Dear Friends and Family,

I know it has been a long time since we updated this blog. I also know that if you are on social media, you've likely seen the beautiful pictures and encouraging summer activities we've finally shared publicly this last week. Things are finally really looking up, and we do not take this upswing for granted. I'll do my best to take you on this little post-cancer-treatment journey (through words) which brought  us to our most recent rock bottom of the Great Lakes before we started to swim back to the surface, so to speak.

As you may know, Patrick finished chemo on July 5th (after 7 weekly rounds), and his final radiation was July 14th (35 brutal treatments of that).  We had expectations that we had come through the worst of it, and the healing, even if slow, would start right around then.  Patrick had managed to get through those weeks of treatment with about a 25-pound weight loss, and he was mildly healthy for a guy who just went through all of that.  

We did not, nor could we, foresee the complications which would come about because of a tiny little virus that most people can fight with a short round of antibiotics. Patrick got strep throat in that last week.  We don't know how or where he contracted it (probably at the hospital, to be honest). With the strep, he also had a continuation of the thrush in his mouth, which was painful enough all by itself.  It is a really amazing thing that the PA who examined Patrick on the 7th noticed his throat was "extra" bad and ordered the strep test. That is not a normal thing they order in the chemo wing, we were told. He was pretty nauseous the whole weekend, which we expected because of the build up of the chemo, and this being the last treatment of that. I noticed at home that he seemed extra sick, but we were going back every day the next week for radiation, and he had fluids ordered for hydration on Monday, the 10th. So, if anything seemed extra scary, I would have other healthcare professionals laying eyes on him so that the burden didn't land solely on me. (<--- This needs to be addressed more.  It can be so disconcerting to be the caregiver.  There are normal things associated with that -- fatigue, loneliness, worry about the future, extra duties for cleaning and disinfecting, sleep disturbances, etc. But, the biggest thing I faced with fear this summer was a concern that I would not really understand danger even if it was right there sitting next to me).

While we were at the hospital waiting for the infusion center to have a chair for Patrick (to receive fluids), we learned that the strep test from the previous Friday was positive.  Things were starting to make sense.  Patrick had a fever and was gray/yellow and white.  It was awful.  He was huddled on a couch with his hoodie and knit cap, sleeping at the cancer center.  Just really, really sick.  We learned that his labs from that day indicated his white blood cell count had tanked to a very dangerous low. He was neutropenic, and we needed to go to the ER after fluids.  We were actually halfway home when they called us back to the ER for intravenous antibiotics. We went back, and that was a very miserable night.  There was no bed in all of OKC, I guess.  So, we were in a makeshift room in the ER, and he received IV penicillin. This was such a necessary step, though, because he was vomiting every five minutes or more (I am not exaggerating). He would not have been able to keep down the oral antibiotics. It was also a huge gift that we knew exactly why he had neutropenic fever (strep) because the ER staff told us that usually they don't have an indication why the white blood cells tank like that, and treating it can be a little difficult.  Knowing what was wrong allowed them to get the correct med and dose immediately.  They did want to admit him, but after 12 hours, there was still no bed, and we all agreed that we would rest better at home.  After much treachery, we got home around 6:30 a.m.. We drove home during one of the most dangerous storms of the season.  Trees were down.  Flooding was everywhere. Lightning.  It was a terrifying, white-knuckle drive. But, I got him home and in bed.

We finished out the week of radiation, rang the bell, and got permission to go on our planned respite trip from the #1 oncologist with whom we'd developed a rapport.  She did indicate that we had almost lost Patrick that week, but that he was trending in the right direction. No one needed to tell me that because the danger was obvious. (Our trip is well-documented on Facebook in the Journey of Healing album).  However, this is where things became quite real. The scenarios they had described to us... the ones where he wouldn't be able to eat anything, where he would suddenly drop lots of weight, and where he would need interventions to become well again -- those happened once we left for Michigan and were no longer under the watchful eye of the doctors and medical experts at Stephenson Cancer Center.

I wrote some of these following words in letters to various inner-circle folks while we were on our trip.  Think of this next part as a bit of a journal.  I wanted to write a CaringBridge update, but I was so down and so worried.  I didn't have anything really positive to say, but wanted to wait until the danger was over before updating everyone (unless, of course, it looked like things were going to go the other way).

Notes before reading: His weight plummeted another 15 pounds to be about -40 for the whole process. He went a couple of weeks with only being able to gag down about 400 calories a day, or less.  It was REALLY HARD to convince him, while he was that sick, that he needed to consume more.  I did have to threaten him with a trip to the ER if he couldn't manage to make a stronger effort to consume stuff.  This was not something either of us anticipated post-treatment.

July 27th: