Haven't been able to post for a few days for various reasons. But now while it's quiet I'll try again.
I was talking to another caregiver yesterday and she asked me how long we've been here. When I thought about it, we have packed a lot into the past week: admission to the hospital, chemotherapy, stem cell transplant, 2 units of blood, a little nausea then hallucinations, (from the nausea medicine) some down times, some good times, 4 visitors, walking in the halls everyday, (twice in the middle of the night), sharing experiences with our new Jacksonville friends, (who we met when we were staying at the Hope Lodge) with whom we are on about the same schedule of treatment. All that between Monday and Friday. Now we are moving into the effects from the chemotherapy with beginnings of nausea, things tasting and smelling strange, fatigue, a little loss of appetite, (finally, because he seems to have actually gained weight since he's been here; he has liked most of the food). Still has all his hair, so far.
We are extremely pleased and impressed with the staff here at Shands, Gainesville. Without exception, everyone has been attentive, thoughtful, professional but personable, very informed on the diseases they are treating. Even the food service people are friendly and attentive to the needs and desires of the people whom they are serving. We feel very secure in the care we are getting here, and that certainly takes away a lot of anxiety we would otherwise have during this experience.
I'm hearing that some of you are confused about where I'm staying while we are here. To clear that up, I am staying in the hospital room with Glenn. We were staying at the Hope Lodge a couple weeks ago while he was having his stem cell harvesting, but after that was done we went home for about a week before we came back for his admission, and I am allowed and encouraged to stay with him during this time of treatment. They recognize the value of having a loved one with the patient and how it aids in recovery. They also have different programs for caregivers such as a day of "pampering" with acupuncture, and some other stuff I can't remember right now, as well as group sessions with one of the social workers. When Glenn is discharged from the hospital in a couple weeks, we hope to be able to stay at the Hope Lodge again while he has daily follow-up care. I think I've shared with you all that the Hope Lodge is a place to stay for free for cancer patients who are having frequent treatments. It is sponsored by the American Cancer Society and is funded by donations. We qualify to stay there because Glenn's disease is in the multiple myeloma family and is treated the same.