A BIG Welcome Back to the Journey..................
It's always nice to have a plan, but it's also very frustrating when a plan becomes difficult to come to fruition. And to describe me right now, FRUSTRATED would be an apt word.......but one of the more mild descriptions of my current disposition.
I apologize that I have not blogged since October 15th. VERY SORRY actually. Since finishing radiation on October 11th, the PLAN was to take a moment to EXHALE and then take a greatly anticipated family vacation that was rescheduled from this summer. Do those things and then come back to blogging. My return from vacation was November 7th. As I said, FRUSTRATING to have a plan go awry, especially since it is due to my health recovery for now being "stuck in neutral". I need to overcome some short-term (hopefully) medical issues to get my life moving forward again.
Back to my lack of blogging and updating all of you on the journey. Frankly it's SELFISH on my part to not update all of you on my journey as I've been so good at doing up to this past month. Especially since I should know in a case like mine---a recovering cancer patient--- that no news (or no blogs) can be assumed to be NOT good news. The quiet coming from my computer can be construed as......uh, oh....somethings wrong. So I'm hopeful and confident that my lack of blogging has not caused any of you to toss and turn at night and lose sleep. Don't think my absence would have caused that to happen. But I have gotten many....."just checking in and want to see how you are doing" e-mails and voice mails. While I have much to write about and have about 3 or 4 additional blogs in my head, I wanted my "COMEBACK BLOG" today to just kind of update you on where my head and body are right now. In addition you'll get a little dictionary lesson in the process.
My follow up visits---"inspection appointments"---as they are termed by UPenn, are held with my Nurse Practitioner. Erin works with my Radiation Oncologist and has been seeing me since the start of radiation. She pretty much hit the nail on the head at my first inspection appointment on October 26th............"I can tell you're one of those people who think, OK radiation is over and now I'm gonna get better. Well let me tell you, it might get worse before it gets better and it's gonna be months not weeks or days before you recover the way you want". It hit me immediately when she said it. It soaked in as I left UPenn. But of course on the drive home I said to myself that I was gonna be different than everyone else and I was gonna start to heal ASAP. Pretty much, I was dead wrong. Don't know if "dead wrong" is the right term to use though?
I've been feeling like shit since we returned from our Disney World vacation. I had to give up physical therapy on my shoulder during the last 1 1/2 weeks of radiation. (EDITORS NOTE: The next blog will deal deal with the last days of radiation and more.) It still hurts every morning when I wake up, but besides the issue with the shoulder, my main problems are centered on my mouth and my neck.
THRUSH
Formally known as Candidaisis
A fungal infection caused by any species of Candida
OK....it's a yeast infection that started on my tongue and has spread to other parts of my mouth
This pretty much sucks. How many of you have had the pleasure of having an orange/brown tongue that feels like it is growing hair? Any of you out there had this fun??? While it doesn't prohibit me from swallowing and everyday I can actually feel my taste buds increasing in their comeback, the Thrush causes pain to varying degrees pretty much 24/7. It peaks when I wake up and before I go to bed. So while the pain pills work, taking them every 3 hours drains my energy and makes me pretty darn lethargic. I've gotten better over the past few days to PUSH myself to get more active to try and fight through it that way. Friday and Saturday it was yard work, grass cutting, leaf pickup and yesterday (Sunday) it was 13 holes of golf with my bro-in-law Ken. As much as my golf game sucks, this outing was WONDERFUL to be out doing it. Great company with my BIL added to it. Hey.......and I par'd the the last hole we played, so that will keep me coming back for more!!!
LYMPHEDEMA
A build up of fluid in soft body tissues when the lymph system is damaged or blocked
This was an even bigger surprise than Thrush for me when I woke up one day and I was looking like the Elephant Man. I'm hoping I can get through Thanksgiving without someone mistakening me for a turkey. My neck does resemble that of a turkey right now. In addition to my neck I'm getting increased fluid build up in my right jaw. A couple days this morning I woke up and thought I swallowed a water balloon during the night. The other problem the Lymphedema has seemed to make resurface again is Vertigo. I can't lay in bed or on the couch and turn my head to the right. If I do, here comes the Vertigo. At times it gets more severe and I feel like I may blackout, which I read can be a resulting problem. So you can see that laying down and turning to the right is something to be avoided at all costs! While this Lymphedema does not hurt or really prohibit me in any other way, it is somewhat depressing as you really don't want to be out and about looking like a derivative freak version of your normal self. So I go and lose all this weight (down 40 lbs from April high water mark) and my face goes and blows up and you can't tell. SHIT!!!
I've been recommended to a special Physical Therapy they do for Lymphedema and I have an appointment on December 2nd. While it is not overly common to have this in the neck area---remember the fluid build up is related to the loss and/or the corruption of the lymph nodes. Also remember they took 66 lymph nodes out of my neck. 1 bad one and 65 clean ones thank goodness. But the most common form of Lympedema is with Breast Cancer patients who had mastectomies and the swelling occurs in their arms. Reading up on it more on line, it does not paint the rosiest pictures for me going forward, but it is also not something "grave" either. I think it will all come out in my initial consult with Physical Therapy to see how severe my case is. The one bit of info that I surely did not like is that it can increase ones likelihood of having a stroke. So let's see.........Cancer could kill me, now a stroke could kill me and possibly a heart attack may kill me because of all the high cholesterol foods I am eating to gain weight. NOTE: I was threatened by the Nurse Practitioner and Dietitian at my last appointment that if I lost anymore weight, they would sew a feeding tube into me. Well at least I know that low occupational self-esteem won't kill me. I would have been dead already after I pissed away my career and now feel like I'm permanently unemployed.
But it is "nice to be back" typing away at my blog which I enjoy SO much. As I said, I've got SO MANY things in my head to write about, but for this one........my return.......I wanted to give an update on the "current state of my union". My next blogs---the catchup blogs---will go over what has happened since my last blog on October 15th and what I've updated you on today.
Oh yeah, one last thing for you to visualize and to get a chuckle out of..............I've already told you I'm getting into the Thanksgiving spirit by having my neck look like that of a turkey's. Now I'm doing the same for Christmas. I'm told that with the Lymphedema there is a "garment" that is part of the treatment that best resembles that under-the-chin and tie-above-the-head silk that you would see in cartoons for a bad toothaches, or better yet, I'll be in the Christmas spirit as I'll look like Jacob Marley from Scrooge.
Oh if couldn't laugh at myself...........................
Best Regards and God Bless!
David D
