My apologies for the long span of time between posts. Our lives have been busy with appointments and treatments, along with the usual things in life that take time and attention.  As you know from our last post, Gregg has finished with chemotherapy treatments as of December 14th, was pronounced in remission from the Non Hodgkins Lymphoma - yay! -  and was given some time off to hopefully put on some weight and recover from the chemo. We were both elated to have some healing and down time but we were still busy with a variety of appointments and follow ups.  But happily after two months post chemo Gregg was starting to seem more like himself.  His personality was back for the most part and he was starting to see the light at the end of the tunnel.

He has already started the radiation treatments for the cancer on his left tonsil. His first treatment was on February 6th.  Prior to that Gregg was fitted for a customized mask which keeps his head and shoulders from moving and the radiation techs took measurements and pinpointed the area that needed radiation.  Luckily he is only getting radiation on one side of his throat.  There will be some collateral damage to the other parts of his mouth, but the bulk of the radiation is pointed at the tumor on his left tonsil. And we did make two trips to the UW Advanced Dentistry department to have a guard made which pushes his tongue further away from the radiation and will help preserve some of his taste buds and minimize the damage to some of his salivary glands.   

He has had 10 treatments so far - he missed three days due to being snowed in that he'll have to make up at the end - and he is definitely feeling the burn on his exterior neck skin and also experiencing extreme dryness and some burning in his mouth and some pain in the tumor area.  It's kind of like getting a sunburn every day.  During the treatment there is no pain, but as the days goes by the burning and other symptoms increase and the damage is cumulative.  He will have a total of 35 treatments with weekends off and will compete radiation by the end of March.  The increase in pain and symptoms will continue after that for a few weeks before he will actually start recovering. Fatigue is the other main symptom which he has experienced, but so far it hasn't been as extreme as the chemo fatigue and malaise. 

When doing research I learned that although that doesn't happen here in the US, in some countries as soon as someone is diagnosed with any kind of head or neck cancer they are assigned a therapist because depression is the number one side effect.  It's a pretty traumatic treatment to do through and the after effects can linger for a long time and some may never go away. Thanks to a lot of research and Youtube I found some great holistic resources to help with the side effects,  and we're hoping they will make a difference.  I don't know how people got through all of this in the old days without such fabulous access to information and products. We're also continuing with Bowenwork appointments, which really help calm down the autonomic nervous system and allow the body to heal.  I'm looking into the potential for hyperbaric oxygen, if not during then perhaps after treatment to help his mouth heal.  We haven't had a lot of luck in the therapist department - not the right fit -  but will keep working on that, and he has been put on antidepressants to help him through.

Gregg has lost weight, which he couldn't really afford, because the chemo symptoms lingered along with mucositis, loss of appetite, and the changes in his taste buds.  Most things taste bad or the texture makes it impossible for him to eat much. We're doing a lot of creamy soups, cottage cheese, yogurt, smoothies with lots of good things in them etc. but it's not enough to turn his weight in the right direction.  We have spoken to the radiation oncologists about the possibility of a feeding tube, and made an appointment for a consultation with the surgery center to talk to them about it next week. Hopefully we can avoid it but it's a common occurrence with this type of treatment.  It's just so painful to swallow and the food taste pretty lousy so in the end he may need it to keep his weight and energy up enough to get through everything.  There are also some good products - the one we're looking at is called Liquid Hope - that are far superior in nutrition and ingredients to the usual Ensure type of products that are usually given with feeding tubes so that is a good thing. They're pretty expensive and not covered by insurance but from what I've read it will be worth it.

We also met with the gastroenterologist recently about the Hepatitis C treatment which was originally delayed until after treatment for both cancers, but we asked if Gregg could start it during radiation and she and the radiation oncologist agreed it should be fine.  That was good news.  The more he can get done and over with now the better. That treatment will take three months so by mid-May he will be finished with that. And we now have a new speech therapist - the previous one moved away - so Gregg will get some help with swallowing and keeping his throat muscles from getting to hard and rigid.

I know it's a lot of detail, but one of the things I've found during this journey with Gregg is that the doctors are good at what they do, but there is not enough advocacy in relationship to finding other resources.  I found almost every supportive aid from online research.  So if anyone else reading this finds themselves or their loved one in this situation, my hope is that some of the resources I've mentioned could be helpful to them. And anything we can do to create a better outcome and quality of life after cancer treatment is worth trying as long as it doesn't interfere with the radiation and drugs that are doing their job to fight the cancer.

Thanks so much to all of you that have checked in and shown your love and concern for Gregg as he goes through this difficult and challenging time. Our family has been especially wonderful during all of this and we are especially grateful for their love and support.