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Sep 15, 2018
After 4 months of trying to keep up with emails, I have decided to start this CaringBridge site.
Doug was diagnosed with Multiple Myeloma in May. It started with a lump on his right shoulder that we had checked out. At the neck edge of the lump was an enlarged lymph node. The doctor ordered a CT scan and a second mass was noted on his right lung. Fearing lung cancer, we scheduled a biopsy of the lymph node for April 23. We were thrilled that there was no evidence of lung cancer but confused about the presence of plasma cells.
Confusing the diagnosis a bit was the presence of 2 nodules on his thyroid. Dr. Bogner did 10 biopsies of each nodule and they all came back benign. For which we were grateful.
Plasma cells are found in multiple myeloma. We had our first visit with the oncologist, Dr. Bassam Mattar, on April 30. He ordered a raft of tests including a CT guided biopsy of the mass in his lung. That was done May 6 and showed the same plasma cells as were in the lymph node, confirming the diagnosis of multiple myeloma.
All of his tests were completed by May 10. His first dose of chemo was May18. He had a port-a-cath inserted May 20 and his chemo continued every Tuesday and Friday. He tolerated all of the treatments well. Had no hair loss, no loss of appetite and only marginal fatigue.
He felt well enough to go to Pennsylvania in July for family reunions. We had a great time. He spent several days in the motel, but was able to enjoy family.
His last chemo was July 30. I didn't start this site sooner because things have been going so well...there really wasn't much to say. All that has changed.
The first week in August, he started getting short of breath going up and down the stairs to the basement. Sometimes he needed to stop on the landing to catch his breath. Then he started running a fever. Nothing too high but we were supposed to report any fever over 100.5 and it got to that point on Sunday, August 8. The on call oncologist wanted us to go to the emergency room in Newton.
By the time we got to the ER, the Tylenol had brought his fever down and he was perspiring profusely! And he was short of breath. I think the ER staff thought he was having a heart attack. He didn't even have a chance to sit down before there was a nurse taking him back to a room. Then they did a stat EKG. But it wasn't his heart. He has never had any chest pain at all. They also did a lot of lab work and a chest x-ray. Nothing was found but he was put on an antibiotic for an upper respiratory infection and sent home.
Tuesday the 10th we went to Wichita to meet with the stem cell transplant coordinator and Dr. Mattar. The stem cell process is in several steps. We were schedule to start the process August 26 and be completely finished by the end of September.
And then it all changed.
All last week he felt bad. Achy legs, low grade fever and shortness of breath. The Tylenol always brought the fever down but it went right back up. Thursday he drove himself to Wichita to have a pulmonary function study, EKG, and more lab work in preparation for the transplant. Friday, the 13th, he had another fever and had blood cultures drawn from his port-a-cath to make sure there wasn't an infection there. Saturday he couldn't catch his breath at all and his fever went to 101.8 and we were told to go to the ER. This time we went to St. Francis ER. He was in the ER 4 hours, was admitted about 1AM and is still there.
After a multitude of tests, it was determined that the shortness of breath and the fever were caused by the Velcade he took in his initial chemo. Velcade is a relatively new chemo drug used in the treatment of multiple myeloma. Evidently the swelling and inflammation is in the little air sacs in the lungs. He was put on 2 IV antibiotics, tested for every possible infection and nothing positive showed up. He had a bronchoscopy on Monday the 16. The biopsy from that only showed inflammation. He was started on IV steroids and felt better fairly soon after that. He was started on oxygen Sunday evening and that helped the breathing, also.
The IV steroids were stopped on Wednesday and he was started on oral prednisone yesterday. He was weaning himself off of the oxygen and was hoping to go home today.
I guess he won't come home today after all. He temp went back up and they did more tests. They want to keep him a few more days. This will push his stem cell transplant back a few weeks until he is off of the steroids.
He is getting discouraged...and needs constant reassurance that the light at the end of the tunnel is not an oncoming train.