Winter the Way Mom Used to Make It

We knew we'd be home for winter, but didn't expect to get quite the full on winter experience we have so far. There has been snow for most of the time we've been here (see our local TV station for details). Today, much of the tri-state area is under level 3 snow emergency -- for you warm-climate folks, that means only emergency vehicles are allowed on the roads because they're so treacherous. We have a layer of slush, covered by a layer of ice, all topped with 4-6" of snow. Mom and I spent much of lunchtime watching traffic cameras from Cincinnati showing "cut in the hill" (I-75) packed wall to wall with semis as salt trucks try to weave in and out. The trucks can't get enough traction to finish going up the hill. Other cameras showed accidents in progress (I-71). Broadcasters were yelling at their TV monitors telling drivers not to get out of their damaged vehicles in case other cars lost control and hit them. It's about as effective as us shouting at our TV for a football game and kinda funny to hear professional broadcasters do it.

Though we didn't go out and stock up as most people do when such a storm is predicted, we are pretty set for water, food, etc. My EMG appointment for today was rescheduled for next week and Mom's CAT scan is on Friday, which should allow enough time to clear the roads. Penny has her lovely snow suit that I bought in Newcastle, but it's still just a bit too big to fit. I really want her to get a chance to go sit in the snow for a little bit at least. After all, it will be at least another year before she has such a chance again. It's likely to hang around for a bit, so she might get a chance later.

Having a snow day like this is far less fun than when we were kids. Amanda went in to work (she'll get a citation if she drives home before 3pm) and Mom and I are doing pretty much what we do every day. The side effects of this chemo aren't quite as bad so far -- not nearly the nausea she had with the last kind. My arm seems to be slowly rewiring itself, so I can raise it on its own power as long as I'm lying down. There's still a few positions where I'm not in control, but I'm much closer to full range of motion. Penny has been absolutely ravenous for the past 24 hours, so eating every 45-60 minutes in the evening. I originally thought it was because she was sleeping through the night (jump for joy! 10 whole hours), but she got up in the middle of the night hungry last night. Maybe she's just having another growth spurt. Snow days used to be all about going outside and making snow sculptures. I never was one for the standard "snowman;" it was more fun to build a rocking horse or the little mermaid. We also built bunkers for snowball wars in the giant piles of snow scraped to the corners of the parking lot behind our house. None of that now. I don't have the layers of clothes necessary for it, nor do I relish the damp cold I'd likely endure for it. Plus, how much fun would it be to roll a big ball with only one arm?

Mom's Diagnosis

Last Wednesday, Mom went in for an x-ray of her chest because she was suffering from shortness of breath and fatigue. As soon as her oncologist reviewed the film, he found that there was a lot of fluid around her lungs. The doctor immediately removed 3L of fluid. That wasn't all the fluid, but he didn't want to risk collapsing Mom's lung. Then Mandy, Mom and I went on Friday to talk to the oncologist who did mom's bladder surgery and is her oncologist's mentor. The test results of the fluid biopsy weren't back, but the fact she had so much fluid was worrisome. The fluid gathering around mom's lungs most likely indicates a return of her cancer. The doctor said that the kind of cancer mom has (papillary serous, primary peritoneal) does tend to be really aggressive and the fact that it's back already indicates we need to take aggressive and immediate steps to stop it in its tracks.

So, step one is to start chemo this Monday with a new chemical – Doxil. The bit of the fluid left around Mom's lungs can gauge the effectiveness of the Doxil – if the fluid decreases over the next three months, the chemo is working. If no decrease, they'll add another chemical to the cocktail and see how that goes. She'll also get another CAT scan next week to see if there are other tumors cropping up and where. That way they can be tracked to see if surgery is necessary again, but that's sort of a last resort.

So it looks like we're playing it by ear at this point. Keep Mom in your prayers as she restarts chemo and goes through the remaining tests. (I really like the evil genius laughter pose here, though Mom's not as fond of it.)

Diagnosis: Weird!

I went to the neurologist this past Friday, thanks to my Aunt Rose. The neurologist refused to accept a referral from an ortho, so my aunt was nice enough to have her office "refer" me just before she headed off to the hospital (details forthcoming). The neurologist gave me a thorough check over, testing whole body reflexes, sensation, etc. He actually LISTENED to my story of how my symptoms developed (a nice change from the ortho). He was a little disgruntled that my referring physician didn't refer me to him for the EMG, especially since their offices are right next door. I explained that Aunt Rose only recently got involved and his office wouldn't take the referral from the ortho.

In any case, he did a pretty thorough case history and examination. He said that from my description, the most likely explanation is something called Parsonage Turner Syndrome. He wants to run a few more tests to eliminate other options, though. Another MRI, this time of my shoulder, to ensure there's no mechanical issues with my nerves; some blood tests, to ensure it's not a metabolic or infectious problem; and another EMG, I don't know why, perhaps so he can see for himself how I respond (or punish me for breaking the referral rules). I'm going to get all these done sometime in the next couple of weeks and see him again in the first week of February.

There is a certain amount of relief in having a diagnosable disease. Then I read what it said online. It sounds like a pair of neurologists got together and gave an official name to their shoulder shrug. No known cause, it generally just "goes away" for no apparent reason and there's no real treatment for the problem, just pain management and physical therapy for the side effects once it goes away. From the sound of the description, I'm lucky that my pain has subsided significantly so I don't have to be on medication indefinitely while nursing (or having to quit nursing). The neurologist said I'd need to be careful lifting with my right arm because the muscles that usually keep the joint together have probably weakened and I have a good chance of doing nasty damage with tasks that seem mundane.

While most people make a full recovery within two years, it's hardly consoling when I'm going to need to be at the top of my game to keep up with a toddler getting into trouble. It's also a major bummer as we consider how I'm going to take care of things in Grenada -- can't use my shoulder carrier for Penny or my backpack for her stuff, can't swim, can't drive, can't beat off big guard dogs. I hate relying on other people for stuff -- not that other people aren't reliable, just that I really value being able to do things for myself. Perhaps this is a lesson set before me so I can learn to let people help. I'm sure we'll figure out how to make things work in Grenada and I'll still have an unbelievable time. How can I not, with such a sweet little girl at my side (and Dan ;)!

P.S. Sorry for the extreme lack of pictures lately. I don't know why, but the browser refuses to open the window for adding pics.

PPS Aunt Rose gave birth to handsome little John William on January 14. He was a bit early and at 4lb 5oz, he's going to be spending a bit of time in the hospital beefing up before heading home. Both he and Aunt Rose are ok, though. I've got a new cousin and can't wait to see him in person!

A good friend passes

We received news last night that a long-standing friend of the family passed away. Jacob Sacksteder was in my brother John's class all through grade school and high school. He died in the hospital last night of a heart attack and the head injury he sustained when he collapsed. It is terribly sad for us because he and his family are just the sweetest people. Jacob was one of 11 kids, so each of us had a nice Sacksteder either in our class and/or the one above or below.

Jacob was one of the early adopters of "Squishy," an evil practice I might have to take credit for initiating. One sneaks up behind a friend, index fingers extended. Then, the index fingers are rapidly applied to either side of the friend's abdomen while exclaiming, "Squishy!" Depending on the target, this sometimes resulted in shrieks and/or a four foot jump in the air. This practice rapidly spread through our group of friends in high school, much to my dismay as it was often used on me. Why do others adopt my worst habits and use them against me? ;)

One Jacob incident was so famous in our family that it has entered our lexicon as "an event sudden, hilarious and somewhat gross/horrific." At some point in grade school, Jacob, his cousin Tommy, John and I had been to a roller skating birthday party where hotdogs, pizza, root beer and lime sherbet were served -- obviously a perfect storm of food and activities. While my mom drove us home, Jacob mentioned he wasn't quite feeling well. Mom offered to pull over, but Jacob insisted that he would be ok, we were only a few blocks from home after all. He continued to not feel well, so Mom offered again to stop at the side of the road. Jacob again said he'd be ok until we got home. Not long after, we heard the sound you all know was coming, along with a rushing water type sound. Apparently, Jacob had put his hands to his mouth in an attempt to catch the mess, but the hands merely deflected the vomit to either side. Tommy, sitting next to Jacob, threw up his hands as if someone had a gun to his back and assumed a look of absolute horror. Tommy maintained this position for the duration of the drive because he was covered head to toe in Jacob's mess and didn't want to get the puke in areas that somehow remained untainted. When we dropped Tommy off, his mother stripped him right there on the front porch and it became clear this wasn't the first time Tommy had such an experience. Miraculously, Jacob came through with barely a speck on him. It did take some time to clean that smell out of the old grey station wagon, though. To this day, when our family wants to indicate that an event was unexpected and horribly funny, we'll throw our hands in the air in the Tommy position and burst into uncontrollable laughter.

Jacob was always one of the people I hoped to see at Christmastime because his family would all get together and I am always tempted to go to Christmas mass at the church where we all grew up. Sadly, with all the churches merging (so mass schedules are goofy) and Penny's sleep schedule, I didn't manage to make it to any Christmas masses this year. You never know when your last opportunity to see someone might be, I guess. Please keep the Sacksteders in your prayers.

Doctor Visits

This past Friday I had my second appointment with the orthopedist. He said the EMG report (see below for details on this electrifying test) said I most likely have stretched a nerve in my brachial plexus (fun area in shoulder where nerves come together to pass through something). He claimed he was no expert, but this should clear up on its own within 6-7 weeks of the original injury. To be on the safe side, though, he recommended that I get an MRI of my neck to ensure there isn't something damaged up there. Saturday, I got the MRI and its analysis should be done by today. The orthopedist recommended I see a neurologist, but my sister-in-law who is a physiatrist (the kind of dr. that did the EMG) recommended I go back to the physiatrist because he should be able to handle the treatment for a stretched nerve. So...I called the physiatrist today to schedule another appointment and we're booked for the end of this month. So I may be better by the time I actually get to see him, though my arm muscles may need some work because it's tough finding time to work out my arm with all of Penny's care.

As you can see from the list of doctors, Penny has been getting some extensive experience with doctor offices. Yesterday, we went for the first visit dedicated to her here in the States. Aunt Helen drove us down to Cincinnati to visit Aunt Ann the pediatrician for Penny's first round of immunizations. It's maybe a week late for this round, but Aunt Ann just got in a new shot that combines 5 immunizations into one. That means fewer holes in my little sweetie, so worth the wait. Penny was giggling and playing with Aunt Helen for the first few minutes while I did paperwork and we waited for Aunt Ann to be available. Then Penny started getting hungry, fussy and started to cry, just as Aunt Ann walked into the room. Recognizing that she wasn't going to get much examination done while Penny was fussy, Aunt Ann asked questions about health history as Penny nursed a bit. After a little snack, Penny got examined and Aunt Ann went to find someone to give Penny the inoculations. Penny nursed a bit more before the nurse came in.

We interrupted the meal again for an oral vaccine. Things were going pretty well, until Penny decided to do her impression of the exorcist. Milk went flying everywhere. Aunt Helen in her suit jacket was closest to the action and seemed dumbfounded by the spectacle. The adept nurse turned Penny onto her side in the recovery position. The whole meal seemed to have erupted onto the exam table, covering diaper-clad Penny and miraculously missing other participants in the room. Aunt Helen held up Penny as the nurse used paper towels and tissues to dry the quite relieved Penny. It was decided that she needed a new diaper, though. As soon as Aunt Helen pulled the diaper away, though, Penny decided this was the time to pee. The few bits of exam table that had been dry were now plenty wet. A new tissue box was fetched and Penny was again returned to a dry (though somewhat sticky) condition. The nurse ducked out to ask Aunt Ann if she should finish the oral vaccine in the dropper or just move on to injections.

Since Penny had obviously lost an entire feed and was again pretty hungry, I tried to feed her again while the nurse was out. Obviously a bad plan because as soon as the nurse tried the dropper again, Mount St. Penny erupted afresh. Considering how bad I feel after puking, Penny seemed to be taking it all in stride. She was again cleaned (not as big a chore because she didn't have as much ammo as last time) and then people took their places for the shots. Aunt Helen pinned down Penny's arms, while the nurse pinned her legs with her left hand. The nurse then leapt into a rapid fire of injections. I swear she was finished in under three seconds with all three shots. Aunt Helen noticed that Penny tensed after the first one, so the remaining two were going to hurt more. Then the air was filled with profound wailing. For someone who doesn't cry much, Penny definitely knows how to do it right. Nursing quieted her down enough so we could talk to Aunt Ann for a bit about what to expect over the next 24 hours. A little Tylenol ensured a quiet ride home to Dayton. Penny had a few more emphatic crying sessions throughout the evening, but was smiling again by 1am or so.

We'll have a few weeks without doctor appointments for now. Our next trip should be to mom's oncologist near the end of January. Then the physiatrist and no more shots until mid- February. Hopefully, Penny will have enough positive doctor office experiences that she won't develop an aversion before our trip home is over.