Wow, you and your wife have been through so much!! I hope all goes well for the two of you now. It is amazing how time just blows past us during all of this isn't it?
So my name is Maureen and on January 5, 2009, my husband, Ray, had a seizure and was taken to the emergency room where after multiple tests and a week-long hospital stay he was diagnosed with lymphoma. After 17 days in that hospital, and some really frustrating moments, we were luck enough to get him transferred to a great teaching hospital in our area. Multiple tests and biopsies revealed he had diffuse large B cell NHL, follicular NHL and Hodgkin lymphoma with a tumor growing through in his hip. So while he does not have a rare lymphoma, he certainly is a rare case to actually have three types of lymphoma and his docs are intrigued by him. This has probably been going on for a while, but his symptoms were all explained away due to multiple pre-existing orthopedic degenerative conditions as he was hit by a U-Haul truck back in 2002 causing degenerative hip, shoulder and back pain. He has had multiple surgeries and is on chronic pain management. So when he had increased pain, it was excused, and reasonably so, as part of his degenerative and arthritic conditions. When he had night sweats, well, that is also a side effect of many of his pain relievers and muscle relaxers. So, he's had a really long road up until now. He had dropped from 230 pounds at the time of his accident to 210 and then in December he had lost so much weight he dropped to 180 pounds upon admission to the hospital.
Anyway, his doctor is of the opinion that he should complete his chemo and then pursue a transplant down the road. He hs completed 4 rounds of CHOP-R so far with two more scheduled. His PET scan showed 100% remission which had his doctors shocked and awed as they were hoping for 75% at best. He even managed to gain 19 pounds in three weeks (it was his Snicker's and milkshake diet I do believe) and has had no nausea or other side effects. He did lose most of his hair so he went ahead and had his head shaved.
He is still having major cognitive problems and at times (well more often than not) it is like having an additional child in the house. We hid the keys, locked the stove and put a latch on the basement door as he likes to wander at night sometimes and I'm afraid he will attempt to go downstairs. I know he can unlatch the door when he is cognizant, but not to mcuh when he is in one of his phases. I'd put a lock on the door, but my daughters' bedrooms are down there as is the family room and I cant very well lock them in the basement (although tempting some times). There are some days he wakes up in the middle of the night singing or doing some other crazy wacked out thing so I'm a bit exhausted. We are trying to find out if this is a result of the chemo, his antiseizure meds or something else so we are in the process of weaning him off his antiseizure meds now and then hopefully he will have that out of his system by the time he finishes his chemo and then we can see how that goes for a few months. His EEG and brain mri were normal in January.
The really big issue during the chemo is the Nulasta injection. Right about day 7, he begins to experience extreme bone, joint and muscle pain. The first time we ended up in the ER for IV Dilaudid and Valium. We also obtained new views of his hip since it is already compromised with the a slight fracture due to the tumor, but the films were negative. This whole chemo/cancer thing seemed to knock down his normally high pain tolerance threshold and we just need to keep him in a comfortably numb state for about 3-4 days when this is happening. I have a neice who is a pharmacist and she is helping to make sure we do not over-do it during these times with the blessing of his physician.
So anyway, I'm lucky enough that I am able to work from home and take care of him. It's exhausting and I really truly miss my husband greatly. I want for him to tell me it is going to be okay or just give me a hug out of the clear blue. I want to be able to go for dinner and not worry that he is going to revert back to a child as he has been known to do recently. I want to be close to him again as his wife and not as a caregiver once in a while. I know our lives have changed dramatically, but we are young (40s) and we spent so much time raising our family and planning our future that we forgot to enjoy each other before. Now I wonder if we will have that chance or did we miss our opportunity with being too tired, too busy or just plain too distracted.
Okay, enough pity party from me. I am really looking forward to getting to know you guys. I stayed quiet for a long time and figured, new board, new start.
