It's Not a Sprint

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

Hi all

Christmas – this week has been very educational in terms of my emotional capabilities to process this tribulation.  From a purely scientific viewpoint, it is difficult to measure the emotional toll that chemotherapy personally exacts on me– too many variables that maybe someone with more credentials could quantify, but not me.  Lack of sleep, when does the chemo start affecting emotional aspects of living, how much do low blood counts contribute to emotional states – these are just a few that occupy my mind.  But today, I’m having difficulty processing the emotional lows that have been accompanying chemotherapy.  Coupled with a bit of disrupted sleep, I wanted to get it on record as one of the low points for me.  After all, this blog is intended for both high and low points of this whole struggle.

After receiving the initial diagnosis, I knew my sense of humor would give me a strong defense against many of the setbacks I would be facing – that and a strong support system both at home, and now through this blog that has helped in unimaginable ways.  However, I also knew that there would be low points too, and now having been through a couple of those, I want to ensure that they are documented as well – not to garner well wishes (although still welcome), but from a mindfulness standpoint, to just objectively identify them, and have everyone reading understand that they pretty much suck too!  This week is a shining example the highs and lows that have been quickly realized along the emotional spectrum that has accompanied chemotherapy.

I caveat the rest of this with the warning my doctor has continually given me; for the most part, the schedule outlined below is what most chemo patients experience.  I understand the impending side effects, which is fine, but I write this to document and portray my personal physical and emotional experiences and how they fit into the “side effects schedule.”  I received my last of the three day chemo treatment last Thursday, Dec 20^th.  I felt lousy on Thursday, really lousy on Friday and Saturday, and then took a little upswing on Sunday.  Lousy can be identified for me as not wanting to get out of bed – no fever, just lethargic and apathetic and not knowing what foods may agree that day.  After chemo treatments, my mind is constantly occupied by what foods will stay down.  The anti-nausea meds are terrific, but need to be taken at specific times, and then slowly eat to see if they are working.  Eating slowly is one of the more difficult tasks I’ve had to master.  Emotionally though, I felt pretty stable.  Monday, I felt good enough to get out of bed, and sit with family in the living room most of the day.  The boys were of course excited about Christmas and I wanted to be around them and was able to be, although I was still a little skittish about Christmas Day.  My energy reserves only can take so much stimulation and I didn’t know if being up most of Christmas Eve would wipe me out for Christmas Day.  Luckily, the reserves held and Christmas Day was magical.  I surprised myself by sitting with the boys during gift handout, and even having the ability to assemble some of their presents, usually a chore, but this year I thoroughly enjoyed it.  I didn’t realize how much I have missed being a dad these last few months, but that morning I was capable of it and it turned out wonderful with memories that will last a lifetime and a two day emotional high that may or may not border mania!

Wednesday, I had a physical therapy appointment and felt good.  During the therapy, I can gauge my stamina by how quickly I become short of breath during walker/hopper “laps” around the house.  I can usually make it 10 minutes with little effort and I was able to complete the session with relatively little shortness of breath.  The chemo had not yet begun its physical and emotional grip on me.  My sister and her daughters drove up from Georgia and again, I was able to visit with family without feeling a huge energy loss.  Thursday though, I woke feeling physically drained.  I had an appointment to see how my blood count was progressing, and the physical symptoms were explained by a low white blood cell count, again, right on schedule.  Today (Friday), I felt even worse, exacerbated by a disrupted night’s sleep.  I had another physical therapy appointment, and could barely make it 2 minutes before quickly feeling short of breath – a marked difference from Wednesday.

I write this to convey my experience with the physical and subsequent emotional low that followed today’s physical therapy appointment.  As a person who has lived with a relatively normal human capacity to control my emotions, I was incapable this morning.  I felt a wave of sadness crash on me as I weaved together the week’s (as well as the past months’) events and realized how much of an impact they have had in my life.  Right or wrong, I know I have resisted the urge to allow sad feelings to occupy my mind throughout this, but at that moment, with Jenn’s help and support, I was able to unlock the sadness floodgates for a few moments and have a healthy cry with Jenn.  I cried for my missing leg.  I cried because I can’t make it to the bathroom without feeling like I’m going to lose my lungs.  I cried because this isn’t fair.  I cried because this is all just bullshit.  I cried for all the reasons that are out of my control, those things I’m normally supposed to accept.  Jenn helped me realize that the majority of the time, I am able to maintain my resolve against those events outside my control, but that in order to stay sane, I need to allow myself selfish cry times too.  So I did, and it was wonderfully therapeutic.  I cried to just cry – usually an easy concept to accept, but more difficult when wrapped up in the turmoil that my cancer has caused.

So this post is just to allow myself another low moment, another moment that, eventually, will lead to more resolve.  I have another round of 3 day chemo starting the second week of January, and will expect this again.  We can add it to the “schedule.” Thanks for reading and have a Happy New Year!

Hunter

(click on the above image to view larger)

(*if you’re reading this post through your email, you may want to click through to the actual blog, otherwise you probably won’t see any of the photos*)

Hunter had a really long week with 3 straight days of chemo (Tuesday – Thursday), each of which we were at the hospital from 6-10 hours depending on the day. He’s been experiencing persistent double vision since last weekend, which is why he was unable to post an update this past week. Guess it’s kind of hard to type when you can’t focus on what you’re writing! This is believed to be due to one of the medications he’s been taking for the nerve pain in his amputated leg, which also seems to help keep the phantom pains to a minimum. We were able to get this switched to a similar medication yesterday, so keeping our fingers crossed his vision will clear soon and we can knock another unfortunate side effect off of the list!

Towards the end of the most recent hospital stay, Hunter’s hair began to fall out. We knew this was coming, but I guess it was alarming to see how quickly it happened. Since he was hooked up to so many monitoring devices due to the chest tube in his lung, he was unable to shower, but we knew that once he was home and able to, he was going to lose a lot of it. Our 6 yr. old, Bennett, immediately noticed that he’d lost some hair when he first got home last Thursday. Here’s a pic of the boys having fun pulling out handfuls of hair:

and after his shower last Friday:

Saturday: (totally weird fact – almost all of his dark brown hair fell out, but those stubborn grays remained! Nice to get a preview of how he’ll look in about 20 years! 🙂 )

and after we decided to shave the rest on Sunday:

Have to say – I’m digging the bald head! Once we shaved it, he was back to his handsome, young self 🙂 Our youngest, Jackson, came in just as we were finished shaving and just giggled. We asked Ben what he thought of Daddy’s bald head and he said “Huh. It’ll take a few days to get used to it”.  Seems he’s used to it now. It’s really nice to not have to clean up clumps of hair, and Hunter really appreciates not having clumps of hair fall into his breakfast anymore. too.

This week’s round of chemo was pretty rough on Hunter. Tuesday’s treatment was fine, although an extremely long day. Wednesday morning he woke up at 5:30am completely nauseous and throwing up. He couldn’t keep any of the anti-nausea meds down, and wasn’t really starting to feel better until we were at the hospital for his chemo treatment and they could give him IV meds. Thursday he was pretty tired, but at least had a better appetite. He’s been resting most of the weekend, but seems to be starting to have a bit more energy. We’re really hoping he’ll feel well enough to join us for the festivities on Christmas Day. His parents have been here since last Sunday, and are staying until next weekend. His sister and nieces are arriving the day after Christmas, so we’re due to have a houseful pretty soon.

On a totally separate note – I’m thrilled to have gotten my canvas order! We had professional photos taken just days before his amputation surgery, and I had 3 of them printed on 16 x 20 canvases. As soon as I can get him out of bed long enough, these will be hung on the wall over it.

We also got a super cool hat representing Hunter’s “taking the bull by the horns” attitude from my Dad and Stepmom. I think he looks rather fetching!

and for a few sweet closing pictures – the first is of Ben’s 1st Grade Agenda that he brings home every day from school. This is where he marks what color he earned for his behavior each day (Green is great – Purple is even better 🙂 ). This particular day he noted that he’d earned a purple for his dad (awwww…. )

and the last – Ben helping put his little brother to bed. They like to lie down next to each other and “talk about their day”.  It’s so endearing to see how close they are, and watch how they interact now. Too sweet!

If you made it this far, thank you for bearing with all of my photos. Hunter hopes to posting his own updates again soon. It’s hard to believe there’s only 1 more day until Christmas! This holiday season is certainly much different for us than previous years, but we’re making the most of it. Looking forward to Christmas morning with our boys, and are really excited that Gran and Grandad get to share in their excitement, too. Ben helped me bake some cookies today so we won’t have to leave plain old store bought ones out for Santa tomorrow night (although he’s certainly not getting the yummy ones stuffed with peanut butter cups either! LOL), and we’re really looking forward to hearing the pitter-patter of little feet around 5am on Christmas morning letting us know that it’s wake up time.

Happy Holidays!

Hello all

I write this with a heavy heart as today, 20 children and 6 adults were senselessly shot and killed at an elementary school in Connecticut.  I’m terribly saddened and reminded that I am fortunate to spend time with my own children.  I cry for those families and victims and also hug my own children just a little longer today.

I’m am back home writing this.  It has been a long week with the most difficult aspect being immobile from just lying in bed.  To continue the update that Jenn began, I was admitted on Friday, Dec 7th after the chest x-ray showed two small holes, one on each lung.  The normal fix for holes in the lungs is a chest tube, which re-inflates the collapsed lung.  But, since the holes were small, my docs did not want to push forward with the trauma of a tube, and wanted to determine if the holes would close without assistance.  I would only need an oxygen tube around my nose to allow better breathing.  Easy right?  I didn’t need an IV and I could just lay in bed with my computer with oxygen pumping in my nose, with Jenn by my side?  Compared to the last ER visit we had, that would be living the dream!  I had seen the oxygen tubes on television and movies and they looked pretty harmless.  But there is always something.  I didn’t realize how immobilized I would be.  During the last hospitalization, I was able to take walks around the ward with my walker/hopper or crutches – maybe once or twice a day.  I could get up and use the bathroom without much assistance.  But this time, being tethered to the wall, it wasn’t as easy and I was reminded of how cancer is slowly robbing my autonomy.  I was also in the ICU for a few days, which involves a series of more wires and monitors that discourages movement.  All this came to fruition in one of the few instances I did get out of bed.  I stood and felt a pain in my calf.  I had pulled a calf muscle and realized that I couldn’t bear most of my weight on it.  Prior to that injury, I had good mobility and agility with my leg and didn’t realize just how much I had stayed off of it that weekend.  I managed to hobble where I needed to and get back to bed.  But it got me thinking began to think about my leg, and just how important it is.  The muscle is still healing, but I find myself being overly cautious and hypersensitive to anything that might cause it harm.  Unfortunately, that breeds a little fear into my daily routine.  I realize fear is a part of this process; a part of the journey.  It is real and will not dissipate unless I face it.  Meditation has taught me that living in the moment, embracing whatever situation is present now, including those that are fearful, allows me to not dread fear.  Once the fear of a pulled calf muscle settles over me, I am able to mentally disassemble it, label the individual parts and diminish it, but not destroy it.  So far in this relatively short cancer journey, going into any daunting situation, I have learned that fear will not completely go away but that is okay.  That is the subtle superiority of controlling fear.  It is empowering to know that I can weaken what fear may arise, and at the same time not have to worry about the burden to completely eradicate it.  Fear will always be a part of this, but I have the upper hand because I understand it will not overwhelm me completely.  So now I sit with my muscle still healing, still tight, but knowing that it will heal, my balance and coordination will improve, and I will again move forward with the agility I had pre-injury.

The docs decided on Sunday morning to insert the chest tube after a series of chest x-rays showed the holes were not closing freely.  Luckily only the hole on my left side warranted a tube.  Unfortunately, they couldn’t get a team together to get it done Sunday.  So I waited until Monday and finally (after not eating or drinking for 14 hours; I get grumpy after 4 hours without chow…grrr), I had the tube inserted.  If anyone has had the pleasure, it’s of course not too comfortable.  I had a local sedation and the tube was inserted under a CT scanner to provide accurate guidance.  The local worked well, until the tube hit the pleura, which is the membrane surrounding the lung.  I gaped at the surgeon, who decided then to tell me that the local wouldn’t reach that delicate area.  These docs and their wording…it’s been so interesting to observe how one team will not tell you something is going to hurt, but another will.  My orthopedic oncologist has been nothing but straightforward with me from the start – yes, you have malignant cancer, yes, we are going to amputate your leg; yes there will be a lot of pain.  I liked knowing what to expect from her.  But the lung team wasn’t so direct -this may hurt a bit and the tube won’t be too noticeable afterward.  Yeah right!  Wow!  That was crazy.  I could feel the sensation around my entire lung.  It was painful but also bizarre.  Once the tube was in, the pain subsided to just the usual I-have-a-tube-pulling-on-my-lungs feeling.  Some discomfort but tolerable lying in bed and yet again, another tether.  And I finally got to use the bathroom with a chest tube in – one more item off the bucket list. Talk about a rite of passage!  I used a walker to get from my bed to the bathroom and pushing myself up on the walker utilized every muscle that surrounded that tube and my body did not want it in there.  And let’s just say that pushing while seated on the throne went against every desire in my body at that time too.  But I knew I had to do it.  I wanted to quit, but I’m proud to say I did it – a small but necessary accomplishment.  Take that cancer!  I used the bathroom!

The tube pain subsided over about 12 hours and leveled to the tolerable stage.  I was moved out of the ICU on Tuesday of this week and into a regular room – less monitoring!  The plan was to continue the chest x-rays to ensure the lung stayed inflated, remove the tube on Wednesday, more x-rays, and possibly go home Wednesday.  Jenn and I have quickly learned to add a day to any time table the docs give us.  They removed the tube on Wednesday and we ended up coming home Thursday afternoon.  Lots and lots of waiting – and I thought the Army was bad!

So now I’m home and resting. My lungs feel fine and now I’m back to focusing on desensitizing Short Round for the prosthesis.  Next week is going to be very busy.  One of the upsides of this last week was that my oncologist decided that, based on my reaction to the first round of chemo, I could tolerate a more aggressive round earlier rather than wait.  The last round was just one drug (Adriamycin) and took 4 hours including getting blood labs and the actual infusion.  With this next round, which begins Tuesday, we will be going in every day for 4 days.  The first three days will be around 6-8 hours each with labs and infusions.  In addition to the Adriamycin, I’ll be receiving Ifosfamide.  Then, I’ll go in Friday for an additional immune booster.  So our week is pretty much full.  Three weeks after this round we will do another CT scan to determine if the tumors are regressing.  Hopefully this round won’t knock me down too much, but hope for the best and expect the worst!

I’d also like to reemphasize just how important community support has been to us.  Outside the touching blog posts that folks have put generous thought to, we have been getting letters in the mail, emails, phone calls, gifts, food and anything else anyone can think of.  And it is still incredible to me how deep it touches us.  Jenn brings me every letter we receive and reads me emails she gets and it is just still so overwhelming how much it lifts us.  It grounds me and continually allows me to see that no one should have to go through something like this alone.  I read early on that with cancer, the patient needs to relent and let people take care of him or her.  I am getting much better at letting folks help me do things.  Of course there are still stubborn times I want my independence back.  But for me what helps the most is realizing the compassion, humanity and kindness that goes into a blog response, an email or text, a letter, a hospital visit or some sort of talent someone can bring to us, be it food or a quilt.  We feel an emotional revitalization every time we receive anything and are reminded how much everyone cares about us.  And it does not ever get old, or expected or burdensome.  It is always welcome.  So please keep the emotion flowing, either on the blog or whatever way you feel is right or justified.  Everyone has to cope with this in their own personal way, and we certainly do not judge emotional responses.  Thank you all for just being there for us in whatever way you can.  We appreciate it beyond any words that can describe and again continually welcome it.

Hunter

Hi All –

Jenn here 🙂 I wanted to post an update so you’d all know what’s been going on the past few days since Hunter’s post last week. We had an appointment with the oncologist on Friday because there was a weird “clicking” noise in Hunter’s chest whenever he was in a certain position. His physical therapist heard it on Thursday and thought it best for us to have it checked out. Needless to say, the clicking wasn’t happening at our appointment, but the nurse practitioner ordered an EKG and chest X-ray just to be safe. The EKG was fine. The X-ray on the other hand, showed a small hole in each of his lungs, so he was admitted and put on oxygen. Not quite what we were expecting (who does expect to hear they’ve got holes in their lungs?!) and doesn’t seem to have anything to do with the “clicking” noise (which hasn’t returned since), but at least it was caught before it turned into a major problem. They assured us that the holes sounded scarier than they really were, and were fixable without major surgery. The technical term for what was going on is a pneumothorax, or collapsed lung. His aren’t fully collapsed, and to give you a visual idea in looking at his X-rays, his lungs looked to be about 85% expanded in his chest cavity, with the escaped air surrounding them.

He was put on oxygen and had more X-rays taken Friday night and Saturday morning so they could determine whether the holes were getting larger or not. They also did a CT of his chest to get a better view. More waiting. Fortunately he wasn’t having any symptoms from the holes – no shortness of breath or pain when breathing, so he wasn’t experiencing any additional discomfort than the usual. Last night they talked to us about the possibility of inserting a chest tube to draw out the air that had escaped his lungs into the chest cavity, which would in turn allow his lungs to expand to their full size again. More waiting overnight, and another X-ray this morning determined that they would be inserting the chest tube in only the left side, as the hole on the right side hadn’t gotten any larger. As it stands now, he should be having the procedure tomorrow morning, and then it takes a day or two for the lungs to expand again, which in turn should cause the holes to seal themselves as well.

At this point we don’t have an exact reason why the holes formed, but hope to see our oncologist at some point tomorrow. Hunter will be posting in much greater detail at some point after we’re back home. On a more positive note, at least it seems that his energy level is starting to perk back up now that he’s on the upswing from the first chemo treatment. Two weekends in a row spent at the hospital… we’re keeping our fingers crossed that we can stay away from there next weekend!

Thanks again to all of you for your continued support and words of encouragement. It really helps so much 🙂

Hey all

Fortunately, not too much of a medical update today – no big news is good news.  I think the chemo side effects are wearing off, at least the ones that I can sense.  I feel a little less fatigued every morning when I wake up.  I’ve slept very well every night since we returned from the hospital.  I’ve had more energy in the morning; puttering around the house a little, moving Short Round some.  Then I’ll need a small nap in the afternoon.  Of course all this starts over again soon, but at least this time I’ll know what to expect!  It’s all a part of getting through these few months, to get back to the new normal.  The phantom pains are still with me, but not to the previous extent.  Instead of constantly bombarding me, they are now in a peppering stage, only occasionally visiting.  They usually lay me up more than the chemo fatigue.  My appetite has returned and I’m off the anti-nausea meds.  The chemo has made a lot of foods and drinks taste pretty lame – even water which is usually my go to drink of choice.  So, I’ve enjoyed sampling the newer water flavors which make it much more bearable.  I like Dasani so far, but if anyone has more recommendations, feel free to post.  No hair loss yet – that may start after the next treatment or a bit sooner.  Again – pics will proudly be posted!  And of course, I’m expecting many return pics of sympathetic shaved heads :).

We had an assessment interview with our prosthetic folks this week.  If trepidation and anxiety are symbolized by the icy unpredictability of metastatic cancer, then the other end of Hunter’s personal cancer spectrum, progress and headway, are represented by the prosthetic.  Because we are still in the unknown stage of the cancer part, just waiting to see if these treatments have an effect on my lung and pelvis tumors, subconsciously I was expecting a dire outlook for my prosthetic forecast too.  I have to admit the fear of not knowing the cancer prognosis has unsuspectingly seeped in and chipped at my determination.  But not once during the entire interview did the prosthetist tell me what I could not do.  I hope all prosthetists are like ours – straightforward and no BS but with a positive outlook.  I would think most are.  The appointment started with phantom pains, but excitement overruled by the end.  He wanted to assess how I would use my new leg, what activities I would like to return to, what to expect once I receive it, and then actually which leg I would hopefully be using.  He asked me what my short term goals are for 3-6 months from now.  I thought for a moment and realized that I will probably be back at work in lab, walking somewhat normally, with little assistance, getting on with my life, which right now seems foreign.  I would be playing with my children and doing household tasks for my wife (about time!)  At the near 6 month time, I will probably be thinking about getting back to running.  I told him all this and he nodded with certainty, typing it all into his computer.  I described my work and home environments and he had no hesitation about me getting around in them.  It was a moment of realization – that life will move on and I’ll be a part of it.  No matter what the outcome, I will prevail over this disease.  With the help of folks like him and my friends and family, my resolve is continually restored and the positive always bubbles to the top.

He also asked me about my running.  I told him that I had been a marathon / half-marathon runner but didn’t really expect to return to that – maybe shorter races.  He looked at me and asked why not?  His quizzical look stopped me for a second.  Then I remembered back to some of the inspirational thoughts and experiences regarding this whole ordeal that have helped – the amputee Soldiers I saw running the Army ten miler and amputee Soldiers and Marines deployed in Afghanistan, and I’m sure elsewhere.  Many more multiple amputees are out there who are much worse off than just a leg and they are just getting things done, making progress.  I realized I needed bring my focus back on those positive aspects.  Knowing each one has his or her own story with unique challenges, I imagine an overall just-make-it-happen attitude prevailed in the end for most which allowed them to get through the more difficult parts of their journey.  So I responded that I would love to run halfs (which I’ve always thought are the perfect distance) and maybe a whole sometime in the future.  I was expecting him to raise his eyebrows questioningly, maybe expecting me to lower my expectations.  Instead, he simply explained how it was done with the running prothetics and other challenges that need to be met, including keeping the socket (the part that attaches to Short Round) in place during long runs – but of course, not impossible.  After the interview, he went on to describe the impressive technology in two of the latest everyday microprocessor prosthetics that are on the market (if anyone is interested, they are the C-Leg and the Genium, both developed by a company named Ottobock.)  He was very excited and precisely demonstrated how the legs would function and what original problems they fixed over traditional mechanical legs.  I could sense that he loved this part of the job – giving people hope and confidence.  He certainly did that for me.  His can-do attitude and never-flinching purpose were just what I needed in a low time.  I left there feeling like I was going to be back on my feet soon!

I’m now looking forward to getting on with the prosthesis and doing the difficult, sometimes painful things that just need to be done to wear one.  The benefit will far outweigh the cost and I’m grateful to my prosthetist for unknowingly pointing it out to me this week.

Hunter

Hi everyone

I wanted to get this entry out sooner, but unfortunately, this week we had a little expected something to add to the list that cancer has to continue to try to knock me out.  Thursday started really well.  I began this blog entry, was watching television without any problems, and actually felt pretty good.  Then, within the span of an hour, excruciating pain shot down my right leg (my good one!) on the outside.   My oncologist had mentioned that the tumor on my pelvic bone might give me trouble like this with the sciatic nerve.  She was correct.  The pain quickly went from bad to worse. And my foot was cold to the touch.  I contacted my doctor who wanted me to go to the emergency room as there could have possibly been a blood clot.  Jenn acted incredibly strongly and drove the boys to our friend’s house down the street, who ironically not just 30 minutes prior, had expressed to Jenn if anything happens they would be available for long term sitting.  How quickly we accepted their offer!  Jenn drove me to the hospital (obviously obeying all pertinent traffic laws) and unfolded me out of the car.  I was registered and the ER docs examined my foot and leg and determined it was not a clot, but graciously would admit me for the pain.  They doped me pretty good and the pain in my leg was quickly forgotten!  For those who know I haven’t ever drunk alcohol or done any crazy substances in life, this will be funny.  Due to all the painkillers I’ve been subjected to over the last 5-6 weeks, I have, quite proudly, built a tolerance.  I had to have several injections of the compound to get a response!  The administering nurse commented on my tolerance level and mentioned that the dose he had given me would have knocked him out cold.  I finally have a story to tell that starts with, “I was so wasted!”

The docs wanted to verify that the tumor was indeed causing the pain.  So they scheduled an MRI which is the best way to see this tumor and the nerve.  My pain had been managed fairly well by about 4 AM on Friday.  The MRI was scheduled for an accurate “sometime later!” basically forcing us just to wait it out until there was time to fit me in, which happened around 2 AM Saturday morning!  Sleep continues to elude me.  So they nurses loaded me onto a bed, and wheeled me down to the imaging room.  For those who haven’t had the pleasure, an MRI is one of those crappy tests that I would not wish on anyone.  I had two prior to my diagnosis and last night’s was my third.  They don’t get better with time.  MRI stands for magnetic resonance imaging and uses some really cool physics with hydrogen, carbon and other atoms in the body to create oddly beautiful images of ironically ugly tumors.  To obtain these images a few unfortunate requirements are needed by the patient.  First are the tumors – grrrr!  Second, the patient must remain motionless inside a coffin like tube during the procedure which can take up to 2 hours and if interrupted by the patient moving, just adds more time. Third, the machine makes a hell of a lot of noise which is extremely distracting.  The patient is given earplugs which does block out some sound.  Since no metal is allowed, no books, headphones, or other time passers are allowed either.  I made it through my 1^st and 2^nd procedures with little issue, but last night’s was a little different.  I had not showered for a few days and my usually pleasant pheromones had become rather pungent and were also amplified by the coffin.  My lack of sleep stripped me of my ability to ignore the sound and contributed to the increased volume of the machine.  The coffin had also grown increasingly hot after the procedure began which did not help the pheromone problem.  All combined, I was not ready for my MRI.  I made it through about 45 minutes, but eventually just couldn’t continue to sit still.  My mom always said I had problems sitting still.  Once the machine’s noises paused, I sheepishly clicked the button that alerts the technician (okay, it’s the “I quit” button) and asked how much longer.  He said “ONLY 45 more minutes!”  I was discouraged.  I couldn’t do it.  The aroma was too much.  I asked to be removed.  He did, but luckily we finished the first portion of it and found out later in the day that the second portion was not needed yet.  Whew!  Upon returning to my room, I quickly showered.  It was one of the best…ever.

I had my actual chemo on Tuesday and all went well (see photo; chemo port shown.)  I’m taking Adriamycin (also known as doxorubicin). I will have another round in 3 weeks and following that 3 week treatment, my oncologist will assess my progress to determine if more is needed or if we need to change treatments.  I’ve been given some good anti-nausea meds to help prevent sickness.  They seem to be working pretty well so far.  I have an appetite and am able to keep pretty much everything down.  That is a relief.  Unfortunately, the anti-nausea meds have the side effect of drowsiness as does the Adriamycin.  My energy level seems to be okay, but it takes quite a bit to just have a conversation with anyone.

Jenn has been with me most of the time, and our friends who are watching the boys are just wonderful.  We were very worried that Ben or Jack would not want to spend the night somewhere without us.  Neither of them have ever slept over at someone else’s house.  After two days with our friends and their children, now neither of them want much to do with us.  The boys had a blast and our friends were extremely considerate and thoughtful.  They accepted the boys without hesitation and really cared for them during their stay keeping us updated on how much fun everyone was having!

So now we are waiting to be discharged – the SEC Championship game starts in an hour and I hope I’m not watching part of it in this hospital room!  I have a few more meds to take to hopefully prevent the leg pain from returning and the plan is to continue to wait and see how the chemo affects the tumors and if the pain returns, to manage it wisely.

Hunter

Yet another attempt of this disease to break my spirit – I had my first amputee fall Friday night.  I was getting out of bed to use the little boy’s room.  The usual routine is to get out of bed using the walker/hopper, then transfer to the crutches to use around the house.  A combination of the pain meds and being vaguely awake at 3 AM led to a very low state of attentiveness.  When I attempted to transfer to the crutches, I lost my balance and fell on Short Round.  Fortunately, I fell on padded carpet, the wound held and no serious damage occurred.*

It’s really strange and lends to the idea that time slows during a distressing event, but while I was falling, I knew I was going fall on my limb.  I was afraid, but also slightly relieved because I was having my first (and hopefully last!) fall and didn’t need to dread it anymore.  As I hit, I felt the jarring impact of what is left of my femur on what is left of my upper leg muscles and then patiently waited for the pain to hit.  I didn’t have to wait long.  It started at the end of Short Round, quickly shot up to my brain which processed it and decided, yup that needs to hurt and finally ended up as me yelling beyond the top of my lungs just to ensure Jenn woke up.  The phantom pains were mere apparitions compared to what accompanied landing on Short Round.  Luckily, it didn’t last as long.  Jenn heard me, woke up with her own personal expletives, turned on the lights and quickly came to my side.  She helped me get up, gently held me as I whimpered and assisted me back into bed.  She inspected my limb and we both determined there was no bleeding and that the wound held.  After getting back into bed, I was frightened.  What if there was internal damage that would delay a prosthetic?  Or something that would require another hospital visit?  I held Jenn’s hand and fell back to sleep, my fear softened with Jenn next to me.  We both woke up a few hours later, and looked at Short Round again.  It felt like a bruise and not much more.  We had a nurse come to the house to inspect it and gave us some relief as she agreed with our assessment.

After some reflection, I think what really shook me was possibly having to take a few steps back in my progress.  Friday morning, after a good night’s sleep, I had a great physical therapy session, stayed out of bed for most of the day, and was able to participate in and enjoy family activities.  Short Round was feeling better, and I was dealing with the phantom pains pretty well.  I even went outside for a while on my crutches and caught up with the neighbors.  It felt more like a normal Friday after Thanksgiving than recovering from surgery.  Then, that night, I was humbled and literally knocked down a few notches.  But, as I’ve previously mentioned and believe throughout this experience, I will not allow myself to be deterred by setbacks or whatever else cancer has in store for me.  I will analyze and accept the sometimes brutal reality, dig into it to find the positive and humorous aspects even if they are deeply buried and highlight those.  While not always easy, for me it’s the most effective way to cope with this silliness.

Falling did put me on the sofa all day on Saturday instead of enjoying the day walking around on crutches.  But it did have positive results as well.  I was able to watch some great college football, spend quality time with my boys and Jenn, and enjoy some more Thanksgiving leftovers.  I had time to respond to the sincere blog posts and emails that folks have taken time to write. The fall could have been a lot worse too.  A bruise is much easier to manage than an open wound or broken bone.  I’m always pleasantly surprised at just how much the human body can withstand.  My mind believes that a fall such as that one, a little more than two weeks post-surgery, should have inflicted more damage than it did.  But it was only a bruise.  A bruise that gave way to some thoughtful insight that fortified our family’s resilience just a little more.

I hope everyone had a great Thanksgiving!  Thank you again for all the responses and views of this blog.  It is heartening and reassuring to know that so many thoughtful friends and family from all over the world are following this crazy journey.  Jenn and I are overwhelmingly inspired that we can express our honest and candid feelings during it and those feelings will be received with sincere empathy and concern.  The blog has turned out to be a wonderful win-win.  Our reaction to this disease has been inspirational to many folks and in turn, we are inspired by the genuine compassion demonstrated by the replies.

Hunter

* If you would like to read about an amputee who sustained a serious injury after a fall following surgery, I suggest reading a blog post by Rob Gregory (http://survivingsarcoma.com/?p=936).  Rob was diagnosed with a synovial sarcoma on October 27^th, 2010 and decided to blog about it.  The rest of his blog is incredibly genuine and articulate and I have drawn a great deal of inspiration from him and his accurate descriptions of his experience.  His tumor grew in his right calf, and fortunately he was not metastatic at diagnosis.  He underwent several rounds of chemo prior to his amputation and his courage is just plain remarkable.  He also believes in maintaining a positive attitude and using humor throughout his ordeal.  It is pleasure to read.

Hey everyone

Just a quick update to let everyone know that I had my sutures removed yesterday.  I was told that my wound looked really good and some of the medical staff even seemed impressed.  I don’t know what we did, but I won’t turn down a compliment.  I was also fitted with a “shrinker” over Short Round.  Basically it is a sock that fits over Short Round and gently compresses the leg.  I was also taught how to gently massage my limb which supposedly helps with phantom pains.  After the appointment, I massaged my limb all afternoon and it actually did help.  And when I woke up this morning, I had much less pain.  So I think it’s working.  I’m sure there are more days of rolling pin sensations ahead, but I’m going to take my glass half full and say there is a light at the end of the tunnel.

Next Tuesday we start chemo – two rounds of three weeks each.  My understanding is I’ll get my infusion on Tuesday, then allow it to work it’s magic for three weeks, then do it all over again.  In addition to shrinking the tumor cells on my lungs and pelvis bone, the medicine will also degrade my immune system and some intestinal cells.  I should also lose my hair in this first round.  Pics will, of course be posted!  After the first three weeks, my body will have had time to regenerate and strengthen enough to start the second round.  After the second round, we will do body imaging to determine if the cancer is responding to the chemo and if tumors are shrinking.  If so, then we may continue the treatment.  If not, we will discuss other medicines or options with our oncologist.

I’ve detected yet another secret weapon that cancer possesses to break down its host – the capability to induce pain during laughter.  If I laugh at something, I usually have more phantom pains.  It actually makes sense.  Taking away the desire to laugh more quickly breaks the positive and encouraging spirit of the host, which more rapidly leads cancer’s ultimate goal – to endure and thrive at the expense of a living organism.  All things being equal, military units are similar – well-disciplined and highly motivated units tend to achieve more success than those that have low morale.  So, while it lifts me emotionally, laughing sometimes brings more pain and discomfort.  But just being aware that cancer wants me to stop laughing increases my resistance to this disease.  If I want to laugh at something, I’m going to suffer through the pain.  It’s my way of telling cancer that it’s going to take a lot more than laughing pain to make me stop laughing.  I won’t allow it to secretly break my spirit.

Along those lines, I received a package this week that made me laugh really hard.  The pics below show a shirt that came in the mail from Rhonda and Shane Sullivan.  For their efforts in finding it, I am truly humbled and appreciative.  Thank you both for the lift me up, as well as the accompanying pain!

In my honor, Jenn will be wearing the shirt in a 5K Turkey Trot near our house.  Thanks Sweet!  And Happy Thanksgiving everyone!

Hunter