Day to Day
Folks have been asking for an update blog, and I admit I have really struggled to create this one. I have started and restarted itat least 4-5 times over the course of several days. I keep thinking “Oh no, that really isn’t interesting. That is not worthy of blogging. It is just a boring sort of chronology and day to day minutiae.”
But, maybe it is important to mention all that, too. Because it really is sort of a huge part of this whole deal. SO much of the energy is just going toward jumping through all the tiny hoops set up along the course of a normal day. People talk a lot about bravery and such with this, but, honestly, most days are just a matter of getting out of bed and pointing myself in the direction of the next day. I think it is important to realize that. Maybe the only “brave” or “strong” thing I do regularly is share some of the deep down stuff I uncover while moving forward. So, I think perspective there is useful.
From my perspective, though, I start to wonder why I am taking 40 pills in a day and spending all my time figuring out when to eat, what to eat, when to take meds, how to deal with other bodily functions, when to nap, etc. I usually feel pretty “normal”. But, the normal things I am used to doing get pushed to the side- and then I wonder *why*. Since, really, there isn’t much else filling the void. I pace myself with all these tiny daily household things. And, with some of the symptoms so subtle- I also get into that place in my head when I think “gosh, am I just like a world class hypochondriac?” David says I am well beyond that. But, when I am feeling fine, it is hard to ignore the stray thought.
Then, all of a sudden, I get waylaid by something out of the blue and have to adapt quickly to figure it all out again.
For instance, a typical (warning, sort of boring!) day right now might go like this:
- David wakes me up with something small to eat and a little orange plastic box of about 20
meds that he has lovingly sorted and double checked for me. I take those, eat, and maybe settle down for another hour or two while he gets ready and goes to work.
- David leaves for work and if I am still in bed, he calls the kids to make sure I get up in time to get my 10 am Meds, which have to be taken on time or will muck with the whole day.
- I get up and get someone to walk me down the stairs so I don’t fall. Every stair trip requires accompaniment because I have had enough issues there that no one wants me crashing on my own. Mostly it is when I am going upstairs, but down can be a problem, too. And anyone who has seen our stairs knows they are Just Not Safe. We make a pretty comical choo choo train every trip down though. Up. I have like a burly man (well as burly as the Paris Clan gets!) with his arms ready to catch me from behind. Mostly David or Audric take this chore cause Mo is rightfully scared I will squish her if I fall. I walk behind someone with my hand on their shoulder and tell them to stop if I get light-headed. And if it is really bad, I sit down until I can go on safely. It feels rather vulnerable and annoying, but it makes sense so I am working on it. This sort of interaction, unfortunately, is why I don’t get out too much right now.
- I log in downstairs for a while, do my morning phone calls (mostly medical- nurses, appointment scheduling, etc).
- I return my emails and go through Facebook and try to catch up with everything. I really want to stay connected and involved so I make that a high priority.
- Around lunch time, I try to find more food that I can eat, and I take my next set of about 8 pills. David has been awesomely getting all my pills sorted and set out in the mornings so I can just grab the right box and make sure I have the right kind and amount of food to take with each one. I like the weeks where I don’t have to take my Chemo drugs because that cuts down my total pill count by 12 every day. It isn’t like such a HUGE hindrance to take all those meds, but it isn’t all that comfortable, either.
- Once that is done, I see if I am feeling ok (sometimes I get a stomach ache or otherwise need a rest).
- Then I see if I have enough energy to actually tackle any projects- letters, blogging, organizing finances and paperwork, rechecking my medicines to make sure I haven’t messed up the current batches. Maybe cooking something. Pretty boring stuff like that. I try to touch base with the kids. If there are errands that need running, this is the time when I have to finesse the offspring and try to get my goals to be theirs. Usually there is at least some minor food shopping that has to happen, and Audric is our fabulous errand runner. Once he is in school, it will be a lot harder to deal with this stuff. Like I said, not really all that much amazing to blog about on this sort of thing. It is just really toned-down Life stuff.
- Then, at some point in the early/mid afternoon I go upstairs to use the restroom, or read or something else… And that is when things get hinky right now. Because for whatever reason, going upstairs has a pretty high chance of making me feel quite faint and maybe even collapse on the stairs. If that happens, I am usually down for a few hours recovering. If that doesn’t happen, I am usually down for an hour just resting. There is a pretty good
guess going on that the problem here has to do with a buildup of calcium in my blood from the bone cancer. Unfortunately, the thing that would fix that is an injection I cannot have until they evaluate my teeth, and that appointment has been postponed for the last month because I was in the hospital the last time it was scheduled and it has fallen through the cracks ever since. That is my main medical challenge right now- pushing the hoops to get that done.
- Generally that time period flows quickly into the time when David gets home from work and we have to start thinking about dinner. Lately I have been pretty active, so I have been able to help with dinner a lot more. When I am down, Audric takes the lead and we tend to eat a LOT of noodles 🙂
- After dinner I am pretty typically done. I mean who wouldn’t be after such a grueling schedule, right? I have my dinner meds, then go read my iPad, play silly mindless iPad games, and/or watch some tv. Around 10 I get to take my last batch of meds. Then I am free to sleep as soon or as late as I want to. If I am lucky, I am awake enough to hang out with David for a while before I collapse. In a lot of ways it is a pretty rough existence! Let people give me food. Try to be upright as much as possible- within limit-. Stay warm and dry and comfortable. Remember to breathe and try to stay mentally healthy and involved with my family, friends, and community. Aren’t you glad I bothered to record all that? On the other hand, like I said before, it is probably good to understand that this is what an awful lot of this whole Living With this sort of cancer is like right now. Knock wood. It isn’t scary, just restricting. And, it really does put most of the strain on my caregivers. Keep her safe, keep her fed, keep her from making stupid choices while her brain is having one of its scrambled moments or her body is going through some Dropsy-fainty zone.
Managing daily concerns
As you can see- most of this is just inch by inch by pretty mellow inch. On the other hand, if my symptoms act up (fainting, seizures, weakness, etc. ) All of a sudden, the whole day takes a new direction. Do I just need a sleep? A break? Do I need to call the nurse? Do I need to go the ER? If I do, will I just waste a day getting a blood test and scans and have them tell me to go to the chemo-doc on Tuesday as scheduled? Will they change my meds? Will I need to stay in the hospital- and how disruptive will that be? Where is the balance between CYA, Caution, Prudence, and Necessity? They actually do give me a manual on this stuff. It is red and has a large matric saying which symptoms I should ignore (none) which ones I should call in for (most) and which ones I may need to go to the ER for (most). BUT, it is still me going through it. All decisions are local 🙂
So, yeah, not sure if that is what one imagines- but that is largely the Mundane aspect of my day to day life right now. On very energetic or necessary days, I get out and about a little. Maybe take the bus to the doctor. (ok that happens a lot- we have *6* appointments this week among us- 4 are mine). On weekends there is a chance I might make it to town with one or more of the family or a friend for lunch or something like that. But, you sort of have to agree. There is nothing all that thrilling or scintillating about that sort of schedule. It doesn’t take much to get through each day, knock wood. It doesn’t need bravery or really anything other than just sort of moving forward, trying not to be dumb and push it too hard, and accepting help when needed. There are more considerations than a normal sort of daily flow, of course. I didn’t mention all the stuff about trying to find foods that I can manage to eat, getting enough fluids, actually managing to do all those other biological needs that seem to ordinary but are suddenly spotlighted when 1/2 the meds and whatever percentage of the disease are fighting against them.
The More Surreal
Also, every day has just little reminders that things are… different. Right now I am back to getting teeny tiny hallucinations. Like, I will be reading along and suddenly there is a curled up fairy wrapped around the lettering on my screen. I know it isn’t there, but for a flash it is. Sometimes it is just a feeling or a sound.
Or, most commonly, as I am drowsing in and out in the mornings or evenings I will sort of lose track of what is Real ™ and what is Dream ™. The edges are quite blurry. I know something isn’t *quite* right, but it is tough to figure out what exactly that might be. Or, I will be wandering around with just some sort of haziness that won’t let me connect all the inner thoughts with the outside world. I can still force my way through, but there is a sensation that it is a different physical process. I am pretty sure that is mostly the morphine, and it is largely pretty mild, but it is also clearly not easy to just ignore.
Ditto moving my body. My legs especially are weak. And, of course, I have lost a LOT of weight. That seems to be getting a bit better, knock wood. I am finding ways to manage getting more food and calories into me. But, since October when we arrived I have dropped 20 Kilo- from 95-75, putting me at about 165 pounds, which is less than I have weighed at any point since college. I knew it was happening, but somehow this last week it really became clear. David mentioned something about my muscle tone and I became more aware of it. My arms and legs are both much thinner than I expected, and my muscle tone really does need help. I am trying to exercise a little more. But, it is all baby steps and cautious ones at that.
Also, my skin is sort of…. crinkly and dry. I need to get that fat layer back underneath! I have mentioned before how much of a mind-eff it is to get down to a more societally dictated weight, and know that it is NOT a healthy thing. This is pretty much my “goal weight” for my entire adult life, and yet…… not where I want/need to be now. Working that Mousse man 🙂 All the fats and sugars I can get down- plus, you know, the healthier stuff. But, honestly, they want me to focus on the calories most of all, so cream and sugar and butter and stuff like that become……. Health foods? I know the VEGAN/WHOLE FOOD/RAW FOOD contingent is probably up in arms. But, it is all trade-offs. Everything has to be easy, high calorie, moist, and not make me feel sick. It is a high mark to hit!
Non-Linear, Death and Living, The awkwardness of thinking about this stuff aloud (a little tangent on The Great Unknown and how I view it- just, you know, cause I am sort of in a different position for thinking about that right now– feel free to ignore if it makes you uncomfortable. And know that my thinking about it has NO impact on the timeline of my life. It is just one of those things I have to work my brain through and thought I would share).
I guess in some ways I thought this was a linear story. I pass through all the hoops and adventures and challenges, and in the end I have triumphs and set backs. And, eventually, like everyone will eventually do, I will pass on to whatever things comes next.
I am not expecting that to happen tomorrow. But, I do think it is important to discuss mortality. It is still an uncomfortable and poorly discussed aspect of our lives- and it is something we will ALL face…. Our own, and those of our loved-ones.
One thing I should say up front, because it seems like something that should be made clear: I am not afraid of actually dying- though it makes me feel like I am tempting fate to admit that out loud. I am happy with the life I have lived. I am comfortable with the choices I have made and the efforts I have put forth toward making the world a little better for my having been in it. I don’t have a Bucket List. I just make choices day by day that accumulate into a life I am happy to have experienced and shared with those special people who I am lucky enough to know.
As far as After-life, I have evaluated all the things that I think may happen after Life, and none of it is all that scary. There is no fear in me that there is something waiting out there to punish me. That idea never really made sense to me even as a kid. As far as I can tell, I will either cease to be and leave ripples behind for all, rejoining the energy of the universe and becoming part of The Whole from whence I emerged. Or, maybe there is something that allows me to keep some aspect of my Self and I will go forth to the next adventure. If I have any ability whatsoever to influence the lives and experiences of those I love, I will put forth all the effort at my command to do so and make their lives a little easier as best I can.
So, what does actually capture my worries?
Really, my one Big Fear and Concern is just that I will *not* have the ability to be around helping my family and loved ones achieve their own goals and impact on the world for as long as I think my help would be useful.. I am pretty sure I have said that before, but it bears repeating. You see all those memes about “People with cancer just want Not to have cancer”, which on the bare bones of it is true, I suppose. But, it is more, I think, that we don’t want the damn cancer effing with our most important goals and those whom we love. The connections we have chosen to make are the important things. For me, obviously, it has sort of been the thing I have devoted myself to. Having a long-term, non-curable disease hinder me in that ability is infuriating and scary. And the idea that just being (though through no choice of my own) a cause of restricting and creating more issues for my loved ones is very hard to wrap my mind around. As a mom and wife, my role is well-defined. I support, I love, I help and teach and support, and I accept support and love. But, mostly, I try to help create an environment where everyone has the opportunity to Bloom and Grow. Now, the ways that I have become accustomed to working those issues have changed. Every day is about re-evaluating and trying to find ways of still creating that environment without actually having my full strength or the ability to impact the world in quite the brute force ways I have done before. It is all finesse and guess. Also, adjust and adapt. And a LOT of trying to accept and go with the flow.
I know without a doubt that my kids will go into the world and make it a better place. They already do, each and every day. And I could not be more proud of them and how they have risen to insane challenges this year. The move, the paperwork (visas), all the stupid school challenges (We hope Audric will be in school in 2 weeks….. after being out since OCTOBER), all the stresses of moving countries, and then all this Cancer stuff. Their strength is just plain amazing.
But, I really want them to have access to education and the opportunity to leverage all that amazingness in the best ways possible. With allllll the unknowns and restrictions, it is definitely the thing that worries me the most. Despite being incredibly bright, resilient, strong, kind, and determined people, they are still teenagers. I know that I am needed, and not being at full capacity is just …. well, tragic and infuriating, honestly!
That being said, Death is not really what I focus on day to day- and it would be counter productive to do so. I am no more certain about the time and circumstances of my own death than anyone else… It just happens to be a bit more of an In Your Face sort of issue because so much of our time is spent keeping me healthyish and stable and trying to guess and prevent and treat allllll the little ins and outs of this very odd experience.
All the STUFF that also has to be dealt with and considered
So, while all of that sort of fuzzy muzzy stuff is going on, there is also this huge pile of Normal Daily Living as an Adult stuff that has to be dealt with, too. And seriously London. No, SERIOUSLY London. Here is a brief list of what we have dealt with recently:
- Having to give Gallahad to a new home- quite easily one of the most difficult decisions we have ever had to make and I discussed it more in Face Book. Honestly, I am *still* processing and the mourning is tricky. But, we are confident he will land on his feet in a good, well-vetted home. We got him literally 2 weeks before my diagnoses and it became quickly apparently that it was going to be a struggle to care for a high-energy, high-intelligence puppy while caring for a low-energy, high-need Stephanie. It took several months to actually make the decision, though. If the RSPCA guy is correct, however, Gally should already be settling into a happy-well-vetted home with people who have a lot more focus to give him right now. Unselfishly, all I can do is send him all the well-wishes I can muster and try not to focus too much on the loss on my own side.
- It took over a month to get the landlord to prop up the fence in the back yard. Now we have all these ugly concrete pylons, but I think it will hold through the next set of storms, knock wood.
- It took almost 2 weeks to get the plumbing in the kitchen fixed in such a way we could do laundry again.
- No one *ever* recaulked the bathroom (after 5 months of promises)- so David finally just did a quick and very sticky attempt using the old crap the landlord had given us for his non-existent handyman. It looks… well, horrible and was a complete Curse and Swear day, but at least it isn’t just draining into the entry way now.
- It has taken almost 7 MONTHS to get Audric assigned a school. I cannot even begin to tell you how amazingly frustrating that process has been. Just split-your-head-open and SCREAM insane. Luckily, Audric keeps learning no matter what. But, he literally lost a year of school to their incompetence and it makes us all wanna go just a wee bit postal. The district is on spring break, so he is STILL not attending, but hopefully by next week. The school looks fine, but is far away and all male and has a performing arts and sports emphasis. Lets call it a cultural adventure. Audric will bring a …. new sort of vibe. Also, can’t wait to see him in his awesome black school uniform. http://www.foresthillschool.co.uk/ This is the place. It looks pretty serious- and pretty yellow!
- Mo is working her way through all the hoops she needs to get into University. At least she seems in the right grooves right now, but there are a LOT of hoops to still jump. She has 4 “conditional offers”, which is pretty standard here- they say “we will let you in if you get these test scores/grades/etc.). It is hard for us as outsiders to know how high a mark these conditions are, but, knock wood, DD is a well-equipped and dedicated pupil who is studying every day. So, all we can do is our best— Then we have to figure out how to pay for it all. We have some family assistance and will have some Financial Aid assistance. But, being a Foreign Student means everything is more expensive and it will take some serious juggling to figure this out without my income.
- We *did* get me signed up for some benefits from the US. It isn’t much, but it can’t hurt. And it starts in July.
- We are *trying* to see if I am eligible for some assistance here, as well. I am complicated because I don’t have what they call a National Insurance Number. I think you get that when you are employed… but, since I am a spouse- and since we paid into the German system, there are some weird specifics that might help. There are some definite quirks of arriving in a new country and discovering you have Stage 4 cancer. Again, any money won’t be a lot, but every bit will help. Other than my Transportation, the schooling is definitely my highest financial priority. I am working directly with the government. But, there are some support agencies who may be able to help, too. One sort of off-putting thing- Any aid I might receive will be through the “Special Aid Rules for Persons Who Are Terminally Ill”…. which, yeah, ok, technically (though open ended) and if it helps get the paperwork all set up, fine. Apparently you get special consideration if they don’t have a curative treatment lined up. But, sort of a kick in the gut every time I have to select that option on the phone tree. At least my nurse warned me before I had to call. I thought that was considerate of her.
- We had to renew the passports and visas for both kids last month, which necessitated a visit to the US Embassy. Which is like a huge concrete maze with embedded bureaucracy allll throughout. After waiting in the wrong lines several times we discovered that being US citizens at the US embassy did in fact get us in sooner. It was definitely cold-war era spy movie stuff, though. Lots of guards motioning you through little outdoor kiosks before you actually got to the door. Then you just take numbers and wait your turn, people watching as you go….
- We are trying to get Audric’s braces off. Should only need a couple more months to close one gap, but it has taken SOOO long to get everything set up here, I am afraid that one got lost in the shuffle. He has an appointment this next week. He will be very glad to be free of his constraint, but we aren’t sure how much it will cost. I am sure they will push to get more case, but really, this should oly be the finishing up pluse a retainer, so we are hoping it won’t be over-the-top.
- We also been working to clean up the last few German financial issues that never managed to get swept up in the move (loan insurance on a car we gave up when we moved, our cell phone and cable box fees, the final loan payment for David’s tooth implant, etc).
- There are apparently NO office chairs available in normal retail stores in Bromley, so Amazon is still my new best friend.
- I still haven’t been able to get a hold of Phyllis or her family. This makes me sad. I sent a snail mail gift and I think I just have to respect that her family may just need space. Still, I don’t regret meeting her one bit. She definitely strengthened my heart.
- Since I can’t food shop easily, I am getting better at mail order shopping. The interesting thing is that since it costs about 3 bucks round trip per person to go to the market, the delivery fees are actually sort of reasonable. most time slots are about 4 bucks. So, there are silver linings to living in England 🙂
On the cool more fun stuff:
VISITS! Kerstin and Raquel and Malia are all set to show up this month and as a person isolated in a foreign country, I cannot tell you how awesome it is to have some friends who are mobile enough to come kick back with me! Mom and Mark will be here in July. And I know several other folks are working to get a visit in if possible. I am thrilled. Though, I will have to use bear grease to fit anyone into this house even for Tea. Luckily there are nearby hotels and Air BNB, so it is *almost* convenient 🙂
HENNA! I am finally ready to commit to getting a henna crown! It will likely be at the end of the month when Raquel is visiting. So, Stay Tuned. I am really excited. Something special I really would only be willing to do under these circumstances. And the artist seems awesome. I am allergic to lavender so she is researching other mediums. DD is also helping me with some just fun and playful designs on my feet and stuff. I love her aesthetic.
GARDENING! Audric and I are slowly putting together plans to make our yard space prettier and more useful. I think as we get closer to Warm Weather, it will be nice to have a spot outside on the patio where I can sit in shorts and read and look at flowers and stuff. 🙂 Unfortunately, the Flower store is a little long for my walks, but We can do it in little drips and drabs with me giving Audric photos and links and him retrieving stuff.
Clearing it Out
I feel I have more interesting stuff to share, but right now I think I just needed to clear out my brain. Sometimes venting and getting it out there into the universe or down there on paper is really just what is needed. SO, please excuse this rather spongy description of inner and outer life for this week. Hopefully I will be in a better place to share more interesting insights and happenings over the next couple weeks. We should have Audric’s new school, and new info on my chemo and some new testing etc. I am going to try to pin my doctors down a little tomorrow to get a better feel for how my body is and what is actually going on. Of course, they are always a little reticent, so wish me luck 🙂