I have learned so much about my disease -Myelofibrosis , and I learned about Jakafi here before my Specialist talked to me about it. I’ve researched a lot but I get to the point that I cannot retain any more information. I’m 68 and I had never had to take meds or had ever been sick until I was diagnosed in Oct 2020. I still feel like it’s someone else instead of me. I know I have to take advice from my Dr. and I trust whatever he says is best for me. I’ve never been good at remembering medical conditions because it was foreign to me. I am slow at realizing terms so when I received my Jakafi prescription yesterday, the plastic pkg says (Chemotherapy drug), I was kind of surprised that this knowledge had not soaked in yet. I try to be positive about everything and I don’t have many symptoms except for enlarged spleen and what my labs show-that I’m anemic, my hemoglobin is at 9.2. I didn’t even have a Primary Dr. until I found my new Dr. in Oct 2020-I was having some scattered weak spells and dizziness so she ordered labs. Then referred me to a Hematologist, that led to getting a bone marrow biopsy which led to referring me to a specialist at MD Anderson, Dr Verstovsek in early Dec. 2020. So for two months I was totally in the dark about what was going on . I was losing weight because of the enlarged spleen, it causes you to feel full after a few bites. Now that I’m on Jakafi I have gained back the weight. I feel no discomfort whatsoever and my spleen has shrunk. I don’t have the weak spells or dizziness at all - I take Danazol for the anemia. Dr. V told me I was at the intermediate stage of Myelofibrosis , but according to my BMB, it’s more complicated. I forget I even have anything wrong and I have to set an alarm on my phone to remember to take pills. When I registered to get the Covid-19 vaccine, I had to answer questions to see if I was eligible to get the vaccine as a priority, I forgot to fill in the question about my underlying condition -Cancer- DUH! Damn, I really have Cancer!
I Update this page about my myelofibrosis journey because if I don't, I won't remember what I've done. It's for Me.
February 25, 2021
Labs at 2:00 Dr. V at 3:30
Jacob made the trip with us so he could help in case David could not navigate to come back and pick me up.
My labs showed my Hemaglobin down to 8.8
my Liver levels were up way high from 31 to 101, so the Dr. told me to stop taking Danazol.
Next prescription of Jakafi will be 20mg X 2, should be about the 20th of March, 2021.
Feb 28. Starting to feel the effects of not taking Danazol. Stomach feeling weird movement like it used to.
Dr. V. told me to make an appointment with Dr. Tripathy in 5 weeks. Next appointment with Dr. V is May 11.
After my last appointment with Dr.Verstovsek
On February 25, I was referred to the Stem Cell Transplant team, and I will see Dr.Popat, One of the Top Doctors for Stem Cell Transplants.
I’ve started the process of getting a transplant. I saw my local Hematologist, Dr. Tripathy on April 8. My labs show my liver to be back to normal after getting off Danazol.
I had orders from MDAnderson to get a Pulmonary Function test and an Echocardiogram and some other labs before my insurance could approve my transplant procedure. I am getting all other necessary procedures and checkups done - Mammogram✅, Bone Density✅, Dental 4-27 scheduled, Colonoscopy scheduled 4-30.
My Bone density test shows I have Osteoporosis and my Gyno referred me to my primary Dr. Dacumos for further treatment.
Summary of the next steps:
June 23, started outpatient pre admission testing. Had to stay in Houston for 2 weeks. I got some non chemo infusions to prepare me for the next steps. I got a Central Venous Line with three lumens where I got my iv liquids and also where they draw blood every day.
On July 6, we were in the Stem Cell Transplant waiting room. We met a young man 24 years old, a survivor of Leukemia. His name is Colt Buchanan. Colt's story is a whole other chapter of my journey, as he has helped me and kept my spirits up. He is a walking testimony to how MD Anderson, God, and a Stem Cell Transplant with his own brother as a donor can be the cure.
July 12, I was admitted to MD Anderson Hospital and David was my caregiver so he stayed with me.
I got the harsh Chemotherapy that kills off the bad cells, and it brings my white blood count and my hemaglobin and my platelets down to ZERO.
I was on IV fluids and meds to protect me from infections, and other side effects. Any problem that came up, My Nurses and team were fast to remedy with whatever I needed. I had the best care I could possibly have.
July 20, I got my donor cells (transplant). My donor is a 26 yr old female from Germany!
Stem cells thru the iv are just like getting blood or platelets, No Pain whatsoever.
August 2nd. My Central Venous Access Catheter caused me to get a blood infection and I had fever. They had to remove the CVAC, and insert a PICC line in my left arm. They gave me high powered antibiotics to clear that up. My eyes were red from blood. It took a couple of weeks for that to clear up. I looked like an alien. It was not pleasant, but I just kept doing what they said to do because I knew I had to to get through this.
One horrible side effect I had was getting Mucositis, which nearly everyone gets because my WBC and Platelets are zero, I had a weak immune system. The Mucositis caused me to have my throat swollen and tight, I could'nt swallow without sore throat pain. On the day of the transplant, I choked on a pill. It was a scary few minutes, but the pill finally moved down so I could breathe. It wiped me out, for three weeks. I could not swallow anything without sore throat pain. I didn't eat solid food for 11 days. All meds had to be given through the IV. About 15-17 days after my transplant, my lab numbers started to get better. The Mucocitis doesn't clear up until platelets are higher and WBC is higher.
I started being able to eat solid food and swallow pills around August 9th.
August 8, David got to get a break from the Hospital, and got transported home. He had been with me 27 days. He could only leave the room to go do laundry or go to the cafeteria. He was about to get stir crazy. My son, Jacob was home taking care of the house and the dogs and the plants. He did a great job cooking meals for David and looking after him. That was a huge concern, and David was very impressed with Jacob, and it made me happy and proud.
My daughter Jen was able to drive down from Colorado and relieve David for a while so he could take care of things at home and get outside.
I was released August 18, Jen arrived to the Hospital to pick me up about noon just in time for us to go sign a lease for the patient housing that I had been on a waiting list for. Hospitality Apartments have been a blessing for us. We are supposed to stay close after being discharged for up to 100 days. That could mean we will be in Houston until the end of October or middle of November. I feel it will be sooner.
Jen was here for 16 days, and it was great to have Mom and Daughter time just the two of us. She took really good care of me, in between working online several hours a day.
She cooked some good home cooked meals that really hit the spot. We drove all around the City looking for good food and discovering places she could go for a run near Rice University. The humidity was really hard on her. We took photos in front of beautiful Murals, I was still pretty weak from being cooped up for 33 days in the hospital, but it helped me start to get stronger. She took me home on Sept. 2, and spent the night and was here for my birthday, Sept. 3. Being with Jen was really good medicine for me. It was great but it was time for her to get back home. She drove home that weekend.
David was now my caregiver again, but in a much better environment, a home away from home.
As of today, September 19, I am now at day+62 post transplant.
I've just gotten over some side effects, one was a rash that we were worried it was Graft Versus Host Disease. It has been treated with steroids and I have No more rash. September 7, I somehow pulled a muscle in my lower back just by bending over getting something out of the fridge. It was excruciating pain with spasms like I was being stabbed in the back. It could be from Chemo, could be from Osteoperosis, or one of the many medications I am currently taking. My team came up with a solution of a strong muscle relaxer that is working. I ordered a heating/massage back support wrap from Amazon and it has been a life saver. I feel almost Normal again.
I have a strong appetite, but as of today I am down to 114 lbs. I need to gain and get stronger. Yoga is on my list of priorities.
I wanna go home. I miss my dogs, my home, my art, my life as it was. It just takes time.
I have battled the back pain and spasms since September 7. It got better, then it came back and got worse by the day. Oct. 7, I saw Dr. Popat and he sent me to ER to be admitted so I could get CT scan, and an MRI to see if I had fractures. CT scan report says No problems to be concerned about. MRI showed that I have compression fractures. I stayed in the Hospital from Oct. 7, through Oct. 10.
The pain and spasms are still causing distress. A Doctor from Pain Management came to my room on Saturday and talked to me about taking a Morphine pill, so I could take it when I was home or at the apartment. Also, I got muscle relaxers. A Nurse from Physical Med and Rehab visited me in my room Saturday to show me how to properly get up from a sitting position, and how to roll out of bed. they brought me a back brace to help keep my spine straight. I started taking Senakot for constipation which is a side effect of morphine.
October 18th, Dr. Popat referred me to a Pain Doc. on October 25th-Dr. Larry Driver.
Dr. Driver said there is a treatment he recommended called Kyphoplasty that we can do, but not until my platelets were higher. At that time, my platelets were only at 23. Fast forward to November 1, platelets were 53. Nov. 8th, Day + 111 post transplant. Platelets were up to 101! My labs looked great all around. Sanjai,PA, told me I could go home for good and drive from home for our next appointments. We checked Out from the Hospitality Apartments that day, on the 8th. I will start to see my local Hematologist every week for labs. I will have less frequent appointments at MDAnderson just follow ups. I'll get the kyphoplasty treatment soon and then I will be relieved of pain and my fractures will begin to heal properly. Later I will start to get Physical rehab and get my body in shape and get stronger.
It's so Good to be back home. I feel less stressed out and I will heal better right here where I can start to return to normal somewhat!
July 20, 2022. Today is my 1 year anniversary of my rebirth!
September 2022.
Long time since I’ve updated. Time goes by so quick. I had my 70th birthday on 09/03/2022.
Jen flew down to celebrate my big day. We had a great time. She went all out on all my birthday decorations and flowers and a cake.
Jen and Parker came back to Tx. on the weekend of Oct.7. We got to visit on Friday, then on Sunday as they headed to Austin airport to go home. We had a great time together.
Regarding my health issues, my Osteoperosis is severe and I’m at a high risk of fracturing more bones. My kidneys are taking a beating because of the prednisone. My lab numbers are still not where they should be yet-also because of the prednisone. I’ve been getting Prolia injections for my Osteoperosis, I’ve had only 2. The first one was Jan 2022, and the second one was July 2022. I have a new Osteoporosis specialist here in College Station. Dr. Pocurull. He suggested multi vitamins, calcium supplements, and Vitamin D3. Also he suggested Tai Chi and recovery yoga.
October 2022.
I am at 95 lbs.
I see Dr.Popat and team about every 4 or 5 weeks.
I will have a follow up with Dr. Tripathy on December 15.
March 2023. This year is flying by very quickly. I am stable, nothing to report.
I'm thankful I am still alive. My lab numbers have not been good enough for me to get my immunization shots. It's rough because I still have to be careful and not be in close quarters with kids or anyone who have not been vaccinated. In 4 months, it will be my second new birthday. My hair has grown quite a bit but has a weird texture. I've gotten used to wearing head coverings and it does make things easier not having to fix my hair.
My weight is not budging. I eat and eat and eat, but I'm still at 98 lbs.
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