Wow, this has been such a special week with wonderful things that have lifted my spirits that have made me a better person.
Medical stuff needs to get out of the way first. The esteemed Dr Ayalew Tefferi from the Mayo Clinic located in Rochester, Minnesota answered my e-mail inquiry from a few days ago seeking his advice. Keep in mind that Joe is not his patient and he is sought out by MPD patients from all over the world for treatment and second opinions. Joe and I met Dr Tefferi in November 2009 at the MPD Patient Symposium held in NYC which we had attended. I found him straight forward, funny, smart and very approachable. It was such an honor to shake his hand, listen to him speak, and ask him questions. Who would have thought that nearly a year later that I would request advice directly to him? It was the suggestion of Annette Livingston, another MF patient who withdrew from INCYTE, to contact Dr. Tefferi.
Here is what Dr Tefferi advised us:
This is how I wean my patients from the incyte drug:
1. Be near your home and your doctor and not travelling while you are
being tapered off incyte.
2. You must do this under strict and close supervision by your doctor.
3. Go down by 5 mg drop every 5 days and once you are at 5 mg/day,
switch to 5 mg every other day for another week before you stop
completely.
Here is a link to bio on Dr Tefferi.
http://www.mayoclinic.org/bio/10441646.html
________________________________________________________________________________
Now I will wrote about the more lighthearted stuff that occurred this week.
Everyday I enjoy my indulgence of having a toasted sesame bagel with light cream cheese at Bagels n More on Five Forks Tickum which is own by a hardworking Mrs. Kim. Joe goes with me also as we read the USA Today together and comment on certain stories. I was able to convert Joe to liking bagels several years ago since he did not see why I loved them so much. Keep in mind not all bagels are the same. They need to be golden brown and slightly crispy on top and a solid soft white inside. Miss Kim's place does it just right to exactly how toasty I want my bagel. On Monday we ran into Neal Nicholson, a retired pediatrician, who also is a regular at the bagel shop. Neal and his wife Vivian just came back from a Friendship Force Outbound visit to the far away and not well known country of Uzbekistan. They loved their trip and especially the people they home stayed with. Neal told me that Vivian was going to an all women's night out at Imane Moroccan Restaurant in Duluth where their Moroccan sponsored student works part time as a cook, a darn good one, too! Neal suggested that I go with Vivian and I said sure. I thought that it would be a good Bonnie TLC event to get me to do something for myself.
After leaving the bagel shop I headed to Tucker for my physical therapy session on my painful right shoulder. The therapists has me do various exercises to strengthen my shoulder muscles for 30 minutes. The therapist stretches and rubs my shoulder in various positions. Ouch, sometimes! The last 10 minutes they ice my shoulder. Since I find all of this quite boring, I put my Oldies but Goodies on my iPhone using Pandora and connect it through bluetooth to my new hearing aids which is quite extraordinary. For the first time I can actually understand all the lyrics which is another special blessing that I have recently received. I purchased the new aids at Joe's suggestion at Costco.
My next wonderful event was meeting the adored Marina Peed for lunch at Luciano's on Sugarloaf Parkway in Duluth. Luciano's is a wonderful white tablecloth Italian restaurant with great and reasonably priced food in a terrific atmosphere. Pablo, the personable General Manager, knows how to create a great restaurant from the dirt on up which includes the wonderful Pampas Argentinian Steakhouse and Luciano's in Alpharetta. When I walked in the door, sweet Pablo greeted me with his big smile and a bear hug since we knew each other through business at Bank of America. There was vivacious Marina to my left waiting to give me a hug. We were so glad to see each other since we have a mutual admiration for each other. I met Marina through the Greater Atlanta MPD Support Group where I am the Atlanta MPD Coodinator. Marina has a tough case of Polycythemia Vera (PV) which is the first blood disease that Joe had. She also suffers from another unusual autoimmune disease but somehow she keeps smiling and living life to the fullest even though she had to resigned from a job she loved because of the excessive fatigue from the PV. What a great two hours of conversation we had! She shamelessly gave me a basket filled of caregiver goodies and truly the best fudge ever as reviewed by Joe. My day was made so bright and hopeful because of Marina. She made me feel like it was a surprise birthday party for me. Now tell me, how totally awesome is that!
At 6PM Vivian Nicholson picked me up along with her Moroccan student and Neal. I was a few minutes delayed since I was communicating with the medical staff at MDACC. I had to rush trying to find my phone and stretch and grab my purse. Big mistake! It triggered the worse pain in the shoulder than keep giving and giving after I stopped the motion. Grimacing I ran out to the waiting car. Vivian had to get Nealskateline hockey game where she was the only girl on the time. She is truly a girl after my heart with that spunk! The sky was dark with storm clouds when we dashed back to the car along with one of Vivian's daughter whose daughter was the hockey player just as the big fat raindrops started to flow from the storm clouds. We all made it without getting soaking wet. Vivian is a great driver and proved her skills driving in the pouring rain to the restaurant on Peachtree Industrial in Duluth. Robbie, the Moroccan student, rushed to the kitchen to cook and Vivian's other daughter met us. Both Vivian daughters have successful careers with jobs they love and that make a difference in his crazy world. One teaches autistic students and the other works at Egelston's Children Hospital as a occupational physical therapist. They are both attractive and outgoing just like their Mom. The restaurant interior was very colorful with the red Turkish rugs and ornate octagonal low tables and straight backed tiny low chairs. It was a challenge for all of us to figure out how to sit since there was no place to put your legs under the table so one sat sideways. Since Vivian has been to Morocco through the Friendship Force she guided us on what to order. She directed us well. There was a Moroccan female DJ playing those belly and rear end shaking music. Since there were no men around, the women were free just to be and they were. They sure can shake their booties and boobies. The four of us paleface Americans did our best imitation with laughter and enthusiasm,. The two career ladies left early and I was so tired also and really wanted to leave with them but Vivian told me that I was stuck with her. So we waited and waited what seemed forever for Robbie to get finished in the kitchen where she worked so hard for a lousy $7 an hour. Obscene. Vivian and I decided to join the Muslim ladies dancing and trying to imitate their moves. We got our exercise and plenty soak and wet from exerting ourselves but we enjoyed ourselves. I think we finally left about 11PM and we had to pick up Neal at one of the daughter's home as Vivian was suppose to do. The house was all dark when we drove up and Neal had left much earlier with his son in law taking him home. Next I was dropped off at my home and the lights were still on in the house. Joe was up waiting for me and said that the Braves game has just ended and that was why he was still up. Sure, Joe!
The next day on Tuesday I went to visit Beth Stephens who is my best friend's 50 year old pretty daughter who has a very serious progressive heart disease. Beth also has a severe hearing loss and reluctantly wears hearing aids like me but hers does not seem to help much. Beth had found my blog fascinating from the caregiver's point of view and wanted me to come over and visit her to talk about her patient point of view. She had cooked some delicious muffins which I ate along with her and we talked for three hours. It gave us both an outet for our emotions. In fact while I was there, I had gotten the courage to call INCYTE Corporation directly. Beth smiled and have me the added courage and support to do that. God has given me another blessing and we helped each other. I could not find my car keys when I was about to leave. I had forgotten how to get to Beth's house and drove all around the neighborhood and used my iPhone and Facebook to have her call me to HELP since I did not have her phone number. I eventually called Beth's Mom in Virginia who directed me to Beth's home while talking to me as I drove up. Beth met me at my car door and off we went into her home. Well, guess where my keys were? Yep, they were still in the ignition and the car was still running. Funny stuff! Beth said she would not tell anyone thinking that I would be embarrassed but I said heck no. This is funny stuff and makes life interesting and that I would write about it on my blog. Oh, one other special thing happened while I was with Beth. I put my hearing aids in Beth's ears using the Bluetooth and now she could hear all the words of her beloved, Barry Manilow. She is the most avid Manilow fan ever. Someday I hope that she gets to meet him in person since it is a dream of hers.
Last night, Wednesday, was Caregiver's On Line Support sponsored through the American Cancer Society. I think there was about 10 of us on line discussing the lows and how to cope with a loved ones terminal disease. Each person helped the other. On line Support groups are a valued resource whether you are the patient or caregiver. You get important information and emotional support. I belong to two for MPD and two for Cancer. It is so rewarding and I have made friends in Great Britain, Italy, Spain, South Africa, Canada, Chile, Australia and New Zealand as well as most of the United States. One bonds with other people who are going or have gone through the same thing. One finds other things in common. You cheer each other when there is good news. You are compassionate and thoughful when there is bad news, You share news in medicine. You share in the joy of new life. You cry and mourn when one of own dies. There are heroes everywhere. God has truly blessed me. God is here. God is listening to our prayers. God is directing and supporting you. God is love and good.
God bless all of you. Thank you for your prayers and support. It means the world to me and Joe.
Ciao,
Bonnie
No comments:
Post a Comment