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

MUGA Scan

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.

Saturday, February 18, 2017

Friday Afternoon - Tuesday

So I got home from the bone marrow biopsy and Katie went back to work.  I was hoping to rest for a bit and then do some work from home.  I sent a message to my oncologist saying things went well in the morning, but I was still having pain and swelling in my leg to the point where it was hard to walk.

Shortly after, I got a phone call from my oncologist encouraging me to go in and get an ultrasound on my leg that was hurting.  I was worried about Katie having to leave work yet again so I didn't want to bug her.  Dr Ambrose said he had an ultrasound scheduled at 1 and to get going.  I called Katie and explained what was going on so she ended up coming to get me and run back to the hospital.  Again.

When I got to the ultrasound, the tech was super nice.  She explained what she was going to do and how it worked.  She ran down my left leg and was talking the entire time.  Explained what she was seeing, what she was looking for, stuff like that.

Then she switched to my right leg.  Once she got started, she went quiet.  She ran it a few times, then changed the head on the machine and ran it again.  Then changed it back and ran it again.  So I knew something was up.  She finished up and cleaned the machine, then said she had to go find a doctor.  Before she left, she said I had to lay super still until she got back.  Not to move AT ALL.  Uh oh.

The doctor came back and took a look at the scans.  Then explained what was going on.  I had a blood clot in my leg.  I think I asked how big and he replied: 'pretty much your whole leg.'  He explained a few different treatment options and the drawbacks.  I said I wanted to go the aggressive route and they wheeled me out.  I remember going to the same prep station as for the morning and seeing some of the same nurses.  They looked confused, so that made me laugh.  I think I was prepped and in surgery by 2.

I woke up later in the ICU.  The doctor said they had put a sheath into my leg to make the meds more effective.  That also meant I couldn't move.  Anyone that knows me knows that is tough.  My leg was very painful, I could only sit up a certain amount in the bed, I couldn't move it because the IV's went directly into my leg.  Ugh.  So that was Friday night.

Katie brought Eva in to say hi.  She was scared at first so I felt bad.  Katie explained what was going on and it was all to help me get better, so that helped her a bit.  They left and I had my first meal on my clear liquid diet.  Chicken broth, jello and apple juice.  That is pretty much what I ate for the next 3 days.

Time crawled the next few days.  I had daily checks on my leg where they wheeled me down to the scan room and I actually got to move and lay on my belly.  Otherwise I was on my back and immobile.  They gave me pain meds when needed, but I tried to stretch them as much as I could.  Just not a pill guy.  I should have kept up on them better.  Overnights, were rough.  I wasn't sleeping, so I was all over the place in my mind.  My anxiety peeked Sunday night I think.  I wasn't sleeping, was in a lot of pain and pretty much lost it.  My nurse came in and offered meds and I accepted.  I think I slept till 4:30 or 5am, which was the most sleep I'd had since I checked in.

I made it through the rest of my time there.  I was checked again on Monday and they ended up having to go in and clean out the rest of the clot.  The meds worked, but there was just so much in there.  I remember hearing one of the doctors saying he was surprised there was any blood flow at all.

Monday night I was off bed rest and the clear liquid diet.  As soon as I could after surgery, I was sitting up in the chair.  My leg was still swollen and painful, but it was better than laying down.  I also got to order some food, so I went with the fruit cup and some stir fry.  Didn't want to overdo it, but I also hadn't eaten since the night before.

Tuesday morning rolled around.  About 2am, I was woken up and the nurse explained they needed my room.  I was in the least danger in the ICU, so they took me down to the general unit, which was just fine.  I had no problem with giving up my room to someone that needed it more.  The room was smaller, but the nurses were just as good.  Was amazed with everyone that checked on me the whole time I was in there.  Always positive, always helpful.  Anyways, I had breakfast and waited.  My surgeon was due in around noon so I hung out.  Katie stopped by when she could and there was a physical therapist that came in to fit me for a walker.  Shot to the ego, but it helped me get around.  I had actually worked with him a few years ago on my back and he remembered me.  Still a great guy.

We got that worked out and not long after the surgeon came in.  Explained a few things, mostly that I'm not on a blood thinner and then he sent me home.  It took me a while to get adjusted to being home, but it was good.  Still hard to move around but I was home.  It was nice to surprise the kids when they got home from school, but hard to see Katie running everyone around when all I could do was lay there.  I didn't sleep well that night, but it was better than in the hospital.

Catching Up/Friday Morning

Ok, so I'm a week behind now.  Going to go through each event in a different post.  Lots has happened (not all of it good), but I wanted to get it written down so there.

Friday morning rolled around and I was anxious to get started.  We had to be at the hospital early, so Katie grabbed me & Robb and we were out the door.  Since I didn't want to get up on time, we were late, so Katie had to take me down to the hospital first, then run basically back home to drop Robb at daycare, and then run all the way back to the hospital.

The bone marrow biopsy was explained to me like this:  drill into the back of your pelvis, scratch around, drill in again, and scrape out some ketchup.  Boom, done.  For this one, I laid on my belly in a ct scanner (I think).  They gave me some gas that made me feel floaty and took care of business.  Overall, I think it went pretty quickly and uneventfully.  I went to recovery and I think I was home by 11.  I wasn't even in too much pain when I got home.  My leg was hurting and I was hobbling around a bit more than I had before, but it was manageable.

Thursday, February 9, 2017

Pain in the A...Leg

Left work early yesterday (Wednesday) because I was hurting.  Made it home and laid down the rest of the day after running kids to faith formation (Katie did most of the drives).  The only thing I can relate it to is having the worst leg cramp in the world, running from your foot to your hip.  And then having shin splints on top of that.  I've had limited range of motion for a while now, but it was just in my hip.  Now I'm having trouble both straightening and bending my knee.  Just something else to worry about.

I had trouble walking around this morning and was still in pain, so I stayed home from work.  Probably a good decision since I could barely get around the house.  Can't tell you how frustrating it has been.  I kept trying to get comfortable but nothing was working.

I did get a call from my Fargo oncologist today, so that was good.  He ordered labs and prescribed pain meds, then pushed through a few tests that needed to get done.  I told Katie and she said she'd come get me to get my labs done and pick up the pain meds.  While I was waiting for her to get home, I got a call and scheduled a bone marrow biopsy for tomorrow morning.  7am check-in, start at 8 and hopefully done by 10 or 11.  From what I understand, they drill into the back of my pelvis and suck out some ketchup.  I also was able to schedule a heart test for Monday.  Now I just need to get my PET scan scheduled and that should be it before chemo.

The labs went fine.  We were in and out, although they took a bunch of vials of blood.  I think some were for tomorrow's procedure too, but there were quite a few to fill up.  We picked up meds on the way home and Katie dropped me off.  I hit the couch and that was about it.  I was supposed to run a Den meeting for Cub Scouts tonight, but it would have been too much to be on my feet for that long (even sitting in a chair is really bad too).  But thankfully, our Pack leader was able to run it for me.  I had everything planned out for him, so hopefully it wasn't too big of a deal.  I was bummed because it was the last den meeting of the Webelos II boys I've ran for the last few years.  The Pinewood Derby is also this weekend so I'm hoping I might be able to go for a bit, but I doubt it.  Nick's car is done, but not as much paint as he had hoped.  Got the weights in at least today and called it good.

I shared the news on Facebook last night.  the amount of comments and support has been amazing.  Very thankful for all of my friends and family for the support.  Very touching and the kids, Katie and I are very thankful to have people like you all in our lives.  We're still learning about this and honestly don't know what we need at this point.  Once we start the chemo or even just get the schedule, we'll have a better idea of what we might need.  Thank you all for everything so far.

Tuesday, February 7, 2017

Tuesday Morning

So something a little scary happened this morning.  When I first got up, I felt pretty good.  I showered and then put my right leg up on the counter in the bathroom to clip my toenails (glamorous, I know).  I finished up and started getting dressed, then things went south.  I got dressed in the laundry room so the boys could use the bathroom.  When I was about half way done, I got light-headed and my vision started going black around the edges.  My chest started hurting, I started having trouble breathing and then my vision got worse.  I managed to walk toward the living room and couch and it kept getting worse.  As far as I can remember, I went chest first into the arm of the couch and then rolled onto my back and onto the seat of the couch.  I vaguely remember Alex asking if I was ok or not and I think I said I don't know.  I got my senses back a bit later, but was sweating and still breathing hard.  I got upstairs to bed and told Katie what happened.  The more I laid still, the better I felt so I talked Katie into not taking me to the hospital.  After she took off with Robb to work, I got up and started the van.  I quickly realized that wasn't going to work.  I was super light-headed and had trouble catching my breath, so I had Alex pull the keys and I laid back down.  I stayed home till about 10 and made it to work, but it was a long day.

As near as we can figure, when I bent my leg up to my chest it cut off the circulation to everything.  So it was either being cut off or the rush that came back when I moved.  Either way, it was scary and I will most likely be heading to the ER if that happens again.  I still have pain in my chest, but am not sure if it is due to falling on the couch or whatever happened to cause me to black out.  Definitely will be more aware of what I'm doing from here on out.

Monday's U of M Appointment

Monday morning came around.  We got the kids up early and had arrangements for everything all day, so we felt good about both Katie and I going down.  We got the kids dressed and fed, then packed Robb up to drop him at daycare early.  We got him set with Jodi and then hit the road.  I chose to drive since I felt like I could and didn't want to make Katie drive both ways.  The drive went smoothly and we got to my dad's about 9:30.  We stuck around there for a bit and then my dad drove us down to the U of M.  It took about another hour to get down there and I was thankful my dad drove us.  Took a little stress off us and let us not have to worry about traffic or getting lost on the way.

We got down there and finally got to see the doctor.  He explained what he thought was going on and we learned more about the trial.  I signed a consent form to have part of my removed node sent to be checked if I was eligible for the trial.  If I can take part in the trial, it is called the R-Squared CHOP.  The letters each stand for a drug administered.  If I get in the trial, I'd have to be treated at the U of M.  The doctor said it would be 3-4 days down there, followed by 5 days of pills and days of rest after that.  It would be a 21 day or 1 month cycle, so I'd have to go down there roughly once a month.  If I don't qualify for the trial, I'd be getting the same treatment, minus one R, so just R-CHOP.  Katie found this info yesterday: here.  The doctor said I have an aggressive lymphoma, but more tests are needed to narrow down which type of lymphoma.  They have had good success with treatment, but it is not easy.

If I don't qualify for the trial, I could still get the R-CHOP treatment down at the U of M, but it would be the exact same as if I were to do it in Fargo.  So if I get in on the trial, it'll be at the U of M.  If not, I can do everything here in Fargo.  But first, I need to have a PET/CT scan, a bone marrow test and possibly a spinal tap to check how far the cancer has progressed through my body.  Our local oncologist was out today, but hopefully we will hear back tomorrow and get something scheduled for this week.  So now we wait.  again.

The Weekend

Catching up on the last few days.  There has been a lot going on.  I'll start off with the weekend.

I spent most of the day Saturday on the couch.  By bedtime Friday night, my right foot was swollen and looked like a balloon.  Saturday was the father-daughter dance, so I had to be ready for that.  Katie took Eva out to find some shoes and a few other things, and came home with compression socks.  They went just about up to my knee, so they seemed to be big enough and I was thankful.  I popped those bad boys on right away and immediately my leg started feeling better.  I stayed on the couch until I had to get ready and then got my suit on.  Eva had a pretty purple dress to wear, along with new shoes.  She looked so pretty.  I knew how important the dance was to her so did everything to rest up and be ready to go.

This is about the 4th year we've done the father daughter dance.  I believe we started going the first year they had it, and it has been a great time every year.  There is a grand march, the dance with sandwiches and punch, and then we always go to Cherry Berry for frozen yogurt afterwards.  We got there, checked in and lined up for the grand march.  There were tons of dads and daughters there, it was awesome.  We started off in the line closest to the door, but quickly switched when we realized the line on the far side was about half as long.  We got through the line and up on the stage where Eva announced us.  We tried to wait so Katie could get pictures, then walked down the main aisle.

After that, Katie took off and the dance started.  They had a dj playing a lot of upbeat songs.  I did my best to keep up with Eva, but had to call a time-out when she wanted to spin in circles.  I was doing ok standing up, but spinning wasn't going to be a good thing to try.  We danced a bunch and got in line for snacks, which was just fine for me.  We had a couple sandwiches and then danced a little bit more.  I always leave it up to Eva as to when she wants to go.  This is her night so I'll stay as long as she wants to.  She lasted till about 6:40 and then was ready to bolt.  We grabbed our jackets and headed to Cherry Berry.

We beat the rush and were able to get our frozen yogurt and get a chair in the back.  She got all kinds of chocolate stuff on hers while I opted for the fruits.  This is about the only time we go to Cherry Berry, so I let her get what she wants within reason.  After the ice cream, we headed home.  I could feel my leg hurting even with the compression sock on.  We got home, got settled and I headed to bed to lay down.  I was hurting but did have a great time, even though I'm definitely not a dancer.  Eva said she did too, so it was worth it.

The next day was Super Bowl Sunday.  Originally, we had planned on going up to Grand Forks to spend the night with my cousin.  We decided to stay home once our Monday appointment in Minneapolis was scheduled.  Katie and I were really disappointed because we love visiting my cousin, but it was better to stay home and rest.  If we went to Grand Forks, we probably wouldn't have gotten home until nearly midnight.  And with us having to get the kids up earlier than usual and being on the road by 6:30, it just wasn't going to work.

Katie had decided to make a bunch of food, which was all awesome.  She made a beef brisket with cole slaw, a vegetable platter, a shrimp platter and spinach artichoke dip.  She did awesome.  I ate more than I had the previous few days.  We snacked pretty much all afternoon, then watched an amazing game.  The kids lost interest, but we watched right up until the Pats took the win in OT.  Even though we hadn't made it up to Grand Forks, it was still a really fun day.  All thanks to Katie.  It really helped take our minds off of what was going on.

Sunday, February 5, 2017

Kids & Waiting

We told the kids on Thursday night.  Eva had a visit to the Plains Art Museum for Girl Scouts, so I took her down to that.  It was interesting.  Lots of things to see and the teacher in charge of it did a really good job keeping the girls interested.  I've been in the museum a few times, but never took the time to walk around and see everything.  It was fun.

I got home with Eva about 8 and we told the kids we had to talk to them.  We put Robb in bed because we didn't think he'd understand anyway, and told the kids.  It went about as expected.  Nick and Alex took it well.  They had a few questions, but overall understand what's going on.  Katie and I think it will sink in a bit more when I start getting sick from the chemo, or whatever it ends up being.  Eva took it pretty hard.  Lots of tears, a few questions and she was obviously really sad.  We kept explaining that we're doing everything we can and I should be ok after treatment, but it was hard on her.  But we're glad we did it.  They are old enough to understand and deserve to know exactly what's going on.  Eva was a little sulky on Friday but seems to be doing better today.

Eva and I have the father-daughter dance tonight.  I'm having a lot of swelling in my right leg today, so I'm laid up on the couch with it elevated.  I'm hoping to make it through the night.  There is a grand march, pictures, the dance and they we go to Cherry Berry for desert after.  Will do my best to get through it.  We were hoping to go to my cousin Andy's in Grand Forks tomorrow for the Super Bowl, but we're going to play it safe and stay home.  There's lots of cleaning to do and trying to prepare for Monday's appointment.  We really wanted to go up as a family and try to keep things normal, but no such luck.  Andy and Mary are great so we feel bad about not going, but they understand.  So we'll be watching from home.

So to plan ahead for Monday, we had to do some work and ask for some help.  The plan so far is for Katie and I to leave around 6am, drop off Robb at daycare and head to my dad's place.  He'll take us down to the cities from there for my appointments and we'll head home whenever we're done.  If they want me to stay down there for something, Katie will come back that night and we'll figure it out from there.  Thankfully, my dad is able to cart me around.  We wanted him to sit in on the appointments too so he knows what's going on.  Chances are, he'll be stuck taking care of my butt after treatments so we wanted him to know what's going on too.

We've had a lot offers to help which has been amazing.  We're honestly not sure of what kind of help we need yet.  Once we start treatment, we should have a better idea of how it will go.  For now, we're playing it by ear and will plan as far ahead as we can.

Thursday, February 2, 2017

Some Good News

So we met with a local Oncologist yesterday and things seem to be positive for now.  He believes the type of cancer I have is treatable and curable.  By doing the standard tests here in Fargo, I'd have about a 50% rate of beating it.  By going to the U of M in Minneapolis, that goes up to 75%.  So Katie and I are heading down to Minneapolis on Monday to get started.  We have an appointment at 1pm, with labs at 12:30.  We're hoping to get more information on the type and stage of the cancer, then some insight on when treatment can start.

The doctor up here gave us a little information on what the treatment schedule might look like.  He said it would probably be 1-2 days of treatment and testing every two weeks for around 4 months.  Even knowing just that little bit makes me feel better.  I enjoy schedules and following them, so it is good to know what it might be like, no matter how much it will suck.  I'm glad it will be in Minneapolis.  We have plenty of family and friends down there to help keep my spirits up, so that will be good.

So far, I've told my immediate family and some good friends.  We are telling the kids tonight.  We wanted to have some idea of the prognosis so we could be honest with them and give them some idea of what to expect.  Katie and I have our ideas on how they'll react, but are not entirely sure.  We've emailed their schools already to tell them what's going on in case they have a hard time tomorrow or in the upcoming weeks.

I also told my company this morning.  They have been extremely supportive and helpful, and I'm thankful for the team I'm on.  Going forward, it is good to know they are here for me if I need them.

Wednesday, February 1, 2017

Apointment Today

Just a quick check-in.  I called my family last night, which sucked.  Everyone is very willing to help and was supportive.  Still wasn't easy to talk, but I wanted to talk to them directly rather than some stupid Facebook post.

Heading to the oncologist at 2:30 today.  We should have a few more answers and hopefully a plan moving forward for treatment.  Or at least somewhere to start.  We're waiting to tell the kids until we have something in place.  Telling them last night wouldn't have done much good; we don't know how bad it is, how to treat it or how the treatment will work, so we held off saying anything.  Once we have a solution, we'll break the news to them and probably everyone else, neither of which I'm looking forward to.

Back at work, trying to stay focused (not working, obviously, since I'm taking a quick break to write this).  Getting more uncomfortable sitting with the swelling in my leg getting worse, but my incision seems to be healing just fine.  It's tough not pealing back the super glue though.  It doesn't itch, it's just the satisfaction of scraping it off.  I should be able to do that this weekend so that will be nice.

Not sure what to expect today.  Trying to stay upbeat and positive.

Tuesday, January 31, 2017

Follow Up & Results

So I had a follow up appointment today with the surgeon that did my surgery last week.  My incision looks fine, he said to wait until the weekend to peel off the super glue.  He then checked for my results and the shit hit the fan.

The doctor used a lot of words I didn't understand, all technical terms.  The 2 I did understand were Lymphoma and positive, so that's where my day went south.  He didn't touch on how bad, treatments or anything like that, just gave me the positive diagnosis.  Although he may have said more.  It was mostly I didn't understand or stopped listening.  Thankfully Katie was there with me otherwise I would have probably been useless.  She got me scheduled to see an Oncologist and I tried not to lose it in the waiting room.  Thankfully, we were able to get in tomorrow, so we won't have to wait very long at all.

I headed home and tried to call my dad, but couldn't get a hold of him.  I didn't know what else to do, so I went back to work.  I talked to a few guys there and let them know; two of my managers and another guy that is fighting cancer as well.  All three took it hard, but were very supportive.

So now we wait.  I'm going to call my family tonight and fill them in.  Not sure when to tell our close friends or people I work with.  Or how for that matter.  I know I won't be able to handle talking to too many individually.  I think we'll wait until after tomorrow's appointment when we hopefully have a gameplan for treatments.  It will be easier to explain after that.

Post Surgery

So here it is Monday night already.  I kept meaning to check in, but never sat down and gave myself the chance to.  So here goes.

We got a Thursday morning saying we could come in early if possible.  Katie and I shoved the kids off to school, dropped off Robb at daycare and headed to the hospital.  We got there maybe 20 minutes early so it didn't really change much.  We checked in and got called back, so I got to sit around naked in a chair for a little while.  The nurse did some tasteful shaving of the area and Katie came back to wait until it was my turn.  While we were sitting in the pre-op room, Katie got a call saying Eva had a fever at school.  She explained what was going on, so she was going to have to hangout for a while in the nurse's office until she could get away from me.  I wasn't really worried about surgery; from what the doctor explained, it was pretty simple and straight forward.  They chose to remove the lymph node from my pelvis area, mostly because it was the easiest to get to and would be the least painful for me to recover from.



After some waiting with Katie, they wheeled me into the surgery room.  People were hustling around getting things ready, but they were all very kind and upbeat.  I remember scooting off the movable bed I was laying on to the operating table and laying down.  They moved my  arms around a bit and put a mask over my face.  That is about all I remember.  It felt like I was awake and alert one second, and gone the next.  I remember waking up in the general recovery room next.  The nurses noticed I was up and came over, but I'm not sure what I said.  Probably something incoherent and embarrassing.  I think I went back to sleep and woke up in a different room with Katie there.  I know I had to pee before I left, so they gave me some water or juice and some toast to test my stomach.  Everything came out ok and shortly after they sent me home.

This is where it gets a little weird.  I know we had to stop at the pharmacy at West Acres.  I know I stayed in the truck while Katie went inside.  I know I had my phone.  I don't quite know how I managed to email my bosses at work that I was on my way home.  I guess I rambled on about how much I enjoy working there (which is true) and that I appreciate their patience with all of this (which is also true), but I don't remember sending it.  I think I texted my dad, too.  After that, I remember getting home and climbing into bed and it was dark for a while.  And I was ok with that.  So if you got a random email or text from me on Thursday, that's why.



The rest of the day and weekend went pretty well.  I wasn't feeling much pain, even after my meds wore off.  I took a hydrocodone mostly to stay ahead of the pain I was expecting, but all it really did was upset my stomach.  I had a hard time sleeping Thursday night, but eventually conked out and actually slept pretty well.  Eva stayed home with me Friday due to her fever, I think we both slept most of the morning, but I stayed in bed the rest of the day just trying to rest.  I felt really good, but didn't want to tear open the incision or anything.  I managed to empty the dishwasher, but otherwise slept for the most part.  Saturday and Sunday were about the same.  Not much activity, Tylenol here and there for pain.  Come Monday I was ready to get out of the house and back to work.

Monday went fine as well.  It was nice being around everyone at work again.  I had only told my managers about what was going on, but there is a great guy that is dealing with cancer that I talked to for a while as well.  He understands what's going on and talked about his experiences so far, and I'm very thankful.  We're not giving up hope yet, but I think both Katie and I understand it is a real possibility.  Joe pulled me aside and talked for about 30 minutes and it was nice.  I also had to take Robb to an appointment, but moving around has been a lot easier.  My incision feels fine, but the swelling in my leg has kept up.  It is starting to limit movement in my leg so that is pretty annoying.  Right now, it is right in my hip so I don't have full range of motion there but hopefully we can figure something out to get the swelling down.

I'm finishing this Tuesday morning.  I have an appointment with Dr Dees (who did the surgery) and 10am this morning.  I don't know if I'll get any results or anything yet; I think it is just a follow-up appointment to make sure I'm not doing anything stupid and my incision is healing up.  I'm trying to stay calm but I keep bouncing around.  Part of me just wants to know, the other never wants to find out.  I'll check in once I hear back.

Wednesday, January 25, 2017

Night Before

Alrighty, just sitting here the night before I go in.  Registration is at 8:30 tomorrow morning, surgery at 10:00.  It is supposed to take an hour, then 2-3 hours of recovery before I can come home if everything goes well.  Not sure how long it will take to learn what's going on, but hopefully it'll be soon.

Last night, the swelling in my right leg really got worse.  I can definitely feel the swelling in my thigh, pushing on my knee cap and in my calf.  Not to mention a full fledged cankle.  It's pretty impressive.  It feels pretty terrible.  I can also feel a lot of pressure in my foot too, which already hurt most days.  So yeah, anxious to see why everything is so swollen.  Still hoping it isn't anything too serious.

So no foods or drink after midnight.  Being the over-achiever I am, I stopped at 8.  That and I didn't have much of an appetite.  Just have to shower and wipe down with some weird towels they gave me, then we'll see if I can sleep tonight.  Woke up at 2am this morning and my brain wouldn't shut up, so I'm hoping it'll be different tonight.  No matter what, it's go time tomorrow.  I'll check in when I'm not too drugged up to type.

Sunday, January 22, 2017

A little background

So here we go.  In August of 2016, I was working on getting into some kind of shape (besides round) and was running pretty consistently.  One morning, I was stretching and felt two or three lumps on the inside of my upper right thigh.  They felt weird and out of place, so I talked to Katie and she encouraged me to see our doctor just to get them looked at.  I went into our doctor and he said we should keep an eye on them.  Blood tests came back normal, everything pointed to nothing being wrong.  So we kept an eye on them and got back to our lives.

In October of 2016, I volunteered to coach my son's basketball team.  It was a parks rec team, but it was competitive so I really wanted to teach my boys some basics and win a few games for them.  Practices were two nights a week and games on Saturdays.  This is when I first noticed the swelling in my right leg.  I'd take off my sock in the evening and it was like I had had a rubber band wrapped around my upper ankle.  Most nights, it was just a little indentation, but some nights it was up to about a quarter of an inch.  This was just from the elastic band on my sock, which most aren't tight at all.  I tend to wear socks longer than I should so loose elastic is pretty common unless I get a new pair or three.  I didn't tie the swelling and the nodes together at this point.  I could still feel a couple swollen nodes in my leg if I tried, but they weren't painful so I didn't think much of it.

So the new year rolls around.  The swelling in my right leg has gotten worse.  I'm still getting the ring around my ankle from my sock, but can also feel it in my calf and thigh.  It had started getting painful and my leg was starting starting to feel like a sausage; it wasn't terrible yet, but I figured I better schedule another appointment to get checked over.  I'm getting older, I don't bounce back as quick as when I was in my 20's and with Katie and the kids, I have more important things to worry about than just myself.  So back to the doctor I went.

Our family doctor took a look and noticed the difference between my right and left legs was noticeable.  My right thigh measured 7-8 cm larger in circumference than my left thigh, and the nodes he felt were bigger and more concerning.  Blood tests showed nothing; I think my CO2 levels were a little high, but everything else fell into the expected range of being normal.  So along with the blood tests, I was scheduled for an ultrasound and CT scan.  Two weeks ago, I went in for my scans.  I did the ultrasounds first and the tech said she didn't see any blood clots, so that was good.  Next came the CT scan.  I drank the barium dye (or whatever that nasty stuff is) and did the scan.  I got in to see the doctor and get the results the next week.  He said based on the size of the nodes, I should have one taken out so they can look at it and get a better idea of what is going on in there.  Not just a biopsy, but taking the whole thing out.  Made sense to me.  With the swelling getting worse and the pain increasing, I knew something had to change so this is where we're at.  We're all caught up.

On Thursday of this week, I go in to have a lymph node removed.  It will be one of the few surgeries I've had in my life.  I had my shoulder scoped in college, had screws put into my pinky after I broke it during practice and had the big V a few years ago after Robb was born.  Other than that, I've been pretty healthy, so this is fairly new to me.  I think I'm fine with having the surgery.  I'm not very worried about going under (or staying awake), about the pain or even the recovery.  I think I'm more worried about what comes after the surgery.  What is actually wrong with me.  Do they find something wrong that is causing the swelling?  What is the treatment going to be like?  Do they not find anything, my leg just keeps swelling up, and I just have to suck it up and deal with it?

Then on top of that, how will it affect my family?  I'm gone 4 nights a week most of the time, running kids here and there.  I'm guessing I'll have to take a few steps back for a while at least, but who knows.  I'm just trying to take it as it comes and deal with what is dealt my way.  I know Katie and the kids will be here to help.  I know the rest of my family and friends will be here too.  I'm hoping I can suck it up and get through it as well.

I'm starting this blog thing now because I figured it might be interesting.  Both for me and the people around me.  I'm hoping to share the struggles and hard times, but also hope there will be more good times and successes that will outnumber them.  Honestly, I hope after Thursday things will be just fine and I can delete this blog.  But just in case, I may as well keep track of what I'm going through.