Archive for April, 2013

Hello all
Sorry for the long delay between posts, but it’s been quite a hectic month with a lot of visitors.  This is a little longer than most so sit back and enjoy!  I will go ahead with the great news that I’m officially on a treatment holiday!  My latest scans last Tuesday showed slightly more reduction in some of the tumors, so my oncologist thought it a good time.  That means that I’ll get another scan in six weeks and if it shows no or slow growth, then I’ll continue without chemo.  That was great news.  But, I must say, it has been a long road getting here over the last month.
It started with getting my second chest tube inserted immediately following my last chemo round.  One of my lungs had been collapsing for a while due to a small hole because of tumor death.  So we knew another tube was coming, but just didn’t know when.  So the day after my last chemo treatment, I had a “take home” tube inserted.  The tube was the same size as my first one in December, but instead of being attached to a vacuum apparatus in the hospital, it was attached to a one way air valve that allowed air out, but not in.  Therefore, my lung could re-expand in a comfortable, home environment (sarcasm here…).  It just takes longer (a week vs. two days).  The insertion of the tube was a new experience.  It was on my left side, under my arm and it was quite painful.  The doctor used a wire as a guide before the actual tube insertion.  If you’ve ever attempted to unlock a car with a wire hanger, that’s the feeling I had with that wire tooling around my ribs.  I had a local anesthesia but it pretty much only covered the skin and not my insides.  Wow!  Having the tube at home was no fun either.  There was pain, but the worst part was having to sleep on my back and not on my side!  The tube and valve extended about 5 inches from my body and would flop over and wake me up.  There was very little sleep for the week it was in.  And the pain in my chest limited my ability to walk on my crutches. I’m glad it re-expanded my lung, but needless to say, I was ecstatic when it came out.  But it was tolerable because it was a result of dying tumors.  At the end of the day, that is the mindset that got me through it.
After the tube came out, I had a prosthetic appointment for a new type of socket. I had been working with the suction type for the last few months.  Reminder that this socket requires a type of liner that is difficult to put on, and also requires constant application of alcohol spray to lubricate the liner inside the socket so Short Round would stay inserted.  Unfortunately the alcohol would allow Short Round to slowly slide out of the socket while I was sitting.  So when I stood and walked anywhere, my leg might just not come with me as it would slide right off!  Amusing the first few times, but after a while it gets annoying!  Plus, everyone laughed at me…which was very bad for my self esteem.
So the new socket would have a pin that screwed into a plastic base in the liner.  The pin would attach to a locking mechanism on the leg, preventing any “leg losses” while standing.  Once I tried this new apparatus, I was dumbfounded as to why we didn’t use this one sooner!  First of all, the liner is much easier to put on Short Round and secondly, the pin mechanism provides a feeling of reassurance that my leg is staying with me, all day!  I have been progressing very well with the leg now and wear it everyday.  I’m still using crutches, but it’s only a matter of short time before I graduate to one crutch then to none!
I also felt so good that I went back to work for a while.  My primary concern with work is walking from the parking garage to the lab.  I had a trusty lab mate walk with me and I’m proud to say that I made it with very little problems.  I went in on Monday, Tuesday and Wednesday.  I was so excited to be back in lab, around science again.  I had even planned a series of basic experiments for Thursday to get my hands going again.  Unfortunately, it wasn’t to be.  My hopes were dashed on Wednesday afternoon, when in the euphoria of independence and autonomy my mind had developed, I reached for something in my car and pulled a muscle (or two) in my upper right arm.  Ouch!  Usually, not a big deal, but I use my arms for walking with my crutches.  So work was out for a few days while it healed.  I sat motionless for a couple of days and it finally healed after a week.  But it was a reminder that I have to be vigilant of my remaining abilities and that a pulled arm muscle will sideline me more than it did prior to my diagnosis.
Once my arm felt good enough to walk again, it was time for Ben and Jack’s combined birthday party.  Their birthdays already came and went, but Jenn had planned their party later for several reasons; scheduling of a science magician for the party, and it would also fall in my chemo cycle when I typically feel good.  So last weekend was the party and it was wonderful!  Everyone had a great time and Jenn’s planning was amazing as usual.  Unfortunately, I didn’t feel so good.  I was weak, and had been running a low grade fever throughout the weekend.  This had happened before and we chalked it up to some type of bug that I probably caught from one of the boys during my low white blood cell timing.
By this past Monday the fever hadn’t gotten any better and I was having chills too.  So we went to the emergency room Monday afternoon to determine if I was neutropenic (white blood cells get too low and may need antibiotics).  I wasn’t neutropenic, but I was diagnosed with pneumonia, which is not unusual for chemo patients.  Lowered immune system capabilities leads to easier infection.  Grrr….  Just one more obstacle.  It was an early detection, but required antibiotics and will probably knock me down a few notches while my body fights it.  Luckily, because of my holiday, I don’t have to worry about chemo getting in the way of my immune system this time.
We were discharged from the hospital at about 11:30 PM on Monday and had to do a quick, little sleep turn around to make an appointment with my oncologist at 9 on Tuesday morning.  But it was worth the lack of sleep.  The doctor came in and showed us the most recent lung scans (taken the day before).  Some of the tumors had continued to shrink and some stayed the same size.  But none had increased in size.  And combined with the 50% reduction I had since December, she was very happy.  Of course, so were Jenn and I.  So she said she was putting me on a treatment holiday – a term I find a bit misleading, but whatever.  It means, in six weeks I go back for another lung scan and if there’s no tumor growth, I can continue the holiday for another six weeks.  I was just extremely happy not to have to had chemo that day.  The long night combined with the pneumonia was making me a tired dog!  But a very happy day indeed!
When we got home from the appointment, I took my antibiotic for the pneumonia and then slept for a while.  Unfortunately, the good news we received would have to be put on hold to celebrate. I woke up in the middle of the night, and got violently sick.  As I was retching into my trusty bucket I was thinking to myself: Really?!  Really?!  Five months of chemo and I had meticulously avoided throwing up, taking anti-nausea meds at precise times.  I had gotten sick once or twice but not to this extreme.  After just receiving the treatment holiday notice, this was not the direction I had anticipated heading.
After a few more bucket episodes, it turned out that the antibiotic was making me sick.  We went back to the doctor and she changed it but told us if I still got sick, to just stop the treatment and the first four that I managed to keep down would hopefully have killed the pneumonia.  That’s what happened.  So now, after stopping treatment, I’m not nauseous nor throwing up.  But I’m pretty exhausted from all the sickness, back and forth to the doctor, and of course the pneumonia. Happy treatment holiday!!!  I will say, it is disappointing as I’m usually pretty perky around this time.  But it’s just one more obstacle which can be overcome.  So no worries.
I’d be remiss if I didn’t mention the Boston bombings.  I was devastated and discouraged  that anyone could take such a wonderful and inspiring event and turn it into a nightmare.  The victims deserved none of it of course and those that lost limbs, lost them in the most terrible way imaginable to me; completely unexpected in an environment where destruction and horror were far from anyone’s mind.  I was deeply moved to see the outpouring of money to help them, hopefully to cover medical bills and advanced prostheses that even with co-pays are still expensive.  I realize I am very lucky to be in a position where I have insurance to cover my treatments.  I wish all of them courage and continued hope and support.  I would ask that folks give prayers and thoughts to those that are now unexpectedly part of the amputee community and will require not only physical help, but serious counseling to overcome the trauma and adjust to their new normal.  Thank you.
It’s good to be back on the blog.  I hadn’t felt up to it for a while unfortunately, but now am a little more energetic.  I hope everyone else is doing well.  Have a great weekend!

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