Monday, May 29, 2017

Moved to CaringBridge

I should have posted this long ago, but time seems to move fast these days.  To make things easier and 'fit the norm', I set up a CaringBridge site so friends and family can keep track of me.  I started post there right after I stopped here, so there is no break in the action.  Please feel free to take a look here:

Wednesday, March 8, 2017

2nd Day of Chemo and the following week

So almost 2 weeks have passed, just trying to get caught up now.

The 2nd day of chemo went pretty uneventfully.  Katie took me to treatment and waited till I got hooked up, then had to get to work.  This was the R in the R-CHOP mixture, and this was the one they had to monitor the most closely due to possible allergies and reactions.  They started me off with some Benadryl, then plugged me into the real meds.  I dozed a bit here and there, but for the most part just sat in the chair all day.  I was hooked up by 8:30 I think and wasn't done until 3:45pm.  My sister Steph came by to give me a ride home, but it was hard to judge when I'd be done so she was there early and just kind of hung out.

I was supposed to go to my follow up appointment for my blood clot afterwards, but they said they could reschedule until Friday morning since it would have been after 4 by the time I got there.  So Steph took me home and dropped me off.  I wasn't feeling terrible, mostly just tired and 'heavy'.  It was a weird feeling.  I spent most of the evening in bed.

Friday morning, I got up and was able to drive to my doctor's appointment.  I started off with an ultrasound and then met with the surgeon that cleaned out my leg a couple weeks before.  The surgeon had bad news.  My leg was clotting up again, basically from my knee to my hip just like before.  I wasn't in as much pain and could walk pretty well, so I was pretty disappointed.  It meant another trip to the hospital and another surgery.  After spending the prior 2 days at the clinic for infusion, I had a hard time with this.  The surgeon noticed this and gave me the option of coming back on Monday morning to have my surgery.  It meant being on bed rest all day Monday and the follow up surgery Tuesday, then going home after that.  We had a lot going on Friday (car in the shop, Girl Scout Cookies, etc), so I tried to finish things up and have a quiet weekend.

We were scheduled to check in at 7am on Monday.  Katie took me over and got me registered.  I knew what to expect so I wasn't too concerned, just wanted to get it started and get it over with.  I was not looking forward to the clear liquid diet again.  At this point, I was already down about 15 pounds.  They wheeled me to the surgery room and I remember sliding over to the table and that was about it.   I know I spent quite a while in the recovery section right after surgery as they were waiting for a room to open up.  I slept through most of that and most of the early afternoon in my room.  When I did come to, the nurses were checking me over and I think things went fine.  I made sure to order my lunch (chicken broth, jello, shaved ice and apple juice) so I could be sure to get 2 meals in as room service closes at 7pm.

I spent most of the afternoon watching tv, trying not to get too burnt out on one show.  Katie came by with Eva and Robb later that evening while Nick and Alex were at Boy Scouts.  They stayed for a while, but needed to get them home to bed so they took off around 8:30.  I tried to stay awake, but I think I nodded off not long after they left.  I know I took some pain meds around 10 or 11, and tried to sleep.

Around 2am, the nurse woke me up and told me I had a fever of about 102.  She was going to page Penny (my surgeon) to see what he wanted to do.  This part of the night was in and out.  I know I was given some kind of meds for the fever, then had a portable x-ray come in.  I decided not to try and stay awake in between, so I think I slept fairly well, all things considered.  They had the fever under control and I think I woke up around 6 or 7 and waited for surgery.  Again.

They wheeled me down to the room again and everything went as planned.  They removed the sheath and any remaining clot, but this time they inserted a stent to keep my vein open, which was the main cause of the clotting and all the swelling.  The surgeon didn't want to put one in, but he didn't see a way around it as the chemo was supposed to shrink the nodes, but not very quickly.

I woke up in my room again and waited to make sure everything was ok to go home.  I called Katie when I was good to go and she was there in about 5 minutes as she works about a block away.  She got me home and I went to bed.  Katie figured this out later, but she was guessing it was the time in the treatment cycle where my blood cell counts were super low.  Couple that with all of the blood they had to take out of me for the clot and I wasn't doing well Tuesday night.  I think I tried to make dinner, but am not sure.  I was very confused, weepy and tired, and then got winded from going up and down the steps.  I also had a rotten headache that wouldn't let up.  I was pretty grumpy too and snapped at Katie over something, so she let me be.  That went on thru Wednesday night as well, so we'll see if this is the normal part of the treatment cycle or not.  I was pretty miserable though, as I wasn't sleeping well either.

Thursday came along and my headache was gone, or at least toned down a bit.  I was able to work for a short time in the afternoon and even went into the office on Friday morning.  It felt great to do something and see everyone again.  I made it till about noon on Friday and went home.  I worked a bit from home that afternoon, but was pretty much spent.  It still felt good though.

We had a fairly quiet weekend.  Katie had to work most of Saturday so we were around the house, and I made it to church on Sunday so that was nice.  I've been working every day this week so far so that has been great.  Probably doing a bit too much, but enjoying it while I can.  It's great to get hours in again too, will definitely help the paycheck.

The crew from here has also organized a pancake breakfast this Friday, so that should be fun.  Will be fun to see who shows up, hoping to see some familiar faces in the bunch.

Thursday, February 23, 2017

First Day of Chemo

Katie had arranged to take the day off and my dad stuck around to sit with me for the first treatment too.  We were there and 8am and ran into our neighbors.  After that, we went downstairs to get started.

I basically sat in chair and they hooked me up to IV's via my med port in my chest.  They were able to get three of the meds in thru the port for the day, then the fourth is in pill form for the next 5 days.  There was a hold up on one of the meds due to insurance being slow in allowing it, but it came through right before we got started.  They decided since the one med is toughest and can potentially cause the most problems, that I'd come back tomorrow (Thursday) and take that one separately.

They started pushing pre-meds to make things easier, then got me going on the real stuff.  It went just fine.  It was long and boring, so I felt bad Katie and dad had to sit around and stare at me.  I was a little sore around my port and had a headache, but for the most part it was uneventful, which was just fine with me.

Things ended quietly and we were on our way about 1:30.  Dad said he'd spring for lunch so we went to the Ground Round in Fargo.  It was nice catching up with dad and just being up.  I still felt good, but on the way home I could feel thing happening.  It felt like my headache was getting worse and there was a fog rolling in on my brain.  We made it home and I went to bed.  I slept restlessly for about 2 hours and then was up.  I took the meds I needed and pretty much stayed in bed until bed time.  I did have some ice cream and a chicken pot pie for dinner, which tasted amazing.  I'm hoping I will get to keep most of my tastes, but am not banking on it.  Katie and I watched an X-Men movie we hadn't seen before after that.  She didn't get to see much since the kids were all over the place, but it was nice to relax a bit after a long day with her.

We were up this morning (Thursday) and I'm currently sitting in the same chair and getting started with the other med in the cycle.  I'm going to be here a while, but it feels like I might be sleeping here shortly.

Test Results

On Tuesday, we were set to get the results from all the stuff leading up till now.  I was feeling decent so I decided to try and drop Robb off and daycare and go to work for a little while.  It was nice to see most of the guys again.  It had been nearly 2 weeks I think since I've been into the office.  I sat in on the daily stand-up and actually worked for almost an hour before I had to go to the oncologist.  It was nice being normal for a short time, but my leg did take the brunt of it.  It was pretty swollen by the time I got checked in for my appointment.

The appointment kind of filled in the gaps.  My oncologist explained that I wasn't eligible for the trial out of the U of M, so it was good we weren't banking on that as an option.  He told us the bone marrow biopsy returned negative, so that is a good thing.  It means the cancer hasn't spread into the blood.  He did say the cancer is contained to my lymph nodes but has taken over some of the muscle tissue in my right thigh.  For the most part, this is good news.  While it has spread, it is still fairly contained and is treatable.  He says I have a 50-60% chance of beating it, so that is good enough for me.  We finalized a few things about starting chemo and we were off.

I drove home and Katie went back to work.  She has been amazing through this whole process.  Extremely supportive and keeping me on track.  I wouldn't be getting through this without her.  When I got home, I slept.  I was hoping to work a bit more for the day, but the adrenaline dump and being up and about for so long wore me down.

I ventured out later that night to Nick's Cub Scout Blue & Gold Banquet.  This is the high-point of his time as a Cub Scout.  He got to cross over to Boy Scouts tonight.  Originally, I wasn't sure if I'd make it but I was determined to be there for Nick and the other boys in his den.  My dad even drove up, so he got to see how it worked and see both boys in uniform.  It started with dinner and a presentation to raise money for the local District, then it was time for the Arrow of Light and Bridging Ceremonies.  I've been through it with Alex before and seen a few, but it is still a big deal to see the boys moving on.  I was den leader for these boys for the last few years.  We had a few leave and a new one joined, but we finished the year with 7 Scouts in our den, 5 of which have crossed over to Boy Scouts.  I'm happy for all 7 and very proud of how hard they worked.  I really had a great time helping out.

We finished up the evening at the Scout Center and headed home.  I was spent.

Tuesday, February 21, 2017


So Monday rolls around.  This is the last test I needed before starting treatment, so I was anxious to get it done.  This is the test I was supposed to have last Monday, but was laid up elsewhere in the hospital.

My sister drove me today since I wasn't too sure about driving yet.  I was checked in by 1 and waited to go back.  I wasn't sure what to expect.  Normal heart tests for me were running on a treadmill and getting worked up.  For this one, it was a lot easier.  They took some blood from me, put some radioactive stuff in it, plugged it back into my arm and then they had me sit still for 10 minutes while they scanned my heart.

So they did just that.  I think I dozed off (again) during the scan, but I was able to stay still.  After 10 minutes, I was up and on the way home.  I was able to work for a little while in the afternoon, but again it was tough.  Hard to stay focused, hard just to stay awake.  But I got a few things done so it felt good.

I was able to try driving Monday night.  Alex had a troop meeting and he'd missed the last 2 because of my stuff, so I wanted to get him there.  It wasn't easy, but I got him there in one piece.  It was about a mile and a half away, so not far.  But it was tough handling the way my leg had to bend to get to the pedals.  I'm really ready to get this swelling out of here and move on.  Test results today (Tuesday), so I'll check back in later.

Monday, February 20, 2017

Port Placement

Thursday was a pretty quiet day.  I tried to get some work done and managed a couple hours, but was struggling.

The next day was the port placement.  We had to check in by 7:15 so we arranged to drop Robb off early.  It was similar to the node surgery a couple weeks ago.  Same check-in process, same location, even the same doctor.  We sat in the prep room and waited while they did their prep stuff.  I even got a semi chest shave; at least they went all the way across so I wasn't uneven.

They wheeled me back to the next prep area and Katie and I hung out for a bit.  Again, just like the node surgery.  I wasn't feeling too worried.  It seemed like a straight forward procedure, lots of people have had it done and, most importantly to me, is that it was another step in the road to start treatment.

The nurse came back to get me and wheeled me into the operating room.  I remember climbing over to the table and laying down, and that was about it.  Whatever stuff they put in, really does the trick.  I remember waking up in the recovery room with Katie and trying to figure out where I was.

Everything seemed to go fine.  They made two incisions, one at the top of my right peck and that's where they inserted the port.  From what they tell me, they then ran a little tub toward my neck (over my collar bone) and tied it into the vein in my neck (where there is another incision).  I was pretty sore Friday afternoon, but I was home by noon.  I was hoping to work a bit, but ended up sleeping most of the day.  It felt like when I was a kid and my brother Mike would punch me in the shoulder.  But constant.  Not terrible but uncomfortable.  And having the port under my skin was creepy as anything.

I spent the weekend recovering and felt pretty good.  I was walking better and with a little less pain, but my leg is still really swollen and my knee is still hard to move.  But walking better definitely helps.  Sunday went by quietly as well.  It was just a relief to be at home and not have to lie still in bed.

PET Scan

It was nice being home.  The hardest part of the hospital was the time to think.  You can only watch so many episodes of Moonshiners before you start wondering if you could run a still in your back yard.  I kept coming back to the fact that being stuck in the hospital for so long, all the pain, all the time away from home.  All of that had happened and I hadn't even started treatment for the cancer.  That was what bothered me the most.  This was all just trying to fix some side-effect.  Trying to stay positive knowing that wasn't easy.

So Wednesday went about as planned.  Prior to the whole blood clot thing, I had been scheduled to get a PET scan Wednesday morning.  We got there nice and early for that again.  I was still in pain walking, but I had my walker and hoofed it through the hospital to get to the room.  We ran into the surgeon that did one of my surgeries and said hi.  I wasn't struggling a bit so I just wanted to keep moving.

They do the PET scans in a trailer that is outside of the hospital itself.  It was pretty cool, kind of a self-contained area.  They  shot me up with some radioactive stuff and I had to sit still for an hour.  No phone, no tablet, no nothing.  It was nice, but still tough sitting up.  I dozed a bit, and then it was my turn.  Things are always a tight fit for me.  They got me wedged in there and started the scan.  It was supposed to run for about 30 minutes due to my size.  I crawled in and waited.  I got moved back and forth a few times and probably fell asleep, but it went well.  Compared to the last week or so, it was a piece of cake.