Dear Mom - Letters to Heaven

Friday, April 18, 2014

Sarcoma Treatment Jounal Entry Five

What a relief it is to be able to just walk around in a normal stride. Although not completely healed I’m feeling much better every day. The radiation still has some very visible affects and some stubborn areas that are still pealing but I’m through the dark side so to speak. Although I re-learned yesterday that radiation has some unseen affects as I crashed hard in the afternoon and was tired late after feeling great in the morning. I feel great again this morning and hope to be back on the treadmill soon. Little Martha has finally come together. I can not believe I can sit down and play this song. It has about a billion moving parts in it and is just so satisfying to be able to play.


So finally a much needed reprieve as I don’t have surgery until the 28th of March. There will be two doctor appointments prior to that and I’ll update you after the fact. But in the meantime you all need to help me take advantage of this down time by quite literally dropping the whole subject.

What a lost opportunity it would be to recharge my batteries if we go through the next 30 days without taking a breath. These days every time the phone rings I cringe. Those of you who have put me on their calendar for a regular Sunday call I am already dreading next Sunday. So please stop that right now and wait for the emails they come out on Monday morning. Please do not ignore the emails a lot of effort goes into them. In fact those of you who take the time to respond by email are the ones I prefer. Because I’m sitting down ready to read email instead of being caught by surprise with a call.

All weekend plans are tentative: Kris and I are playing it by ear and may run off to the outer banks some random Friday afternoon if the weather is nice. We are liable to up and go any weekend and might not know until that Thursday night. I know for you planners that’s hard and we apologize for that but that’s kind of how we roll anyway. If you take it personally you have to stay behind after class and write on the blackboard I’m a dummy a hundred times.

Others who have mentioned visiting me in the hospital good lord please don’t. This is not a party or a reason to get the family together. I am going to be zonked out of my mind one night and doing physical rehab the next day and hopefully headed home the third day. I’m not interested in dealing with any additional germs brought in from who knows where and will have a huge incision that I do not want contaminated with staph or any other kind of bug or virus. Please clue yourself into this situation its major surgery and the only person I want to see when I wake up is my wife with a milkshake. Anybody else other than Kris needs to wait until I’m back on my feet. That’s not a request that’s an order. Those of you planning on coming down to see me at home after surgery – please don’t. Again I don’t need any germs introduced from out of town or down the street so wait until I am back on my feet. Then I’ll be ready for visitors, beers, laughs and story time. So everyone sit tight, relax and put the worrying, and planning aside for the month of March.

Now that everyone’s offended I’ll say I know you are all well meaning but the thing with this disease is that there is a huge constant mental component. Constant so while you are going on about your day and life pre-occupied by what’s confronting you at this very moment the cancer patient in your life is praying for that distraction. If you really want to do your cancer friends, congregation members, neighbors and family a break don’t talk about cancer to them….ever….they want the normal boring stuff. They know they have cancer and are trying to have as many normal moments as possible. Talk to them about the weather, your team or make them laugh. It’s the best medicine.

March presents itself as a whole month of normality for me (hernia scars are fading, my junk is looking more or less normal again, I don’t have radiation targets drawn all over me, the daily radiation trauma is over, the smell of burnt skin and petroleum is gone and the peeling and burn is going away) you bet I’m going to take advantage of that as best I can even celebrate it – so you all need to play along…you feel me…enough said?!?!

Image
I know it seems counter intuitive but when you approach someone with cancer and talk about it you are expressing your fears and concerns projecting your worries onto them making them relive it and sapping them of their strength as they digress upon it once more (obsessing about it yet again). Visiting them at the hospital or even at home is a lot like rubberneckers on the highway or visiting gorillas at the zoo and just about as dignified.

Wait until I’m in my natural habitat to come visit me!

Image

Paul

Sarcoma Treatment Journal Entry Six

Hey Friends and Family,
March madness well not really things are quit calm – the calm before the storm perhaps but I am noticing my hernia surgery swelling is resolving itself further. After five weeks of radiation I am now just finally repairing myself naturally and the swelling from the original surgery back in November is getting another chance to go down. I hope this bodes well for the next surgery scheduled at the end of the month. We received some wonderful artifacts from big brother Jay in the mail recently a little something from the old days and I think all of you elbow benders might get a kick out of Highball Tommy! Plus we have an additional artifact to the Flyers shrine building under the television. Only Jay would have a cassette of Kate Smith singing God Bless America.

I feel great and was back up on the treadmill taking full advantage of our snow days and even got a little run in as well during my work out. I have to be careful with rubbing my legs back and forth as I run with all that new skin still recovering from radiation. But I thought I would add Vaseline like the marathoners do the next day to keep a rash from forming but decided to lay on the sofa instead.  Also on the recovery front the guitar is back out and in full swing. I’m headed off tonight to play out in public. You all know it’s about the music with me it gets my mind focused elsewhere is incredibly satisfying and I strongly believe it has curative effects.

Just listen to Pharell’s “Happy” over and over again and try not to feel euphoric. http://www.youtube.com/watch?v=y6Sxv-sUYtM&feature=kp
(Can someone say Smokey Robinson check the little one at 12:28pm at this link http://24hoursofhappy.com/).

I’m actually hoping for a small crowd at tinis tonight so I can catch up with the staff. The owners have been very supportive and are fans. Those of you local come out if you can there won’t be anyone there frozen yogurt season is not yet upon us but I’m itching to play trying to give back and taking advantage of this down time in my treatment schedule.

2861 Lynnhaven Drive and North Great Neck

It was great to see Mike and toast the Sunset Sunday afternoon. Hopefully we will be circulating Saturday as we need to catch up with Jeff and Lori as well.

That’s all for now and well see the family at the beach in July god willing and the creek don’t rise.
Kari and Mark get your butts down here some Saturday night soon we know you have busy weekends so it’s tough but we’ll catch up – keep us posted.

And last but certainly not least a huge shout out to Denice and Janette who made a miserable situation tolerable. They laughed at all my vain attempts to put a positive spin on the situation. Thanks for playing ladies and they were there with a comforting word when I felt down. They are champions more than any sports team, politician or entrepreneur could ever be. Whether they know it or not or whether they like it or not and I really don’t think I can overstate it they are friends for life like Androcles and the Lion http://en.wikipedia.org/wiki/Androcles and that’s how I feel about that. Hope to see you two soon under different circumstances. I’m due in at 9am for a follow up with Scott on the 11th hope to say hi then as well.

Peace!

Paul

Sarcoma Treatment Journal Entry Seven

Beautiful day family and friends and I had a very good doctors visit this morning. In short the suspicious mass that may or may not be a tumor has shrunk even further. My radiation oncologist was delighted – it’s a short message today but a sweet one…smaller is better it quickens recovery and hopefully reduces the surgical field. It was great to see Denise and Janette and even with a lobby full of patients they made time for me. They are two very special people and one of several good things that has come out of this experience. Remember there is darkness in light but there is also light in darkness and these two shine especially bright.

Paul