I wrote yesterday and told you about my husband and his lymphoma in the spinal cord. Here is the update that I sent out to family & friends:
Hello Family & Friends, It has been 12 days since my last update. Lots has happened since then so let me fill you in on what has been happening. John is going to therapy 5 days per week. He certainly has the right attitude but sometimes his body doesn't want to cooperate. There is lots of weakness going on and we believe that it has something to do with Chemotherapy. While chemo is busy killing cancer cells it does wreak havoc on the other parts of your body. So little progress has been made at therapy but it certainly isn't from a lack of trying. John really wants to at least get to the point that he was at after leaving rehab back in October, which was basically in a wheelchair but could transfer to bed, toilet, chair, etc. using a walker. As this point in time, he is in a bed most of the day (wheelchair 3-5 hours per day) and is using a transfer board to do his transfers. He is able to stand in place anywhere between 30 seconds to 1.5 minutes depending if it is a good day or a bad day. Marcella continues to be a nice place. The amenities are very nice. The nursing staff are very pleasant and just like with any other place they are short staffed and over worked. We have found this to be true in each hospital and/or rehab since all of this started. But considering it is pretty good there. John attends occupational and physical therapy 5 days per week for at least 2.5 hours total. Today, John had his 3rd chemo treatment. When we arrived and they did the usual blood work and then we met with Nancy, Dr. Henry's CRNA. She gave us great news. The lymphoma in the back is diminished..gone. The lymph nodes under the arms and the groin have regressed to less than half their size compared to the previous Pet/Cat Scans which were taken prior to starting the radiation and chemo. This is fantastic news. John is also starting to get "some" feelings in his left leg..things like muscle spasms, sensations, etc. This is all part of the healing process..and we pray that the spine will heal completely and all of that will go away. We really don't know how much damage has occurred nor how much will return to good health..only time will tell. John tolerated the chemo very well and was able to get the abbreviated version since this was the 3rd treatment. The first time he got chemo they were very careful and it dripped at a very slow speed which took almost 12 hours from start to finish. Today Chemo started around 12PM and he was on the stretcher heading back to Marcella by 3:15PM. While he was getting Chemo we had Chinese food for lunch and John was able to eat 8 buffalo chicken wings and a platter of shrimp low mein and pork fried rice. He even ate his fortune cookie!! It was extremely enjoyable!! Another good news item is that originally we were told that he would have to have 5 or 6 chemo treatments. Today we were told that he only has to have 1 more treatment which he will get on February 9th. He will have to get another Pet/Cat Scan sometime after the last dose of chemo. We also found out that John's hemoglobin and hemocrit was very low today.like at 8.5. So they have him an injection to help elevate that. This injection is much like Procrit but you only have to have it once every 3 weeks (it is called Aranesp). He will get his second dose at the next chemo visit. Nancy said that the low numbers is contributing to his weakness and may be why he is having difficulty making progress in therapy. We also met with the Nutritionist. John has lost a lot of weight recently because of the thrush he had in his mouth.it caused him to have difficulty swallowing. She has recommended that he drink an ensure in between meals to get good nourishment and said that she was going to look at his blood work and contact Marcella and have him take a multi vitamin. The social worker gave us information regarding what we need to do when John comes home. If he doesn't make progress by February 5th, Medicare will not allow him to stay at a sub-acute facility and he will have to come home. So we talked about the options that are available to us like at home physical therapy, visiting nurses, visiting certified nursing assistants, etc. I will talk more about this as we approach John coming home whenever that will be. So that is the update..it certainly is a positive update. We were both excited about the shortened chemotherapy treatments because once the chemo goes away the weakness will go away and he will be able to concentrate on getting some of his mobility back. Thank you for being there when we need you..but keep those prayers coming..I think they are starting to work now!!!! God bless all of you and keep you healthy!! Love to all, Emily/Mom
