It's Not a Sprint

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