Dec 16, 2018 Latest post:
Mar 14, 2019
I am starting to use the CaringBridge as an alternative to other social dremedia platforms. I want keep family and friends updated as I continue my journey to a cure for the Ewing's Sarcoma I am fighting **** Please do not re-post my condition to other social media platforms **** The History I first started to have chronic pain in October of 2015, after completing the Detroit Half Marathon - I had been training for the marathon and really enjoyed running the international half marathon. Felt good. After the run I decided to rest my legs for a bit - felt like I had potentially gotten what I thought was shin splints in my left shin. Pain would subside, I would try to run again - right back the pain returned. More than once Chestra had to come pick me up with the car. In April 2016 I went in for my annual medical check-up - Looked more like Plantar Fasciitis to the doctor, which I also have a history of contracting. So, set off on a course of treatment. Still an issue by August. I then saw the Staff Podiatrist. Got fitted for inserts and a night brace to stretch my tendons at night. September 2016 still not able to run pain free. More x-rays - Normal Osseous Structures - nothing unusual observable. Took the winter off - got anxious in the spring of 2017 to run again. Started running but the pain was even worse! May 2017 I had an Orthopedic Sports Medicine visit – X-Ray showed abnormal structure. Follow-up by MRI showed tumor on the left fibula. June 2017 a biopsy was performed on the tumor - It took awhile to get results. It was so unusual the orthopedic had the pathology run a second time. Both Biopsy's indicated a EWSR1 gene rearrangement, commonly referred to as Ewing's Sarcoma – I was referred to a medical Oncologist for a treatment plan. By the end of June I was ready for a vacation. My son, Tom, planned a great trip out west for us: Badlands, Custer, Tetons, Yellowstone, Glacier, and the Calgary Stampede - What a Trip!!! All while I was on crutches. Dad got me some really nice crutches! Once I returned we met with the medical Oncologist and agreed to chemo, followed by surgical removal of my left fibula in October 2017, followed by more chemo that finished by 1 September 2018. It took 17 Cycles of IE in patient for 5 days alternating with VACA outpatient infusion based chemotherapy, over 18 months. It was nasty. Spent 6 months on crutches. I collected about 38 Beaumont Hospital patient identification bands over first primary treatment plan. By the end of September 2018 my PET scan was clean. Hallelujah!!! Boy were we relieved and happy not to be in the hospital ever 3 weeks for chemo. Just about the time you start feeling better, it was time for another round of chemotherapy. I did get several breaks during the first treatment cycle. We got to New Orleans for Easter with Kent and spend a long weekend in June at the Rip-Roar'n Rehder Reunion at Lake Okoboji, Iowa with everyone! We left Iowa and drove east across Canada to the Northeast - Quebec and Maine. Very enjoyable - really liked Acadia National Park, which is where Frank and Jane's honeymooned. The internet at the hospital and infusion center was so good, I never missed a beat at work. I just was out of the office 1 week out of 3 which is not that unusual these days in the new office environments GM has gone to with open seating. I even was able to travel domestically (driving only due to my low immunity). I carried a standing order for my weekly comprehensive blood panels which I faxed back to my primary oncologist for his OK. It worked well for GM and Myself. By the time my mom's hours got short, I was in full remission - Boy was she happy - We all were! I was able the spend the last few days of her life by her side and held my mom's hand as she entered into eternal rest on 12 October. Her funeral with military honors was 25 October. We miss her dearly. Just like we do Chestra's mom, Cyndee. Cyndee passed away, just prior to my definitive diagnosis. Unfortunately my cancer made it even harder to comfort Chestra through this ordeal. So hard for us both and the entire family. Instead of Thanksgiving in Iowa, as is our typical tradition, Chestra hosted Thanksgiving in Detroit for the extended family. Baked some good food, 9 pies, cookies and a big ole turkey with all the trimmings. Went to "America's Parade" downtown, Piston's Game and played games, saw movies, went to Beck's basketball tournament, etc. It was great. By the end of that week I was spent! And, my lower back was sore from a lot of standing and maybe lifting Christmas trees too, while volunteering at the National Shrine of the Little Flower Parish Schools Dads' Club Christmas tree sale - We sell about 1,500 in a matter of 4 weeks. It is a lot of work. We had our Beer and Cookie exchange on Saturday, 1 December, celebrated my remission in a big way (filled a really big cooler left over from the Rehder reunion)! By Wednesday the 5th of December the pain was too much (thought it was kidney stones from all the good eating, and not enough beer to wash them away). I was taking 600 to 800 mg of ibuprofen every few hours to keep the pain down. Too much for Chestra - off to the doctor and followed by the emergency room for CT and MRI. My kidneys were fine. My vertebrae however were not such good shape. The MRI had the look of multiple lesions and tumors. On 6 December 2018 I had a full body bone scan: - The T12/L1 was found to have a secondary to metastasis - L5 also has be secondary metastasis - L2-L5 has Metastasis. - The right and left ribs are also showing secondary early ensuing metastasis.
Clinical correlation with a biopsy was performed Monday, 10 December. By Friday, 14 December the results were undeniable. The Ewing's Sarcoma is back, confirmed by pathology.
So the Caring Bridge Journal begins now as we seek a path slow the cancer, relieve the pain, and to a rid my body of Ewing's Sarcoma. We have decided on a second line therapy. The first step is palliative radiation therapy. I started the first of five treatments on Thursday, 13 December. Radiation treatments at T12 will finish on Wednesday the 19th of December. Other sites may follow. I can not have chemotherapy in parallel due to potential interactions. I plan to start palliative chemotherapy using two different drugs used for first line Ewing's Sarcoma. One chemo is a daily oral medication, temozolomide, which is alternated by Irinotecan, which is an out-patient IV infusion. The first line treatments (VACA/IE) can not be repeated. I reached a lifetime maximum dosage for those chemotherapy drugs and they had some nasty side-effects! I should not be as afflicted with side-effects using the second line drugs. We will follow this treatment plan until we find something in early stages of FDA approval that has shown some promise in Ewing's cases. Perhaps an early use of Immunotherapy, also called biologic therapy to kill the cancer at a cellular level. It boosts the body's natural defenses to fight cancer. It uses compounds made by the body or in a laboratory to improve or restore immune system function. Our oncologist sent a tissue sample out for Molecular Mapping then a check of the map to a comprehensive database that the City of Hope maintains. The City of Hope is a private, not-for-profit clinical research center, hospital and graduate medical school located in Duarte, California. Chestra already had been thinking about taking a trip to California in February (President's Day weekend). It is only about 45 minutes from where Chestra and some college friends were planning to be. So maybe we plan a visit to the City of Hope along with the plan to see friends and family that weekend. I am up for it!