January 23, 2011
Wow! One month has passed, and I am already writing to you again. The holiday season was wonderful as we had family visits. Kim and grandson, Tyler, arrived on December 23 and stayed until December 26. We stayed home as it was extremely cold here. Having a grandchild visit is always a pleasure. On Christmas day, it snowed and continued through the day they left for home. Then on December 28, Kelli, Mike, and grandson, Cameron, arrived for a visit of several days. On one of the days, we all went to All Fired Up (pottery) and painted. Cameron painted a beautiful Christmas tree plate.
Now the medical stuff! Everything healed from the mouth surgery for the benign cyst on the roof of my mouth. Then on December 29, another great doctor, Richard Vacca, saved a tooth with a crown.
January has been an eventful month. I am sharing this for other transplant patients that have had GVH (graft vs. host) as a result of the body fighting the transplanted stem cells. I had GVH of the eyes. With each bout of the GVH, the scar tissue increased behind the lower eyelids causing the eyelashes to grow against the eyeball. In August of 2009, I started seeing an ophthalmologist, Dr. Joseph Iuorno, for treatment. Every four week until the end of December 2010, I had the offending eyelashes epilated (pulled) from the lower lids (usually between 10 and 20). In December, we decided it was time to investigate having a more permanent solution. I was referred to Dr. Jeffrey Zuravleff, a surgeon specializing in aesthetic facial surgery, reconstructive and orbital surgery.
I had my first appointment with Dr. Zuravleff (known as Dr. Z) on January 3. My eyelashes were in "full bloom", and I could barely keep my eye open. He explained and recommended corrective surgery to remove the eyelashes. I did not have time to worry as my appointment was made for January 5. Once I arrived at the surgical center and was admitted, I was prepped with an IV of Propofol. I remembered nothing of the experience. The procedure involves bilateral lower eyelid slitting (blepharotomy) and then freezing of the hair follicles (cryotherapy). I would highly recommend Dr. Z. My only problem was that I went to a plastic surgeon, had the problem corrected, but do not look ten years younger. Hmmm, I should have asked for a few tucks. The best part is being able to keep my eyes open without irritation.
When we got home, I looked in the mirror and found out why they wheeled me out the back door. They did not want me to scare anyone in the waiting room. I actually looked too terrible to be in a Dracula movie. One friend asked if Ross and I had been fighting over peanut butter and special dark chocolate (my favorite treat). I looked like me after 5 days.
I have been so very fortunate to have the very best doctors. Now Dr. Z. has been added to the list of great physicians.
So I am now calling January, The Year of the Eye. In February, I will probably have one of the cataracts removed. The following month, I'll probably have the other cataract removed. So it may be a little while before I write again.
I have had weight loss since the antibiotic reactions during the summer. My thyroid medication has had to be gradually reduced. My TSH levels are almost into the normal range. Hopefully this is a sign that I will regain some of the lost weight and be able to sleep a little more. I hit a low of 98 pounds and plan to regain at least 12. I have restarted exercising or as I call it, "my spring training". My new motto is "eat, drink and exercise".
All this detail is for a reason. Once the transplant is completed, an individual must realize that there may be "little bumps in the road". By being your own advocate, these bumps can all be smoothed. Each bump is a challenge. When the time for taking care of the "little bumps in the road" is tallied; it is minimal compared to all the wonderful time I have been given to enjoy life.
I hope this letter helps at least one person find the strength to continue his/her fight against cancer knowing that there is life after a cure. I am almost 8 years post transplant. Those years filled with many wonderful times are proof that it was worth the fight. I am a survivor and ready to meet any challenge.
Please continue to keep both Jill and Marian in your thoughts as they continue their fight. I received a letter from a 17 year old in the UK last week. He is fighting his own battle and will have his transplant in March. He sent me an e-mail thanking me for my journal. He is the fighter. His e-mail illustrated maturity and strength beyond his 17 years. Keep Jack in your thoughts.
Stay strong and fight for yourself.
April 17, 2011
It has been almost three months since my last letter. So much has happened that I felt sure that I should send you an update. I'll begin with the medical part of my journey.
March was a special month in my life. I was diagnosed with a blood cancer (myelodysplasia) in 2000. I was transfusion dependent until I qualified for a stem cell transplant. I received my older sister's stem cells on March 15, 2003. March 15, 2011, marked my 8th rebirthday. I have recently been told my transplant was a success as 8 years post-transplant is another milestone in my journey. I am still surviving for several reasons. I had a sibling stem cell match. I have a team of wonderful doctors and nurses at the Medical College of Virginia. I have a support group of family and friends. I have a strong determination to be a winner. My competitive nature is paying off.
March 2, 2011, was also a special day for me as I turned 71. I am sure I have a "warranty" for another 10 years.
Here I thought January was the month of the eye, but so was March and so will be April. In March, I had cataract surgery in both eyes. I did not realize how my "outlook" had gradually changed. I was amazed at the brilliance of colors after the surgery. The dogwood blossoms were spectacular. The most amazing observation was the beautiful color of a jar of pickle relish. The sad part of the whole process is that I discovered that I have wrinkles. I told my husband that I had to go and buy some wrinkle cream as I may be looking my age. Usually, the wait for corrective glasses is about 4 weeks after the surgery, but I grumbled. I told the doctor that I could not wait that long for reading glasses, so he gave me a prescription 5 days after the second eye surgery. If not, I told him that he would have one crazy patient.
At the end of this month (April 25), I will go back to Dr. Zuravleff as some of my eyelashes have grown back (6 in the left eye and 1 in the right eye). This means that I will again have the eyelid surgery as the lashes are growing in against the eye and causing irritation. I knew this was a possibility, but I had decided "not me"! I am not concerned about the surgery as I will be in la la land for the whole process.
We gave all the medical stuff a vacation and took a trip in the motor home. We went to see Kelli and family in Georgia. While there, we took Kelli and Cameron gemmin' (found some very pretty gems). We took Cameron to the Tellus Science Museum, and Ross took Cameron to a movie. After leaving Georgia, we spent an extra night in Gaffney, SC. While there, we shopped at the outlet center. I actually bought a few Christmas gifts. We traveled to Hiddenite, NC, and visited with Kim and family. On Saturday, Ross watched Tyler's baseball team win. Tyler is the team's catcher. On Sunday, we took them to the Hiddenite Gem Mines. With both families, Rummikub was the game of choice. The grandsons are very good at the game.
We arrived home on April 12. The unpacking is finished, and the memories are cherished. Now back to my new project of making ribbon yarn necklaces. I took some to Kelli to sell for donations to St Baldrick's Foundation. The information about the fundraising for childhood cancer research is below.
A sadness that still lingers in my heart is the hard fought battle by my grandson, Matthew. He lost his battle on Mother's Day 2009. His strength has been a strong incentive for me to keep fighting. He was a brave, courageous young man who shared his love and talents with others. It is so important for everyone to support research for a cure for cancer, but especially for childhood cancer. It only takes a small donation by many. One very viable charity is the St. Baldrick's Foundation. 46 mommas from across our nation have been accepted to take part in "46 Mommas Shave for the Brave" to be held at Union Station in Washington, DC, in September. If you are interested in supporting childhood cancer research, please visit 46 Mommas. Kelli is one of the chosen mommas for the class of 2011. You can read her profile and that of our precious Matthew. If you wish to donate, you may do so on Kelli's (Kelli Tracy) profile.
It is with pride that I celebrate my journey. I have the satisfaction of knowing that I have fought my battle and have won. I weep for those that have not won their battles. Life is precious, so treasure every moment. Thank you for being a part of my journey.
June 5, 2011
Oh wow, another letter. I am feeling well and have conquered or am conquering some "bumps in the road". I did go back to the eye doctor about the "dastardly" eyelashes that were not supposed to reappear. I had a procedure to take care of them in the office as I had 2 in the left eye and about 6 in the right eye. The worst part was having the injections in my face to numb the area. The doctor used a probe inserted about 3mm into the follicle to "zap" the lash. After the injections to numb the area, I did have double vision for several hours. So...I got two doctors for the price of one. I have been back for my post-op visit and did have a couple more pulled that decided to take a different route to the corner of the eye. Hopefully, we are finished with the lash business.
On May 24, I had my routine blood tests and was called from the clinic with the results and a schedule for more tests on the June 27th. My creatinine and phosphorus levels were too high and my calcium was too low. The kidneys were not filtering the phosphorus, so there was an imbalance between the phosphorus and the calcium levels. This caused the calcium to be leached from the bones. The additional tests were to determine the protein spillage levels. The protein levels were normal on the 27th and the creatinine levels had dropped some. I am now taking Renvela (sevlamer carbonate) to correct the phosphorus/calcium problem. I do not mind this except that Renvela does not dissolve in water. I feel like I am at Virginia Beach with my head in the sand and eating my way to China. I have always wanted to visit there, but not by this means of travel.
In early May, I was invited to speak at the Fletcher Bell Bass Tournament. I told Ross that I was going to a fishing tournament, and he did give me a strange look as I do not fish. I take that back, I did go fishing one as a child at camp. At that time, I caught two things...the only fish and on our way back to the cabins, I also caught the seat of my pants. So I went to the tournament. The funds raised were presented to the oncology group at John Randolph Medical Center. I spoke about the importance of patient support and my experiences with the oncologist at the medical center that diagnosed my MDS. It made me feel good to be able to share the importance of support for patients battling cancer.
The sisters are coming! The sisters are coming! Both of my sisters are flying in to spend several days with us. I am so excited about this visit from two very special people. They have given me so much throughout my journey to survival. It will be a time to talk and reminisce, a time for me to beat them at Scrabble, and a time for us to laugh a lot.
In my free time, I have been busy making ribbon yarn necklaces. I have "sold" 49 necklaces for a donation of $7.00 each to the St. Baldrick's Foundation to support research for a cure for childhood cancer. If you are interested, please send me an e-mail, and I will send you the pictures and order information. (firstname.lastname@example.org) The is my way in supporting our daughter, Kelli, as 46 mommas from across our nation have been accepted to take part in "46 Mommas Shave for the Brave" to be held at Union Station in Washington, DC, in September. If you are interested in supporting childhood cancer research, please visit 46 Mommas. Kelli is one of the chosen mommas for the class of 2011. You can read her profile and that of our precious Matthew. If you wish to donate, you may do so on Kelli's (Kelli Tracy) profile. This link is a copy of the letter that Kelli has agreed that I may share with you.
August 3, 2011
Well, it is time for a medical update. I want to continue to encourage those readers that are fighting the MDS battle to keep fighting and definitely be an advocate for yourself and others. I continue to learn more about this dreaded disease of MDS cancer, especially the post-transplant complications. At this point, I find it difficult to determine if some of the "bumps in the road"are transplant related or the "not so young" related maladies.
I have had another imbalance in my electrolytes with low potassium and low sodium. The sodium levels dropped to 129, and my doctor ordered a chest X-Ray to check for possible lung infection. The results stated that I had several probable and several possible "problems". He then ordered a CT scan of the lungs. I told them that they would only find that I still had non-symptomatic GVH of the lungs only a little more advanced. The results were in my favor as there had been no change since the CT scan of 13 months ago. On the visit following the 129 reading showed a normal sodium level of 135. The cause for the drop.I was told to drink more fluids, so I was drinking water, water, water. Yes, I did a good job of flushing the sodium and potassium from my system. Now I am also drinking G2 Gatorade for the potassium and sodium. The G2 series does not have the high sugar levels. The blueberry/pomegranate is good, but brush well after drinking as it does stain the teeth and tongue a gross shade of blue. If I am going anywhere, I drink the orange.
The CT scan also showed a possible thickening of the adrenal. That would account for the weight loss. One good thing, my thyroid medication has finally been corrected. I kept telling the endocrinologist what my dosage should be, so she finally changed it. My last test showed correct levels of TSH.
My phosphorus levels and calcium are still not in balance, and I am still taking Renvela which is supposed to bind the phosphorus so additional calcium is not leached from the bones. I call it liquid concrete, very gritty. I am waiting for an appointment with a renal specialist.
I requested an iron panel as I had the feeling that I had low levels of iron again. Yuck, I am now taking liquid iron in the morning. It does not taste that good. My youngest daughter calls me "the iron woman", but my husband calls me "the rusty lady".
Now if a patient suffers or has suffered from GVH of the mouth, the result may be a dry mouth problem. The Biotene dry mouth spray relieves the dry feeling. Dry mouth promotes dental problems. It is very important to take care of the whole body including the teeth. As a result of the dry mouth, I have had to have some dental work done. I realize that at 71, I should not let vanity rule my words, but it does. I had to have a small bridge made.hmmm. Nobody will know (unless they read this) that I have two crowns with an attached bridge. All I wanted for Christmas was my lower front teeth! Christmas in July! Also check with your dentist about using a fluoride tray. It only takes a few minutes a day to provide the added protection. Remember to brush, floss, soft stick, fluoride and probably more. It does become a routine. I must have the world's best dentist. He is kind, and I trust and respect him. It doesn't hurt that he is pleasant to the eye. So, if you need a good dentist in the Richmond area, I highly recommend Dr. Richard Vacca. I am amazed that I really do not dread going to the dentist. I just think of the visit as another social event.
I know that this sounds like a lot of "stuff", but also realize that I am so very fortunate to be able to talk about all of this. I have had this 8 plus additional years because of the stem-cell transplant. I have also recently decided that my life does not revolve around health issues. The fun part first and the medical part second. I will fit my medical around my life, not my life around the medical.
Scott and Kyle (almost 5) flew in from California and spent a week with us. I really felt sad when they left. Kyle told me that he wanted to stay with me for six years. Kim and Tyler will be here for a visit in August. Kelli, Mike, and Cameron will visit in September on their way to Washington, DC, where Kelli takes part in the 46 Mommas Shave for the Brave to raise funds for childhood cancer research. If you wish to make a donation to support Kelli, send me an e-mail. I will forward the information to you.
I finished my necklace project to help raise funds to support Kelli's participation. I made around 150 and have sold most of them for a $7.00 each donation to St. Baldrick's Foundation. I am now ready to start my next project of crocheting baby blankets for the neonatal unit at the Medical College of Virginia. In my own way, I am trying to "pay back" for having been given all these extra years.
When my sisters were here, they gave me my first watercolor painting instruction. I have started and completed one painting. I am not quite ready to have my work hung in a national art museum!!!!!! One of my grandsons would have encouraged me by telling me that it was good for a beginner. That thought was in my mind during the whole painting process. Maybe that is a sign of good therapy.loving eyes looking over my shoulder.
We are taking another trip in our motor home this year. We will spend the first week in October at Myrtle Beach. I should not spend a lot of time in the sun, so October is a good time for me. I'll wear a long-sleeved shirt and a hat and enjoy my walks on the beach. Maybe I'll even do a little Christmas shopping while we are on vacation as there is a great outlet mall nearby. I do love to shop.
Enjoy life as I do. Hug often and smile. I will try to write again before the end of 2011. I plan on being busy and happy.
November 24, 2011
This is the appropriate day to send you my latest update as I have many things to be thankful for on this special day. I continue to survive with just a few more bumps in the road.
I still have to concentrate on fluid intake as these "old" kidneys do not seem to be working like they did when I was 20! My phosphorus levels are still too high, so I must take the liquid gravel, Renvela, with every meal. Grit! Grit! Concrete! I have had my appointments with the renal specialist, Dr. Domenic Sica. He is monitoring my blood tests for significant changes. I must concentrate on drinking enough clear fluids, and as strange as it sounded to me, I must increase my sodium intake. I now drink one cup of that salty, nasty chicken bouillon every day (over 1100 mg of sodium). This is unusual as I always tried to watch my sodium intake.
I am still taking the liquid iron in the morning as my iron levels have reached just into the normal range, but the saturation levels are still a little too low. They will check the levels near the end of December. I now take Vitamin D every Friday afternoon as my levels were too low.
I have been back to Dr. Zuravleff about my eyes. As you recall, I had the surgery to remove the lower lashes as they irritated my eyes. The GVH scarring in my eyes caused the lower lids to turn in. The normal body hair, only visible through a microscope, was irritating the eyes. On November 2, I had bilateral resection of the lower lids. There was an incision and sutures in both lower eyelids. I was really "beautiful" for about a week after the surgery. I had Ross take a picture, but decided I had better not share it as it would have given the strongest person nightmares. I looked like I had been in a terrible fight and lost..red and purple from my eyes to my mouth. I scared myself when I looked in the mirror in the morning. The eyelids are almost healed now, I look human. The doctor referred to me as "here comes trouble" when he came into the operating room and the same when I had my follow-up visit. Hmmmmm. I told him that I really liked him, but did not plan on returning. I told him that I would send a Christmas card. I would certainly recommend him to anyone that has eye problems resulting from the GVH scarring. I have been so fortunate to have such wonderful doctors, and it is a plus that they are pleasant to this "ole" woman's eyes.
We did have our week at Myrtle Beach in October. The weather cooperated with us. We sat on the beach in the afternoons, took walks, and shopped. I did enjoy a vanilla milkshake and a pumpkin muffin when we walked on the boardwalk. The ride to and from the beach was too long for my bones, but the time at the beach was great. This was our last motor home trip. We now plan to sell the motor home. We have enjoyed the travel for the last six years.
We will be spending a quiet Thanksgiving here at home. Christmas will be a little busier. Kim and Tyler will be coming to visit on the 23rd for four days. Scott and Kyle will be flying in from California for the week between Christmas and New Years. Ahhh, one more week, and I'll be decorating the Christmas tree and addressing the cards. I have my shopping finished with just a few things left to make.
I have spent the last several days in the kitchen. Homemade apple sauce is in the freezer. Pie pumpkins have been baked and the puree is in the freezer. The sweet potatoes have been baked and the sweet potato pie filling is in the freezer just waiting for the pie crust and baking for Christmas. I have several large butternut squashes left to bake. Our farmer's market just moved, and is now only two minutes from us. They will be open until the end of December. I just wish I had room for a big freezer.
This has been a busy year with a few too many "bumps in the road", but the year is winding down. I expect "smooth sailing" for the remainder of this year. I figure the teeth are fine, the eyes are fine, and I am drinking plenty of fluids.
I do think often about my other MDS transplant friends, and the journeys they are taking. I wish I could do more for them. My wish is that everyone that is healthy would register to Be the Match for someone needing a stem cell transplant. Everyone deserves a chance at life. Have a safe and happy holiday season. Write when you have time.