# 13 Locks for Lymph

I had a couple of friends mention that they would cut their hair when it was time.  I didn't think much of it.  Apparently they weren't kidding around. Guys started showing up at the house tonight wondering where the clippers were.  Even Colter and a couple of his buddies ended up getting in. 

Gathering of Noggins 2012

Thanks Guys!

# 12 Bending Air

The inevitable began,  I started loosing hair.  We first noticed it on Friday evening and it just seemed to come out easier with each passing hour so we, (the kids and I) decided that it was time to make our move and proceeded to get down to business on Sunday evening.

I believe the initial plan was to cut an arrow in my hair and make me an "air bender".  I figured I had bent my fair share of air, and supposed that it made sense, but also wondered if I should be offended.  I was later informed by Colter that his siblings were trying to make me into a cartoon / movie character and that I should take it as a sign of great respect.  Respect or not, it didn't take long for the hair to fly once the clippers were turned on.  To be honest, it was a pretty neat moment to sit back and just listen to the kids giggling with three sets of hair clippers buzzing away, and watching a pair of scissors fly past my face like Maverick buzzing the tower. I should probably qualify "three sets" by mentioning that at one point, Hudson was trimming my arm hair with the nose hair clippers. It was pandemonium baby! (Dicky V) and I loved it.

Hudson & Gracie getting their clip on!  Thanks for the pic Ellie.

Angie and I made a trip to MDA on Monday to meet with the radiology oncologist so we could discuss whether or not I would require radiation after the chemo.  After visiting for a while, we determined that I had a hot date with a proton accelerator.  I'm not scheduled to get zapped for a few months but I was able to get Dr. Peter Venkman and Egon Spengler for the procedure.  Seriously, who else was I going to call?  We spent quite a bit of time talking shop about the accelerator.  The doc was more than happy to go get her personal Macbook and share a presentation she had developed. Bottom line is that they have an incredible amount of precision from the leafs they use to shape the beam pattern as it is making it's sweep across the target.   The other comforting thing we learned is that the radiology oncologists operate much like the lymphoma department and that she would be presenting my case to a handful of her peers and developing/agreeing on a plan of treatment for me.  I like consensus when it comes to lymph.        

After we visited the Rad onc. we headed up to the lymphoma unit, donated some blood and visited with my lymphoma oncologist.  We had a good visit, everyone was smiling as things seem to be going well.  The takeaway from the visit is that the first treatment sets the tone for the rest of the regimen. since I handled the first cycle well,  I should expect to handle the remainder in a similar fashion.  Fatigue will still be an issue, but it doesn't appear as though I will have to suffer through some of the rougher side effects.  I also walked out of the office with a couple of new drugs to try to help with mouth sores, and something else that I can't remember. (hopefully short term memory loss).

Side notes:

• I have introduced a bias into my otherwise solid scientific study.  I have knocked down 4 more miles of running this week.  Probably not a big deal, but it feels like one.
• Apparently the steroids are working,  I have put on 10 pounds in the last 3 weeks.  This accomplishment is in no small part due to the awesome people that have treated us with the 12 days of Christmas and have been loading us up with goodies.  Thank you, we love you.  Both of our freezers runneth over, and the belt straineth.

Angela May Merrell,  bringing it on game day.

Ok,  so it isn't all that exciting.

# 11 Lymphing Along

Even though we have been through the first treatment, it still feels like our home is gearing up for the long haul.  Part of that feeling may have come from Angie's desire to get family pictures done.  The pictures went as good as one could expect. Marci Freeman was great. Check out the rest of them HERE.

Brady Bunch

I believe most of the push for pictures was for fear that I would be losing my hair soon. I have suggested that I take matters into my own hands and just cut it all off but Angie was able to talk me down. We haven't spent much time discussing why she took a "no cut" stance and I don't know that we need to.  Clearly her preference would be for me start loosing large chunks of hair working at my desk or in a meeting rather than suffer any embarrassment loosing it at home on my own terms.  Who knows, maybe I can start a new men's hair trend where it appears as though you just combed your hair with a lawn trimmer and got a little too close.  Call it the Whack or the Napalm? Should be interesting.  I think I will knock it out this weekend.  It might be fun for Gracie and Hudson to develop a new skill set.

I have been wanting to get out and run a little bit to get an idea of where I am at physically. I know I have taken quite a nose dive since July.  I decided that I would try to run a week after each round of chemo.  I had Gracie on her bike as my pace setter this week and was able to run most of a mile. It was tough.  Muscle fatigue hit me about 300 yards in.  It was a different kind of tired.  I didn't really get any burn, it was all just shakes.  The other odd thing was that I didn't get sore muscles but my bones ached. I am interested to see where I am in the coming weeks.  As this is a purely scientific study,  I have sacrificed any additional daily exercise as to not skew my twice monthly run performance.  As a side note; my resistance training doesn't appear to be affected in any way.  I picked up a 20# kettle ball at sports academy and was fatigued after one bicep curl. Everything seems to be on par with pre-C conditioning.

Next Ups

• Buzz cut
• Appointment with Onc, Radiation Doc, Blood work on 17th.
• R-Chop round two -20th

#10 The little stuff

I have been told by several people that it usually takes a few days to bounce back from a treatment.  With that in mind, I had planned on spending Saturday in the Hospital getting an expensive lube job, and Sunday/Monday at the house doing whatever it is that chemo patients do.  I experienced some brief, albeit violent retroperistalsis on Sunday evening but once it was over, I felt somewhat "normal".  I was able to make it to church on Sunday and on Monday morning I made the decision to go back to work.  I wasn't feeling great but I knew I would feel worse if I laid in bed thinking about it.  Work went well.  I think there were a few people surprised to see me back but all in all, it was business as usual and then I started to notice a few small things that reminded me that I was still a patient.

• Skin peeling like a sunburn on my fingers.
• A flushed face,  again, feeling like a sunburn in the evenings and mornings.
• Waking up with itchy hands that are red as if you have held them in hot water? (thanks Greg, and Dr. Sheffields)
• Mouth sores!  My mouth has felt like an oral minefield the last few days. 

The most surprising thing about this week has been some signs of mental stress.  I am about 50/50 for having dreams about chemo.  I'm not talking about some indirect tie to treatment,  I am talking about full on, connected to the port, tubes, meds, heat flashes, and a general feelings of terribleishness.  Nothing makes the body feel more refreshed and rested than a chemo dream.  I thought I was handling things well but apparently there is more to it.
 

#9 - First 100 Patients Go Home With a Free Bobblehead

I am told that I survived yesterday.  I was skeptical at first.

We had a pretty early start yesterday morning.  I received a call on Friday night asking me to arrive an hour earlier than scheduled to get a quick chest X-ray before we started chemo.  They wanted to double check the chemo port to make sure the tubes were tubing, and the ports were porting to the right vein.  After being sent on a self guided tour of the ½ mile long skywalk by Officer Friendly at the main entrance, we were redirected by security to go back to the correct location at the main entrance.  Apparently, Angie appeared sick enough that we caught a golf cart for patients to be shuttled back and forth, and made it to the diagnostics area in plenty of time.   The chest X-ray, from waiting room to exit was all of 3 minutes max and we were off to chemo.

After a small fuss around with the chemo port (due to some swelling) the nurses used an inch long needle that resembled a modified fish hook to pop through my skin and access my port.  I could instantly identify with the Upper Kenai Reds that I had “innocently snagged” in Alaska. I didn’t do as much fighting as the Reds did (Maybe one or two flops).  The port turned out to be great.  I couldn’t feel anything and it freed up both of my arms.

After getting hooked up I was good to go.  We got started about 9:00.  The nurse started us off by hanging all the bags of meds above the IV cart and taking her time to tell us the order in which they would be pushed.  The only one I focused on was Adriamycin. Who wouldn’t be focused on the only bag with colored meds and a nick name that associated it with Death, the Devil, and a Dragon?  It basically has street cred, & they saved it for last. In a way, I suppose it gave me something to look forward to.

The basic scenario:

• The nurse would tell me which drug she was dripping and how long it would take. (in hours)
•  I would acknowledge that I could decipher her heavy accent from somewhere abroad, and that her pronunciation of medical drugs was impeccable.
• We would both smile at each other in a moment of awkwardness
• Doze for a while, 
• Urinate for a while
• Urinate again,
• Finish the drip (medical IV drip)
• Nurse would return and again tell me that she was now starting something else.
•  Rinse and Repeat (6X)

"Peace, I am a loser" hybrid hand sign

It was pretty uneventful with the exception of a few reactions that we had to stop treatments for.  I started to get itchy ears and throat so they loaded me with some Benadryl and gave me a 30 minute timeout for being a bad patient.  I also experienced some huge temperature swings.  At one point I dropped the sheets, tore off my socks and was pretty convinced that the only thing that was going to cool me down was to lay on the floor, which my nurse wife would not allow.  I didn’t realize how bad it was until I asked the nurse if we could drop the temperature.  She paused and looked at me like I was joking and told me the room couldn’t be turned down any further.  I turned and looked at Angie, who was out of my view from the bed.  She had the hood from her hoodie pulled on, my extra long sleeve T and a blanket.   It wasn’t 30 minutes before I was freezing and asking to warm up the room.  I was given 3 heated blankets which seemed to help until I started to overheat again and reverse the thermal roller coaster.

After we finished off the Dragon, we packed up our stuff and walked out @ 5:30.  The only noticeable side effects were that I felt like a bobble head, and my brain was in slow motion.  For example, when I finally made it home and tucked into bed,  I watched one of the Spanish channels for 15 minutes or so before I realized I couldn’t understand what they were saying.  The Spanish version of "Cody Banks Secret Agent" is just as mesmerizing as the English version.

A few hours later I was feeling terrible, Gracie was struggling with a fever and the house was in disarray.
People in our lives are not there by coincidence. We are blessed with our circle of friends . That was evident as our friends came to the rescue.  Although miserable, I loved to hear the voices and the noises of those special families in our home.

********** Other Lessons Learned****************

•  It is evident that Angie has not driven a manual vehicle on a regular basis for some time.  It would appear that the 4 cylinder Mazdaratti 3 is more power than she can handle.  The bobble head side effect was evident on the drive home.  Please don’t tell her that I said this. 
•  Lemon flavor drink mix and saltine crackers of all things,  do not sit well on a chemo stomach.  The synergies are near nuclear.
• Confirmed:  My wife and kids are still the most important things on the planet.

#8 The Real Plan

Saturday morning 11/30 @ 7:15am.    Bring on the Red Dragon.

#7 The Plan To Make a Plan

We made a visit to MD Anderson again today for more blood work and to meet with Dr. Fowler.  Dr. Fowler explained that my mass biopsy was showing some atypical results for Hodgkins and for B-Cell lymphoma but ultimately diagnosed it as Large B Cell Lymphoma. (as we suspected)

It is nice to finally nail things down.  RCHOP therapy will likely start tomorrow, or Saturday, or Monday or another day in the near future.  It will be an outpatient therapy that occurs every two weeks.  As we were trying to come up with a date, we discussed the side effects of chemotherapy.  Among a number of other issues, we discussed cumulative fatigue. Fatigue will kick in and will become more difficult with each consecutive treatment. I wast told to expect to bounce back pretty quick after my first treatment.  I don't know how I will play this with Angie.  My original plan was to be fatigued for two weeks after the first treatment.  I still think I will go for it and see if she catches on.  What do I have to lose?  After all,  this is the level of moral support I am getting these days (see below)  :)  Actually this is proof of cumulative fatigue for her extremely high level of love and support over the last 60 days.  

At the ready in Dr. Fowler's Procedure room. 11/29

Anyhow,  I would like to get a Thursday or Friday schedule so I can recover over the weekend and get back to business the following week.



********* Other Tidbits

• Bone marrow biopsy is clear
• The biggest thing going on the internet the last few days is here: http://www.facebook.com/ellie.merrell.37?ref=ts&fref=ts
• I have learned quite a bit about Ellie from her Facebook account in the few days that it has been up.  She apparently resides in Dallas Texas and has turned vegan.  

#6 Enter MD Anderson

I am extremely thankful for the five different doctors that helped me get things figured out.  Besides the weight loss (which has stopped) and the night sweats (which have dropped in frequency)  I really don't have anything else that would indicate something is wrong.  I wonder how long I would have gone not knowing that there was something moving in on my turf.  I appreciate their help and feel almost a guilt leaving their care but we have opted to move to another health care provider.
 When you have the worlds largest lymphoma center within a 30 minute drive, the logical choice is to make the move.  We met with Dr. Fowler on Tuesday the 27th.  Dr. Fowler is 1 of 10 Lymphoma doctors at MD.  We spoke with him for 30-45 minutes and every question was met with an answer and a drawing of how things work and what our options were.  All new cases are presented to the 10 doctors and pathologists for agreement on a treatment plan.  It was encouraging to know that 10 of the best lymphoma doctors would be reviewing my case on Wednesday. 

We were presented with a couple of different chemo scenarios pending the opinion of the MD pathologist.  The mass biopsy results that were processed several weeks early were mixed results and MD wanted to make sure we cleared everything up prior to settling on a treatment plan.

The two plans that we are looking at both last 6 months and are followed by a radiation cycle to blast whatever scar tissue is left over from the swollen lymph / mass / tumor.

Plan 1 - Chemo treatment every 15 days, outpatient procedure
Plan 2 - Chemo treatment once a month but requires hospitalization for several days.

The next step is to give some additional blood tomorrow and follow up with Dr. Fowler on what the lymphoma group decided we should do.

#5 Double Whammie Wednesday

In an effort to take steps towards establishing a treatment plan, we opted to schedule a bone marrow biopsy and a Power Port placement surgery on the same day (11/21).   I can't deny that it was hard to sleep the previous night.

The bone marrow biopsy was a second effort to confirm the negative results from the Pet scan the week prior. I had heard quite a few stories about bone marrow biopsies, none of which was encouraging. Again,  it seemed to go very smoothly.

• Physicians love naked people - Undress
• Put this gown on
• Lay on this table
• Find love handle , check,  move back a few inches and start local anesthetic.
• Drill Bone
• Pull marrow out like a wine cork.

I had expected the procedure to be quite painful.  The only thing that really bothered me, and it may have been more out of personal irritation was the doctor tapping on my hip bone while he was numbing me up.  As he was injecting the makeyounumb-acain around the affected area, he took the time to tap my hip bone 4 times with his needle while asking me "do you feel that".  My first instinct was to answer, "how could I not?  You are poking my bone with a needle before you have finished numbing me up and my entire body can feel that", but I managed a "Yep!"   The rest went fine.  The doctor took a few minutes to bore down through the outer bone and into the marrow and then pulled the needle out and dumped some very dark red chunks of bone into a sample cup.  It was pretty cool to see.

Flash forward 2 hours and I was getting prepped for the port placement surgery.  Chemo Ports are used to make the administration of chemo-therapy drugs, and blood draws a little easier.  Chemo drugs have a tendency to wipe out your veins over time and this is apparently a better option.   The port itself is a small triangular cup with a membrane and a catheter that runs into one of two veins that bring blood back to the heart.  It is installed under the skin a few inches below your collar bone and sewn into the muscle to hold it's place.  Hey it is made of titanium and is power injectable!  How bad can it be?
 http://www.bardaccess.com/port-powerport.php

***Angie thinks she is funny****
Prior to the port procedure, Angie explained to me how they disrobe the patient, put them in stirrups to help with breathing and then install a giant catheter to help drain all the fluids they will have to push.  This wasn't the comforting information I needed prior to surgery.  It was apparently great medical humor, of which I didn't pick up on.  Angie was quite amused with herself as she explained she was "just playing" with me.  Pretty low Ang,  picking on the sick guy. :)



I remember being wheeled into surgery, having my arms tucked into my sides and that was it.  I woke up feeling like I had just had the best nap of all time and I was ready to go home.  We waited for a few minutes and headed home to get ready for Thanksgiving.



  

#4 Radioactive!

Angie and I met at the One Step Diagnostics Lab in Sugarland to take care of the PT scan.  I was asked to fast again.  Angie thought ahead and brought Marie Bench's killer cake (the whole thing) for me to eat afterwords.  Once we got checked in, things seemed to move like clockwork.

• Come on back,
• Roll up you sleeves.
• Start IV
• Push Radioactive Tracer through lines and wait 45 minutes.
• Hop in the PET scan machine and hold still for 30 minutes.

It was interesting to watch the tech move two lead lined casks that weighed 80 pounds a piece for two small vials of radioactive tracer.  It was also ironic for me to be getting injected while listening to the tech explain to Angie to stay away from me, and that I would be highly radioactive for several hours.  I was covered up with an electric blanket and put into recline mode to wait for the tracer to run its course.

I have found that it is in those moments that your head clears up and you get to analyze.  Up until those moments, you are busy trying to get scheduled, take the next step, make logistics arrangements with kids /work etc. When you finally get hooked up, or when you are spending time in the CT machine holding completely still, you get a great opportunity to count blessings.

The song "Radioactive" by Imagine Dragons has been a #1 or #2 most played song at our house for the last several weeks.  It has a new meaning when I hear it now.

Angie and I asked the tech for copies of the CDs so we could take a look at the images.  The tech hooked us up with the software and we ran home to take a peek.  My initial reaction was completely shocked when I could plainly see two large tumors in my pelvic area, and additional hot spots running up my spine and into my lungs.  In my eagerness to do a quick survey, I moved the small slider controlling the depth and height of the 3d image too quickly.  I had mistakenly identified my kidneys and my ureters as my lungs and spinal cord.  Shock and ,,,,,,,, AHHHHH,,,

Everything else showed as clear, and confirmed by a physician.   I don't recommend attempting to read pt scan images.

As it turns out, Pet Scans don't do a great job of finding cancer in bone marrow so I was scheduled for a bone marrow biopsy to confirm.