Tuesday, November 26, 2013

Slow but steady decline

There hasn't been many dramatic changes in my condition since my last blog post.  I've been slowly losing sensation in my lower body starting with my toes and moving its way up my abdomen and back.  At least now I do not feel any pain in my legs at all.  The scary thing is I don't feel anything in my legs at all.  The scariest thing is the slow but pursistant advancement of the numbnexs up my body.  

There was a small flurry of activity the last few days.  I've been having bloody noses which concerned the home health care nurse who checks in on me.  They did a blood count on me and found I was very low on platelets and red blood cells.  This lead to a ride to the hospital on Friday to recieve 2 units of platelets and 4 units of bed blood cells.  I didn't feel much different, but I was told my cheeks regained their normal nosy glow.  It took most of the day for the blood products to slowly drip into me, but the time flew by thanks to a nap in the morning and lots of company in the afternoon.  A few different carfulls of friends came down, some expected and some surprise, to visit and see how I am doing.  It was great seeing them all, playing cards against humanity, and catching up in general.  

Monday was also very busy.  I finally got physical therapy to come out after a week of calling around to various people.  It was very productive evaluation, and my physical therapist seems like he will be a big help.  He ordered a mechanical hoyer lift to get me out of bed, a recliner wheelchair so that my back will be ok, and a wheelchair pad so that I won't have to sit on the plain seat.  Surprisingly for all parties, this equipment arrived about 4 hours later in addition to a trapeze bar for my bed and oxygen machines.  The trapeze will hopefully help me adjust myself in bed, but I haven't tried it out much since I've been pretty sore today.  The oxygen machines are for my low O2 levels and has helped a lot with my wakefullness.  

Even more surprising was I was able to use some of this equipment right away.  The oxygen concentrator was ready to go and easy to use which I'm sure helped me be able to use the wheelchair for a bit.  Thankfully, both my regular home health care nurse and a nurse who will be helping me out to give my parents a break were both here at the same time.  We used this opporunity to use the lift with experienced people to train my mom how to get me into the chair.  It was a little more awkward than I would like, but we managed to get me fully upright and sitting for the first time in weeks.  My back and abdomen did not appreciate this transition, and I was extremely sore and rigid for the rest of the night.  I was only up for 20 minutes so this will be something I will have to work on to be able to go anywhere outside of my apartment.  PT comes out tomorrow so that will be a good test to see how I'm progressing.

Next up is more chemo and scans on the 4th to see how I'm doing and treat me with a new cocktail of drugs.  My sisters are coming down for Thanksgiving which will be fun and a good distraction from life. Here's wishing you a happy Thanksgiving too.

Monday, November 18, 2013


I have been back in my own apartment since Wednesday without any dramatic changes.  However, things are leaning to a downward progression even after treatment.  It is encouraging that my blood count numbers regarding my liver and bones showed improvement, but my mobility and strength is not showing the same trend.  Overall, being at home is a vast improvement to being in the hospital.  I don't have to deal with a rotation of random nurses and techs (who were largely great with a few exceptions).  My parents have been taking great care of me and are learning how I need to be moved around without too much discomfort.  Being so dependent on others to take of my most basic needs has been hard, but my family has made it that much easier.

My current condition is both better and worse than it was two weeks ago when I got admitted.  My pain is under control after adding some other kinds of pain killers and increasing a couple others.  My legs and lower back flare up periodically, but we have found that we need to keep them moving around in different positions to remedy that pain.  The worst part is that I am essentially paralyzed from the waist down, but still able to feel pain.  I haven't gotten out of bed in over a week, and it is fairly uncertain whether or not I will be able to get in and be mobile in the wheel chair that was delivered today.  I am able to roll side to side with some difficulty and pain, but being able to sit up completely with a straight, unsupported back is a different story.  I am both anxious and scared to try the wheelchair with physical therapy.  Anxious since it would allow me to go from being stuck in bed 24/7, but scared to fail and have that door of hope close on me.  Van Tine already told me that I will probably never walk again, but any form of transport besides a paramedic's gurney would be a vast improvement.  

I have made one trip out of my apartment via ambulance since I was discharged.  This was to complete my latest round of chemo that I mentioned before.  It only consisted of two days actively receiving treatment.  The first dose went fine and without any side effects, but the second dose that I got on Friday was pretty unpleasant.  I have been throwing up all weekend, and my guts have felt like a can of worms wiggling around.  Thankfully, I have felt substantially better since this afternoon.  I've been able to keep my food down and haven't felt nearly as bloated.  Now I just need my throat to heal from the acid burn of puking at least once a day, and the creeping numbness that is advancing up my back and abdomen to stop.  The docs think an enlarged tumor is putting pressure on my spine.  We treated that area immediately with a 5 dose radiation set after discovering it via MRI.  However, I have not felt any relief from either radiation or chemo besides my pain relief, which I'm sure is at least partially due to the new pain meds.  I'm due for another chemo round of the same drugs in two weeks.  It is a fairly experimental regimen, but has worked in another of Van Tine's patients in the past.  Only time will tell whether it will work for me too.  If not, he has other drugs to throw at me, but the number of good options are dwindling as my cancer spreads and gets larger.  

Things are getting scary as all of these changes have happened in such a small amount of time.  When I was admitted this time around, I was in terrible pain, but I was still walking.  When I left, my pain was OK, but I was unable to move my legs at all.  They have also shrunk drastically in size and muscle content in a very short period of time which was surprising to see.  Besides the random bouts of pain, my legs are numb and tingly.  This sensation has been climbing up into my abdomen and lower back.  This has made mobility even worse and been hindering my almost constant GI issues.  Most importantly and scarily, the numbness has made it hard to breath at times.  It's very hard now to see a bright and sunny conclusion to my fight against cancer.  Nothing has worked against all of my tumors, and every treatment seems to only keep the progression at bay for a short amount of time.  I have read about patients who have come back from worse conditions, so there is still hope to be found.  I'm currently in a waiting game to see what will happen next.  While I wait, don't be a stranger.

Saturday, November 9, 2013

Steady decline

 It has been a slow week being after being admitted to the hospital.  Changes have been slow and largely for the worse.  My pain has been stable with low and tolerable amounts of pain laying still on my back.  However, the pain greatly increases whenever I have to roll over or move in general.  As long as the nurses are careful and take things slow it isn't too bad.  It mostly affects my lower back, hip, and thighs.  The strange thing is this area is numb and tingly without much sensation.   The worst thing is I have lost the ability to move anything below my waist.  The cause of my pain and loss of sensation is tumor growth along my spine putting pressure on my nerves.  

We discovered the tumor growth after an MRI on Thursday, and so far the docs have treated it with radiation and chemo.  I was able to start radiation right away, and finished up my fifth and final session on Wednesday.  I haven't felt any effects from radiation so far, but it often takes time for it to shrink the tumor.  Radiation has had mixed results in the past with some areas shrinking and some staying the same.  Hopefully the tumor that they targeted in my lower back is radiation sensitive, and I start to see some results soon.  We are also starting a new chemo regimen today which has previously helped a girl whom Van Tine treated who was in a similiar situation.  It consists of three drugs applied together at a low dose.  Van Tine said they seem to work together better than seperately, and the reason to use a low dose of all three is the regular dose would be too toxic.  I received my first dose last night and will get the second and final dose of the round in a week.

Overall, the week has been scary.  I've been confined to bed, and feel like I've switched places with one of my old nursing home residents.  I need assistance with just about everything due to my current paralysis.  I've been catheterized since the docs thought my adomenal pressure and bloating might be due to urine retention.  The initial catheter placement burned quite a bit, but I got used to it within a day or so.  Waking up to find that I am essentially paralyzed from the waist down was one of the most frightening moments of my life.  Espessially when that was combined with the need to be assisted going to number 2.  The worst part of it is that I can still feel the numbness, tingling, and pain in my lower body since I'm not actually paralyzed. 

My time in the hospital has been much easier to deal with than my previous admissions due to the constant contact with my family and friends.  My mom and dad came down right away, and she has been staying here ever since.  My dad had to go home for the week to finish up with harvest, but he came back down with my little sister Tracy this weekend.  My other siblings along with several aunts and uncles have come down over the past two weekends as well.  My friends have also been great with many impromptu visits.  I've also recieved many cards and messages which have brightened my day.  Thank you to everyone who have made this terrible part of my life a little easier.

It is becoming harder to remain optimistic about a cure at this point.  My cancer had proven to be more aggressive and treatment resistant than the typical Ewing's sarcoma at every treatment point.  New tumors keep popping up with every scan.  The periods of normalcy after treatment are becoming shorter as well.  Van Tine tells me to remain patient and that he has seen his patients come back from worse, but he also says that my current prognosis doesn't look good.  I've decided to take each day one at a time awhile ago which has helped me deal with each crisis as they've popped up.  There isn't much I can do besides take the doctor's advice as new problems come along.  I've remained fairly stable over the past few days, so it is hard to say what will happen next.  Hopefully, the chemo will have av effect, and I will be able to get out of bed on my own for another stretch of freedom.  I'll update soon if something dramatic happens.  Thanks as always to everyone pulling for me out there.

Friday, November 1, 2013

Settled in with mixed improvement

Things are going better for the most part.  I was essentially in agony yesterday with constant pain extending from my pelvis down my legs and into my lower back.  I was pushing my pain med button on the dot every 20 mins since that's when it would be active again.  I had a pair of ice packs resting on each side of my hips almost the entire time with brief intervals of rest when it got too cold.  I was still able to get out of bed (barely) to transfer to a wheelchair for transport to radiation and to my new room.    Today is much better with much less pain laying in bed although I'm not able to get out of bed.  One way they're hoping to make my situation better is radiation.  5 treatments are currently planned for this set, and I am lucky to get started on them so quickly.  I was simulated (prepped) in a CT scanner yesterday morning, got my first treatment that night, and my second treatment this morning right after my pelvic MRI.

The MRI this morning was a lot easier than the one last night due to much less pain and much more sleep last night.  I woke up about every hour or so, but I was sleeping well in between.  The funny thing is my pain laying down in bed is dramatically better and more tolerable, but it is more painful getting out of bed.  Thankfully, I was able to stay laying down all day since they transferred me to scan and treatment in my bed.  They kept the sheets underneath me for the tables as well which made them much more comfortable.  The extra pain killers they gave me before the MRI helped me through the heat and discomfort as well.  My appetite is coming back too.  Especially in contrast to yesterday when I couldn't eat anything due to pain and bloating.

I was able to relax all afternoon after my scan and treatment were finished.  My parents came down yesterday after we told them about my situation, and my sister Lori accompanied by her husband and daughter came down as well, so I've had a nice amount of company while being holed up.  My lab mates, friends, and an unexpected drop in by my cousin Brian and Megan have kept things from getting boring as well.  The only real interruption to resting and talking after my scans was a visit from the physical therapist where we learned I couldn't get out of bed without a painful explosion in my lower body.  This combined with my otherwise lack of mobility will keep me in the hospital for the foreseeable future.

I am starting a new pain management regimen with some different drugs, so hopefully this will help me get out faster.  The radiation should reduce the tumor expansion which is likely causing all the pain.  The MRI results haven't all come in yet, so it's hard to say where my current condition cancer wise is.  Should find out soon, maybe tomorrow when Van Tine comes back from a conference in New York.  Otherwise I'm going to try to enjoy my family being here even through I'm cooped up and can't even leave to go get a meal with them.

Speaking of being cooped up, Anna and I have a pair of tickets to the Beauty and the Beast at the Fox Saturday night.  Orchestra B level and going for $100 total or best offer.  Email me at greg.sibbel@gmail.com if interested.