Got a 6th floor penthouse suite here at EMMC Riverside Hotel. Well maybe not a suite but at least the window side of the room: 636 for all those interested in a visit. Pretty sad when the nurses recognize my name on their intake sheet and bring down a bed-extender without me having to ask. Maybe I can call that, “special treatment”.
To be perfectly honest this week has really sucked mentally for a lot of people. No matter how mentally-tough a person is, when a friend gets bad news and cancer is involved it rocks you. All I know is there are two tough SOB’s fighting a couple knock-down- drag-out fights right now, and when this is over we will truly know the meaning of “never give up”.
Made it home from Boston tonight with no problems. It was pretty impressive but we were either early or on time for each appointment throughout the day which led to us getting out of the city before rush hour kicked in. Not much to report in the way of information about all the tests that were run today; everything tested out “normal” or in other words, OK to proceed. We expected this and today was more of a formality than anything, but we had another good meeting with the oncologists who was very helpful in answering questions and explaining the process in more detail. Stevie was able to meet with a couple resource coordinators who will help us with needs and logistics while she and the other caregivers are down there with me. Dana Farber is a pretty incredible place……I’m ready to walk in those doors with the big “C” and then walk out………without it.
Round 3 starts tomorrow………bring it.
My PET scan came back clear. This means the poison is working and we are sticking to schedule. This blog is intended to relay facts and information to my support system and to allow my support system to correspond back if they wish. As discussed earlier, I do not tend to stray off the beaten path of pure information as I do not see the need to be “expressive” or write long posts describing my day, hour by hour. That being said tonights post is a bit different because this is life and this is what I’m going through.
A good friend of mine, about my age, is currently battling this same unfair illness. Although a different type of cancer, it is still the same battle. We met through fighting this disease. At first I was the “survivor” and he was the “patient”. We shared experiences and how this illness had affected us; how it trampled both of our dreams as young 20-something-year old, and how we then became bound and determined to not let it trample those dreams. We would correspond our good times about a fishing or hunting adventure but most of the time used each other as someone else who REALLY KNEW what the hell each of us were going through. Then I became the “patient” again. This can really take the wind out of your sails; whether your the one getting the news or the one currently fighting the battle. So we were in the trenches together; he giving more inspiration to me I think, but this time the tables were turned. HE was the one that had experienced my treatment regimen and was able to give words of advice, encouragement, and that overall sense of, “Hey bud…..you’ll be fine…….we’ll be fine.” I would constantly brag him up to my support system when people would comment on my positive attitude. I would simply tell them how I’ve got a friend whose fighting twice the battle I am and HE sends ME positivity everyday. When I would be getting chemo he would send a text, “How you holdin’ up?” and each time I knew this was coming from a guy who had felt the exact same way I was feeling at that very moment. I would get 50 texts per chemo, but always look forward to his because he knew. A shoulder to lean on when I am at my lowest because I know he is there too. Except he didn’t get the same news I got today. My oncologist told me my PET scan is good and the chemo is working and 253 miles away his told him nothing was working. This is unfair and upsetting. As a friend and fellow warrior in this battle this is unfair. I fight for him now. I will not let the wind be taken out of my sails or his. I will fight hard enough for both of us if I have to. I hate this disease……I hate cancer.
Updated the SCHEDULE page including our Boston itinerary for the month of March and April.
Stevie and I will drive to Boston on Tuesday evening for pre-transplant testing on Wednesday. Fortunately they jam pack the day so we will be able to return Wednesday evening: 9am pulmonary function test, 10 EKG, 1030 clinical with oncologist, 11 consult with program Nurse, 1230 lab draw, 1 Echocardiogram, 2 Chest X-ray, 2:45 Tuberculosis test. This is a slight modification in my chemotherapy schedule as I was originally scheduled to begin round 3 tomorrow(Monday 24th). Our hope is that we will get right back on track with round 3 on Thursday, Friday, Saturday at EMMC in Bangor. My blood work on Thursday came back improved from Monday. White cell and hemoglobin were both up and I had actually climbed into the “low” range in regards to immunity rather than “non-existent”.
The transplant and our time in Boston is closely becoming a reality rather than a penciled in square on the calendar. We approach this event with confidence, optimism, and just the right amount of nervous anticipation. A leader in my life sent me this quote:
“Don’t be afraid of your fears. They’re not there to scare you. They’re there to let you know that something is worth it.” C. JoyBell
Tomorrow at 8:30 am I have a PET scan. I think I have explained what that is in an earlier post but basically it is a CT scan “plus” which has the imaging ability to indicate whether there is cancerous tissue/active cell growth occurring in the body. HOW IT WORKS: Special diet restriction limits any kind of sugar intake into the body 24-48 hrs prior. Then the radiologist injects a sugar-like solution combined with radioactive chemicals into the blood just prior to the scan. Since cancer cells are the strongest and fastest growing cells in comparison to others around them, they seek out the “sugar” coming into the body and feed on it. The radioactive dye is then visible to the radiologist after the body is scanned with the CT/PET scan machine. Some of you may have heard people talk about whether the scan “lit up” or not. This reference comes from the way the actual scan looks like when read by the radiologist or doctor; the “lit up” areas can often indicate cancerous cells/growth. (they kinda look like they are glowing) So that is a very crude, elementary way of explaining a PET scan; please no taking this definition to your local doc as the professionals will say, “Well there is quite a lot more to it…..”
So tomorrow around 9:20 send a little our way…..this scan comes back clear and we stay right on track to knocking this cancer crap out of the park.
PS; will not know the results until at least Monday. I’m sure I will get a million texts and I appreciate every single one, but rest assure….when I know…..you will know.
Hoping to have improved counts tomorrow with blood work. It would feel good to have a few days where we are not constantly nervous about getting an infection/virus. Still battling random nausea and headache/fatigue but less each day. I remember when we first learned of our schedule with the high dose chemo and I saw how I only got infusions for three days and then had 17-18 days before the next round. I thought, “That seems like a long time…..wonder if they’ll let me ramp that up a bit so we can get this over quicker.” For those that know me well, you are probably shaking your head right now and rolling your eyes but I honestly was thinking we could take a week of the “recovery” out. I was wrong. It’s hard to explain but this high dose takes so much out of you, all I have been looking forward to since the infusion is this week 3. Just a quick breath of relief and the ability to get my body ready for another round. I’ll try to post mid-week or if anything else comes up.
So today I’m finally coming out of it a bit. If I had to use a sports analogy I’d say I’ve made it down the long straight-away and coming hard into turn three. Hoping this weekend I make turn four and then have a week of good and strong recovery again(that really helped mentally and physically last time). Today was blood work which came back really low again(expected) so we are just being extra cautious handling any situation that could present germs or bacteria. Another part of the prep for a stem cell transplant was a full dental examination. I didn’t know or realize this had to be done but basically they need a dentist to ensure that the patients periodontal health isn’t compromised since the mouth is such a high risk for infection during the transplant. My exam came back clean so that was good news. Thank you to everyone for all the great support. We are getting excited as Boston nears……kick this crappy cancer stuff for good.
Overall doing fine. Blood work came back about what it should be….no medications needed. No public places, and gloves and mask when applicable until Thursday(hopefully cell count increases then.) Not much else to add………cancer sucks but positive attitude and forging on is the only way to go. All set here at the house; I know a lot of people have been asking if I need anything. I sound like a broken record most of the time, “All set, Thanks!” which I know can be frustrating but when the time comes…..we’ll speak up.
Well I could probably paint a picture of what my yard looks like covered in snow, all from memory, from the point of view where I spend most of my time; the couch. Ehh too bad I can’t paint. Long way of saying, ya, going a bit crazy here. I saved two of my post-chemo steroids for today so in a way I, “eased off them” this time in hopes that I don’t crash tomorrow like I did before. Eating does help the nausea along with anti-nausea meds but sometimes it’s like a chill to the bone; not easy to get rid off. The nuelasta shot hasn’t given as bad side effects as last time so knocking on wood that each one of those gets better. Back in Monday for blood work…..anticipating low counts due to how fatigued I am but this is all to be expected.
Hoping to be up and about the house tomorrow. Stevie and I will be home if any visitors are passing through…..company would be good.
calebmcgary 
