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

Learning how to cope...

Hello Everyone,

I've been meaning to post but just haven't been able to come up with the words... To put it mildly, the last few weeks have been rough. Nicole finally got over her pneumonia and is in her own brand new suite at RIM (rehabilitation institute of Michigan). She's right handed and unfortunately, that's the side that has been affected. So, not only is she paralyzed on that side (including her vision), she suffering from Apraxia and Aphasia which makes it really tough for her to speak. She had a subcortical stroke and there is a chance she can recover... Thankfully, she has some wonderful people working with her with the hope that she may regain some of her functions. Nobody is able to predict how much she'll be able to get back. That said, we've all been there to root her on. As you can imagine, she's majorly disappointed and needs encouragement and support.

I've been trying to put myself in her shoes and with everything I've been through, nothing compares to what she's having to deal with. I lost the use of my hands, feet and most of my strength with Guillaine Barre so I had a taste of what it'd be like but I was still able to take care of myself mostly. With her situation right now though, she is totally dependant on the rehab staff and us for everything. When I say everything, I mean everything and it breaks my heart.

Through all of this though, she still manages to smile and laugh, quite an amazing woman I must say. There ought to be a picture of her face when you look up courage in the dictionary. The biggest tragedy is that she decided to undergo this surgery with the hope of a better life after her epilepsy got so bad. She had dreams of driving again, building up her social life, maybe even working again...

My hope now is to watch her walk out of RIM and we'll see what happens from there. She's already made some important incremental "steps" in different facets of her recovery and we're all looking forward to celebrating with her as she continues down the long road to recovery.

Other than trying to keep my disease at bay, her getting better is my main focus in life right now.

I also wanted to honor my friend Marsha Privalsky who tragically passed away recently. We were diagnosed with Hodgkins right around the same time and would root each other on as we went through a very similar treatment timeline. She was quite the fighter and a major inspiration to me as I went through all of my crap. Condolences to Bob and her family. She will be missed by many.

I will try and update as time allows (and my computer holds on as it's on life support rt now).

Thanks for reading as always.

Chris

Sad News

It took me a day to get the strength to post this news but here goes... My sister Nicole, during her major surgery, has had a stroke. This explains why she cant move her right side, head to toe. Needless to say, we are all devastated. This procedure was supposed to give her a better life, a chance to get back out into the world without the fear of having a seizure, perhaps even a chance to drive.

If I would've wrote this yesterday, I think it would have come across very angry because that's what I was -- angry -- angry and sad. She has been through so much and was so excited about this procedure it just breaks my heart...

So, going forward (which we have no choice and very good practice), she has a long road back. They're going to start right away with physical and speech therapy, most likely on her floor in ICU as she's still pretty out of it (as of last night). Once she's alert and able, they'll be transferring her PT to a program within the DMC called R.I.M. which is a very aggressive and many times successful physical therapy program for stroke victims and the like. I'm hoping and praying that she has the strength and will to go at this with all she has. Knowing how tough she is and her will to make her life better, she'll do the best she can.

I don't want to get into the reason why she had the stroke because quite frankly, I don't know if any of us will ever know for sure. I remember Dr. Mittal mentioning how hard he had to scrape the old scar tissue from her brain and wonder if he might have scraped a little too hard, rupturing one of her blood vessels. In any event, it is what it is and there's not a whole lot we can do now except hope for another miracle (it's actually a miracle Nicole is alive in the first place if you've read any of my previous posts).

While I'm crying on the inside, I'm going to make sure to stay strong on the outside for her and do my best to be there for her (along with my family) all along the way. I feel better than I have in a long time at this moment and plan to use my newfound strength to help my sister and to continue to try and enjoy my life. Florida may get delayed and even shortened this year depending on circumstances but I'm not thinking about that now. My dream would be to be able to take her down with me for some sun therapy but that's a ways off right now.

Any good vibes and prayers would be welcome for my family. They've been working for Rich as he's seemingly been doing better and my Mom is on her last chemo regimen of Herceptin for only a couple more months I think.

This will be another major test as if we really needed another one...

Thanks for reading,

Chris

Brave Warrior

Well, it's been a while since I've posted but wanted to talk about my sister Nicole and what she's going through as a way to keep everyone updated and to release some of the anxiety built up watching her go through what she's going through. Brave Warrior are two words that instantly came to me as I got ready to start writing this and that she is. I've mentioned this before but Nicole was the first one in our family to fight (and beat) cancer. She survived a Glioma that gave her a 10% chance to live more than two years. This is over 20 years ago...

Since then, she's had to deal with the buildup of scar tissue where the finger like malignancy existed and once threatened her life. This buildup has caused her to become epileptic, unable to control seizures on her own and having to be on debilitating medications to keep them at bay. This has resulted in significant loss in quality of life for her, stripping her ability to maintain a "normal" existence. She's been unable to work, drive, maintain a social life, etc..., enough to break you heart.

She tried this procedure 12 or so years ago when the seizures became unbearable, even with medication. The result wasn't as good as we wanted with the surgeon taking out portions of her brain responsible for her short term memory and thus greatly affecting her speech as she has trouble remembering words (imagine trying to talk if you can't remember any words, not easy...). It also greatly reduced her cognitive ability to comprehend multi dimensional concepts, you get the idea.

One thing that surgery didn't take away was her kind, sweet and sometimes silly disposition. You can see in the picture above (which I'm sure she's going to kill me over ;) that despite having wires coming out of her brain and her arms being bruised like she was in a street fight, she still has a great attitude and spirit. She's been through so much that she's taking all of this in stride (to the best of her ability) and is determined to get some of her life back...

This brings us back to the procedure she's having now. It's very similar to the one she had 12+ years ago with one major difference; the team she has working on her now is top notch. I can feel comfortable saying this because I've had a chance to talk to her neurologist and surgeon a few times now and not only are they supremely qualified but they are wonderful people to boot. Dr. Basha, her neurologist, (who she was referred to by my neurologist at the DMC) seems like an old friend. You can tell when a doctor really cares and when they're just going through the motions. I say this from experience. Not to mention, her surgeon, Dr. Mittal, is an extremely busy high in demand guy but still takes the time to come down to see how she's doing and isn't in any rush when we talk to him and ask him questions, no matter how redundant they might be. I really feel like she's in good hands.

So, the hope is once she has the procedure which entails brain mapping (placing a grid on her brain to measure seizure activity and where it's coming from) then going in to remove these portions of scar tissue that have built up since her last procedure, she might be able to get a lot of her life back. The portions of her brain that were removed last time cannot be replaced and she'll always have trouble speaking fluidly. That said, we're all hoping the positive result will be greatly reduced seizures which may allow her to drive again and get back out into the world (with more confidence).

It's not always the cancer treatment that's the most difficult part, it's what comes in the aftermath after you body has been beaten to a pulp. Most people look at it like "well, your cleared of cancer, life is good"! While this is true, rarely is it as good as it used to be. I know from my case for this to be true (you just make adjustments). While I'm enjoying being relatively cancer free for the moment, I still deal with chronic back pain, permanent neuropathy in my feet, chronic fatigue from all of the treatment and the meds I have to take on a daily basis. These are only the physical aspects... Dealing with these things on a daily basis not to mention the uncertainty of you future takes a major toll on you mentally. This procedure Nicole is having is like another battle scar if you will. Hopefully it will soon be over but surely not forgotten.

I'm just hoping that going forward, this current battle she's fighting will go a long way towards her finding an inner peace that sometimes becomes elusive when your a survivor.

Thanks for reading and I hope to have a good update after the major surgery is over, possibly next week.

Chris