Sunday, March 25, 2012

Spoke too soon

Well, have to put my aspirations on hold, started feeling weird a couple of days ago, dizzy, headache, chills, sweats, coughing and it's only gotten worse except for the congestion thankfully.

Just wanted to document this and note that I only took one RAD001 pill last night to see if that would help. So far, no go...

Hoping to feel a little better by tomorrow.

Friday, March 23, 2012


Yeah, having a little trouble sleeping again and thought maybe I'd try and write myself to sleep. It's around 4:30 a.m. and my covers are in a knot from tossing and turning...

First, wanted to say that Rich is out of the hospital and back home. They still don't know why he keeps having the breathing (or not being able to) episodes but hopefully after consulting with some other doctors, they can determine what it will take to keep him out of the hospital. I just found out through a friend the other day that there's such a thing as CHF infusions that are supposed to alleviate a lot of the downsides from the ailment and give a better quality of life. Hopefully it's a viable option and will do some good if only until they figure out a better solution.

My Mom keeps trucking along through her chemo, couldn't be more proud of her for what she's had to deal with while battling breast cancer. I worry a lot about her and the stress she's had to deal with while going through what she's going through but if anyone can deal with it, it's her. She is the ultimate fighter and know that the chemo is working and hopefully by next year, all of this will just be a bad memory. Hoping to find out some information as to when her first post baseline scan is to see how the treatment is doing for her...

I guess these are the two things that have been prominently on my mind lately and probably a good explanation as to why I've been struggling to sleep. Another is that I took a longer than normal nap today where I was totally out of it for over two hours. I also think the time change has affected me as my routine has been to chill or nap right before it got dark out and now that it's getting dark later, have been lying down later and finding myself wide awake at 2 a.m., not good. I've got to break the chain and figure out a way to trick myself from taking a chill/nap so I can actually be tired when I go to bed, hmmmm...

Despite this, I'm happy to say that I continue to get physically stronger. I'm actually working out occasionally with dumbells and doing dips and push ups along with my normal remodeling projects which can definitely be a workout. This said, I'm proud to be working on two homes simultaneously in two different states while still managing to get out and have fun once in a while. The latest project has been the kitchen down here in Florida, and after a few weeks, I've finally hinged the newly refaced cabinet doors back onto the newly refaced cabinets and have to say it looks a lot better! Yes, it's been a LOT of work, first buying the wrong kit and actually going through one of the stages before I exhanged that for the right kit and proceeded to go through another seven or eight steps if you count taking down the old stuff and removing the hardware, etc... In any event, I'm looking forward to posting some before and after pictures once the appliances arrive. BTW, for anyone thinking of buying appliances at Home Depot or Lowes, you might want to take a look at Sears as they are by far the least expensive by a longshot. I think I paid as much or less for the entire set than most people pay for just their refrigerator including; stainless steel: 18.2 cu feet fridge (basic top freezer what I've always had), nothing fancy but it looks cool and futuristic, basic dishwasher that would've been high tech 10-15 years ago, a sweet electric oven that doesn't have the glass top like I've had but the old school coil burners that probably aren't as practial to clean but seem to heat up the pans much more efficiently than the glass top types and finally, a sweet modern stainless range hood/fan/light. I'm so excited to get these shipped but unfortunately have to wait until 4-11, oh well. Gives me time to install the new faucet, put up the glass mosaic backsplash, build a celing column to give the rooms some separation and finally paint while not forgetting to rip down the ha-nous industrial fluorescent tube lighting that's been in there since they built the place in the late 70's. At first, it's hard to get into a project like this because it's all boring prep work. I had to fight myself to do it and that part probably took the longest because I was so bored with it. Once I was able to get into the actual transformation portions of the project (i.e. base coat, glaze, then clear coat, then actually being able to hang them back up after finding the right hinges and hardware, that part seemed to fly by and I was actually staying up late doing it despite being exhausted and having a sore back. Being rewarded for your hard work is a very sweet feeling I must say and my reward will be walking into the kitchen in the morning, opening my fridge, grabbing my coffee and knowing where everything will be and having counter space to make the rest of my breakfast and to actually sit down and enjoy it while surfing on this computer. I'm realizing how important my fung shui is to my well being and I haven't even read the book! Everything should have a place or a function and sometimes less is more, especially when it comes to countertops. Don't know how I got diverted into a home and gardens piece but maybe I'm starting to get tired!

This leads me to me next thing that's been spending a lot of time in my thoughts and that is "life after cancer". Yes, I know that sounds a little bold and maybe a little too presumptuous but all of the markers that the cancer is still in me really haven't shown up in a while except the occasional twinge (like I have right now) in my former hot spot in my back (retrocrural area for you aspiring doctors or nurses ;). I have an occasional beer or glass of wine now without even thinking about it (well, if only for a couple seconds). It's been so long since I've experienced any pain after a drink so again, I'm feeling good going into my next scan on the 29th hoping for my first clean scan since my post stem cell transplant which was B.S. anyway if you ask me but that's another story...

I also think slowly but surely, I'm starting to get my Mojo back which can take on many different forms. For me however, it's all of the above. I feel more confident for one. Just a few months ago, I stepped on the scale and it read 155 lbs. I was just getting over getting sick but I was still in shock. Of course, I freaked out thinking the cancer was firing up again. Thankfully, the freak out lasted a short while and I then started to get busy making eating one of my jobs, literally! I was determined to put the weight back on after the weigh in and a comment from someone who saw me tell me that they were shocked at how thin I was. Now that I look back on it, it basically boils down to the fact that I'm single, busting my ass as much as I can on these projects and because of the side effect of "anorexia" (yes, it's a legitimate side effect from Everolimus) I was tending to eat only when I felt like eating (which wasn't much) and as result, I got super skinny and lost a lot of strength. Thanks to some wonderful natural rememdies and a focus on eating at least three meals a day that contain meaningful calories I've gained 15 pounds and now tipping the scales at 170, haha. I'd like to add another five pounds of muscle and thus the starting of weight training. Going to continue Yoga when I get back to the D to take advantage of a groupon I bought last year for a $1 per session, what a deal!`

The confidence isn't only coming from my appearance improving, I think I have a better outlook on the future as I've had a decent stretch of feeling ok. I can now look at myself at least a few years down the road with confidence which is something I haven't been able to say consistently for a while. I've also come to realize that it's probably a good time now to go back to seeing a therapist, just me, to deal with what has been a battle with post traumatic stress disorder or ptsd. When you're in it (fighting for your life, losing everything, getting back up on your feet, getting knocked down again, etc... it takes a tremendous toll on you. I can understand what the vets returning must deal with although on a different scale. I've lost family members and friends who have no clue what it's like to deal with what I've been through and because of that, I've tried to go on pretending that there's nothing wrong and I can tough out the physical and mental ailments by just living in the moment and medicating myself when the anxiety or pain gets to be too much. I'm thinking I want someone to put all of this into an objective perspective as part of my personal edict of getting my Mojo back . I've mentioned getting my real estate license which is still on the list as soon as the kitchen is done but I think I want to do something a little bigger in addition. Something that is going to help someone else out who might be in my position say 3-4 years ago. Or, something for someone who hasn't even developed Hodgkins Lymphoma yet in the form of fundraising (or working in some capacity for a charity that exclusively deals with Hodgkins). I think I am well enough now to contribute to society at least on a part time basis and see how it goes from there. I know with my sales and marketing background not to mention my experience being a cancer survivor, I can help raise awareness and hopefully money to fight the disease and better yet prevent it (because that's where we all should be focusing right now is prevention rather than treatments, except for those that are sick of course).

I didn't realize this was going to be this long and would have lasted now until 5:48 but that's one good thing being on my own "flex" time if you will ;)

While I don't expect to accomplish all of this tomorrow, I think everything I wrote about here is attainable and another step into normalcy as it were. I have some fun goals I want to accomplish too like paddleboarding and hopefully scuba diving in the next couple of months along with polishing my golf game and getting back on my bike. I'd like to travel a bit this summer as well, hopefully outside the U.S. with an eye on going back to Hawaii to visit my buddy Mike and cousin Jeff in the fall.

It wouldn't be fair to write this without the one main caveat however and that this is all contingent on a good scan on the 29th where I can continue the RAD001 and hopefully buy tons more time on it (say, another year or two maybe?, please?!).

Even if the scan isn't good and I have to try something else, if I can keep my mind strong, and continue to keep my body strong, there's no reason why I can't move forward on most if not all of these goals.

Here's to getting some sleep and waking up with the energy to take that first step...


Saturday, March 17, 2012

Rich back in hospital...

Got a phone call from my poor Mom earlier this afternoon and Rich is back in the hospital. It started early this morning and he couldn't breathe again. I guess his ankles were really swollen, not good. Hard to hear my Mom so scared, wish there was something I could do. Hoping for the best, hoping they can finally figure out what in the hell is going on.

Hard to muster up any good cheer for St. Paddy's, no big deal. It'll be here next year...

Friday, March 16, 2012

Back to somewhat normal

Well, good news for now, Rich is out of the hospital and seems to have a game plan with his doctors. He and they think it's a problem with his pacemaker so hopefully Medtronics can get it right.

As for me, I've just been enjoying life down here in Soflo while continuing to work on my place. I've had a couple of visitors from up north which was fun. Had a chance to drive up to Lakeland again with my buddy Todd to see the Tigers at Joker Marchant Stadium. It was fun but a pretty long day with an almost 4 hour drive each way! It was pretty crazy coming back, had the top down rolling along when all of the sudden we drove into a massive rainstorm (while the top was still down!). It was pretty weird as the rain really didn't hit us until we slowed down or stopped. If I was a physics major I'd probably be able to explain why the rain didn't hit us while moving or you can google it if you'd like but have to say it's pretty neat driving through the pouring rain in open air and not getting wet ;) The next scene was pretty scary though... The rain had stopped and having a chance to get a grip on practicality, I decided to pull over and put the top up. After getting back on the road and driving around 65, I looked in my rear view mirror and saw a blackish looking cloud behind me and what looked like a funnel cloud coming down from the sky. It wasn't completely connected with the ground but was swirling around. At first, it didn't register as I think I was still recovering from the driving through the heavy downpour incident. About 5 seconds went by and I looked back again and this time yelled over to my buddy and he saw the same thing I did. By now, the reality had set in and I started to freak out having visions of this tornado coming up on us and ripping us right out of the car! I mean, those things travel over 100 miles an hour right?! I asked Todd what we should do and his response was "find a ditch", I nervously proceeded to laugh my ass off... Luckily, the GPS told me to make a turn and when I did, looked in my rear view mirror and the storm was now going the other way and it was clear behind us, whew...

After taking the next day to recover, had a chance to see my good friend Bekah and her crew, Katie, Melissa and Karen who are all sweethearts. We went out on Atlantic for dinner and some drinks/live music after and it was pretty neat as there was a cycling race happening on Atlantic Ave. They closed off the street and made a loop, maybe a mile not sure but those bikes were whizzing by at some pretty high speeds. They were bunched up pretty tight too so when they rode by, you would feel the breeze so to speak... I didn't see it but there was a crash where some guy got jacked up pretty bad, I don't know how I missed that. Anyway, it was a fun night and glad to see my fellow Hodge warrior Bekah :)

So, I guess the annual Delray Beach St. Paddys parade is happening tomorrow. Gonna be a zillion people packed in, but it's a blast and you have to see a parade on St. Paddys right?! I missed the parade last week in Detroit in Corktown but judging by all the pictures on Facebook and knowing it was a nice day, I wish I could've been there, it's been a while since I've been to the parade on Michigan Ave.

So, that's about all I have time to write about for now. Going back to refinishing my cabinets. Bought this kit made by Rust Oleum called Cabinet Transformations and so far, it looks pretty good. I already used the countertop kit which turned out ok and if this works, I'll have a new kitchen for around $350, not bad.

I have my PET/CT coming up on April 5th. If all goes well, it'll be my one year aniversary on RAD001 or Everolimus. Feeling pretty well still, taking it 4-5 hours at a time mostly. I've figured that this is the amount of productive time I can have before getting tired and having to lay down or relax. Think I'll put off the cabinets for a bit and go out by the pool and do just that, it's such a beautiful day :)

Happy St. Paddy's!


Saturday, March 10, 2012

More prayers Requested

Rich is in the hospital again just found out. It was 5 am and he couldn't breathe again. Tracy his daughter took him in to troy Beaumont where hopefully a different doctor may be able to figure out what is wrong. If anybody knows a great heart specialist in the Detroit area, we would greatly appreciate any referrals. This is getting really scary, keeps getting worse. I dont think his heart is doing much, its mainly the pacemaker working rt now, ugh. My poor mom too, as if she doesn't have enough already to worry about. She's having the cumulative toxicity effect from her chemo now, remember it well. Once it builds up in your body, it really wears you down and makes it even hard to think (chemo brain).

Thanks for thinking of us,


Thursday, March 8, 2012

Stolat Mom!

I just quickly wanted to wish my Mother Cindy a late happy birthday! I wanted to add a pic but my computer is down, sorry Mom! Anyway, I just wanted to say how important you are to me. You are my number one advocate and feel so lucky that you're my Mom :)

Your light shines brightly, you are loved by so many... You always put everyone else's needs before your own, especially Nicole Rich and myself. Your have the biggest heart that I know.

I love and appreciate you very much...

Wish I could've done a better job of this but its not easy posting on this phone, doh!

Your favorite son ;) Chris