There were a couple of important things that were inadvertently left out of the prior blog that I’m going to lead off in this blog. After I’m done, Melissa is going to take over and ghost-write (an interesting pun on many levels) the remainder of the blog. I’ll give her a proper lead-off when we get there.
When Gregg, Susan, and I went to Olympia for the tux fitting we made arrangements to meet with Thomas, Pam, Jake, and Cody for lunch and dinner, respectively. Mark couldn’t make it because he was working and, of course, Edward lives in California. We had a nice long lunch with Thomas during which we talked a good deal with him about the house that he and Megan are renovating. He even brought in the plans to show to me so that I could see what they were up to. Beautiful, extensive renovation. So he and Megan are currently renting a condo next door so that they can be near the renovations as they occur.
We followed lunch with Thomas with the tux fitting and picking up the gown. The fitting took an inordinately long time for me. I had the tux fitted and measured in Annapolis and then “sent” to Olympia so I wouldn’t have to transport it on the plane. I say sent because that was what I was told — that I would have a fitted tux waiting for me. In reality, they started pulling things off the shelf, none of which fit except the suspenders, bow tie and vest. I looked as though the tux were stolen from a clown, dusted off, and then handed to me. The young salesman insisted that everything looked great.
So I showed him the length of the sleeves which were at least an inch and a half too long. The shirt was an 18 1/2 by who knows what length sleeves — I need a 15 1/2. To add a little drama to my issues with the pants, I took off the jacket and sucked in my gut a little (no small feat) and caught the pants at mid-underwear. I heard a little gasp from Susan behind me and a snicker from Gregg. I didn’t know that they had stepped in behind me to watch what was now an animated discussion with the salesman wannabe. Thankfully, I caught the pants. The experienced salesman immediately jumped in, completely re-measured and marked the jacket and pants, got an appropriate shirt, and put the suspenders on the pants before measuring me and marking up the pants. The alterations were completed and we left the store in about 40 minutes. I thanked the experienced salesman several times for stepping in before leaving the store.
Our dinner with Pam, Jake, and Cody was equally good. I didn’t eat because of the late lunch and diminished capacity (no wise cracks please) for food. I had an excellent pint and spent the rest of the time mostly listening to the banter and chiming in with a wise crack or a little dig as I’m wont to do. It was a good evening and Susan and Gregg had to run me back to Mom’s in Tacoma later than we would have thought. I was tired but felt very good.
Steve and I had lunch on Sunday, I think, at Johnny’s Dock down on the Tacoma waterfront and behind what used to be Union Station. After lunch we stopped by to see his Dad for a little while. His Dad, Herb to his friends and Mr T to me, was in important part of my childhood after my parents were divorced in 1958. That was the year he moved his young family from Parkland to the 9 acre farm on 96th street. Steve and I met shortly after that and I spent much of my formative years at my second home located at the end of 98th street, through the barbed wire fence, and across the pasture. Steve’s Dad was a good substitute for the father I had lost. He was strict (which I probably needed), and willing to teach, which I soaked up like a sponge. I had chores which I didn’t mind at all because they were so different that what I had to do at home. I’ve been stopping in to see him for years, several years before Steve and I got back together. We had a good visit followed by a photo-op. I think he’s still pretty sharp for a 98-year old.
The following was written by Melissa with a few additions by my me. She wrote it all in the first person (from my perspective). Thanks Dawder!
Pat and I met with Dr. Ahlgren after returning from Tacoma to talk about our next course of action. He explained two options to us. Since the Abraxane has become too difficult to tolerate and we’ve exhausted the gamut of chemos known to treat pancreatic cancer, we could move to palliative care. That doesn’t seem like something any of us are ready for so we immediately asked him to tell us about Option B. It’s a study pioneered by Dr. Ahlgren in which O-MAX (a 4 chemo whammy) is administered throughout an 8 week period with no off-weeks. O-MAX includes Xeloda (oral chemo famously known for its mouth sores), Doxorubicin and Mitomycin (both new to me), and my old friend Oxalyplatin, the bringer of Neuropathy, hip pain, and a good deal more unpleasantry. I’m bracing myself for the neuropathy. The Doxorubicin and Mitomycin are both enablers that prep the tumors so that the other two can hit even harder.
So, Option B it is. I am mentally and emotionally ready to fight. I sure hope I can convince my body to keep up.
I had my Week 1 infusion about two weeks ago. All went by without a hitch and they loaded me with steroids before heading home. I buzzed around that night and into the weekend before crashing hard. I’ve continued to struggle with retaining excess fluid in my abdomen which leads to some serious crowding. The excess fluid began when the two peritoneal tumors showed up. The tumors secrete fluid and the surrounding peritoneal lining also produces fluid which crowds an already crowded space. Not eating much or drinking much has led to dehydration and now hypotension. My low blood pressure kept me from getting my Week 2 infusion. Instead they gave me two huge bags of saline to increase my blood pressure. Seems a little counterproductive… fluid in, fluid out. Reminds me of my old gozinta-gozouta routine. Gozinta-gozouta is a recycled phrase that I use to explain balance such as in a heating system. If you block the input, the output suffers equally which reduces the efficiency of the system. The fluid balance is much the same. I was given diuretics to reduce the fluid and fluids to increase the fluids.So far we haven’t addressed the underlying problem of the diuretics. I started that myself last night with one pill instead of two. I checked my BP at 3:00 when I got up to write because I couldn’t sleep due to hip pain — and the steroids. BP was good so we’ll see what happens.
I had Week 2 this past Wednesday, a week late. It went easily with a wall-clock infusion of about 3 hours. This is early Friday and the hip pain is here, worse than the old days with folfirinox. I sincerely hope that the pain is only around for just a day or so…
Jack is 2! Can you believe that? He was the life of the party last weekend. Some of his favorite people were there to celebrate with him. He really started to get the idea after opening a few gifts and was asking for “more presents” all day long. His party was appropriately Thomas the Train themed. He got a new train table and a few new engines for his collection. He can name about 30 Thomas engines and it’s pretty impressive to hear him do it (he identifies them by the face). I got him a red pick-up truck which he opened and yelled out “pa truck!” He blew out the candles on his cake all by himself, ate his cake with a fork like a big boy, and generally partied like a rock star. I am so blessed and happy to be able to share his birthday.
Whoulda thunk this based on the statistics of almost two years ago. I’m blessed by all of you and the wonderful prayer network that supports us all. I am blessed by Pat who continues to live her vows.
I went back to the doctor Tuesday and had the paracentesis performed again. They removed 4.1 liters of fluid – about 9 pounds. It’s amazing how much better I feel almost immediately. Next paracentecis, I’ve requested that I be given a drainage catheter so we can manage the excess fluid from home. I’ve been to DC four days this week — somethings got to give.
I am still hypotensive (low BP) but hoping I will be able to eat a little dinner tonight and get some fluid into me. I’m under orders to drink a half-gallon of Gatorade in addition to regular fluid intake and stopping my BP meds and the diuretics (gozinta, gozouta). Week 3 chemo is scheduled for next Wednesday and Thursday of next week.
We’ve not really talked about my cancer marker readings lately. Three weeks ago I was at 300 due to the ineffectiveness of the Abraxane. This past week it was 292. That may not sound like much but I am starting a new therapy and pushed week 2 so I am pleased that the readings didn’t go up. Sometimes just being stable is good!