Blacking out and stumbling

In a couple of weeks, Dale will have his six month check-up with all the tests, lungs, blood works, PET Scan, perhaps bone biopsy, heart, and anything else they think he may need. He seems weaker daily and reports he that feels like he is smothering and has painful legs and feet. My main concern comes from another incident.

As we walked home from church yesterday, (about a block away) Dale stumbled and blacked out or blacked out and stumbled. I do not know which came first. He rolled down onto the grass, however, he was out for a few seconds. Although the color did not leave his face and he recouped quickly, it is never a good thing when one passes out. I was able to help him get up off the ground and home, but he felt light headed the rest of the day and slept several hours after the incident. He remained home Monday, making it without incident but he slept many hours of the day.

Dale's weakened state concerns me and panics him. If more happens before next doctor's tests, I will write again, but I anticipate more of the same, just a bit worse, and suspicious test results.

We can do this

Another wife of a mantle cell lymphoma patient contacted me through the blog this past weekend.  There are many people searching for hope, understanding, and support from others in similar circumstances. Each has a different journey through the cancer, but all hold on to hope. The research has come a long ways, with each patient contributing to the next patient's treatment regime. Research is possible and necessary.

Dale continues to do more than he can/should every day. His sense of urgency increases daily. We are making progress on his Bucket List, to which I am grateful, as is he. We enjoy time together and have made forward decisions that are working well for our unknown future. Simplify, de-clutter, prepare, and enjoy what we have.

Health continues to be so-so. Shortness of breath, fatigue, diarrhea two-three times a week, and pain in feet and legs.  His six month check up will be in a few weeks with all the cancer tests. He is a bit anxious about the results and frequently reports he "feels like I did before I knew I had cancer." I will report when I have results. In the mean time, people looking for mantle cell answers and hope, know you are not alone. We can do this.

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.

Streptococcus Pneumonia

It isn't good when the ER calls you to come back. Two days after Dale's initial visit to the ER and enough time for the lab results in the blood cultures indicated that he has Streptococcus Pneumonia. They gave him an IV anti-biotic and sent us home with a prescription for more anti-biotics. This makes sense. He battled fevers for the last three days, felt totally lousy, and now we know, more so, why. This  is emotionally very difficult for him. I believe I understand and will continue to keep the peace around here.

Fever & chills

Dale came home early from work on Monday due to his vomiting, diarrhea, and fatigue.  He took Frontrunner and then TRAX where I could meet him to take him home. He attempted to work Tuesday but was very weak and tired and could not get his "engine running". Vomiting and diarrhea continued with beleaguered breathing and nasal problems. Dale attempted to do some work from home both on Tuesday and Wednesday. He is quite discouraged as he feels he has let his work team down. 

Wednesday, Dale's condition worsened as the day continued with a fever (102) and light-headedness. Time to visit the ER. After many tests and blood works (and hours!), the ER reported that he probably has a virus and needs to be very careful due to his fragile state of health. He is released from ER however is not to go to work and needs rest through the weekend protecting him from exasperated complications. 

During the night, Dale woke up with extreme chills, although he had a heated blanket and plenty of bedding to keep warm. This concerns me as I am much too familiar with such symptoms and where they took us just about 2 years ago at cancer diagnosis. After reading the ER release notes, it explained chilling and fevers; fever is trying to increase when chills set in. Fever is trying to cool down when sweats are prevalent. I think the body is just confused, hurting, and sick. Regardless, a fever is a symptom of something going (gone) wrong. 

It takes Dale a long time to recover from any illness he picks up. My editorial on this week's health conditions: When Dale picks up some virus (flu, allergies, cold, etc.) that the rest of us get over in 1 or 2 days, Dale's compromised system exasperates the symptoms and he becomes quite ill. His body is doing the best it can to heal, however, it is still pretty fragile.

Cancer quarterly checkup next week.