Two weeks into my move to Batesville I’m still getting the final details in place. I ran my portable dishwasher successfully this morning after a couple of attempts to get the right adapter to make it happen. I’ve cleaned up the crushed nuts and dropped chips of chocolate left behind by my nephew. I picked up the tools after repairing another Macbook. And I got myself picked up off the floor awhile ago after taking a nap while trying to listen to a Reds game. A gloomy day has broken finally into sunshine and I’m waiting to go shopping later with my sister. This will mark the 14th day here and the 14th day in a row I’ll see a member of my immediate family. I’ll see them tomorrow too; and Friday as well before I depart for a short trip to Milwaukee for the weekend. Whew!
It hasn’t been every day, but I’ve tried to hold true when they are available (which has been a handful of days) to pitch baseballs to my nephew (and nieces). My nephew, mostly, has been making these colorful ‘ninja stars’ that I have all over my front door frame and other select places throughout my apartment. So I’ve basically names our little baseball team the Ninja Stars and this is their ‘clubhouse’. It’s even on Facebook so it’s real! 🙂
Them coming over and my dad and other family members again has made this move so easy and comforting. It has also given me something to look forward to and helps break up my day (not to mention to help me get around to shop and to my appointments).
I did see my doctor on Monday and he is concerned about my tumor marker number going up. I will get a scan in a few weeks and will likely end my current chemo regiment for a different set of drugs. Most importantly though I meet with the oncologist here locally on Monday and once that is completed I can get into the system there to get my chemo treatments in Batesville. So in the future other than an occasional follow-up, scan, or to see a specialist I’ll be getting most of my care done here in Batesville.
The other exciting this I’m itching about is I’ve always wanted a patio with my own flowers. I finally got the patio and my preparations for the flowers are in the early stages. I should have flowers on my patio by the end of this week or early next. Hopefully that will make my patio more inviting as I need to get outside more. I have been doing a lot of walking around town, but I feel like my best work will be done on the patio.
Now that my dishwasher is in place and I have many of the last details of beautifying my new home I hope to begin making some cookies, breads, and perhaps a few other creative yummies. Have to give the kids and other visitors something to get excited about (even though they have received ice cream cones on nearly every visit).
Obviously I love being here. I’m looking forward to what is to come, or who! Hopefully you’ll be my next visitor.
There was something significantly different about this move and finally, as of today, nearly every little detail has been meticulously put in place. What’s unusual is this is very unlike me. Every move for the past 15 years for the most part has been just moving boxes from one place to another and for the most part never unpacking. I live somewhere for a couple of years and repeat the moving process with a few more boxes than what I came with it. This over time made me evolve into kind of a pack rat and before I moved from Milwaukee to Cincinnati I actually made an effort to purge some stuff even though by time the day came to actually move it was still a disaster.
Both of my apartments in Cincinnati had a wall/s decorated with boxes. I usually only unloaded the essentials when I moved in and rifled through the boxes when necessary if I needed to locate something. My last place even though I had a storage unit was still dotted with boxes; mostly full of crap.
Since I was diagnosed it has been on my mind since about assuring that nobody would have to be burdened by having to move all my stuff. Fortunately did I get to put if off for a long time, but was fortunate enough to move mostly under my own power to one more place. Despite spending a week sorting through and purging six 30 gallon cans of crap my load out with my bro-in-law’s assistance was still a bit of a challenge. The load in is always easier and my other bro-in-law and sister came through and got my final collection of crap into my new place. I knew coming in I had a ton of storage and the new place was nearly double the size of my old place. The first night all I made sure that was done was that everything needed to make coffee the next morning was located. Other than that I was wiped out and slept on the only thing flat and intact, besides the floor, my futon for a whopping four hours.
The next morning I met with my dad briefly, had to go sign paperwork, wait for the cable guy, and other than shuffling a few things around I left for the weekend to spend a couple days mushroom hunting, sitting by a bonfire, playing a little baseball, and drinking a bit. It was great, but again my stuff was still just sitting all over my apartment.
Sunday I finally returned to the new place and took a few strides and seemed a bit refreshed. I tackled little by little and the same approach continued into Monday. I was excited about Monday because was of my main motivations for returning to Batesville was to spend more time with my nieces and nephew. I wanted there first stop in to be half ass presentable and had done a pretty good job by time they arrived mid-afternoon. By time they returned on Tuesday even they noticed the significant difference in my progress. Only a few boxes remained. I haven’t napped once, aside from dozing off a bit while watching the Reds before heading to bed, since moving and I’ve continued to be pestered by perfecting my new space and unpacking everything. In the past week I’ve actually created a home for what feels like the first time. It’s visitor worthy. I even bought a new set of chairs, lots of beverages, and the only thing missing is family and friends. I obviously feel really proud of my accomplishments in the past week.
At the same time I feel like my motivation is ‘finality’. Every time I move somewhere I never feel settled. I know this time it’s my last move. I won’t be re-packing this stuff. It’s time for me to enjoy what I’ve collected over the past 20+years that tells so many stories and transitions I’ve been through. It’s been a fun little trip down memory lane in the past week.
The move has meant I’ve had to work on some logistics as well. My dad and sister especially in the past week have been great about helping me get around to some errands and having some company for a meal or two. Most importantly though is getting my medical treatments and such coordinated. I got thrown for a loop today. I was trying to coordinate my follow-up in Cincinnati and my next chemo treatment on the same day next week since Batesville won’t treat me until I meet with the onsite oncologist (a couple weeks out for an appointment). Then, much to my surprise/shock, I was told by UC that my treatments under appeal by my insurance and won’t treat me until it’s resolved. All of a sudden I’m a cancer patient being denied treatments??!! Shortly after learning of this development I got a letter in the mail that I was approved for Medicaid effective May 1st, so I contacted Batesville again to see if there was any way my appointment with the doctor could be moved up. I’m on a cancellation list. Best they could do.
I’m kinda freakin’ out that I haven’t been receiving full treatments anyhow because of my counts, and even though some time for my platelets to recover is certainly a good thing, my greater concern in not getting the chemo to keep the cancer in check. Hopefully everything is resolved in the upcoming week.
In the meantime now that I’ve been to the point of obsession of getting my new apartment in order I hope I can shift my focus back to reading and writing. Only other problem might be all the new exploring available to me in such a small town. That can’t last for long, right? At least the chili I found today will keep me interested in food for awhile. Damn!
Now that the seasons are becoming more favorable and my big leap has been made; traveling has begun to itch at me in a serious way too. Hopefully my state count will be back under fire in the next month or so. I’m certainly ready!
Where to begin….
I spent the better part of my first few days after my move at either my dad’s or sister’s house while my box fort sat idle for most of the weekend. It was necessary though as I was worn out after the move on Thursday. I didn’t get a lot of time to recover though over the weekend as one of my main motives for moving to Batesville was spending more time with my nieces and nephew. Already by Satturday the joined me for a bit while I mushroom hunted, and then we spent at least two hours playing baseball in which I must have thrown 200 or more pitches. I enjoyed nearly every minute of hit despite getting hit by three line drives. Ouchie.
Already the ease of being able to walk to the library, liquor store, restaurants, and more along family and friends just being able to drop by and/or give me a ride is great. The days of anonymity is over though. Yesterday for example I just went across the road to pickup a pizza and a high school classmate was there doing the same. I’m certain that will happen almost daily now.
My new apartment is huge and I think has more storage than I’ve ever had access to. Go figure since I purged like six 30 gallon trash cans worth of stuff before departing Cincy. I still should go through the boxes again and do a second purge. I still rather not have a ton of stuff to move if/when I can’t.
It’ll still be a little time I think before I get back into the groove of writing. For one, my nieces and nephew already are stopping by after to school to play baseball. It’s a good thing I finally got some decent sleep last night as I’ve been so tired. I’ve had no downtime and didn’t sleep in my own bed for three nights. I’m pretty close now to getting settled back in. I’m still trying to locate some things.
Currently I’m enjoying the patio. I have a lot of natural light, but the breeze adds so much to the comfort of the spot. The grass was just mowed this morning too so that’s another plus. I may have had a rooftop patio overlooking downtown Cincinnati, but there is still something about having grass and bushes at your footsteps. I’m going to be spending a lot of time out here. 🙂
The biggest transition now is getting my treatments moved to Batesville and working out all the other details with that. The ball is supposedly rolling, but I haven’t heard much in a few days so I’ll be dealing with that in the meantime. Yes, it’s always something, but that’s life, right?
So that’s where I am right now. I keep forgetting I have a new book to read so I may try to get back to it before school lets out. What a great feeling.
Tuesdays have seemed to produce a pattern of significant inactivity for the past several months. By looking at my pedometer, as one example, it seems getting the mail might be the furthest I get on Tuesday. I figure it’s likely because it’s the furthest date from the last chemo treatment so I’m beginning to wane a bit from being on a higher steroid dosage. Yesterday (Monday) I was a bit more energetic and found my way down the street running a few errands, but I was pretty wiped out and the rains weren’t helping my mood at all. Today was nice as I met the sun and spent my lunch on Fountain Square. Not many of those days/opportunities left.
I made quite a bit of headway in my move yesterday; mostly the logistical stuff. I reserved the moving truck, submitted my address change, called to turn off/on my utilities, and got my bikes on the selling block. Today I made a few physical endeavors by picking through my storage unit and moving some boxes around. I figure on waiting till Thursday and Friday to really start purging and moving stuff as I’ll have way more energy from the higher steroid dosage. I felt great last week towards the latter part of the week. Waking up early and no need for naps. Hopefully I don’t sell myself short this week.
Purging may still prove to be difficult, but necessary. I want the move next week to be as easy as possible. The number of boxes I have is still ridiculous. I find it hard to believe I’ll eliminate what I should, but I’m going to try.
Though I’ll have more room in my new place, that’s not the point. Most of this stuff I don’t need now, and I certainly won’t need later. It’ll feel good to make the loading and unloading a breeze. It’s still going to suck though.
So Finally. After weeks of waiting and gathering and faxing paperwork I’m approved for my new apartment back in good ol’ Indiana. Not the scenario I was expecting 4+ years ago when I moved to Cincinnati, but a necessary move nonetheless. Yeah, I have a lot of physical toils as opposed to the mental and emotional ones, but I feel these are easier as I can see the accomplishments day to day. With a short little getaway this weekend next week will be here before I know it. I have less than two weeks from today to pack it up.
The hardest part is still knowing that coming full circle back to my hometown is coming probably 20-30 years earlier than I would prefer, but I’m hoping to make the most of the months or years I have left. I won’t have to rent a car and pack a bag almost every weekend, and I’ll have most of my family at my disposal. Treatments will likely get moved to Indiana soon too, and outings for breakfast, lunch, and the library more frequent. I have to get back to my book, and find other little projects and endeavors to keep having something to look forward to each day. I’ve been done here ever since I concluded that moving back was inevitable. No more need to grow seeds here. Other than a few outstanding places and things I’d like to experience either for the first time or again, aside from the occasional visit it’s over.
I had previously mentioned this but it seems like a pattern. I was in Indianapolis for 4 years and 4 months, Milwaukee for 4 years and 3 months, and Cincinnati just short of 4 years and 3 months. It’s my city expiration date right on time.
Ready or not, here I come!
This past week was another lost to sleeping and waiting. Once I returned from my 1,300 mile trek out to DC, back across the mountains, and to Indiana for Easter; it was nap time. I was supposed to get some labs done on Monday, but no dice. It would have to till Tuesday. The good news is my blood counts improved some and I was given the OK to go back on my blood thinners. So no big changes. Once I got my results I resumed my sleep.
Other than getting out for some lunch and sunshine for a bit I was still on edge about getting my move in motion. I basically had to wait till today to give the last piece a nudge and my product was to come Monday. I was relieved only to find out I needed more paperwork. So much for cut and dry for what I was told nearly a month ago. But at least I know what I need now. A few calls and faxes hopefully next week and April will be well on its way.
The trip helped me last week and the environment change I think is the biggest thing I need right now. Maybe I can do it in true whirlwind fashion and make it all happen in a couple weeks. I just need that move in date to get motivated. I have bikes to sell and crap to purge. But I need that carrot.
I was so depressed a month ago because May seemed so far away yet I knew March was going to be gone in an instant and here we are! I’m ready to ride April’s wave to May. 🙂
The daily blog hath turned into a long absence. There are many factors contributing to this, mostly malaise, but some travel does the body good. And my trip to DC has opened that flow again. It’s hard to stop the feelings when you are met by so many beautiful views and moments along the way.
Today I finally made that pilgrimage to the Capitol to see the legendary cherry blossoms. After painstaking planning to try and hit the full bloom and the weather in perfect time I succeeded. Less some clouds I hit peak bloom! If I had gone the previous week not only had only a few trees been in bloom, but my trip to Shenandoah National Park would have been thwarted by snow! 3-6 inches of it.
The memorials (Lincoln, FDR, MLK, Jefferson) are still the best part of the visit to DC, but wow, to add the blooms increases the visit exponentially. Other than that I took the rather boring Capitol tour (I would prefer a more thorough tour of the building instead of TMI of three rooms). Still, it’s the center of who we are. That still resonates at least with me.
I’m in the middle of my trip in a rather remote part of Virginia along the Appalachian Trail. I celebrated a bit by grabbing some craft beer and BBQ from the next town over and watched the sunset from the rocky overlook nearby. I checked in early for once and I’m just trying to collect myself after what has been a seemingly long number of weeks dealing with both medical and logistical transitions. Not working seems easy. Trying to keep your shortened ‘termed’ life in between the gutters is a much greater challenge. It fucking sucks to be blunt.
Soon if all goes well, and I’m sure it will, I’ll be living in a new place with new excitement and as always posing new challenges.
I’ll leave with this in regards to challenges. Regardless of the choices and changes we make no matter for better of worse challenges always follow. They may be different from the previous set, but they will be there. Take them, shape them, and face them. There are more around the corner. That’s life. Enjoy it while you can.
Even though I slept a good part of the evening after I returned from chemo yesterday I was able to stay up till past 2AM this morning and was awake at 5:30 then up by 7. After being mostly away from them in the past two weeks it was a welcome return to feeling a bit more human again. You may ask if they help me so much why don’t I take them daily? – well the warning is an excess of the steroid could lead to pre-mature cataracts so I willingly follow my doctor’s orders even if I’m tired/fatigued during that time.
Another update, even though my hemoglobin levels didn’t rebound in the past two weeks, I wasn’t given either a transfusion or the ‘risky’ hormone shot yesterday. I was surprised, but grateful that I went another week avoiding that. Will next week bring me closer to that threshold, possibly, but my treatment regiment continues to surprise me so I try not to jump to conclusions anymore therefore less worrying on my part.
Which leads me to another number, my cancer marker test, did jump out of the normal range for the second time in the past few months, and to its highest number in almost a year. The last time it went out of range (37 is high normal) it was 39 but dropped back under 37. Now it’s up to 47. Perhaps missing a treatment gave it an opportunity to escalate a bit. So hopefully a full treatment cycle this month will tame it back down. If not, well we will worry about it if like my doctor; says “begins to trend”.
On a lighter note, though with a sense of urgency, the forecast for the cherry blossoms in DC blooming was moved up two weeks! If that trend sticks they will be in full bloom next weekend instead of the end of the month as earlier anticipated being it hit the 80’s this week. In the meantime I’ll have to keep a closer eye on not only the blooming forecast, but weather forecast. Unfortunately now I can’t go middle of the week because of the treatments, but will likely have to make a last minute decision to get a car rented, hostels reserved, and roll east.
Another development after reviewing some of the national parks I was looking to visit later this Spring, including Alaska, is it turns out my disability status comes with perks – free national parks admission! I picked up my Access Pass the other day so I’ll be visiting the Antietam battlefield on the way to DC, and Shenandoah National Park on the rebound. Then, of course, I’ll have a virtual national parks buffet once I go out west and to Alaska. That’ll save me some dough and keep me on my toes on that trip.
So my writing bug feels in full swing this morning so hopefully I’ll take advantage of that later. Just writing this blog post this early is a good sign.
Wish me luck!
[On edit]: I finally dropped about 2,000 words this morning for my book after a long hiatus giving me about a 14,000+ word total thus far.
I finished off a few books last week and in between taking care of some important business I mostly slept. On my chemo weeks I have steroids to help keep me afloat, but I abstained from taking even a half a pill in the past week or longer and the result has been periodic to frequent naps and mornings that have been difficult to find any motivation. This has left my days short and evidently short on writing. I feel so broken for a number of reasons, but the biggest one might be submitting to the fact that my time in Cincinnati is ending.
Friday I made the biggest first step as I applied for an apartment in Batesville. I expect to be approved and have a move in date soon and likely will be moving around the end of April or early May. I also inquired about getting my treatments done in Batesville too. Other than trying to get the medical records and insurance straightened out, the ball should be rolling in the upcoming months. I hate to leave Cincinnati, but I need to be where I need to be. Instead of tripping over myself trying to spend as many weekends as possible there and going through the transition of car rentals and packing; I’m ready to settle. The unknowns that have held me hostage for the past two months have mostly been answered finally. I’ll soon be able to begin moving forward again.
I feel utterly exhausted though.
In re-visiting a book, Being Mortal, I did want to touch base though in how I’ve turned courage into inspiration. I re-read (from the actual paper book) the last chapter and a few nuggets came to light that I wanted to share:
At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality – the courage to seek out the truth of what is to be feared and what is to be hoped. Such courage is difficult enough. We have many reasons to shrink from it. But even more daunting is the second kind of courage – the courage to act on the truth we find. The problem is that the wise course is so frequently unclear. For a long while, I thought that this was simply because of uncertainty. When it is hard to know what will happen, it is hard to know what to do. But the challenge, I’ve come to see, is more fundamental than that. One has to decide whether one’s fears or one’s hopes are what should matter most.
I still say get on the Hope Horse. 🙂
He (Gawande) continues regarding his daughter’s piano teacher who is in hospice, but squeezing out a few more lessons before she passed:
Technological society has forgotten what scholars call the “dying role” and its importance to people as life approaches its end. People want to share memories, pass on wisdoms and keepsakes, settle relationships, establish their legacies…
They want to end their stories on their own terms. This role is, observers argue, among life’s most important, for both the dying and those left behind.
This seems to mirror what my past year has been about and what I will continue to achieve as long as I can. Achieve my goals, share my stories, spend time with those who matter, and leave behind more than I could have if I hadn’t be faced with a fatal disease. I keep finding the bright side to my dilemma. I’ll share more about that later, but the chapter I’m about to end in one city will be the beginning of another whether it be a few months or years I’m ready to find the best of a renewed place I was only going to maybe settle to when I retired.
In the eyes of the government as of March 11th I basically will be that – retired.
I have to get back to my book.
Before going to bed last night March had already arrived and I gleefully turned the page on the wall calendar. It’s bordered in green with St. Patrick’s Day and a bunny coming up. I felt really good about this. Besides, I thought last year was supposed to be the ‘year of lasts’.
Since my last post I’ve teetered on the edge of success and exhaustion fighting my low energy from my low blood counts. I was able to have a fun Saturday night in Newport watching several bands supporting the Bernie campaign. Despite falling into exhaustion on Sunday I mustered to go out with my family on a visit to Eli’s for still the BEST BBQ and tossed baseball in the warm February weather for the first time this year. Then it was back to sleeping and sleeping some more.
Monday I finally had a follow-up appointment that was important because this time I had a laundry list of issues to tend to with my doctor. I went home with another prescription and paperwork signed for a procedure/hormone that ‘tells my bone marrow to make more blood’ though one of the risks is death. I had to sign this form in case we had to take this measure that I understood the risk. Along with some iron supplements to help my body heal and get more oxygen into my system, only time will tell if I can bounce back again on my own. Otherwise extreme measures and/or a transfusion is in my future.
So my next lab/chemo treatment is on the 9th. I’ll find out then where my numbers lie and what’s next. It’s getting more complicated, but I needed answers and adjustments needed to be made. Most of those were met yesterday.
Today, just the idea of walking down the stairs and a half block down the street seemed daunting. Yeah I made it there and back, but damn. Unless I’m steroid or beer powered (like Saturday night) I’m pretty much zapped all the time.
Hopefully the adjustments this week will begin to benefit me and I’ll be back closer to my ol’ self by the weekend. First though I need to make it through the Super Tuesday coverage tonight!
But hopefully I can get some reading done before then without sleeping.