39, chemo, radiation, rocks and vistors

This is kind of an all over place post....It's long. There is your warning.

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Yesterday was my parent's 39th wedding anniversary.  We celebrated at their house with a family dinner (thanks Bub for cooking!).  Here are a couple of sweet shots of them taken by a family friend about a week ago:

They are pretty cute, huh?

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Tomorrow morning Dad officially starts chemotherapy.  The chemo is a 5 day on/25 off treatment plan.  The 5 on is broken up into two parts.  First, he will have a four hour session in the oncologists office in what I am affectionately calling the "chemo lounge" - it's a big room with a bunch of recliner's in a horseshoe with patients hooked up to IV bags.  My mom got him an iPad for their anniversary so hopefully that will help pass the time.  They will give him some anti-nausea medication through the porta-cath before they start and hopefully that will help with any chemo related nausea.  He already has enough nausea as it is.  The chemo drug being administered during the 4 hour session on Day 1 is called Cisplatin.

Once that part is over, he will be hooked up with a 5FU pump (basically a fanny pack type deal going straight to the porta-cath) that will continue to administer a secondary chemotherapy drug 24/7 through Friday.  Friday, he will return to the office to be "unhooked" from all of that.  The chemo will continue to work in his body over the following 25 days, and all the possible side effects will still remain, but the "active" part will be done.

We are expecting increased nausea and fatigue to be the major side effects of the chemo, but we have been told repeatedly that everyone handles chemo differently and we are hoping that his body tolerates it well.

Ideally, the chemo will attack any cancer "seeds" that we cannot see on the scans as well as attacking the cancer in the lymph nodes and blood.  Chemo is a whole body treatment meant to kill cells that divide rapidly, one of the main properties of most cancer cells.

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The second part of the treatment plan is Radiation, which will be used to focus on attacking and eliminating areas where the cancer is present.  In Dad's case, the focused area will be the main tumor at the esophagus/stomach area as well as the liver.  Last Friday, we met with the Radiologist and discussed this part of the treatment plan.  Since the cancer is not in the bone, the Radiologist feels comfortable being "very aggressive".  The basic plan is that Dad will have radiation every day, Monday through Friday, for 5 weeks for the esophageal part of things.  Radiation treatments will start this week and run concurrently with the chemo.  Also within the 5 weeks, there will be 5 days of "radio surgery" to attack the spots in the liver.  Radio surgery is similar to standard radiation, except the dose per "fraction" is 5x that of regular radiation.  We learned that the liver is typically good at tolerating radiation and the spots in the Dad's liver are not large so we feel fairly confident in this plan.

If the radiation is effective like we are hoping, it's possible that Dad could begin to feel some relief (from the tumor getting smaller and some of the pain decreasing) in just a few weeks.  Ideally, the tumor will shrink and the pain will decrease to the point that he will want to eat normally again and hopefully over time, we won't need the feeding tube.  That might be getting ahead of ourselves right now, but that is the pot of gold at the end of the rainbow that we are striving for.

We are anticipating increased nausea and fatigue (again) from this treatment as well.  Everything related to cancer seems to bring nausea and fatigue.  They are cancers unwelcome amigos.

The other unwanted, but expected result from the radiation is the "radiation effect", a sunburn feeling (inside and outside the radiated areas).  This will go away a few weeks after the radiation is over, and hopefully the tumor will be gone then too.

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After we met with the Radiologist, Bub, my parents and I crammed into my parent's car and I read a note from a good friend of mine out loud.  It said:

"Dear Amber,
These are for you to do whatever you like.  I held them when I went thru radiation for my brain tumor. I think they work. We are praying and thinking about you guys every day."

The day before she had left the note and these silver stones at our house.  The four of us each picked one.  Bub picked miracle, my mom picked recovery, and I took magic and gave my Dad comfort. (He wanted to be last to pick).

It was really special to us that she had passed on something so meaningful to her.  I am not calling you out by name here, but you know who you are and I want you to know that it meant a lot to us.

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I don't know how to handle this last part of the post with the most tact or sensitivity, so I'm just going to be honest.  Dad is not in a place right now to have visitors.  Part of that is because he needs to get all the rest he can to keep his immune system strong enough to fight the cancer.  Part of it is because he has waves of incredible pain throughout the day and has almost no energy.  Aside from a few hours in the morning, he is pretty lethargic and even the smallest activity really wears him out.  Part of it is that he is still processing all of this mentally and just isn't in a mindset to have people over.  He flat doesn't feel up to it. 

Once we get past this first few weeks of treatment, hopefully that will change.  We don't want to hurt anyone's feelings and we are beyond grateful that there is so much love and support for him on this journey.  But, if you know him, you know that he is a pretty proud and stubborn guy and being "sick" doesn't really line up with that.  (For the record, his stubbornness and pride is not easy for us either!)  But, his toughness and feisty nature is part of what he needs to fight this battle and part of what makes him the survivor he is. He needs some time to adjust and he needs to be able to call the shots on what feels comfortable for him and we want to support that. 

We'd love to get to the place where we can set up some Skype and phone call sessions that work with his energy level (early am).  We are not there yet, but hopefully we will be.  I'll keep you posted on that.

Thank you for the prayers, thoughts, hugs, comments, messages and Team Poppa photos.  If there is any certainty in all of this, it is that we know for sure we are loved and supported.

....Team Poppa