There have been a few changes since the last blog entry. I apologize for the rather large gap between postings but in addition to the usual physical challenges for Christopher there have also been some psychological and cognitive issues (chemo brain is real!) related to his cancer battle. Not to mention the ensuing behavior changes that go along with that. I have not been back to work full time since this started and I know the financial stresses of that weigh into that equation as well. It has been a huge challenge to say the least, but as summer is coming to a close, we are both still standing...sometimes I too feel like on one leg only...but we press on.
As I mentioned in the last blog back in April, Chris had opted out of the last two months of his 6 month chemo protocol and was going to start interferon treatments. That never happened due to both insurance companies denying the claim as it is not traditionally used to treat cancer. Because Christopher was not (and is not) in remission he still needed to have some form of aggressive treatment. He definitely was clear about not wanting to go back in the hospital for more chemotherapy, so he agreed to begin the chemo pills which he still takes at home. It was not the Dr.'s first choice. As I mentioned in an earlier blog it is just palliative, but hopefully it is slowing down the process so that they can limit the number of surgeries to remove what is on his lungs. The open thoracotomy is a very invasive procedure which he would have to have on both lungs and his body just cannot handle too many of them. Because the last chest CT did not show the lesions to be creating any problems at this point, the Oncologists and Surgeon decided to wait before going in again. Which was fine with us!
Just to clarify, the pills are not meant to get rid of the existing lung lesions, just intended to slow down whatever cancer cells (the metastases) that are traveling through his system. He takes them for 14 days and is off for 14 day. He does get a little nausea, loss of appetite and his hair is not growing the way he would like but this protocol is much more tolerable for him than the alternative. The only thing he has to do is blood work before and after he finishes and an exam once a month. His counts will not drop as drastically as with the inpatient chemotherapy but he can get quite low and fatigued. His port was removed in July as a leak in the line had been causing him some shoulder pain, so without that he does not have to be rushed to the ER at the onset of a fever.
Chris has been quite involved with Wolfson's Children's Hospital. In addition to being on the children's Board of Directors, We were asked to attend a lunch, representing the Oncology Unit, where a very large donation was made to the hospital. Christopher also got to throw out the first pitch at two Jacksonville Sun's games which was pretty exciting for him. Karen Wolfson is also doing a biography on Christopher to present to the Board, more specifically the behavior challenges that can go along with the type of ordeal he has been through, in hopes of getting more funding for the hospital's Psychiatric/Behavioral Departments. In January he will participate in the hospital's birthday celebration/fashion show fundraiser. I am including a poem at the end of this that Christopher wrote for that event.
Tomorrow Chris will see his oncologist for a routine exam and blood work. We will find out then when his next Chest CT and bone scan will be. Until then it is back to school for him and WE BOTH look forward to a healthier, more productive and prosperous year!
Many thanks to all of you, near and far, who continue to support us with your kind thoughts and prayers! With much love and peace, Patty
Thanks to Ana for these pictures of Christopher and for giving him a little Colombian culture!
A poem by Chris:
Unpredictability's
They say life is interesting,
both good and bad,
fun and painful.
It is these unpredictability's that make this true.
Whether it be winning the prize of a lifetime,
or your life being forever changed by disease or accident.
It is these unpredictability's that make life what it is...interesting.
