Back in late August, 2014, I starting having trouble with my lower back. I orginally thought that I had just moved wrong and tweeked it as I had ruptured L5,S1 15 years ago. So I made an appointment with my chiropractor for an ajustment. Unfortunately, after 3 sessions, the pain had moved into the top of my right thigh and it felt like it was on fire. So at the beginning of September, I made an appointment with my primary care doctor so I could have an MRI. Well, the first MRI turned into a second MRI with contrast as they saw something unusual. After the second one, they determined that there was a mass in my right psoas muscle. Gee, no wonder I was not walking correctly, and could not lay flat in bed or sleep on my right side. This was this biggest bummer of all.
The next step was a biopsy of this mass in the psoas muscle. This occured in mid-September. Now the waiting began. At this point, I was missing work and in constant pain which I rated at a 10 every day.
It is now early October and I am still waiting on a complete diagnosis. Move ahead a couple of weeks to mid-October and I have also had a bone marrow biopsy. I also had been assigned an Oncologist, Dr. Preston Gladney (she is awesome!) and a transplant Doctor (Dr. Sohl) and appointments with both. My first appointment was with Dr. Sohl of the Bone & Marrow Transplant Group on October 20th. It is at this time that I got the official diagnosis. The only reason why it took so long for this to occur, was because you guessed it!!! I am special. My type of Lymphoma is rare and they wanted to make sure that they had the correct diagnosis. Dr. Sohl explained that my odds for a longer life and less chance of reoccurence was to have a stem cell transplant after my first remission. This was a no-brainer!!!. I met with Dr. Gladney on October 22nd and my chemo regimen was set.
6 rounds of chemo
PET scan after the 3rd round (major success!!!)
After the 6th round, verification of remission.
Being a very strong individual and having faith and the belief of prayer; I would only have the 6 rounds of chemo, be in remission and proceed with the transplant. So, chemo started on October 30th and every other week with the last round on January 7th. I was pain free after this first round!!!!!!
In the meantime, all of my co-workers took up funds and also had a bake sale on my behalf during October and November. They raised over two thousand dollars. WOW!!!! I really felt blessed. This money came in handy as I had to go on short term disability in mid-October and was only receiving $325/week gross on STD. The net payment doesn't even cover my mortage payment. Not only was I blessed to have great co-workers, but very wonderful parents. They have been helping me out with keeping a roof over my head.
Happy New Year 2015!!!! Now the work begins. As I stated above, my last round of chemo is January 7th. I will begin the transplant process on January 19th!!!!! Yes, I am doing it!!!!! My transplant will be using my own stem cells as the Lymphoma is not in my bone marrow. This whole process will take between 6 an 8 weeks and I will have to be away from home for a good majority of this time.
Hype up my production of stem cells in my blood
Harvest the stem cells
Kill all the bone marrow with high doses of chemo
I will have to be in isolation (away from home & in an extended stay hotel near the hospital) beginning at the time of harvesting. I will also need to have a caregiver with me 24/7 as there are potential side effects and illness due to no imune system during this whole process. Along with this, I will have co-pays for visits and procedures, prescription costs as well as basic living expenses for not only at the hotel, but my home as well.
I am very fortunate to have wonderful friends and family & have my caregivers lined up. Because I really have to stay stress free, I am trying not to wory about the costs of this procedure and what Insurance will & will not cover. Even though my parents are willing and able to assist with some of these costs, they are retired and on a fixed income. Plus I am a very strong, independent person and need to do this on my own.
I have frequently laughed at myself during this whole process because I know that a positive and upbeat attitude are everything when fighting & kicking Lymphoma's butt. I will be retuning to work in early April and cannot wait as I LOVE my job!!!!
- Cindy Koenigsberg
- Tom Brummett
- Peter Tidd
- Lew & Phillis Hoy
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