It is truly a world that just messes with your head. The world of the sick and well. Darkness and light. Cancer and non-cancer. But, we are in it, and we can check off day 1, round 2 from our list which is all we want to do. Keep focused, one day at a time, and like Oliver said, just do what we gotta do.
Day 1, round 2 actually started off in a very annoying fashion. We had emailed and called SCCA several times over the weekend to try to determine our itinerary of when we should be somewhere today. The only thing we knew was meeting with the doctor at 3pm after a blood draw at 2pm. Oliver was still "on the waitlist" as of the end of last week to get in for chemo today, but we knew infusions had to start today. So we waited and waited. We were all up at 4am, 5am, 6am... just waiting for an email or phone call.
Nothing.
At around 9am, we get a call from SCCA AND an email that gave us our new itinerary as well as asked us why we weren't there for our 7am appointment. Seriously?
So we said we would try to book it down to Seattle by 10am, and after a mad rush of throwing some stuff together to get out the door, we did. The new itinerary also didn't have anything on there for July 3, as well as a 7pm infusion on Monday July 8. Obnoxious. However, we had a plan of attack in the meds to avoid as well as meds that are ok (non reglans, atavan ok, Zofran ok, and THC ok). We gave Oliver 1/2 of an edible marijuana gummy after his blood draw this morning. Here he is as it starts to kick in and he starts to get a little munchie. Already doing better in round 2- eating!
Getting weighed in prior to meeting with the doctor. He was 135.7 pounds. Up 1/2 of a pound since he weighed at home a few days ago, which is still a WIN in my book. He's down about 5-7 overall, still, but gaining which is the direction we want to see. He was 129 at one of the ER trips a week or so ago, so a vast improvement from that weight.
Meeting with the nurse practitioner, who got an earful regarding our frustrations with scheduling, our frustrations with meds (everyone kept asking if he was still taking the meds that made him whacked- NO! READ HIS DAMN FILE!). She said his labs looked great, however, he is still neutropenic as his white blood cell count is still only 152. Again, normal is 2000, and low is normally considered 500. He was a 7 at the ER a week or so ago. We thought he would be more in the 500 range, but I guess due to the aggressive chemo he is doing, he is only 150, which is "normal" for this regimen. As long as he doesn't have a fever, he can stay out of the hospital, but the doctor said that even if he gets a fever, they will just admit him back to the hospital but continue chemo/treatment through it. Yikes. We are not hoping to end back fully admitted to the hospital so fingers crossed.
After making sure all labs were a-ok, we headed up to floor 5 (the infusion floor) to wait for the real fun to begin.
We finally got back to our room (#16), which is decidedly the worst one that we have had there thus far (SCCA.... was striking out today across the board), as it was crammed in a tiny corner, and small. First up: IV time to start the fluids and chemo drips. We have gone back and forth with them as well on port vs PIC line vs IV. It seems like no one really has ONE set opinion on anything and we get varying opinions on EVERYTHING from drugs to nutrition to this type of stuff. I suppose that is to be expected, but it's frustrating. Ultimately, we didn't do a port OR a PIC line because he is neutropenic and so susceptible to infection. Both require some form of invasion in terms of placing each, so would not be good in terms of developing an infection right now. If we can keep him hydrated, we are sticking with the IV to avoid any sort of invasion which could cause infection given his low white blood cell count.
Shortly after the first chemo drip started, Justin and I went to wander around Seattle as he had found a coffee shop that supposedly has great coffee. We are getting close to being out, and god knows, if that happens all hell will break loose. It was such a cool shop, and the barista was awesome. He was asking if we were from Seattle and why we were in the area, which when we are honest just makes him feel bad for asking, but he was super cool about it. And bonus, their coffee looks really intriguing and we are excited to try it. Not to mention, it was a beautiful day for wandering around the city.
Oops, guess Justin was mid-sentence. Join the club of non-flattering photos posted online!
We kept walking along the lake and this song has been in my head since I drove home later in the day (when it came on during the drive, I had a super ah-ha moment as it spoke to me about when we were walking down by the water today).
Some days I can't say why I'm feeling lonely
Some days I am too proud to ask for help
And I stumble through the noise
Trying to find some peace
A stranger in the crowd, I lose myself
The raging world can get so overwhelming
Looking for a meaning that won't make sense
In my head its getting loud
Like I can't outrun this cloud
No matter where I go, well there I am
So I walk down to the river
Where the troubles, they can't find me
Let the waters there remind me
The sun will be there when we wake
I walk down to the river
Though I might not understand it
It's not always as we planned it
But we grow stronger when we break
So, I walk down to the river.
I mean. Wow. Sometimes you don't even know how you're feeling until you hear it or you see it or you read it or you start writing about it, and something clarifies it so much that you take pause and you say, yes. THAT. THAT is how I feel. I can't put in to words this experience. I have tried for 25 days, and hopefully each day am able to express a tiny piece, but it's almost impossible to fully capture the gamut of all of this. Today, from going to the shores of Lake Union from the cancer ward and seeing the contradiction of ALL the sickness surrounding us in SCCA to people just out playing carefree on the shores of the lake- it is almost overwhelming. It makes you gain perspective. Take pause. We were one of those people down by the water, but we were also those people up with our kid in the cancer ward... IN THE SAME DAY. You never know what people are going through, even those that appear to be out just enjoying the perfect Seattle day. Like the song says, "though I might not understand it, it's not always as we planned it, we grow stronger when we break." So much YES.
Back in the room, it was a lot of waiting. All 3 chemo drugs for the first day- the big bang. About 8 hours of treatment.
And Oliver, despite thinking he would be awake for this whole round.... was not. So cute.
He was pretty agitated and fidgety at first. The nurses said that they were going to try a new med, which Colleen and I almost flipped out on them about. YOU'RE DOING WHAT?! And also, WHY? It is so annoying to me how the whole medical profession just throws stuff at you without a real reason, you have to question them on everything. Sometimes more drugs are not always better, as we have so clearly found out. But it wasn't a reglan, so we decided to try it. Could have been that or something else in the whole cocktail that made him fidgety. But after a massage by pops, he was able to relax and crash hard.
During the day we saw on our memories on facebook that 6 years ago was the day we took Oliver on granite peak hike (with baby Owen) and almost killed Oliver, who had not gone on any sort of a walk in quite a while (being a teenager who loved computers). This hike has been made famous in our family. We even had a park ranger stop that day and ask if Oliver was ok. Ha!
The way chemo looks for the family and support crew. A lot of cramped reading, working, and chatting- but we have no room to complain. Oliver is doing the real work here.
Other than being a little fidgety at the beginning of the treatment, Oliver was mostly comfortable and sleeping the whole day. He said at the end of the day he thought it was pretty good as far as comfort level, so we are going to stick with the current drug cocktail/regimen and see how the next few days go. At one point, we said, Oliver, only two more hours and he said, "really? How long have I been here?" Ha! About 7 hours already, bud! We were stoked because when he was awake he was at least eating. MUCH improved from round 1.
I left about an hour before the treatment finished to head home and warm up some soup for OG and dinner for the rest of the support team, since they wouldn't be arriving home until around 9pm. It was such a beautiful day out, I had to snap a snot coming across the water.
Love this sweet picture of a dad's love, and sporting the #oliverstrong bracelet! Again, much improvement from round 1 when they had to stop along the side of the road for a puke break after day 1.
Everyone made it home a little after 9pm, and Oliver ate a ton! Yes! He was definitely a little bit out of it due to all the meds, but felt like his nausea was under control and he wasn't dizzy.
After eating, however, he promptly took a rest. (Healing bear behind him sending healing vibes).
We got several more #oliverstrong pictures yesterday- keep them coming! They make all of us, including Oliver, so happy and it keeps that fighting fire going.
And tomorrow, day 2 round 2. I will be headed to the airport to fly back to Kansas City to pick up the little boys, and Oliver and team will be back to the hospital at around 2pm to complete the 8 hours of round 2. It will be a long day all around, but we are not weary. We are fighting, and we believe we are winning. #oliverstrong.
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