The Full Re-cap

This going to be long because I'll tell you everything, but I'll prattle on about some other stuff first, so if you need a drink or to go to the bathroom, do it now.

In a desperate attempt to spend less time trapped inside my head, I've resorted to watching TV. I haven't watched much TV in years. Now, dozens of Cheers and Friends re-runs, a whole movie, and a documentary, and I know why. Either I've already seen it, it's crap, or it is depressing, too.

The documentary was about the Sobibor Concentration Camp. I've taught WW II several times, so I was kind of surprised I had never heard this story.

The prisoners were tipped off that the camp was going to be liquidated and closed. At this point, what do they have to lose? With the skills and planning of some captured Russian soldiers, who happened to be Jewish so they went there instead of the POW camps, they came up with an elaborate plan.

On the appointed day, they systematically lured almost all of the Nazi officers, one by one, into various shops in the camp and killed them. Then, at the appointed time, all 600 of them stormed the barbed wire. Of that 600, 200 survived the Ukrainian guards shooting at them, the barbed wire and the mine field. Of that 200, 150 were eventually re-captured and killed. Of the 50 survivors, two were a young couple who met in the camp. After hiding out in the woods for two years, they finally managed to get to the US. They married and had two children. He lived to be 87. She is still alive at 91. There also were two brothers who survived, one of whom is still alive and traveled back to the site to commemorate the 70th anniversary.

What are the odds that both of the young couple and both brothers would survive when so many did not? How is it that, after enduring such horrific conditions, these survivors live to be so old? It is amazing, and fascinating and depressing.

Okay, I know you don't read to hear about my television habits.

First, I'm not sure I should have opted in for that fourth round of chemo. Dr. B. said it was up to me. My fingers are numb and all the skin is peeling off my fingers and the ulnar nerve in both arms is lit up like a tree. Only time will tell.

We met with Dr. F the radiation oncologist. He was not quite as optimistic as he was when we had this same meeting in March. I didn't have a big hole in my neck in March.

He walked us through three scenarios. One, do nothing and see how long my body can keep it in check. Two, do some intermittent chemo to knock it back periodically until it develops a resistance to them. Three, do the radiation knowing that this is the same field as before.

Of these three, the third one is the only one that gives me a realistic shot at living for more than a measured amount of time. The risks are that my bones may disintegrate, my tissues may not tolerate being re-radiated, because they have to use a lower dose, it may not do the job completely, and/or the wound in my neck may become so irritated that they cannot continue. But, it is possible that it will mop up the remaining cancer, particularly when paired with Cetuximab.

Cetuximab is a different kind of chemo of monoccloidal antibodies. No, I don't exactly know what that means. The primary side effect is skin toxicity, but a few people have a severe allergic reaction as it is made up of proteins and not all of them are human.

At this point, we have chosen door number three. We also discussed the trach situation. They have to figure out how to make my mask without drowning me because it is a big wet sheet of plastic when they press it over your face. They are going to be even more excited when they hear what Dr. A decided today. (farther down)

After that cheery visit, we stopped by Kelly's office so he could sign a few things and then headed to acupuncture. Zachary did some heavy duty massage stuff, the Asian equivalent to the stuff they used to do at Bodywise with the knives. My back and shoulders are quite bruised. He said he was flushing the metabolic toxins out of those muscles to try to relieve some of the strain. I'm not sure if I'd call it flushing, or releasing the Kracken. I had stuff coming out of every orifice all night. Something certainly got cleared out alright. Dr. A was a little shocked at the bruises today.

Tuesday night was a little rugged, as was this morning. I am ever trying to be focused and the optimist and I know how strong I can be. However, when you are ass dragging tired, your fingers are numb and peeling and random oozing sores appear, it becomes more difficult to be upbeat. However, I put on my game face, as always, for Portland.

Kelly and I had a little sob fest this morning, and then pulled ourselves together and pulled out of town on time. A first, I think. In the hub bub of getting out with everything, neither of us remembered to put ice in with my food, so while we made it, not so tasty unrefrigerated for multiple hours. That got solved later, too.

The swallowing test. Sweet Rachel had everything ready to go for me, far more things than we ever got to using. First I tried a swab with water. Nothing. Then she tried a swab with water. Nothing except maybe gagging me with a swab.

She doesn't use the lidocaine/salt water spray that most people do for the scope. Yay for that as I find that it never takes effect when they are scoping you, but half an hour later you can't feel part of your face. Instead she had some sort of a dilator that she stuck up my nostril on a long wooden q-tip and left there for awhile. There's a missed 'selfie' opportunity. Then she came back with a big cup of ice and Sprite zero, some grape juice, and the head honcho speech lady.

She coached me on the scope, but I've had it dozens of times. I don't even notice anymore. With the scope in place, we tried Sprite on a swab, first me, then Donna. We tried both sides. We tried turning my head this way and that. All the while Rachel watched on the scope.

And the verdict is no way. I have pretty much no swallowing response on the left. On the right, I have a tiny bit, which might get the job done, except I also have a pocket. I have a  band of scar tissue from either the surgery or the fistula or both, that forms a nice little pocket on the right side of my mouth. Everything collects right there. They didn't have to show me on the scope, I know where it is because I suction it out a dozen times a day. I didn't know that is what it was, but I know that is where all the stuff collects in my mouth. So, even if I could trigger a swallow, which is highly unlikely, there is no way to get a pill past the pocket. And there was no encouragement from my esophagus either that made it seem likely.

There are two upsides to this otherwise somewhat disappointing news. One, no matter how much I practiced I would have never been able to swallow. Two, there is pretty much zero chance of me ever aspirating anything, so I can feel free to put anything in my mouth to taste, or chew, and then spit it out/suction it out with no risk of giving myself pneumonia. This information may save someone's life the next time I have a pretzel craving.

Next up was Dr. A. I don't know what it is about him, but he can tell you the brutal truth, but still make you feel like it is going to be okay. He agrees that radiation is the best option and that the Cetuximab is a good complimentary choice. It is totally different than anything my body has seen, so that with the radiation may get the job done.

In a perfect situation, we would let my neck heal before moving on to radiation, but this isn't a perfect situation. While the cancer certainly responded to the chemo, there is still some there. He did agree, however, that some of what lit up in my trachea was inflammation from the trach and wound, which means the area did shrink some after all. We just don't know how much.

We tried the plastic trach. No way. No how. The face plate is larger and digs into the wound all around. It hurt terribly. After some discussion, the decision is that Kelly will pull out my trach tube completely right before radiation and then put it back right after. Yes, he learned how to do this today. Dr. A's quote, "I can teach interns to do it." Kelly practiced pulling it out and putting it back.

I'm not really sure where on his resume this particular new skill belongs, but he has it. He doesn't even use the obdurator (the tool for putting it in). And the you've gone too far point is, if you try to slide it in and hit resistance, don't push. Worst case scenario you got to the ER and have them put it back in or call 911 and have the EMT put it back in. Let's hope it doesn't come to that.

I get to keep being the woman of steel and Dr. A. also didn't really feel like I needed to wear the collar all the time, either. Hopefully more air will help healing, too.

Mask making in May 28. I have no idea how they will do this with not a trach, but a big open hole in my neck, without drowning me, but we'll see how it goes. Although I do breathe well enough through my nose to not necessarily need the trach, if the radiation caused any complications and I needed it back in it would be bad, so best to keep it until there is absolutely no doubt.

We also asked the when do we go to MD Andersen in Houston and start looking at experimental treatments. After radiation, if we don't get the response we hope for, that is the next step. And you start measuring how much  your body can take against the treatment options. That's when the quality vs. quantity conversation really starts in earnest. Hopefully we don't have to have that talk.

Feeling somewhat better, but exhausted, we left. On a hunch, we stopped at a shopping center in Tualatin that had a Panera Bread and a Jamba Juice. The assumption was one of them would have something I could eat. Kelly went into the Panera Bread and asked them if they could put one of their soups in the blender. The counter person deferred to the manager, who said, "Why not?" So they blended up some broccoli cheese soup for me and didn't even ask why until afterwards. I was very thankful to have it. It smelled good. I'm sure I met my sodium quotient for the day, but that's okay. I was only one pound above the lowest I've ever been as an adult, so any calorie is a good calorie.

We picked up Karissa at Angie's and headed home, making it in the door right around 8pm. A little over 7 hours total for today's adventures.

Thankfully all we have tomorrow is the housekeeper is coming. The mouse killing cat already left us a present tonight, so hopefully she won't torture the housekeeper again.

I should take my tired, peeling, numb, gooey, refluxing self to bed. I am looking forward to a shower and a walk tomorrow.

With love,
Kiara