Lap of America

Well its been a week since I came home from my first round of Chemo
I didn't want to spoil the fun up north so here is my follow up to the wild ride.
No Leukine shots so far with another lab due on Wed. I figure a note every 7 days during this 21 day break should help paint a picture you would otherwise not understand.
I must say that so far I am in good spirits, positive and feel better minus the nausea than before going in. Energy level is low but with all of the new sensations going on and I don't sleep the same way either as if that makes sense.
The large mass on my left side that left me aching is practically gone. From what I understand is I will be staged again after my second round and the two PET scans will be overlapped to establish what or where I stand while under going treatment. I would like to be anything other than 3 but still am looking at 6 rounds of hospital stays minus the transplant.
Only scary sounding thing so far is CNS and the shot in my spine I will have to endure for at least 3 rounds to keep all well inside my mind. But the spinal fluid and marrow are clear from my biopsies so its a step in the right direction .
If you or a friend is undergoing similar treatment help them keep a positive outlook and hydrate! Food just does not seem the same so little meals help. Be a big shoulder. Have a positive conversation and don't treat us like we are fragile(pronounced like a Christmas story )
Think before you leap or say anything. Talk to them like any other day and keep the tone positive.
I can't tell you how many times thus far that I have had a friend or family member talk to me as if I had already passed(not constructive)
Remember what this is about. A lot of small little ones going through more scarier nights than all of mine and yours combined. They need more than a sympathetic thought or gesture. Add them all to your prayers and if you don't know anyone then step out of your comfort zone and meet one with a smile.
The science is solid!! Faith is even stronger!!!!
On another note I was introduced to simple accu pressure bands my step daughter Kelly found for me. They apply just a small amount of pressure below the wrists and with them I feel really good all day long. I will try and see if I have the original wrapping( designed for pregnant women and chemo therapy) , Nothing more than elastic bands with an adjustable pressure knob. Very simple and effective. I never take them off.
Thats about it for now. Still all so new and scary to us here. Hoping to find my rhythm and be able to do my old routines like drives and some range time.

I think I will be picking up where left off with the E-brake kits in the next week or so. I will try and create a easy way to track the orders and get them out while working around my schedule. So if you thought I was done,....Surprise!!!

Happy thoughts!!!
Mark

Quote from jorgebri60

Your outlook and good spirits are such an inspiration. Many many prayers for you and your family. Here's to meeting up someday in Carlsbad or anywhere you want. I'm there.
Have a blessed day Mark.
PS, Those are 2 cups of coffee

The drive is still on, just not the same schedule
Going as soon as I am cleared and hope for an early spring when the mountain passes are cleared in the higher elevation and geography
Same as before. I will have plenty of arm bands and driving the roads less traveled. No price of admission other than a smile and perhaps share a coffee along the way. You can follow as long or short as you like my friends but it can't be soon enough for me already
MMMMMMMM,....Coffee Looking forward to that Jorgebri60

Just remember that when thing have you down, you can always put on a happy face

Two weeks after Chemo update:
Well week two saw my white blood count go down and resulted in three Luekine shots in a row from Wed to Fri.
Now after today's labs I will have one every day until the next set of labs Friday(Oh Joy)
Side affect for me was muscle aches and joint pain and most was in the neck as if I slept wrong for a few days. Discomfort in the late pms for the most part. Sort of like my version of a male period
Monday was the first methotrexate shot into the spinal fluid. This shot is a chemo shot that will help me ward off the spread of cancer to my central nervous system and allow me to keep my boyish charm.
I did not enjoy this experience only because the radiologist hit a nice plump nerve and light me up before the local could calm the tissue down for the injection. Best way to describe it was it was like going to the dentist, its not the procedure but its the Dentist!!!! aghhhhhh!!!
I experienced a wicked headache from the spinal tap weeks ago to check the fluid, I decided to lay flat on my back and be a compliant patient this time around. Only time will tell if I get to avoid Tylenol heaven this time around!
So as of now I can say that I have almost completed one full cycle and should be back in for another 5 days of Chemo on the 22nd or 27th depending on scheduling.
So my advice for you to share is simple. Everyone is going to be different and have a different experience. I have shared mine with you as a friend and now I hope that you can relate a bit better with what goes on. Believe me when I say I have seen this scare the hell out of families in the hospital and specialists offices. They need an understanding friend who can look at them and say," I understand a little of whats going on and Im here for you"!
Now as for me I am hoping that I get some good labs back today and can spend a few days driving around in the Slingshot and get some range time

Okydokly Gang. 6 E-brake assemblies done and 5 shipped.
Thanks for the interest young Jedi. Next announcement will be after the next hospital round that starts Monday.
Stars aligned and the creek don 't rise I will have some more bits on hand upon my return from Chemoland and start on a fresh slate.
Just remember this more about the giving than the getting. On another note my shirts and swag bags are done so I will start pedaling those if any are left form the community push. Almost half way to 10K for the kids

On the upside of things we met with the transplant team at Moffitt and are being optomistic on completing that proceedure and being home for Thanksgiving
This means that radiation will be the last hurdle and give time for complete recovery before the passes clear in the spring and get me on the road as planned(althought delayed)
If I have not mentioned this before I encourage you to be that big shoulder, share a story or two and just be there for your friends and family members going through this.
Thanks again and we shall see you out on the roads less traveled
Mark

Okay my fine young Jedi.
Round two done and although this will be a busy 21 days off I still have 3 sets ready to go. Seems the black handles are popular so I have three kits with black handles. 2 with red stitching and one with Black stitching.
I will pick up some more parts and get some others in the Que but for now just think happy thoughts and let me know if you want on the list.

A new twist on the subject came up when the regular silver handles went on back order. I have a different style in silver that I am going to add in and post some photos as soon as they arrive. Much more like the black handles but,..well seeing is everything so as soon as they arrive I will share them with you.
Right now I have two black handles with red stitched boots available.
Aobfarm is first in line for one of those if he still wants it so let me know young Jedi
Going to the range in aboput an hour to test my port against a .338lapua and see how it and I hold up

This is as good of a time to post this again for interested folk wanting an E-brake assembly about donations and payment.

As many of the original owners of the assembly know I was donating all of the materials and shipping in exchange for a minimum $60 donation to my St. Jude charity @ lap of America.(in events section).
If your curious about the St.Jude portion just click on the Events for St. Jude link at the lower left of my posts.

Well as Murphy's law would have it I also received my own diagnosis of Double hit Lymphoma so I changed the way you pay for the item as follows,...

It is now in two parts.
I) $40 payment for all materials and shipping by pay pal or old fashioned check so I can continue making these at cost.
II) $20 minimum donation to St. Jude

As you can see its still only a $60 product but alas I am afraid that I am not raising the same levels for the kids that I once did just a few short months ago.
So for the new guys and gals looking at getting one of these items please remember that small donation goes for a good cause. And while I can't donate more than my time to make these I do take great pride in the generosity of this group and the hearts that you all have.
Just wanted to say thank you very much
Mark