Bad choices

Spoof cereal boxes

I spend a great deal of my life making good choices when it comes to my health. I am definitely better than the average bear when it comes to self-care, compliance and pushing myself (some people probably think I push myself too hard but I say you can't have one side of that coin without the other.)

But sometimes when you are sick, you feel like it gives you the right to make bad decisions. Example: last weekend (after a week of coming down with a cold, feeling crappy, being frustrated with my health, being slightly depressed and knowing that I would be starting IVs again soon) I stopped by the beer store on my way home from work and bought an inordinate amount of craft beer, which I intended to enjoy mostly by myself throughout the weekend. And I did enjoy it. (Passed my "morning after" test of not feeling guilty or overindulgent.)

Sweet Potato Lager is so delicious this time of year

So I can't say I have regrets about that particular situation, but it is a perfect example of me feeling entitled to make a bad decision. Ideally, I should have been drinking as many clear fluids as possible and making sure I got good rest (alcohol can also affect that) at the very least. By the way, the weekend was not a total throw-away, I took two good walks with the dogs, which was about all I had energy for exercise-wise -- but I was proud of myself for doing it. I also kept up with all of my normal stuff and stayed very well hydrated during the daytime hours. :)

Another example of feeling entitled, I LOVE sugar cereal. I love it so much that I have not allowed myself to buy it for the better part of many years - it is like CRACK to me. When there is a box of sugar cereal in the house, my eyes pop open in the morning and I am immediately thinking about Corn Puffs or Golden Grahams. Seriously. Having diabetes, sugar cereal is one of the worst things you can eat because of the fast and furious spike in blood sugar.

I'm not sure where this feeling of entitlement comes from in me. I know that pretty much forever, when I would go to a doctor's appointment or have to get a shot or anything, there would always be a special reward afterward: Taco Bell for lunch, McDonald's ice cream. So maybe my brain is wired that way. And I'm not saying that is a bad thing; as a child it was nice. 

So, last time I was on IVs (a meager six weeks ago), I went to the store to stock up on some things and decided to buy a couple of boxes of Crunch Berries (because of the fact that I had to be on IVs for two weeks and was feeling totally crappy.) I ended up having slightly better control over the Crunch Berries - maybe because my appetite was so sparse now that I think of it. But unlike with my sweet potato lager last weekend, I did not pass the "morning after" test - I felt guilty every time I ate them.

Now some of you might say (my mother amongst you) that I deserve a break; that I should treat myself because of all I have to go through; even that I deserve it. And what I'm saying is, maybe I don't. Or, maybe I deserve something else. Don't get me wrong, this doesn't mean that I'm not planning to indulge ever again. But it does mean that maybe I will start to look at my reasoning a little more closely.

This time starting on IVs, I had a realization somewhere in between buying the Ho-Hos, really wanting a beer last night and just now: Just because life is hard does not give me the right to beat myself up over it; just because I go through difficult things does not mean that I necessarily deserve a reward. I am the only one who suffers - both in the long and short run - as a result of my poor choices. Hmph. Going to need to think on that one for a while. Clearly there needs to be some balance between sainthood and over-indulgence. Ah, the ever-elusive 'happy medium.'

Taking it one step further: The thing about doing something wrong over and over is that it gives you a false chance to reconcile with yourself every time. (It's what I call cyclical addictive thinking.) It's the 'I had Crunch Berries this morning but I will not have any more refined sugar for the rest of the day/week/year!' and the little feeling of elation that comes with it. Most of the time, you end up breaking that promise because - I think - we get addicted to the elation that comes with pledging to do better in the future. (Conversely, or possibly concurrently, I think that people get addicted to the 'beating themselves up' that comes with making poor choices.) I definitely have some of the former in me.

But I also wonder if I am addicted to the "morning after" test itself - I kid, sort of - the always wanting to recount and assess how I feel about things that I have done. I sometimes wonder: what would my mind and body feel like to be totally free and clear? - I think deep down that is a goal that I am afraid to attain. Like life, while idyllic, would be too boring or something. But how would I know?

I read a piece of advice in O magazine a while back that has really stuck with me: Do more of things that make you feel good; do less of things that don't. So simple, yet so brilliant. But it's a good goal for me to strive toward.

Crappy week

It's been a crappy week. My positive outlook is nowhere to be seen.

Overall, I'd say that just everything is setting in a bit more with Roger's death and all that we went through with that and then my big health ordeal. I have felt frustrated that my exercising like crazy does not seem to be paying off in terms of raising my PFTs. Oh, I know it's good for me anyway, and it's actually one of the few things that I have really enjoyed and looked forward to this week. So there's that.

This week we found out that someone in our extended family had a suspicious growth that may be cancerous. I am sort of out of the loop, but right now I think things are looking good for it being totally fine, but we will know for sure soon. It just made me so sad, so depressed. It's so much to deal with...

And I woke up on Wednesday morning with a sore throat. Whoopee! I haven't even made it to my 4-week follow up - during which I'm supposed to be doing everything possible to raise my PFTs - and I am fighting another virus. It means I will more than likely be starting another course of IVs soon unless something miraculous happens.

It's not so much the doing IVs that bothers me, it's the frustration I've felt about exercising so much with it doing no good, and knowing that I am only going to lose ground here before I can continue on that path to getting better. (I will say that functionally my lungs felt good before I caught the virus this week, and I am thankful for that even if the numbers don't back it up.)

Todd is doing okay. It has been a difficult week for him. But he is having a really great weekend in the mountains with three of his oldest and best friends and I am very happy for him. Here is a picture of a big fish that he caught. I like this picture because he almost has a smirk on his face. And also because I know that when he is fishing, he is happy.

Todd with big fish on the New River in Virginia, Oct 2012

Doctors, yoga and exercise

I had my check up after 3 weeks of IV antibiotics almost three weeks ago. At that time, I was definitely feeling better. All of my symptoms - including my pesky low oxygen numbers! - had come back up to a reasonable place. My pulmonary functions, however, were not as cooperative.

Below you can see how my PFTs trended up over the course of my IV treatment from Aug 29 to Sept 18. (I started keeping track of some of my medical stats in a google spreadsheet and it allows me to easily make nifty graphs like this.)

My doctor was a little disappointed but I wasn't surprised at all. As you can see, I had been tracking my PFTs pretty closely at home, and what I scored at clinic was on par with what it had been - which is still more than 20% below my baseline. *sad face* The course of action was to keep my Prednisone at 20mg for a prolonged period of time, and exercise exercise exercise. And go back in one month.

I have been keeping up my end of the bargain! I have exercised 11 of of the 17 days since my appointment - swimming, walking, elliptical, even yoga! And I have done so in a mindful way with respect to my back issues, which will always be with me creeping up from time to time.

So yes, last week I went to yoga class for the first time in about a year and a half. It was a huge milestone for me. And I went to another one tonight at a new studio. Both of the classes were restorative classes (also called yin yoga), which means mostly passive positions to let your muscles and soft tissue release tension. Very relaxing and, well, restorative. It's a far cry from my cardio-workout flow yoga classes that are my real love, but you have to start somewhere. Baby steps. I used to hate baby steps but I am seeing their value in my wise old age.

Resting in peace

Roger Platt with his grandson Sawyer, here about a year old

Last weekend, Todd's father's fight with cancer ended. For those of you who know most of his story, for those who have heard bits and pieces throughout or if this is mostly new to you - here is his story.

Ten years ago, Todd's dad Roger was diagnosed with prostate cancer. His wife had died of ovarian cancer five years earlier and I remember Todd telling me early on in our relationship that watching his dad go through surgery and radiation made Todd realize that his dad really did want to live life for himself - to exist beyond the void that had been left after so many years with his wife. I think we saw this attitude in him for the rest of his life.

I was in Cleveland visiting my dad and step mother for Thanksgiving almost three years ago when I found out Roger's cancer had come back and metastasized to his bones: where there should have been bone marrow, there was only cancer. Roger had lapsed in his check-ups, became totally run down and was in really bad shape when the diagnosis was made. A few days later, Todd's brother Brad brought Roger down to Raleigh to begin cancer treatment at Rex Hospital, where Todd and Brad's cousin (Roger's nephew) is chief of staff and also is good friends with an excellent cancer doctor who would begin treating him. This would be the first of many trips Roger would make from Newland to Raleigh over the coming years. While unfortunate, that is time Roger otherwise would not have gotten to spend with us and his grandkits and grandpups.

Roger and Brad on the back porch during a rare time of all four golden retrievers at our house: Henry, Sam, Clyde and Doc (front to back) - April 2012

What followed was a period of relative good health for Roger once his cancer was under control. He was on a couple of hormone treatments, neither of which lasted as long as we hoped they would. They were not without side effects but nonetheless seemed to work pretty well.

Eventually, the hormone treatments became ineffective so Roger started on chemotherapy. He had relatively few side effects with it and again enjoyed a period of good health, including two trips out to Montana last summer. After several months of chemo, a brand new hormone therapy came on the market and Roger's doctor put him on it right away. He again enjoyed about six months of relatively good health before that stopped working.

Roger, Sawyer and Todd in Montana - June 2011

Sister Martha, Jaylynn, sister Susan and great-niece Stella help Roger blow out birthday candles - Holden Beach 2010

At that point, all that was left to try were two other chemos or cycling back through hormone treatments. He elected for chemo again but this time was hit hard by side effects. He discontinued after four treatments - it only worked to stabilize him for the first three treatments anyway. His numbers were starting to really climb.

Meanwhile, the family had been planning and Roger had been looking forward to a big trip out to Montana in August with Roger, his four sisters, me and Todd, and of course Brad and Brad's four-year old son Sawyer who are out there already. It would be everyone together under one roof for a last bit of fun while time for Roger seemed to be growing ever short.

Roger and sister Martha - Raleigh, July 2012

Unfortunately, about a week before we were scheduled to leave for Montana, Roger really started going down hill. His neck pain was so bad that he couldn't lift his head up. He was sleeping a lot. "Good days" became good "half days." He wasn't even talking about the trip which normally he would be talking continuously about. His COPD was also fairly bad by this point and had been causing congestive heart failure for several weeks. We were very worried and didn't know if going to Montana was even the best thing for him. What if they didn't let him on the plane? What if something happened so far away from his doctors? What if we got him out there but couldn't get him back? And on the other hand, what would it do to a terminally ill man's spirits to not be able to make a trip he'd been looking forward to so much?

We did all make it out to Montana. And we did get to spend 10 days together, three generations of Platts all under one roof. Roger got to see his grandson. Sadly, he was not able to do much of anything else besides sitting outside or watching TV for a little while. Fishing was out of the question. Hell, leaving the house was even out of the question except on one occasion. Some days he didn't talk much at all. And he was (understandably) disappointed at times that he didn't feel better.

Susan, Nancy, me, Todd, Roger, Jane, Martha, Brad and Sawyer (left to right) - Montana 2012

We all pitched in and took care of him. The sisters were always trying to get him to eat, to drink Ensure, milk, juice, milkshakes. We helped him to the restroom and fetched his pain and anti-nausea medicine. Tried to help him get comfortable. Moved his oxygen around from place to place.

It was tough. And yet, as Todd and I drove to the airport to fly home, I was overcome with a feeling that, instead of death being some big scary unknown as it had been, it was simply the next step for him. It didn't seem possible for someone that sick and uncomfortable to last much longer. And frankly, it was getting to the point that we didn't want him to - for his own sake. Something about all that was more okay for me than it had been before the trip.

And as all eyes had been on getting Roger out to Montana, after Todd and I left, all attention was then focused on getting him home. In a massive effort by his sisters, he did get home. And he died there almost exactly one week later.

That last week was hell: Roger required round-the-clock attention from Todd, his aunts, friends and others. Hospice was called in but probably too late to do much good. Multiple phone calls would occur throughout the day between the sisters, Brad and Todd and I.

The day before Roger died, Todd spent three hours stuck in traffic leaving Raleigh to drive up to the mountains for the weekend. I'm glad that he did. Todd was up with his dad throughout the night - it was a very bad night. Todd had tried to help him take some of his pills that morning but wasn't sure how successful he'd been. His dad was very quiet, withdrawn and too weak even to sit up. Early that afternoon, Roger took his last breaths surrounded by the love of his oldest son and three of his sisters.

Martha, Susan, me, Todd, Roger, Brad, Nancy and Jane - May 2009

Hundreds of people showed up to pay their respects at Roger's visitation last Wednesday in Newland. Having spent his entire life there, he had touched many lives. We stood in line receiving people while they shared their favorite tidbits of him. It's funny how one person can be so many different things to so many different people. To me he will always be the quiet man sitting off to the side; a man of few words yet smart as can be; the slowest story teller of all time; a man who loved dogs and kids and fishing as much as anything; a man who loved to smoke and drink; and a man who got to spend part of his last weeks in a place that he dearly loved with those who dearly loved him.

Here is a link to Roger's obituary; you can also see a slideshow of photos that we put together if you download the video player.

Oxygenville

 

I was trying to think of a useful health analogy to describe what's going on with me lately and the word "oxygenville" popped into my mind. If you are wondering what oxygenville is like, it is slow without necessarily being leisurely, everything seems to take longer than it should, it is restricting, limiting, frustrating and also a little bit mellow.

Since I am now caught up on all of my happy vacation photos, I will now delve into a bit of what has been going on with me health wise. I got sick while we were out in Montana. It was four days after the flight out there and since I was not around any sick people (and am always very careful) I assume I caught something from the flight itself. This is frustrating because I wipe down everything around Todd and I's seats, wear a mask and sanitize my hands regularly on plane trips.

In any case, Todd and I were able to go on our excursion to Glacier and Waterton National Parks for three days and were able to do most of what we wanted before we started feeling badly. (We both got sick about the same time.) When we got back to our home base in Ennis (Todd's aunt Susan has a cabin there that we all stayed in), all of the four aunts took off to Yellowstone for a couple of nights leaving Todd, his brother Brad and I in charge of both Todd's ailing dad and Brad's four-year-old son Sawyer. (For those of you who don't know, Todd and Brad's dad is dying of cancer and the trip to Montana was a last chance for all of the family to get together with him.)

I was feeling better and worse depending on the day, running some low-grade fevers, coughing and more congested than usual. My oxygen also got low, but that was exacerbated by the elevation out there. I didn't start feeling truly terrible until the morning of the flight home. I woke up with a decent fever, exhausted, feeling like total crap. And of course there was nothing to do but fly home!

I went to see my lung doctor the following day. I felt so bad that I didn't even do lung function tests at clinic because I knew I was going to need IVs. If I had done them, I have a feeling they would have been low enough that Dr. C would have wanted to put me in the hospital. As it was, though, stuffed full of Tylenol and all, I presented better in clinic than I thought I would. I really thought there was about a 70% chance I would be admitted to the hospital, but as it was, Dr. C said if I felt well enough to take care of myself at home then that was okay to do. So I went home and eagerly waited to start on IVs the following morning.

Meanwhile I'm starting to feel really really bad. I am on round-the-clock Tylenol, having headaches, feeling zonked out of my mind, absolutely zero appetite, coughing a lot and my oxygen is low for me. When my nurse comes to access my port Wednesday morning she says, "I've seen you worse" - but I have a feeling it's a close call. I'm also a little anxious because the doctor has changed one of my two trusty IV antibiotics and I'm hoping so badly that doesn't slow down my recovery.

The first three days on IVs I'm still miserable. My fevers are going up into the 101s, I'm sleeping all the time, still no appetite, my blood sugars are through the roof in the 300s and 400s no matter what I do, I'm wearing my oxygen at night and most of the day because of low sats and I'm still having headaches, my PFTs are in the toilet, I'm feeling short of breath at the slightest exertion and to top it all off I develop a pain in my left side near my diaphragm - the doctor thinks it's from infection being close to the lining of the lung. In short, I feel each day like every time I have been this sick I have been in the hospital. And it's fucking miserable being in the hospital when you are that sick with none of the comforts of home (furry and otherwise.) I kept going back and forth about feeling I should be admitted, but I'm glad that I stood my ground with being home - I think I made the right decision. Too many bad/annoying/bullshit things go along with being hospitalized.

The next few days were a little better. My fevers went away, I was able to get off of the oxygen more, I had a bit more energy, blood sugars were not as crazy, my shortness of breath was easing up, headaches were better, pain was getting better. In short, I started to feel more human again. It's like that time right after a fever breaks and you say to yourself, I'm going to make it. And I knew that I was out of the clear as far as the hospital which was a huge relief.

As I approach the 7-day mark on IVs, I again start feeling worse. My nurse, who comes to my house to draw labs and change my port needle, reminds me that this means that things are breaking up and starting to move out. She says my lungs are sounding better - so this is a good sign. However, I am feeling more tired as the bugs proliferate and die in my body, and my oxygen is once again low meaning I am wearing the oxygen almost 24 hours a day now.

There are many corners to turn during a CF exacerbation, but I feel like I am turning another one now. Yes, my oxygen is still low (my doctor wants to make sure on Monday I didn't develop a blood clot from flying which would be making my sats low). But I am feeling a little more energy - in fact I am almost to the point of being ready to exercise, which is the real thing that is going to pull me out of this. Exercise, Prednisone and time.

Montana trip in pictures

The cabin, Ennis MT

Relaxing on the back porch.

My first drive around the lake we spot many many critters. Here, antelope graze.

The sisters take me shopping downtown Ennis and we stop for lunch (and huckleberry ice cream!!) at the Ennis Pharmacy.

Brad took us out for a float down the Madison - we saw 5 eagles that day! (3 bald, 2 golden). Here, Todd teaches Sawyer how to skip rocks.

Sawyer enjoys being on the boat, but he likes more 1) reeling in fish that his daddy caught 2) looking for rocks in shallow parts of the river and 3) rowing the boat and 4) fishing with his Spiderman fishing pole.

Brad instructs Todd where to cast - he knows enough to leave me to my own casting devices. :)

On our trip up to Glacier, we stop and see Sawyer's mom and boyfriend Michael in Missoula. They kindly offered us a free place to stay for the night - a luxury motor coach!

The next morning, Jill takes me horse back riding! She rode her own horse while I rode a (chubby) sweet older horse named Yuma.

View from atop of Yuma. It was a beautiful morning for a leisurely ride.

We stopped at a brewery for lunch in White Fish on our way up to Glacier from Missoula.

Our first looks at Glacier were a little rainy, but it soon cleared up to reveal amazing scenery.

At the peak of the "Going-to-the-Sun" road, we stopped and hiked The Hidden Lake Nature Trail. The views were nice, but the various critter sitings - a two-color version of the woodhcuck, marmots, picas and mountain goats - were even better.

Rock chuck - their version of a wood chuck.

So many really beautiful wild flowers in bloom.

Pink, purple, yellow and white flowers.

Snow and streams of run off dotted the Hidden Lake Nature Trail.

At the Red Rocks, Waterton National Park, Canada

Our adventurous hike through berry-filled bear country in Waterton took us to this serene lake. We got caught in a wicked storm on the way back!

Todd checking out some road side signs in Waterton.

Our last morning in Glacier we again rode the Many Glacier road - the colors that day were just astounding.

Having both come down with colds, we are extremely happy to make it back to Ennis. Here, a baby deer comes to visit us in the yard! We were wondering where her mother was and about an hour later she appeared - happy baby!

Once Roger has recovered from the flight out, we take the chance to get some family photos.

Hot tubbing with superhero action figures is one of Sawyer's favorite pass times at the cabin.

Todd and I go for an evening ride around Lake Ennis and witness a beautiful sunset from the day's smokey sky. Smoke from wildfires in Idaho kept me inside for a few days in Ennis.

On our last day, Todd and I take Sawyer to Virginia City. Here we are on the little train ride that goes back and forth between Virginia and Nevada Cities, two gold-mining frontier towns.

Atlantic Beach Vacation in Pictures - Mostly Simon :)

Morning visit to Fort Macon

 

Happy in the play pen

Me plus beach view

 Simon waking up from a nap in his carrier

Sometimes I steal Simon so I can take pictures of the two of us :)

 Rabbit!!

 Lemon face

 Evening walk on the beach

 Me and super longtime friend Erica

 JoEllen and Simon

 Family pose outside the Aquarium

All of us!