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25% Upgrade

Hey all!

Patience finally won out!  During the last four months, the gap between chemo (the bad guy) and prosthetic (the good guy) slowly widened until yesterday when the good guy finally won! We brought home our new pride and joy yesterday with my new leg!  It’s heavier than I anticipated.  It’s also going to require more work from me than I anticipated.  The first steps yesterday were difficult but manageable.  Learning to walk again is going to require more time than I believed and also some serious thought about my socket, stance and gait, words that would not have entered my vernacular prior to the cancer detour.  I’ve been told that, as an amputee, the first year to 18 months is the worst with the prosthetic, with a love-hate relationship developing over time.  I’ve already experienced a small portion of that with the first few steps. Maybe I held too high expectations, but the leg does NOT fit like a glove and strangely, I was not walking normally in 20 minutes.  Huh?  After about 15 minutes of walking back and forth, aided by parallel bars, a pressure (and pain!) point had developed and intensified on my residual limb and I was ready to, wait for it…take it off!?  Really?  Luckily, our prosthetist informed us that that was normal; that it would take time for Short Round to adjust to his new home.  I knew this in my mind, but of course was hoping for an unusually optimistic outcome in my subconscious.  Fortunately, the discomfort is nowhere near the level of phantom pains; that memory is enough to get me through future somewhat painful therapy sessions.

Regardless of the minimal frustrations, owning the actual, physical device represents so much more than just another “step” in this cancer journey.  Most of you realize how long we’ve been waiting to take possession of it and the many obstacles that have continually pushed this day further down our calendar. Most of these were unknown and unpredictable: hospital stays for small, silly symptoms that slowly crept into our existence, waiting on the actual wound on Short Round to heal (a process delayed by the diminishing effects of chemo on my immune system), and of course the recent insurance issues.  Bringing the leg home was more than just a part of the journey; it was a major milestone, a piece of technology that stands for undaunted optimism against the backdrop of the cancer horrors we’ve so far endured.  I realize it’s not an idol (is it too much that I have it stored in a three-lock, retinal scan safe that releases a boulder on anyone but me who opens it?)  It’s simply a tool for my family and me to realize a bit more normality.  But every time I look at it, now taking up well-deserved space in our home, I see a future – one that is more hopeful than the previous one; one that grants me a long awaited sense of control.  The excuses for not walking are no longer outside of my sphere of influence.  Now it’s up to me and my capabilities.  I will make the daily decisions of how much to practice and learn walking again based on level of discomfort, fatigue and just whether I want to or not!  The robotic leg sitting next to me right now is just that, physically next to me, touchable, and no longer abstract.
I’ve previously mentioned the level of technology embedded in the leg which is is astounding (I mean really? It’s got Bluetooth to remotely program it!)  I admire and respect the incredible amount of research and development that Ottobock undertook to produce it.  I also cannot ever appreciate enough part of what has driven the prosthetic industry, especially in the last decade – the hundreds (maybe thousands?) of military amputees from Iraq and Afghanistan looking for a better way to own a new limb.  Ottobock and similar companies had decided that the current level of prosthetic technology was not enough and pushed the envelope to develop products such as mine which help amputees move a little quicker, sit-down a little easier and participate in what were previously more difficult activities.  Because of the sacrifices of these veterans and the dedication of the prosthetic companies, folks like me, new to the amputee world, will not have to endure many of the problems associated with older technology.  This is my humble thanks to all of those before me.
Please enjoy the pics and videos of the first few steps.  Jenn unselfishly had to work in a small room with limited phone memory to get them!  The other guy is my prosthetist, Eric.  Yesterday had quite an impact on us and today I can look at my leg, and make a decision on whether to use it.  I think I will.
Hunter
Up and about!Which is the real one?
Getting Adjusted  Getting Adjusted
 
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Hey Everyone
I do apologize for the delay in posting.  I have been waiting for some good news on the prosthetic front and kept putting off writing…etc., (I know, excuses are like {insert favorite euphemism here}, everybody has one.  We did get some good news though. First though, I’d like to again thank everyone for the continued reading of and posting on the blog. As always, it’s very encouraging knowing folks are involved.
As I’ve written previously, visits to the prosthetist have been a source of excitement and progress.  Unfortunately, they have also been just a slight source of anxiety because of some delays with insurance related issues and whether they would approve the more technologically advanced prosthetic.  So, we were thrilled when we went to the our prosthetic appointment yesterday and found out that we received full approval and we have no more hold ups!  The leg is almost ready.  I have an appointment on the 26th for the final fitting (have to wait until after chemo next week) and will be able to bring it home (sounds like a newborn.)  So prepare more leg jokes if you have them! I’m very excited.  It’s really the first concrete date we’ve had with the prosthetic since we started all this.  I’m ready to learn how to walk (fall) again!
I’m going to vent a little now.  We were introduced to a new side effect during this last round of chemo – mouth sores.  I had read about them, but like most life events, nothing really can compare to the  actual experience.  And like MRIs, I wish these on no one!  If you have ever had a mouth ulcer, just imagine five or six at one time.  And, because of the low blood count, they don’t quickly heal and stick around for a few days.  Mine rapidly became prominent throughout an afternoon and were quite painful.  My tongue and cheeks ganged up on my teeth to became mortal enemies. Anytime one of the sores was within tooth vicinity, pain was the result.  I quickly realized just how much unconscious movement a mouth is responsible for.  In order to experience the least amount of pain, I had to keep my mouth about halfway open and forming words or phrases was out of the question!  Without getting too graphic, I never realized how much the tongue and cheek are involved with 1) basic mouth maintenance (subconsciously keeping the mouth clean, which means tooth and sore consistently get cozy (ouch!), and 2) of course, eating, which…well was just not happening.  I had a milkshake for breakfast and mentally steeled myself for pretty much the same for the next few days.  Jenn picked up some Ensure for me and I begrudgingly watched “Diners, Drive-Ins and Dives”, mouth halfway open.  Jenn wanted to call the doctor to see if there was anything they could do to help, but I was against it.  My mind believed it was just something cancer patients had to endure.  Luckily, Jenn insisted.  So I reluctantly agreed and sent my oncologist an email, just knowing that I was going to be laughing stock of her office that day.  I was expecting the answer “just lay around with your mouth half open until your blood count increases and they’ll heal.”  I was surprised when we received a prescription for something called “Magic Mouthwash,” a concoction (apparently there is more than one mixture) of Benadryl, Maalox, and Lidocaine.  Jenn picked it up for me, and I used it that night before dinner, not believing in the magic.  Needless to say, and as usual, I was wrong.  It worked like a charm!  It first graciously numbed my entire mouth, tongue and lips.  I initially thought that it was going to affect my taste.  But after waiting 15-20 minutes, the dosage wore enough to allow the taste to come through.  Eating slowly, not feeling the sores, really was magic.  I believe.  I truly believe.  It wasn’t DDD, but that night’s dinner came close.
And of course, Jenn’s insistence that we at least ask the question to my doctor led to the solution.  Throughout this experience, I have been reluctant to communicate my side effects to the doctor.  I’m sure there is a psychological explanation, but I have this belief that enduring the side effects is a part of the experience and contacting the doctor about small symptoms is a burden.  I am generally a positive person the downside being that I tend to mentally downplay issues and minimize symptoms until, in my mind, they are not caused by my cancer and I don’t need to contact anyone about them.  I am extremely lucky that I am married to Jenn. Her persistence has overcome my stubbornness to act on symptoms more often than not and she will not allow any of them to go unaddressed.  She knows me too well; well enough to know that I will procrastinate (probably because of denial on some level; that and possibility of ending up back in the hospital) if I need to email the doctor for a new symptom.  Jenn will quickly take over and get a proper email written, and usually easily solve the problem.  I’m happy to say that this is one of the lessons I’m taking from this – to become more aware (more mindful!) of my own symptoms and to not ignore them or diminish the severity of them.  With cancer, or, in general just well being, it is too important.  A little embarrassment with the doctor is well worth the possible early detection of something serious.
Chemo week coming up this week – Tuesday through Thursday then scans 3 weeks later.  Thanks again everyone for reading!  Talk to you soon!
Hunter

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Good news from CT scan

Hello all

Quick update for the latest chemo round.  We got really good news on Tuesday. I had a CT scan of my lungs which showed tumor shrinkage!  Jenn and I had been expecting that, but of course were anxious for this news for a while.  Basically it means the chemo is working and we will continue with the current protocol until the tumors stop responding.  So it’s two more 3 day rounds of chemo for me which started Tuesday.  After this round, wait 3 weeks then another.  3 more weeks then another CT scan to see how it’s all working.  Our oncologist was pleased with the results, which is really encouraging.

So now, I’m getting my last day of chemo for the week and will wait out the usual post chemo blues in bed over the weekend.  This round so far has been much less taxing than the last couple – mostly due to less leg pain and no more double vision.

Next week we have our next prosthetic appointment which hopefully will also be full of progress.  I’ll write more after that.

Please keep the prayers and thoughts coming.  They are always appreciated.  Have a good weekend!

Hunter

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Cabin Fever!

Hello all

There has been a little news since last week’s post.  Two significant events have transpired over the last few weeks: 1) my double vision has continually improved to where I think I’m back to normal and 2) the phantom pains in Short Round have diminished to pretty much nil too.  Now that the double vision has subsided (it lasted for about six weeks), I am fully realizing the impact that it was having on my daily routine.  I couldn’t focus on conversations with people without thinking about which head I was seeing.  It affected my balance too and I couldn’t scoot around the house on crutches very easily.  When my oncologist realized how bad it was, she ordered an MRI of my brain to ensure that particular organ was clear of any tumors (synovial sarcomas rarely spread to the brain).  Many of you know my feelings on MRIs – can’t get enough of ‘em!!!  This one was scheduled for Friday, January 11th…at 6:30 AM!  So we took the boys in, scanned my brain, had breakfast, dropped Ben back at school and enjoyed the rest of our day.  The doctor called that Friday night to tell us that my brain was clear of any tumors (whoo hoo!), but that a tumor was found on part of my skull bone, near some optic nerve bundles.  She said the tumor itself was not concerning, but that it could be pressing on the nerves and ultimately causing the double vision. Unfortunately, like most of them so far, the MRI was not complete enough to make that determination.  It was like someone had taken a family photo, but had cut off Grandad on the side!  What then?  Another brain MRI!  This one was scheduled for last Friday (18th) at 7:00 AM.  Nothing can ever be easy!  But I will say that, in my limited MRI experience, brain MRIs are much more tolerable than leg ones.  My head was the only part of my body inside the machine, and just mentally knowing I could move my legs if needed was enough to keep me still for an hour.  I do feel for folks who are claustrophobic though.  Not a pleasant experience.

Throughout all this, as I mentioned, my vision improved drastically.  I believe it was the chemo working and reducing the skull tumor, which is positive news.  My doctor called us today with the results of the second MRI and once I informed her how drastically my vision improved, she agreed with me.  The second MRI showed the skull tumor near the nerves, but they were not pressing on them. The next steps for the vision problems are to just monitor and if it gets worse, radiation is a possibility.  Luckily, she said that radiation treatment to this part of the skull is pretty routine.  I’m just glad now I can see that I have two children instead of four.

She also told us that if my lung lesions have stabilized or shrunk based on the results of my next CT scan (January 26th), we will have at least 2 more chemo rounds.  That’s good news too.  It’s aggressive and now that my vision is improved and Short Round is cooperating, chemo shouldn’t be too bad now.  We know what to expect and it gives us a good timeline for the next couple of months.  If for some reason, the tumors have grown (which based on my improving symptoms over the past couple of months, I don’t think has occurred; but I don’t want to jinx anything by keeping it a secret!), we will discuss other treatments.

Having the chemo treatments over the holidays, winter weather, and just giving my leg time to heal has really given me a case of cabin fever.  So the last week, given how good I’ve been feeling after the last chemo round, Jenn and I have gotten out of the house on a couple of occasions.  We had lunch last week at Red Robin and I thoroughly enjoyed their Burnin’ Love burger, which surprisingly lit my tongue on fire!  And yesterday we had lunch with my lab at Mellow Mushroom.  Chemo and lying around waiting for an amputation to heal has made me really appreciate eating good food more and more.  I’m always hungry lately (probably because of the steroids I’m on; watch out Lance!) and most foods that were once just okay, now seem to come alive in my mouth and do a dance of delight!  I’ve never been interested in food television shows, but I can’t seem to get enough of Diners, Drive-In’s, and Dives lately.  I want to eat everything on that show!  We also did some shopping at Sam’s Club with Jack and, yes, I rode in the old people’s handicap cart!  It was fun.  It goes surprisingly fast and has a turn radius that puts any performance car to shame.  It’s been really good to get back into the world after a couple of months away – something that I will appreciate just a little more now.

As always, thanks for reading.  I realize the posts are getting less and less medically dramatic, which is good for us!  Hopefully, we will continue this path and I can write more about eating and prosthetics!

Hunter

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Notebooks and UFOs

Hi all
After my last post, I was struck by the resolve that my children are showing through all this and wanted to write a little more.  The chemo sometimes makes my head spin and even just turning my neck in bed makes me dizzy.  And it (and certainly some of the other drugs I’m taking) also makes me emotionally unstable.  Whatever.  All I know is sometimes I’ll be sitting just watching TV and I’ll just have an emotional low.  It’s like sitting in the ocean and being surprised when waves crash over your head.  You know they are there, and are headed your way, but for some reason, it’s still unexpected.  And that’s not me.  Most folks who know me know I’m pretty stable. Monday was interesting though and after some reflection, I thought I should be mindful of what was happening and share it.  It was raining outside, very heavily.  I was watching television in bed while the rest of the family was doing other things in other areas of the house; nothing out of the ordinary lately.  All of a sudden, I felt an emotional low starting to loom over me; a slow moving wave with a high crest that I could almost physically observe out of the dreary window.  Most of the time, I can just deal with it, recognize it for a low caused by medicine and fatigue and distract myself with the internet, books or anything else and it will pass.  But this time, even though my family was home, I realized I just needed someone close to me – a family member within an arm’s length.  Jenn was watching Jack and Ben was in his room. I asked Ben to come in and keep me company.  I had been in bed a long time and with the rain, and the drugs, compounded with the looming wave, I needed my son.  And without complaint, he came.  He sat in bed with me, just being with me.  At that moment, he didn’t understand how much I needed him but that did not matter.  He certainly doesn’t understand the full ramifications of what may happen with this cancer, but right now, he doesn’t have to.  I imagine he does understand at some basic level that his daddy needs him right now as much as he needs his daddy.  And that is enough.  I hope that is one of the positive lessons he takes away from this.  That cheering up a really sick dad, while it shouldn’t be a part of any 6 year old’s life, is the reality right now.  And he’s good at it.  He’s empathetic, considerate, cheerful, and kind and I am so proud of him.  He has been busy making crafts for me including a UFO with alien.  And he’s made me a personal notebook with his own paper that I can draw or write in with crayons and pencils attached by a Ziploc bag.  When he brings me something he has created, I can see the pride in his eyes that indicates how much thought he has put into his version of what will make dad a little happier.  Seeing that look warms my heart. He keeps me company through this and I will be forever appreciative.  I look at him, and Jack and Jenn and can’t help but be overwhelmed with their presence through this.  I watch them play; I smile and laugh with them, then realize how much this disease is affecting me as I lose my bearings because I’m dizzy or tired.  But they keep me company, and sit in bed with me and keep the house alive with child’s laughter and innocence. And that gives me strength, courage, and motivation to keep going and not give up.  This is hard, but the boys are making it just a little easier.  And we are so fortunate to have that support system within an arm’s reach.

My latest prosthetic appointment was yesterday.  Lately, we have been in kind of a stagnant mode regarding the prosthetic.  Through all this, my being autonomously mobile is the one area that gives us tangible hope and a sense of progress so getting back on track has been at the forefront of our minds.  I had been waiting for a small part of my incision to completely close until I could get fitted for my silicon liner.  The chemo had been slowing that process.  We had last seen our awesome prosthetist prior to Christmas and he wanted to wait longer to fit me for the liner until the incision had more time to heal.  By yesterday, the incision, while significantly much better than our first visit, still had not completely closed.  There was (still is) a minute amount of drainage.  So before the visit, we were anxious that we would have to wait even longer for prosthetic progress to continue.  To add to the uneasiness, we had had to shift our appointment once already and certainly did not want to continue just showing up and having the prosthetist tell us to keep coming back!  We drove to our appointment (30 min drive to Nashville) and waited for our prosthetist.  Once he came in, I rehashed what our last appointment had been, and he began the examination of my wound.  He looked, pushed, squeezed, rubbed, and worked Short Round.  Much to my chagrin, a small amount of discharge appeared in the one messy spot…grrr… Fortunately, it wasn’t enough to warrant another visit.  He was satisfied that it was a small amount and he would go ahead and fit me for my liner!  In my head I was doing backflips!  So he went and got the silicon liner, cut it to fit, and proceeded to work it onto Short Round.  There was a little bit of pain, but I was welcoming of it!  Once it was on, he had me stand and he wrapped a fiberglass cast around the liner, which will be used to cast the actual socket…more signs of mobile progress!  I’ll wear the liner for two weeks and we’ll go back to get the socket fitted.  That visit may also include attachment of the actual leg portion. To top off the exciting visit, I held the actual leg in my hand (see photos) – a small measure of forward motion!  We are just ecstatic to get things stepping out on the leg front!

Using suction, the liner holds the socket in place once the leg is attached. The white rings at the bottom help create a more secure fit for the socket.

We're 99% sure we are getting the Genium over the C-Leg.  Until it's affixed to me, I'm not going to jinx it!

We’re 99% sure we are getting the Genium over the C-Leg. Until it’s affixed to me, I’m not going to jinx it!

As always, thanks for reading everyone!  Your post responses continue to inspire and encourage us.  They are consistently a part of our daily conversations.  Please continue keeping us in your prayers and thoughts.  Until the next update, talk to you later!
Hunter

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Sunday Short

Hello all

Just a quick update after this week’s chemo. Last time I was sick on the second day. Fortunately, it didn’t happen this go around. Still the same fatigue and lethargy as usual, but if any nausea can be avoided, I’ll take all the others annoyances. We’ll get a CT scan in 3 weeks to see how the treatment is working.

Now I’m sitting with Ben, letting the toxic drugs do their magic. Yesterday (Saturday after treatment) seemed like the worst day last time and that still rings true. The taste in my mouth was horribe and it’s finally dissapated. Every action requires an invested effort and is extremely tiring. I’m pretty much reading and just enjoying being around the family as much as possible. I have energy laying in bed, but when something requires my attention, I can really feel it. Jenn is tirelessly and graciously waiting on me, hopefully for the last time! We are looking forward to Downton Abbey tonight.  I hope everyone is doing well.

More to follow after next week’s appointments. Thanks for reading!

Hunter

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Feeling Good Today

Hello all

I wanted to update the blog prior to the next round of chemo.  I am feeling much better after the last post.  I am on the upswing of the last round, and more importantly, my phantom leg pains are significantly diminishing.  Not to put a jinx on anything, but I think I’m on the downslope for those.  Going through the next round of chemo without having to deal with the leg pain would be very nice indeed.  Jenn mentioned in one update that I have had double vision problems which I’m still dealing with at the moment.  That has persisted for at least 3 weeks and has been very tiresome to say the least.  Originally, compared to the other issues we’ve been against, a small amount of double vision seemed insignificant.  But when it did not go away, I realized how much it was affecting – my balance for the most part.  I have been puttering around the house on my walker/hopper for the last month, but would have been able to use my crutches (much faster and quieter!) had I had a good sense of balance.  I also cannot focus when I speak to anyone, which makes traditional conversation difficult.  Ask anyone who I’ve spoken to in the last month – I’m pretty much crossed eyed!  This is what Jenn thinks she sees when we talk:

My docs are adjusting some of my meds that may be contributing.  Just another example of how cancer attempts to needle with the “small” stuff while battling the big.

After chemo rounds, there are a few days when low white blood cell counts do not allow for much human contact or closeness due to risk of infection.  Our bedroom is pretty much isolated from the rest of the house and we have a “biohazard” line that the kids can’t cross!  I feel like the bubble boy on Seinfeld.  It’s pretty much lay in bed all day, feeling sorry for myself being waited on hand and foot (ha ha) by Jenn.  Once I start feeling better though, I can reconnect with my family and be a dad.  Such was the case this morning.  Jenn was resting (much needed lately for her!) and Jack needed a diaper change, which I hadn’t done since the biopsy in October.  I was able to successfully change him without Jenn having to get up from her nap.  I realized that I actually missed changing him which I never thought I would.  Ask me again tomorrow and I may have a different answer!

At home, things have been quiet.  My family left last Saturday after helping out over the holidays.  Ben went back to school this week and related to the above story, Jack has been successfully potty training (whoo hoo)!  With my vision problems, he’s better at hitting his target than me!  Next week is another long one though. Having cancer is like a full time job.  Monday morning starts with a physical therapy appointment, and then in the afternoon, we see the prosthetist who will hopefully assess Short Round for a socket fitting.  Tuesday through Thursday is the same chemo schedule as in December – 6 to 8 hour infusions each day.  While not looking forward to it, at least we know what unpleasantness to expect this time around!  Not sure what happens after this round – I think we’ll do another CT scan 3 weeks after to determine effectiveness, but my doc may decide on another round.

Overall, not just now, I feel good.  The chemo knocks me down, but (again not to jinx anything) I feel like it is working and that keeps me going.  And, while not always successful, I try to keep in mind what many cancer patients have been through before me, significantly more rounds of chemo, surgery and then radiation to boot; I feel like I don’t have a leg to stand on (ha ha, again!). My symptoms seem to be diminishing.  My lungs feel good and I haven’t had any more issues with my right leg.  I’m hopeful that the treatments are working and we can either continue them, or finish this for a while.  Once I’m more mobile (read, new leg!) I’m anxious to get back into the lab and get back to work.  I miss being around science and working on my research.  I miss thinking about how my data is contributing to the bigger picture.

I hope everyone had a good rest of their holiday and is enjoying their new year.

Hunter

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