Monday, December 10, 2012

Chemo begins

Day 3 since Chemo started! Phil is doing very well side effects wise! We hear the beginning isn't as bad as two wks in, so we are enjoying this time now. Some are amazed by his lack of nausea, I have to agree! We have decided not to talk too much about what he will go through with this process but instead, expect the best. There is no need to let Cancer rule over us as a constant storm cloud.

He is very tired and sleeps a lot and deeply. I love seeing him that way, so at peace- His body heals slowly with his eyes closed. He is eating very well and that too, is rare. All good surprises thus far. The main issue is pain control. The pancreas tumor rarely bothers him, but the one above his heart does.

According to the newest cat scan that tumor has grown since his last scan in Nov. It is not a circle like a imagined but rather weird shaped, flattened almost and spreading out sideways. It is hard not to be mad that the misdiagnoses combined with our waiting on the drs schedules has caused time to pass and just NOW the Cancer has been dealt with. It really has been so hard to patient. Especially because everyday that passes the Cancer spreads a bit more. But we get such amazing care here! So although the waiting was horrible, at least now we are taken such good care of. Now the chemo is in him and further growth has been nipped in the bud.

Like I said we choose not to worry or view things dramatically. It is a choice to give into fear, and we don't see it as an option. Phil doesn't care to do research or even know details about Lymphoma. He feels that the more he knows the more he will worry. I do the research and share what I think is important. The main thing we know is that chemo is the answer and that its finally started.

The drs want him back home but the pain he has is extreme and unbearable if not regularly relieved via IV. They were trying to send us home today until we put our foot down and explained how serious this is. The pain above the heart he's experiencing is new, in fact it started the day before we came in for the stent last week. We would've come into the ER even if he hadn't been admitted, the pain was that bad.

So after a long discussion the Dr understood and agreed with the help of our explaining things in detail, that its not time just yet. She figured out the meds he could take orally so we could wean off IV Dilaudid and simulate a home environment. This is a trial and error period. They start with the lowest dosage and add more bang as needed. Problem is the amount she scheduled for Phil didn't come close to cutting it.

He needed breakthrough pain relief at least 4 times tonight. I am determined not to go home until he has 100% control over his pain. It is unsafe for Phil to suffer that much and for such a scary reason. The drs do want to get it right, so we will work together to meet in the middle. I'm sure it is possible to come up with the right amounts he needs.

Dad went home tonight after a nice weekend of just hanging at the hospital and sharing encouragement and laughter. Mom is still here, as we agree we need each other at this time. I can be a rock with her support. As Phil's main caretaker that is key to my sanity. We all know how to give each other space and she always gives me and Phil alone time. She cooks, cleans, does the running around. Although I keep giving her an out she said there's no where she'd rather be.

Friends have been dropping off home cooked meals, treats, goodie bags with stuff for us to play with. It continues to warm my heart with how much everyone still helps and cares. Coming to this hospital is a complete sacrifice. The parking, trying to find our room, passing by open doors of countless suffering souls - laying all alone. I've lived here for weeks at a time, I know how it feels to enter this world we all try to not think about. So I thank you once again, for taking the time and spending the energy to come and see us. It REALLY keeps us going!!

The next Chemo round is in 3 wks. It is 10 hrs long and most likely an outpatient procedure. Until then we will manage pain, any new side effects and do our best to keep Phil comfortable. So far, VERY good. Phil will most likely lose his hair in about two wks, so we will buzz his head before then ;) Thankfully its a lot less traumatic for men then women. Hes a tough cookie, we will take it all with stride. We will need to get him some cozy hats!

If you would like to visit us just text me, he's loving company in the afternoons. Dinnertime too and later in evening. If you're not sure what he likes to do here are a few things:

-Family study with a small group
-Play board games
-Watch Jeopardy at 7, Survivor on Wed nights, 60 minutes on Sundays, David Letterman and Jimmy Fallon, nature shows and documentaries.
-He loves to just sit and talk about spiritual things while enjoying snacks and tea.
-Service from home like letter writing and phone witnessing.
-Going to friends houses for dinner or just to hang out.


The list goes on but it is usually things he can do while lounging or lying down. He likes a quiet environment but loves to laugh at the same time. We look forward to spending time with all of you <3

As far as discharging and progress on Phil's chemo regiment I will keep you updated. Much love and thanks for your continued interest and support, Hollie


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