Wade heard from his PA yesterday concerning his needle biopsy…finally! And the results were good! The new tumor is just “tissue”, not cancer, not Castleman’s, just extra tissue. The tumors have not grown in size which is also great news! Dr. Fayad will be in touch soon to discuss what is next. We are so thrilled! And very thankful to all of you for your comments and concern. I will keep you posted when we get more news.
A really good sign of wellness is the return of the ole mojo, energy, busy-ness, and not taking the time to blog! I can finally say that I feel like my self again, that person I was before I got sick. It’s been a long journey, a journey worth every step whether forward or backward, a journey that has blessed me with new friends, random acts of kindness, and the belief that chance meetings with strangers weren’t so random after all. It has been a life changing experience, for the better. Deep down in my heart I know I would still feel this way even if my outcome had not been successful. The love, caring, and kindness of others in the face of adversity is, for the lack of a better term, life changing!
Dr. Hosing, my stem cell transplant doctor at MD Anderson Cancer Center whom I dearly love, took me off of my immune suppressant drug, sirolimus, last July. I had a few bouts of minor Graft vs Host issues which were treated. Each time it returned, it was easier to get rid of, until finally, it didn’t return! I credit this to my awesome donor, Robert, and his strong immune system which I now call my own! Robert is one of those blessings of my life changing journey. It is impossible to find the words to express my love and gratitude for Robert, my life saver. A future blog will be about our awesome trip to Chicago with Robert and Theresa last summer when we went to the Chicago White Sox and Yankees game, that highly publicized first game A-Rod played. We had a great time!
OK, now for the flip flop part. Wade and I will be returning to MD Anderson on Monday. This time we are going for Wade, my beloved husband who was the most amazing care giver. Last fall we went to MD Anderson, his first appointment and my checkup appointment. How strange for us both to have medical record numbers and to split up to make all of our appointments! He has a very rare disease called Castleman’s disease. These are lymph node tumors. He has had two tumors removed, the first one was under his arm and removed about 25 years ago. The second one, 7 years ago in his neck, and he now has a large, very vascular tumor in his chest near his heart and lungs, making surgical excision too risky. When this tumor was found last summer during his yearly physical at the Cooper Clinic in Dallas, we knew it was time to head to MD Anderson. My Dr. Garcia-Manero, who treated me at MD until my stem cell transplant, and whom I have the utmost respect and love for, recommended Dr. Luis Fayad who specializes in lymphoma and myeloma. After a pet scan, another tumor was found in his abdomen. Next week he will have another pet scan to see how much the tumors have grown, and a needle biopsy of the tumor in his abdomen. Then we will find out what his recommended treatment will be. There are two types of Castleman’s, one is a single tumor that affects one lymph node and doesn’t recur, and is not hereditary. Wade’s brother has had a single Castleman’s tumor removed years ago, and one of Wade’s daughters has had a Castleman’s tumor removed when she was 18 years old. So much for the non hereditary part! So, this is a nontypical difficult case. Most of the doctors whom Wade has seen haven’t heard of Castlemans since med school! The other type of Castleman’s occurs in clusters and sometimes turns into lymphoma. Thankfully, Wade’s tumors have been single lymph node tumors. We are both very pleased and have the utmost confidence in Dr. Fayad. On our first appointment with him, he played a little joke on us and made us laugh! We are so fortunate to be at MD Anderson, the number one cancer center in the nation with the very best doctors.
I will be starting on a new journey myself, that of caregiver. I hope and pray that I can care for Wade just as he cared for me…selflessly, lovingly, and completely. I will be able to understand the other side of the journey.
Back in October, Wade and I sponsored a donor drive with Be The Match National Bone Marrow Registry and 29 people did the cheek swab and entered the registry. We were a little disappointed because the guidelines had been narrowed by the registry by age restrictions, so only 29 people were able to get in due to the new age limit of 44 years old. We could have entered a significant amount of people if the age limits had not been lowered.
Two of Wade’s employees have been notified that they are potential matches!!!!! Yes, out of our 29 people, 2 are potential matches! My heart is singing and my feet want to dance, except that they are 2 left feet! This is a huge deal for me, not to mention 2 other people out there who must have a donor in order to live. Thinking about Robert entering the registry three years ago and then saving my life, I am humbled by this act of giving. Angie, when she received her letter that she might be a potential match, ran to the bathroom and fell to her knees and prayed that she would be the one! Libby is wanting to save someone’s life just as well.
So I am begging all of you to get in to the registry. It is a simple cheek swab. You could be the one to save a life just like Robert saved mine! I am overflowing with happiness and joy.
Marrow.org will get you there! You could save someone’s life!
P.S. I just got to 30,000 views…thank you so much! My heart is so full and happy!
Santa Fe New Mexico is one of my favorite places to visit. Recently, Wade and I wanted to have a fast weekend get away, and our critieria was four hours away or less. That left us with a choice of Albuquerque NM, Ruidoso NM, or Santa Fe NM. We haven’t been to Santa Fe in a while so it won the contest! We weren’t disappointed in any way! Last minute internet searches for a reduced hotel rate got us a room at the awesome Eldorado Hotel and Spa, a member of the Preferred Hotel group. This hotel is located only 2 blocks from the plaza on W. San Francisco Street. The room was quiet, the bed very comfortable, and the bathroom clean with nice amenities. Their cocktail lounge, The Agave Lounge, makes a wonderful agave coin margarita. And the green chili cheese “Kobe” beef sliders were extremely yummy! We will definitely be back at the Eldorado. Another favorite place to stay is at the La Fonda Hotel which is at least 200 years old and is on the square. It is currently under renovation, but is and will always be an amazing place to stay.
The Eldorado Hotel and Spa
The La Fonda
After checking in to the hotel, we headed down to the plaza and decided to visit the Loretto Chapel. I have visited it several times before, but this was Wade’s first time. It is the most beautiful chapel. Two mysteries surround the spiral staircase in the Loretto Chapel: the identity of its builder and the physics of its construction.
When the Loretto Chapel was completed in 1878, there was no way to access the choir loft twenty-two feet above. Carpenters were called in to address the problem, but they all concluded access to the loft would have to be via ladder as a staircase would interfere with the interior space of the small Chapel.
Legend says that to find a solution to the seating problem, the Sisters of the Chapel made a novena to St. Joseph, the patron saint of carpenters. On the ninth and final day of prayer, a man appeared at the Chapel with a donkey and a toolbox looking for work. Months later, the elegant circular staircase was completed, and the carpenter disappeared without pay or thanks. After searching for the man (an ad even ran in the local newspaper) and finding no trace of him, some concluded that he was St. Joseph himself, having come in answer to the sisters’ prayers.
The stairway’s carpenter, whoever he was, built a magnificent structure. The design was innovative for the time and some of the design considerations still perplex experts today.
The staircase has two 360 degree turns and no visible means of support. Also, it is said that the staircase was built without nails—only wooden pegs. Questions also surround the number of stair risers relative to the height of the choir loft and about the types of wood and other materials used in the stairway’s construction.
Over the years many have flocked to the Loretto Chapel to see the Miraculous Staircase. The staircase has been the subject of many articles, TV specials, and movies including “Unsolved Mysteries” and the television movie titled “The Staircase.”
Then it was dinner at Geronimo. Regretfully I didn’t think to get photos here. It was a very memorable meal…probably in our Top 3 ever. We had a delicious Bing Cherry and Proscuitto Salad with Baby arugula, Fresh Burrata, Port Reduction and Sweet Sherry Vinaigrette. My entree was Fiery Sweet Chili and Honey Grilled Mexican White Prawns with Jasmine Almond Rice Cakes, Frisee’ Red Onion Salad, and Yuzu Basil Aioli. Absolutely to die for! Wade had the Peppery Elk Tenderloin and Apple-wood Smoked Bacon with Roasted Garlic Fork-Mashed Potatoes, Sugar Snap Peas, and Creamy Brandied-Mushroom Sauce. He was equally impressed! To top it off we enjoyed a nice coffee and decadent mandarin orange tres leches cake. Go there! You will not be sorry! Geronimo Restaurant, 724 Canyon Rd., Santa Fe. Phone for reservations or use Open Table.
Here are 2 asses! Wade made this joke, not me!
Another fun thing to do is people watch from the Thunderbird Bar and Grill (formerly The Ore House) on their second story balcony overlooking the Plaza. We enjoyed great margaritas and chips and salsa, guacamole, and queso.
Looking out over the Plaza from the Thunderbird, you can see the Loretto Chapel in the distance.
The Indians are getting ready to sell their beautiful jewelry on the Plaza.
Great shopping in Santa Fe.
And of course, Jackalope, which has gotten huge!
After Jackalope it was time for lunch and Harry’s Roadhouse was just the spot. We opted for a hand shaken margarita and a gluten-free pizza. Our recent adventure of learning about gluten free foods has been a process of trial and error. It’s about learning which flours give the best results, and since we love to make pizza we decided to try it at Harry’s. This margherita pizza with proscuitto was delicious. The crust was tasty and crisp. I asked our waiter and he told me it was made from brown rice flour, tapioca starch, and potato starch. We tore into the pizza before I got the photo, so here is half of the pizza that was left!
On our last morning, we got in line outside the door 30 minutes before Cafe Pasqual’s opened for breakfast. We had tried to get a dinner reservation the evening before, but it was already full. Pasqual’s is one of those rare, amazing places that is always the same. Always consistently delicious year after year. It remains small with a community table, uses sustainable organic ingredients, and is the tastiest food ever! I ordered Huevos Rancheros with 2 eggs which most people get over easy, but I ordered mine medium, with black beans on a corn tortilla, red and green chile and melted jack. Wade ordered Huevos Barbacoa Con Chile D’Arbol Salsa. It was marinated, slow cooked shredded beef with 2 eggs on corn tortillas , refried beans, and cotija cheese. We thought we had died and gone to heaven! After practically licking our bowls, I asked our waiter for dessert. Wade thought I was crazy until he took a bite of the Lemon Meringe Tartlet. It was completely amazing! You will love Cafe Pasqual’s. Be sure to pick up one of their new cookbooks, “Cooking With Cafe Pasqual’s”, their second book. The first cookbook was published in 1993, “Cafe Pasqual’s Cookbook”. The executive chef and founder of Pasqual’s is Katharine Kagel. In 1999 Cafe Pasqual’s received the James Beard America’s Regional Cooking Classics award and Kagel was nominated for Best Chef: Southwest that same year.
It was time to head for home, but first we stopped by Trader Joe’s and loaded up some great groceries, a pineapple plant, and a beautiful huge basil plant! We are already talking about our next weekend getaway to Santa Fe!
On was the day before Easter Sunday, Wade and I were outside doing some major yard work/cleanup. Thanks to the drought we are in, there was lots of dirt from dust storms and suffering plants and grass. Not a pretty sight… The following morning there was one lonely, lovely purple flower on the vinca growing along the driveway. I had to snap a picture…it was a sign of new growth, hope, rebirth, new beginnings…all of the things we are mindful about on Easter Sunday. It was a sign! I was in awe!
Two days later, the birth of a new grandchild Ella, Haley and Jon’s first child. A new beginning! And since then, new beginnings everywhere in my great big wonderful family and family of friends! Relationships mended, old friendships renewed, new friendships nurtured, moving on with new jobs and endless possibilities, new opportunities, and graduations from high schools and college.
On my last appointment at MD Anderson a couple of weeks ago, everything was really good…only a few minor problems. Dr. Hosing is letting me very slowly try weaning off of the immune suppressant drug I am on, sirolimus. When I tried this last fall, it didn’t work very well. Graft Vs Host set in very quickly. There were liver issues, and I was back on the drug. However, last Monday when I had my blood checked, it was the most normal blood test results that I have had in years!
Today is my SECOND birthday! Exactly 2 years ago I received stem cells from my donor, Robert. What a trip it has been! During those two years I suffered temporary blindness and migraine headaches from drug reactions to tacrolimus and cyclosporin, all of the usual terrible side effects from busulphan and ATG, weight loss of 40 pounds, graft vs host on my skin, in my upper GI and lower GI tracts, liver, and gums, muscle weakness and foot-drop from steroid use for GVHD, deep vein thrombosis in my left leg, and a very rare virus that we stem cell transplant patients are extremely unlucky to get – The dreaded BK Virus! Then there are all of the emotional issues I dealt with. Some of the most difficult were friends that moved on without me, chemo brain, and dealing with depression and forgetfulness.
I am not griping! With my wonderful husband, Wade, constantly by my side, all of my energies, which were mostly spiritual rather than physical (fellow survivors will relate to lack of energy!), were devoted to getting through…getting by…getting well. Each baby step offered new hope. Baby steps turned into more normal steps, and sometimes even happy feet!
So, on this special day that I am now 2 years old, I want the world to know that all of those trying times are worth it. Be steadfast, hopeful, positive and kind, appreciating each day, turning baby steps into happy feet. We can only have positive outcomes when we have positive attitudes. I pray daily for positivity in my life. And I pray for those less fortunate than me.
Speaking of all of these new beginnings, Robert, my donor, is my life saver! With out his complete and selfless act of love and compassion by giving me, a total stranger, his stem cells and a new chance at life, I would not be writing this post. He just graduated from college and will soon be entering law school. Another new beginning! I know he will be very successful with anything he does. Robert, you are awesome and amazing! Today I am celebrating 2 glorious years of new life and new beginnings. But I am also celebrating Robert! I love you Robert! And I love my great big beautiful family!
After dealing with illness, traveling, the holidays, and not feeling very creative, I have decided to get back to the blog. To those of you who have worried about my absence, I totally appreciate your concern! I am doing pretty darn good, all things considered…which has made me give a lot of thought to my new normal.
My friend, Julie, a cord blood transplant survivor, wrote me a sweet note a few weeks ago and mentioned that she was trying to find her “new normal”. It was nice to have a name for this phase of my survivorship. As a stem cell transplant survivor, I had been thinking a lot about it myself and struggling. “Whenever I am off of my immune suppressant drug, sirolimus, I can do such and such” and then, “what if that never happens”. I had to throw off my rose colored glasses and realize that “normal” will never be the same as it was before I got sick. This doesn’t mean it is particularly bad, it just means my life is different. It is impossible to go through the journey without being changed.
The first of December I got sick with a sore throat. It was the first time I had been sick since my transplant at MD Anderson a year and a half ago. I totally understand now why we must go through all the things we do to prevent getting sick. Without much of an immune system (I am still on sirolimus), I became very ill very quickly, was hospitalized, and it took a month to get well. Which made me realize the importance of compliance. As time goes on, carelessness can creep in. I truly realized the importance of all the things my survivorship nurse at MD Anderson had taught me. I’m really good at hand washing and sanitizing, and staying away from people who are sick, but I had come to the realization that I must live my life like a healthy person out in the real world instead of staying couped up at home afraid of getting sick. I guess what started me thinking about all of this was that a few months ago I tried to get off of sirolimus, with the permission of Dr. Hosing. It didn’t work. It took only a week to have symptoms of Graft vs Host Disease, and much, much longer than that to get back to where I was. Actually I don’t feel like I am as good as I was before trying to get off of sirolimus. I am really looking forward to my appointments at MD Anderson next month. This brings me back to my new normal.
I can honestly say that the things I occasionally gripe about…taking a lot of medicine, chemo fried hair, tiredness, frequent blood tests, feeling isolated, and lots of other “stuff”, are really not all that bad. In fact I am really proud of where I have been and where I am now in this journey. It is just a matter of acceptance and compliance. And remembering all of the many wonderful blessings and friendships that have been given me! The positive things far outweigh the negative.
So, here it is in a nutshell! Find your new normal, keep compliant with your meds and care, live life to its fullest, and accept the beauty and wonderfulness of being given a second chance!