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?
   

My One Year Birthday- Time to Celebrate!

Yesterday marked my one year birthday. We celebrated with family and fiends! Here is the evite we sent out.

 

 

 

I invited those people who helped me through my illness: my "sitters" during the first 100 days after my recovery; the people who helped with taking care of my brother Greg and his supply needs when I was unable to be around him due to my susceptibility to infections, and those that handled Greg's caregiver's payroll; my St. Agnes friends who organized the rosary and made my prayer blanket; those who donated blood and platelets when there was a shortage, among other things. It was a lot of fun and I am feeling so incredibly blessed.  My most recent bone marrow biopsy came back looking good. My blasts are in the normal range and my donor's Tcells are taking over nicely....at least on paper. The CT of my chest showed that the infection is improving and the Infectious Disease doctor felt that my lungs are about as good as they can get. Still a few opacities that could be signs of scaring. He was ready to discontinue some of my antibiotics; however, Dr. Champlin wanted to keep me on them until we return from our healing pilgrimage to Lourdes, France. I have a follow up appointment with Dr. Champlin tomorrow.

It's getting late. I will try to add some photos of my birthday party in the next few days.

 

 

A photo of my "sitters" who stayed with me during that 100 days after the transplant.

(Not all of them could make it to the party)

 

 

Dr. Champlin and Toby Fisher, PA

One Year of Togetherness



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!