it means suffering. I just ask for the courage and strength to live through my future crosses in the best way I can to serve Him and bring others to his Kingdom. I have a strong sense that I shouldn't spend time looking back, but I should keep trudging forward figuring out how He wants me to serve Him best. I feel that one of the big spiritual insights I had at Lourdes was the awareness that we ALL will be called to carry some crosses. And instead of asking "why me?" when something bad happens, I should be saying "Why NOT me?