Leg cramps

Dale is always tired. He has frequent leg cramps, difficulty breathing, and trouble with the constant pain in his bones. Today he has a fever, has chilled, and slept most of the day. Yesterday he had another round of the immunization shots which we believe, may be the cause of the fever.  What do we know?

He is so fragile! I don't understand the pain in his bones. Is it due to lack of oxygen? Is it because his transplant doing weird things? Dale's health is such a mess. His emotions are tuned to certain things that I call his bucket list. His feelings of urgency to accomplish these things increases with each day of pain. In other words, he feels his days are numbered. Of course, I have no idea of that number, but appreciate the decisions we are making before WE can't make them any more.

Small steps forward

I receive an occasional email from blog followers out there in cyber-land. Unfortunately, mantle cell lymphoma is active in these people's lives. I am sorry, yet it also brings a certain level of hope. We are not alone in this journey of cancer. The past almost two years is full of lessons learned, people appreciated, and a roller coaster of emotions.

I am typically asked what medications he was on, treatment protocol, and bone marrow type. I apologize for not reporting medical names of Dale's treatment. It does not really matter to me what the medical terms are, just that it has worked so far. No doctor asked us to consult with them in medical jargon, or gave Dale an opportunity to suggest another chemotherapy schedule. He received treatment, I report, repeat. I feel as the caretaker, my focus is on the care of patient, only. His bone marrow transplant, by the way, came from his own stem cells, harvested at an optimal time is his treatment, frozen, and then given back to him for the transplant.

Health report since last couple of posts is reasonably fine. University lab work showed nothing scary. No treatments other than extended seven days of antibiotics. That ended two days ago and he seems okay. That does not mean he is well, just no fevers. I am a bit anxious about a lingering infection that may manifest itself again. He goes to work each day, comes home and crashes, exhausted. He feels light-headed, fatigued, and reports muscle aches and cramping. His chest hurts and he reports that he feels he is suffocating.

Although he is stubborn enough to carry on with his agenda, he does not feel like doing much. We went to a movie this afternoon and enjoyed it. He wants me to feel as though some things are a little normal. Seeing through my Polly Anna eyes, we are okay. Small steps are taken for the next stages in our lives, however, they are steps forward.

Infections and bone marrow transplant patients don't go well together

Dale went to his quarterly checkup at Huntsman today. Good news is that the blood work is okay and remission continues. Bad news is the infection he has is a great concern. They took more blood cultures for University labs to analyze. It takes the cultures 2-5 days before definitive results begin to show up. In the meantime, Dale will continue with the anti-biotics since the infection is a vicious one and will take over Dale's fragile system and he will not survive. Doctor was quite concerned and is consulting with infectious disease specialists for his treatment. The infection has scattered throughout his body, explaining his overall aches and pains, but at this point, does not have an origin. The medication is assisting Dale's system to fight it, because without the daily dose of the anti-biotic, Dale's body will not be able to survive. His immunity system is compromised and vulnerable to infections like whatever it is he has.

Fortunately, it is in control for now. I trust their treatment plan will come quickly and Dale will be fine.

Sometimes we forget how frail he is and want to forget the many hours of treatment.