Keep on moving...

That's been my edict ever since I've been feeling better over the last few weeks!  My feet have finally shrunk back to their normal size although I still have some edema left in my ankles.  It's a little sore but nothing like it was before thankfully...  I had my monthly check up today and everything checked out OK I guess.  They just draw my blood and give me more Everolimus as I turn in the shell from the pills I had taken prior.  I'm not sure why they want them back; why in the world wouldn't I take the medicine?!  Seems silly to me but whatever...  They changed the required CT scans now from every 3-4 months to every six months which is nice.  So, I don't have to worry about a scan until January.  Hopefully after my birthday....

So, with my dogs back to somewhat normal and no infections or stabbing pains in my back I've been trying to balance taking care of my sister (helping my Mom) and trying to enjoy my relative good health :)  I'm emboldened to suck all of the nectar out of this sweet remission, I feel so blessed.  One of my dear friends Bekah is in the hospital due to complications from the stupid Hodge and while I'm aching inside knowing what she's going through, it just reminds me that relative good health is so precious, I can't take it for granted or waste any second of it!

Because of this, not to mention my bachelor status, I feel compelled to travel whenever the opportunity presents itself.  I've kinda given up on dating, it's such a racket and I'm tired of having to answer "so what do you do?".  If I'm blessed enough to meet someone who accepts my situation without having to do the whole online dating thing, great!  It's not exactly easy doing all of this on my own but unfortunately being a cancer survivor can be a lonely endeavor sometimes.  I've learned to manage however so whatever happens happens I suppose...

I wrote the above paragraphs on a plane coming down to steamy Florida to check on my place down here.  I was sitting with a couple who were a bit older than me.  The guy remarked to me as soon as I sat down that he needed to "get drunk so he could fly".  When he said that, the smell of alcohol was already permeating from his pores.  He then popped some pill along with his wife and proceeded to drink several of those little travel size whiskeys and by the time we landed he was completely tanked.  I had my headphones on for most of the flight but when I took them off, all I heard coming out of his loud mouth were F bombs every other word, ugh.  I could've handled it by just ignoring him as I was trying to do the entire flight.  Unfortunately, there were two little girls sitting behind me with their mom who had a mortified look on her face.  I had to say something...  Thankfully, his wife finally stepped in and along with a couple of other passengers joining my side, he finally shut up.  What a total jackass...  From there it was on to the tri-rail shuttle  (the tri-rail is a train that runs from Miami to West Palm beach all day long).  Unfortunately, the shuttle never showed up, great!  So, the other 3 of us who were waiting for the shuttle to the train station banded together and got a taxi to the train station which is about 15 minutes from the airport.  We left at 10:05 and the train was leaving at 10:18 -pretty hairy- but we did it walking up to the station as the train was pulling in, what a stressful but satisfying adventure!

I guess that story is a perfect analogy of my life these days, never easy but finding a way to make things happen... As one of my all time favorite basketball players said (Ben Wallace from the Detroit Pistons), if it aint rough, it aint right!

Word...

Chris

Cankles

Hello remaining readers, haven't written in a while, feeling the need to vent so what a better way than to release my frustrations into the blogosphere....

Life overall actually has been good, I had an opportunity to attend my cousin Jeff and his new wife Heather's wedding in Oahu.  I swam with sea turtles, jumped out of an airplane over the ocean and watched my once kid cousin marry his beautiful bride, pretty good stuff!  I also was able to raise enough money through the creation of my sister Nicole's blog and subsequent fundraising to get her back on track with therapy to help her recover from her stroke.  I have to say that August was one if the best months I've had in a long time...

With that said, the side effects and lingering effects of having so much therapy continue to take their toll on my body.  The latest issue is my feet or what were once feet and now looking more like balloons.  I had a staff infection for a while after my seventh chronic ingrown toenail was removed and I think being active in the ocean has brought it back even after a round of augmentin.  Have to go in tomorrow to my podiatrist to find out what's going on.  I haven't been able to wear shoes for two months now, this is getting old.  I've had to buy all new shoes one to one and a half sizes larger to try and prevent the toenails from growing back into my skin and no matter what I do, even as my toenails continue to get smaller and smaller from extraction, I am still dealing with this crap for the last three plus years.

If I can figure out how to deal with this, the world will be my oyster!!  I feel so blessed to have my relatively good health right now and the cancer seemingly staying away thanks to the success of the Everolimus.  Thank you Novartis for providing the drug and covering my medical expenses.  I feel fortunate to be a part of the successful arm of this experiment and honored to be participating in something that will hopefully help others down the road with difficult to treat Hodgkins.

Here's to normal sized feet the next time I write.

Sorry to gross anyone out!!  Maybe there are others out there who take Everolimus (RAD001) that have issues with chronically swollen feet?

Nicoles Blog Address

Hello again, I finally put out the rough but functional outline for what will be Nicole's donation/progress blog.  You can find it at nicolesangels.blogspot.com 

Thanks so much for your support!

Chris

Quick catch up, Nicole

Hello there, to whoever is interested in this blog, I sincerely apologize for not keeping it up to date.  Life has been difficult over the last several months and I think it all came to a head when Rich passed.  In other words, I think that was the low point.  Nicole is still struggling and I'm in the process of brainstorming ways to raise money for her as her Medicare ran out and she's no longer eligible for any type of therapy, none.  Out of pocket it would cost $80 per session and she should be getting some kind of therapy every day, either speech, physical or occupational.  It is a lot of money and I have to figure out how to make it happen.  Any suggestions would be welcome.  I'm going to start a new blog for Nicole highlighting her fight to talk and walk again.  I hope this works...

As for me, I'm still kicking.  My last scan was unremarkable or whatever interesting words they choose to use on the dictation portion.  My spine is still eroding though and it's obviously a concern of mine.  The pain is always there to some degree and I just have to be careful with what I do.  My toes oddly enough are my biggest nemesis right now.  I have chronic ingrown toenails on both big toes, all four corners, ugh!  They're like the terminator, they just keep coming back...  I haven't been able to wear shoes without causing more damage in a long long time.  For those following because they are on Everolimus as well, the fatigue is still there in full force.  When I can sleep, I do it a lot.  If I don't sleep at night, I will sleep into the afternoon if I have to.  I just know the 'importance of sleep and the wear and tear it does to your body when you don't get enough of it.  Needless to say, this has been difficult to incorporate into a normal life but it's a work in progress...

So, next big step isn't for me but my sister Nicole.  I will post next time with a link to her new blog or my new blog, same thing.  This is the most important thing I can do in my life at the moment is help her.  My goal is $8,000 that will pay for 100 sessions.  The idea is to raise enough money until next year when her Medicare starts over.

Selfishly, I must admit I'm hoping that by doing this it will lift me up as well.  Not financially as I'm able to get by modestly.  What I'm hoping for is a lift in my spirits as I've been down for a while now.  I've lost some pretty important resources in my life, some I've discussed, some I haven't.  Life has not been easy and I hope as things come together hopefully for Nicole I'll start snapping out of my funk and start enjoying life again.  There's a certain amount of guilt that I feel anytime I'm doing something "fun" as I think of her being stuck in a bed unable to walk or talk and surrounded by ancient people with dementia.  I think we all know she'll never be the same after her stroke but we'll never know how much she's able to get back if nobody is working for her.

Wish me luck and sorry again for staying away.  Feels good to reconnect with the blogosphere again!

Cheers!  Chris

Hard Times

Well, I'm forcing myself to write tonight because I know it's been way too long and some family members have reminded me of that recently.  I guess you could say that the main reason I haven't written lately is because there hasn't been much good to write about unfortunately.

I'm saddened to say that my stepfather Rich has passed away.  He got hit again with some kind of infection that landed him in the hospital and he ended up with c-diff.  They tried everything but in the end, his body was too weak to fight any longer and he passed in the hospital with the immediate family in the room.  I couldn't stay in the room to watch his final breaths, it was just too much for me to handle losing so many friends with Hodgkins over the last few years in very similar circumstances, being intubated...  So, right before they decided to take the tubes out and let him pass, I shook his hand and thanked him in my head for everything he's done for my family, especially my Mom and Nicole.  He was probably the nicest guy I've ever known, caring more about the welfare of others more than his own ever since I've known him as he married my Mom over 20 years ago.  I learned so much from Rich, he was a great Man, a throwback, one of a kind.  He is going to be missed by a lot of people. 

This is a sad story but a testament of what kind of guy he was;  As I've written previously, my sister suffered a stroke.  Unfortunately, she hasn't improved all that much and I will elaborate on that later.  Anyway, she is going to be in a wheel chair for a good while and knowing this, Rich sold the beautiful place that they were very comfortable in to a more modest single level home that needed work.  He had been in and out of the hospital several times at this point and I know he didn't need the extra stress.  They got that place fixed up and right before the move, he ended up in the hospital and never got to the chance to come back and sleep in his new home.  A lot of the work that was done in the house was to accommodate Nicole.  He had guys widen the bathroom door and her bedroom door (when she's able to come home) so her wheelchair would fit through.  He also had the guys put in wood floors instead of carpet so she could get around in the chair.  I can't say enough about how grateful I am that he came into our lives just over 20 years ago. 

So I touched on Nicole earlier and it's unbelievable what she's been through.  She literally had a hole in her head left over from the initial surgery that was left to be exposed to whatever got near it.  I looked in there when she was at the nursing center and you could see a screw sticking out, I knew something was wrong there.  So, they finally got her to see a plastic surgeon who took a piece of skin from her thigh and sewed it onto the middle of her scalp, lowering her skin over the hole.  She now has a reverse Mohawk that is going to stay like that for a year until they can blow up the side of her head and pull the skin back together.  It is a pretty painful procedure from what I know and I can't believe she has to go through more than she already has, it's never ending.  When we visit, she tries so hard to get words out that it's painful to sit there and watch.  I know they have her on medication to help her mood and I'm so thankful that something like that is available as I don't know how she could cope otherwise.  I know I get frustrated if I get tongue tied but to not be able to get a word out except randomly would make me go crazy.  She also has Apraxia which means she can't connect her thoughts to any form of expression as of yet.  She's taking baby steps with spelling her name and the abc's but it hasn't gone much further than that.  As I mentioned the house earlier, we hope that she will be able to come home but if she stays like she is now, I don't know how it can happen unless a full time nurse came to the home 7 days a week.  Medicare/Medicaid won't pay for that I'm pretty sure so it's scary and depressing knowing that there is a chance she may have to spend potentially years in not so nice places.  I know that if anything happens to me, everything I have will go to getting her a full time home nurse.

Needless to say, things are a bit grim right now but somehow, some way we will figure out how to carry on.  The final issue now that has been not ignored but put on the back burner is my Mom's relapse of her breast cancer.  She has gone over a month dealing with everything from my sister to the move to Rich and now it's time to turn the attention to making sure she gets the best treatment.  We have an appointment on Wednesday at my cancer center Karmanos downtown to find out exactly what type she has now (the initial biopsy was inconclusive but there is suspicion it's changed types).  We will find out then what the plan is but it will surely involve more chemo and I just can't believe this is happening...

Doing my best I suppose to maintain my sanity, I had a CT scan last week and I don't even care what it shows.  I'm feeling ok but could as usual use more energy.  My main focus now is to take care of my Mom and Nicole the best that I can. 

As always, thanks for reading and caring.  I desperately want to write about something fun and uplifting and know something good is going to happen to us soon.  Until then, it's breath by breath, trying to find little pieces of positivity in small things like the sunset tonight and the warm temps that are coming in.  Stuff like watching all the stuff I planted last year bloom like the baby cherry blossom trees in my front and back yard.  Spring is supposed to be healing so here's to my Mom and Nicole healing and my continued relative good health on this clinical trial.

Cheers,

Chris

Quick update

So I just wanted to update on everybody's condition including my own.  My sister is still going through a rough road.  It seems as if the establishment has given up on her and it's going to be up to us to figure out a way to keep getting her physical/occupational and speech therapy.  We can't do anything yet as she's in acute care right now recovering from surgery to repair the hole on the side of her head that never healed.  They took a graft of skin from her leg and somehow attached it to the side of her head.  I'm looking forward to seeing how it came out when she can get her bandage off.  Poor thing, they had to shave her head again and I think finally this whole thing is getting to her as she had a meltdown after the surgery.  Who can blame her?  She was supposed to be making plans for the summer like the rest of us and instead is totally dependent on other people to take care of her.  Our biggest goal now is to get her home with my Mom and Rich, despite their own health issues they are busting their butt trying to get the new place retrofitted for wheel chair usage and making the bathroom usable for her in the future we hope.  There is no other way to describe this story but as really sad.  There will be a time in the future where we get hope back and I can't wait for that day to come...

Regarding my Mom, during all of this crap as if we didn't have enough problems, found out her cancer is back and has spread to a spot in her lung.  Just waiting for another test and she is going right back into treatment with some kind of chemo cocktail.  Her attitude is amazing but understandably it's been hard to cope.  Everything seems to be overshadowed by Nicole however.  That said, she is still doing EVERYTHING to take care of Nicole's situation and we've been grateful for the family chipping in to make sure she's not alone for too long.  Where she was staying was pretty depressing to say the least...  It would be nice to get some more help from her father and his wife but I guess they have other important things going on, I don't know.

I guess I will save some decent news for last as I know these posts have probably turned a lot of people away due to the depressing tone over the last several months.  I wish I could somehow turn all of this into a rosy situation but the real life reality is not very rosy and it would be disingenuous for me to sit here and candy coat all of this.  Back to the decent news, sorry!  My last scan, the one where I thought it was going to be bad turned out to be not so bad after all!  Everything held stable and some disease was even smaller.  Just in time to celebrate this though, I developed sciatica in my back and have been dealing with this nagging painful bs for the last month plus now.  It's much better than it was as at first, I couldn't even walk.  Thanks to my friend Derek who's an excellent chiropractor, I'm walking upright again!  The next stage is to somehow get rid of this pain that goes all the way down my leg and I'll be good to go hopefully for the summer :)

I have a ton of stories, some funny some not so funny but I don't have time right now to write an entertaining piece.  Just wanted anyone to know who still reads this what's happening.  I hope to have some good news here sometime hopefully in the near future...

Time to go outside to the nice sunshine here in Florida and continue to work on my patio.  I'm trying to get this place together so it's able to be rented.  I need to be in Michigan to support my family and hope to head back by next week.

One quick note, please take a second to look at Bekah's blog which you'll find a link on the right, "True Beauty Never Hurries".  We spoke recently and she is great but could use some positive thoughts as she deals with the after effects of so much treatment.  She is the only original refractory Hodgkins friend that I met on the old Lymphoma Board who is still around (there are a couple more but I don't know them all that well, Zack comes to mind who could use some positive thoughts as well).

Thanks again to anyone who reads this.

Chris

Sometimes it's difficult...

Here I am again, unable to sleep, the usual culprit my back raging out...  I've gotten pretty good at figuring out how to mitigate the crazy stabbing/radiating pain that I think I wrote about last time.  This, coming from the Hodgkin's getting into my spine and eroding away at the bone as well as being in the soft tissue surrounding where nerves are present.  Needless to say, my spine is weakened in this area and has become so sensitive that I've finally discovered why the pain mostly occurred at night when I was in bed.  It has everything to do with keeping my digestive system working properly and avoiding eating late or eating heavy foods that are hard to digest like red meat.  The problem is with the actual "weight" of my stomach or bowels (gross but true I'm afraid).  So, simply, if I have a stomach or intestines that are full of food or digesting/digested food, the extra weight that adds to my organs or innerds if you will causes the pressure on some affected nerve in my middle spinal area when I'm lying flat.  I've had a lot of time to think about this and through process of elimination, have come up with theory...

So, with that figured out, and some adjustments in how I eat, I figured I hopefully wouldn't have to deal with that horrible experience for a while or -- in a dream world -- forever...

Then, on the tail end of my respite in Delray, somehow I discovered pysiattica. Not sure if that's how you spell it but the spell check doesn't even recognize it so screw it!  Anyway, I felt a twinge when I was still here in Detroit and as the days went by the twinge turned into constant pain until I was totally hunched over and barely able to walk.   I then drove all the way up here somehow, thankfully with my buddy, 1200 miles that couldn't have helped the situation.  When I got back here, I was pretty much crippled.  The pain was constant and strong, 7 mostly with 10's spiked in there if I happened to move wrong.  Conveniently, my good buddy Derek who I golf with in the summer is an ace chiropractor and after three sessions has me almost standing upright and on my way to walking without pain.  Unfortunately, the pain that runs all the way down my leg is acting up tonight and keeping me up, ugh...

Brings me to the title of this post...  I hate to sound ungrateful but sometimes (well, most of the time actually) the grind of the daily pain and other undesirable after effects from heavy treatment become too much to handle.  It's hard to stay positive all the time or even most of the time lately.  Chronic pain and fatigue will do that to you over time.  It was funny, a person that has been out of my life ever since my relapse made a comment to me in a somewhat heated conversation (over misinformation she had received regarding a trip to one of my chemo sessions gone bad) at my sisters' first rehab center.   She told me that I've really changed since I've had cancer...  Being in complete shock of the ignorance of the statement, I didn't even know what to say back in response.  I mean, how do you NOT change even just being diagnosed let alone going through treatment after treatment always feeling like crap only to find out that will continue for as long as I live (to keep me alive).  I find it increasingly difficult to cope with the daily pounding, seemingly with a new flavor every month it seems and most times dealing with a few things at the same time...

I'm sure this sounds like I'm complaining and to be honest, I guess I am.  It feels better to complain sometimes and by doing it this way, I don't have to worry about bumming out the person or people that happen to ask me lately how I'm doing.  It's kinda hard to b.s. someone when you're hunched over trying walk!

I receive comfort by thinking that this too shall pass...  The cynic in me asks though, "so what's next"?!

With all of this bitching and moaning out of my system hopefully, I can say there is one thing that makes me forget about all of my garbage and that is a visit to my sister who somehow carries on without the use of her right side, ability to speak and without the ability to control other essential functions.  You know this is true that no matter how bad you think you have it, there is always someone out there that is worse off.  When I see her and spend time with her and see how she struggles with the most basic things, I feel almost normal.  It's actually harder watching her go through what she goes through than dealing with my stuff.

I'm hoping that with spring on its way, things will get better for everybody that has been struggling like Rich and my Mom who've been Nicoles caregivers and cheerleaders like they've always been despite dealing with their pre existing conditions and the infections that this nasty flu season brought down on so many.  I also wanted to give a shout out to my friend Bekah who is having problems getting her bone marrow to cooperate after so many treatments for her Hodgkin's as well.  Hoping there is something to reverse this trend or hoping time off from treatment will allow her counts to start going back up where they need to be.

Lots of hoping in there...  Nothing wrong with hope right?

Here's to a healing spring,

Chris

Back from the Abyss

Hello everyone.  I was just notified today from someone who follows this that it's been three months since I last wrote, sorry.  It's been a whirlwind of emotions and ups and downs both mentally and physically.  I really haven't had the desire to write not to mention the tools which I'm happy to report have been upgraded to an Asus Transformer tablet and coordinating plug in keyboard which is really sweet!

Anyway, it has been a tough few months to be honest.  Watching Nicole go through what she's had to go through has been difficult to put it mildly.  I'm so unbelievably proud of her for how she's handled everything with grace and and dignity.  She is a very special person and I'm so proud to be her brother.  Progress hasn't been as rapid as we hoped but she is taking baby steps which is ok just as long as they're in the right direction.  I think the latest milestone besides her speech getting somewhat better is that I discovered on a recent visit that she is starting to get feeling back in her leg!  She still can't move it but again, we'll take baby steps going forward all day long...

As for myself, it's kinda been the same story, rollercoaster ride of sorts both mentally and physically.  It's difficult dealing with all my crap but something about watching your only sibling go through much worse is much more painful because you feel absolutely hepless.  I bring her food everytime I see her because I couldn't imagine having to eat what they give her everyday, it's not the best and sometimes not even edible.  My mom understands this and has been spending so much time with her there, taking care of her both emotionally and finacially just makes me wish the other side of her immediate family would contribute a little more in healthy groceries, healthy meals, pajamas/sweats, room decorations, plants, flowers, anything.  Not to mention, my Mom has been working on all of the stuff behind the scenes like her phone calls, going to all her appointments (which is no picnic) and had to sell and purchase a new home (which has to be outfitted for wheelchair, not cheap).  I worry how her and Rich are going to do it with my Mom still going through cancer treatment and Rich with his heart and breathing issues.  They have given up their vacations and have put Nicole first like they've always done, as far as parents go, they both are all stars in my book.

To update on my health for those of you who are interested (thanks Dorrin from Bowling Green), I've been walking a tightrope staying on this trial.  My last scan lit up in my spine but the SUV levels were low so we continued.  This was actually three months ago.  In the time since, I've been dealing with unbelievale chronic fatigue.  It's been difficult to do anything besides sleeping.  For a while there, that's all I did was see my sister and sleep.  I think I had way more energy when I was actually going through the shit (chemo) than I did recently.  Not to mention, that thing that lit up in my back was my t-9 thru t-11 vertebrae which I think are still being eroded by residual or new growing cancer cells (as my latest scan  has also shown but I don't have the official report yet).  The pain, especially at night when I try to sleep, is like being stabbed or shot (I've never been shot nor stabbed so I'm guessing), hot burning bone pain that sometimes, most times, radiates into my abdomen and almost takes my breath away (or makes it hard to breath).  I don't know if the pain is causing spasms or what but when it happens, I know I'm not sleeping that night and going to be a zombie the next day.  So, the next issue is my lack of sleep.  If you don't sleep well at night, it just seems to cause so many problems in just functioning normally, it's almost like your brain doesn't know what to do.  It's hard to think straight after one night of insomnia let alone a string of nights, ugh... 

I have taken a respite though, I'm writing this from Florida which is serving as my retreat from all of this.  I have been feeling much better over the last few days and have slept normally two nights in a row!  Also, a big problem when I'm in Michigan this winter have been nose bleeds.  My platelets have always been low on this trial but when you combine the dry freezing cold weather with that, my nose is always bleeding.  Sometimes I can't leave the house because I can't stop it.  It gets embarrasing not to mention I've been going through a lot of sheets and pillow cases.  Thankfully, it's nice and humid down here and the nosebleeds instantly dissapear! 

So, the plan is to get another week of warmth down here then it's back up north to my home.  I miss my family and my sister.  Nice thing is I have  Chili with me so she keeps me company and keeps me smiling :)

I'm in the process of working on this place down here which has come a long way since I moved in.  Last winter I did the kitchen  (basically resurfaced everything) and this winter I'm going to work on the patio.  I'll post some before and after pics (if my back holds out) as soon as I can.  My energy has been better down here too thankfully.  I've written a bunch in the past on the healing power of the sun and this is just another example :)

Thanks for reading, hope to update sooner next time ;)

Chris