I’m having trouble writing again. Even though there is plenty of material to draw from, I can’t seem to pull it all together into something that makes sense to someone besides me. (Oh hell, who am I kidding—it doesn’t make any sense to me either.) My thoughts are innumerable, but the process is like having a football-stadium-full of people try to get out via a single narrow door at the same time: some eventually squeeze through, but slowly and painfully.
My therapist, Kathy, suggests I let myself off the hook, that it’s OK to let things be the way they are for now because my Muse will—eventually—take a dump on my head and the floodgates will open. She’s right; I should, but it’s frustrating to have so much going on in my mind and be unable to offload at least some of it in my writing. I have two articles that I need to write (for pay!) and I can’t grab hold of enough substance to get them done. Gahhh!
Meanwhile, I’m not sleeping well—it usually takes me till 1 or 2 AM to fall asleep, and sometimes my thoughts race so fast that all I do is doze on and off throughout the night. I think some of it has to do with my obsession about making sure Will is still breathing. He is nowhere close to dying at this point, but who knows when that will change? It’s like waiting for the proverbial other shoe to drop. Ironically, these past couple of weeks have been his best since we got home from our trip, with minimal nausea and vomiting, and that usually only happens early in the morning.
What I’ve got to keep in mind is something Kathy said about worrying over the future: it does nothing but ruin the present. Anticipatory grieving is normal, but this is time Will and I can’t get back. This lying in bed, ruminating until the wee hours, and waking up in panic mode are for the birds. I remember all too well doing the same things back in 2014, and we all know how well THAT worked for me. I have the hospital records to prove it.
OK, so there are a few thoughts that made it through that metaphorical door I was talking about. But there are a million and one more, swirling round and round, wanting to be expressed all at once. It’s a hell of a time to be depressed and between mental health prescribers; I could use a little boost in my Klonopin dose or an uptick in one of my mood stabilizers. But I also know that what I’m going through is a part of life’s journey, and you can’t always medicate that away.
That pretty much describes Will’s attitude these days. He’s in no hurry to experience the next dimension, of course, but he’s weary of never knowing which day(s) will be OK and which will suck. We’ve missed church for several weeks because he’s been ill so much of the time, and he is angry with his body for betraying him. He’s relied on it for his entire life of working with his hands and his strength, and now it’s turned on him with a vengeance, leaving him weakened, though not diminished.
We had our hospice consult Friday, and he’s made up his mind—no more drugs, no more trying (and failing) to get an investigational radiation treatment approved by insurance. We also have a timeline…six to nine months if God allows, maybe less if the cancer continues to overtake his liver at the rate it’s going now.
There’s so much to think about, so much to plan for, none of it good. I remember when thinking and planning were fun—our future was still ahead of us, and exciting things like getting married and having children were at the top of the list. Now it’s all about comfort care and end-of-life issues, like keeping pain and nausea under control and maintaining his dignity and how the hell are we going to pay for a funeral?!
I’ve been looking through the book the hospice case manager brought us yesterday, and I feel like I’m drowning in information. It’s not like I haven’t seen this material before—we got one just like it when he went on hospice for that VERY brief time back in the summer of 2013—but it’s all so overwhelming now that there is nothing between us and the yawning abyss but a few months.
You’d think I’d never worked extensively with hospice patients and their families like I did during my career. As a nurse, I know too much; as a wife, I don’t even know enough to ask the right questions. There is such a glaring difference between being a nurse and being a caregiver, and I’m not liking the latter role one bit.
But as much as all this distresses me, it doesn’t hold a candle to what Will is experiencing. He’s scared, and understandably so; last night we had the first of what will probably be a series of discussions regarding his wishes. Naturally we both cried, because he doesn’t want to let go of life even as he wants not to suffer, and I’m heartsick at the idea of losing him. Life is very precious to him and I don’t think I’ve ever known anyone who was as grateful for his blessings as Will is. He has not had an easy life by any stretch of the imagination, but he overcame his challenges by sheer force of determination, and of course, by his love of family.
This is the love I’ll remember when there are no more memories to be made. This is the jewel of a husband I finally learned to fully appreciate after the cancer diagnosis (thank You, Lord for these precious years of survival!). And this is the man whose work-roughened hands are the gentlest I’ve ever known.
I know he’s sick and tired of being sick and tired. But hopefully, getting his symptoms under control and keeping him comfortable will enable him to enjoy some quality of life in the time he has left. Mostly, he deserves peace…and he needs to know that we’ll all be OK when all is said and done. I don’t know how I’m going to make that work. But I owe it to him to try.
…and I’ll cry if I want to.
Yesterday was my birthday. I’m 57. Late 50s now, and I haven’t the slightest idea how I got here so fast. I’ll be 60 before I turn around twice. My son Ethan literally almost set my birthday cake on fire with all those candles, which provided a brief burst of laughter in what was just another grey, rainy day much like the ones that preceded it. That’s the problem with January birthdays: the weather is ugly, no one has money so soon after Christmas, and who feels like partying? Not even me, the birthday girl.
That’s not to say that it wasn’t a good day. The family took me out to dinner night before last and fixed my favorite chicken fajitas last night; and Will has had several decent days in a row now, which is a blessing for all of us. He still doesn’t have much energy, but he hasn’t been throwing up as often and his blood sugars have stayed level, even at 4 AM when they’re most apt to tank.
Still, the knowledge that we’re coming to a crossroads is growing more certain every day, and it weighs heavily on my heart. After two and a half years of treatment, he is tired and he knows that further efforts to beat back the cancer are not going to make him feel better, let alone cure him. We’ve done our research on the chemotherapy drugs his doctor ordered, as well as talked to an oncology nurse friend of mine, and it’s one of the hardest courses he could possibly take. In addition to making him feel like death warmed over, it could wreck his ability to fight off infection, which would be disastrous. His immune system is already compromised…all he’d need is another bout of pneumonia or cellulitis with no white blood cells to fight it off, and it’s game over.
Neither of us wants that. So there are decisions to make, but he gets to call all the shots because it’s his life, his body. Only he knows how he feels and what he’s willing to put up with. And whatever he wants, he’s going to get.
Of course, I have a lot of mixed feelings about this. I don’t want him to die a minute sooner than he absolutely has to, but neither do I want him to take treatments that might make him wish he were dead. At this point it’s all about his quality of life; we’ve been lucky to have these months and years together, and we were extraordinarily fortunate that he got better for the cruise and was able to enjoy it. But the inevitable is approaching, and we will count ourselves blessed if we can squeeze out a little more time. Every night I ask God to keep Will with me, but only as long as he can maintain his dignity and not suffer too much…I can’t be selfish like that. I can’t stand to see him in pain and miserable.
No, these are not happy thoughts for a birthday, but I’m thankful for all the birthdays I’ve shared with Will…and this one may turn out to be the most memorable of all.
There. I said it.
Will is NOT doing well. In fact, things are pretty awful, and now he’s going to undergo actual chemotherapy infusions to try to extend his life by…what, a few weeks? A few months? Why not? He’s already spending parts of every day throwing up, and feeling weak and miserable in the bargain. He hasn’t had a really good day since the week after we got home from our cruise. Today he hasn’t been out of his chair, except to go to the bathroom and (once) outside to smoke some of his medicine. He looks utterly dejected, and even though he still wants to fight, he’s beginning to question whether or not it’s worth the possibility of feeling even worse than he does right now.
In the meantime, I’m fighting panic on the inside while doing my best to remain composed on the outside. Thank goodness I had therapy today; I spent a good forty-five minutes bawling my eyes out, which is a luxury I can’t allow myself at other times. Unless, of course, it’s in the late hours of the night, when I beg God for the answers to why all this is happening and there are none forthcoming. I need to be strong for Will and the family, because if I lose hope, that’s the ballgame.
The trouble is, I can no longer ignore the clinical picture in front of me. I’ve seen way too many people who looked the same way Will does now, and it never ended well. This is why I sometimes wish I didn’t know as much as I do about this accursed disease and the inevitability of death when it reaches the late stages. Will has lived 2 1/2 years since he was diagnosed with Stage IV cancer; that’s 2 1/2 years we might not have had if he hadn’t had access to good medicines and care. But now even his oncologist is wearing a grim expression, and while he hasn’t given us a timeline—nor have we asked for one—the unspoken thought between all of us is that we’re in the final minutes of the fourth quarter, we’re down by two scores, and it’s third and long on our own 20-yard line.
Sorry about the football metaphors…I seem to bring those out when things look bleak. But it’s better than bursting into tears every time he vomits, which is what I feel like doing at this very moment as I hear the waves of nausea wash over him like a flood of garbage, just a room away.
So it shouldn’t be a surprise to anyone that I’m depressed again. It’s mild, it’s situational, and I’m not thinking suicidal thoughts; it’s just that all this sucks big time and there is no other place for these emotions to go but inward when I’m not in the sanctuary of Kathy’s office. At the same time I am oddly agitated, and my mind races so fast even I can’t keep up with it. I know this because a couple of people have caught me in the middle of a conversation coming up with ideas that are way down the line from that point in the chat:
“Mom, does chicken Alfredo sound good for dinner tonight?”
What I think:[yesitsoundsgoodyouknowIloveyourcookingIhopeyourDadcanholditdown][ohyeahdidyouknowthey’retryingtopassalawsayingthatpeoplewithmentalhealthproblemscanbebannedfrombuyinggunsIdidn’tgiveupmySecondAmendmentrightsatthedoortomypsychiatrist’soffice!][Andbytheway…]
What I say:
“When you get back from the home show tomorrow, I need the car to go out and buy Zinnie some dog food.”
Yep, I’m a bit distracted. But then, I don’t know how to do this. I’ve never been in this place before, except in the beginning when we thought Will would die within a couple of months. And who knows, maybe the chemo won’t be as bad as we both think it’ll be, and maybe it’ll buy us a little more time.
But the anger burns, deep down inside…fuck cancer, I want my husband to live until we’re both so old we can barely see each other even with trifocals! I want the roses to bloom in his cheeks again and chase away the pallor. I want a 40th anniversary and a 50th anniversary. But I would settle for a break from the puking and the weakness, if only for a little while.
Another Friday, another therapy appointment. Looks like this is going to be a regular thing, and that’s good because I’ve never been this talkative before. Not even with Dr. Awesomesauce. To my surprise, all KINDS of stuff is pouring out of me, a lot of it relating to early life events that he and I never got to because we were always dealing with one crisis or another. This time, I’ve been able to start at the beginning and I’m spilling my guts to the point where I said at the end of today’s session, “Gosh, all I do in here is talk!”
Kathy looked amused as she replied, “That’s why they call it talk therapy, you know.” That tickled me, and I laughed out loud. I am quickly becoming comfortable with her, and even though she’s my junior by a whole lot of years, she is very good at what she does. Already I’m looking forward to the next time I get to go to her office, which has soft lighting and a trickling fountain which provide a calming environment, and talk about EVERYTHING. My bipolar. My childhood traumas. My alcoholism. Especially my frustrations with what I see as a very diminished role in life. Kathy encourages me to turn around that thinking and consider what I do bring to the table—a sense of humor and a deep love of family, as well as a talent for the written word and the ability to live in the moment.
That last attribute took me by surprise. All my life I’ve been obsessed with the future, in particular what could go wrong in the future. But when Will was diagnosed with cancer back in 2013, I realized that every single day is a gift and tomorrow isn’t guaranteed to any of us. And after that long fall from productive member of society to disabled person, I learned that anticipating the worst doesn’t stop it from happening, so why drive myself insane with worry? That’s not to say I don’t suffer from anxiety—I experience it on a daily basis—but for the most part, I’m just trying to enjoy this time with my husband instead of dreading the day when the disease finally wins.
And there has been reason to be concerned. Will’s been sick with a combination of pneumonia and a cellulitis (skin infection) of his lower leg, which started when he scraped it on some coral while we were on Grand Cayman. He was so ill he spent two days in the hospital, and even now he’s still pretty weak. The good news is that the cancer has NOT spread to his lungs as we’d feared, and the leg is looking better every day. Again, we can only afford to live in the present and let each day bring what it will.
In the meantime, I’ve been set up with a new prescriber, a psychiatric nurse practitioner whom I’ll meet in early March. I feel fortunate that I’m getting in to see her in only a couple of months; some people wait three times that long for a provider. I guess they don’t want a bipolar 1 running around without medication. Not that I’ll be without; Dr. A is still prescribing for me and no doubt will continue to do so until the NP takes over. But being reasonably stable, I’m used to going 2-3 months in between visits, and it’s not critical that I see someone right away.
That’s a good feeling. And so is being able to get rid of a lot of pent-up emotions without judgment, just like I used to do with Dr. A. Only in some ways it’s even better, because Kathy has stronger boundaries and doesn’t share much about her personal life. The entire hour is about me, me, and ONLY me. What luxury!
Sorry it’s taken me so long to write my New Year’s post, but I’ve been busy taking care of my sick hubby (?bronchitis/pneumonia?), watching football (the Chargers lost their 12th and last game of the season, dammit) and, well…not being in a reflective mood. I’m not sure why, since the advent of a new year always makes me want to assess the one just past. But one thing I can say for sure: 2015 was one HELL of a lot better than the previous three years.
I mean, it was a huge improvement. In 2015 I escaped homelessness, got Social Security, and went on my dream vacation. I also was relatively stable for the vast majority of the year and managed to do some good work on myself, even if I did lose my favorite doctor and have to start over with a new therapist. I spent an hour on New Year’s Eve with a very nice young lady who seems to know her stuff and I can already tell she’s going to pick up where Dr. Awesomesauce left off.
To be fair, I warned her that I adore the man and that no one can ever take his place; however, I got the feeling from our first meeting that she’ll do just fine. I have yet to be assigned to a psychiatrist or mental health nurse practitioner; that happens after three visits with “Kathy”. I guess the powers that be want to be sure I’ll follow up properly and continue with treatment. They won’t have a problem with me there—I KNOW I need therapy and meds. Heaven knows where I’d be without them.
Which is why, if you asked me to name the single most important thing I learned in 2015, the answer would be this: if I don’t have my mental health, I’ve got nothing. I don’t have the luxury of defining my illness as a mere existential crisis, or ignoring the need for vigilance. Nor do I have any business trying to fix what isn’t broken…there’s a REASON I’m on so many medications. I am no longer under any illusions about being “cured” of bipolar disorder. I may not always need this much help in managing it, but that day has not yet come and I’m not going to waste any more time stewing about it.
I’m not sure when I came to that conclusion. I don’t recall having an epiphany of any sort. But sometime during the past year, I finally accepted my lot in life. I’m doing reasonably well (except Dr. A still won’t say I’m in remission) but things can—and almost certainly will at some point—go sideways. It’s the nature of the beast. On the other hand, there’s no need to live in fear of the next episode; why ruin a perfectly good streak of stability wondering when the feces is going to collide with the rotary ventilation system?
Just a few thoughts on how my 2015 went and my single New Year’s resolution to keep all of the above in mind. I don’t make any in most years because I always seem to set myself up for failure (“lose 100 pounds”, “start an exercise program”, “volunteer more often at church” etc.) and then wind up feeling guilty when the inevitable happens and I lose my momentum, causing me to give my resolution less than my best…or to give up completely.
Can’t let that happen in 2016. Happy New Year!
or whatever will be, will be.
Doing my best to move on in a post-Dr. Awesomesauce world, I did exactly what I said I would do and called the county mental health department last week. I was immediately encouraged by the attitude of the receptionist, whose voice was cheerful and who seemed very interested in what I had to say, and by the intake coordinator who called me back the next morning. They’ve already found a therapist to work with me, and while I won’t be able to see an actual prescriber till March, I think Dr. A will continue with medication management until then.
That’s not to say I’m not devastated at losing him. I’ve shed more than a few tears and I wish I could go back for one more session just to say good-bye and have closure. Besides…what other doctor will treat me like I have a brain, diseased though it may be? Will I find another mental health provider who will serve as my cheerleader, my advocate, my r0ck? And who on earth is going to tease me endlessly about that ridiculous yellow toucan shirt?
I guess I’ll have to settle for sending him a Thank You card with a few well-chosen words of gratitude for taking such good care of me and for the time he literally saved my life. It seems so inadequate; he gave me almost four years of sage advice, careful medication adjustments, and a million and one laughs. But what must be, must be, and I’m going to have to make the best of it.
This is a far cry from where I was even a year ago. Then, these events would probably have destabilized me to the point that I would’ve needed intensive crisis management…maybe not like I did when I was hospitalized, but I would not have done well at all. Just the idea of losing Dr. A used to inspire panic whenever he’d make noises about leaving the clinic to devote full time to his private practice; once, I went into a horrific mixed episode after he told me that. Maybe it’s just that I’ve seen this coming for a couple of years now and it’s not a shock anymore…the only surprise was the way it happened. But I’m going to be OK, even though the ground is definitely shifting under my feet and I don’t know what my mental health care is going to look like from here on out.
And it is the uncertainty that weighs most heavily. I could end up with some jerk who messes with my meds and screws me up royally. I could end up with someone who’s in it just for the paycheck and doesn’t give a damn about the patient. But I could also end up with someone who’s just as wonderful in their own way as Dr. A is in his…which of course is what I hope and pray for. I have come to the realization that my mental health is the most important thing in my life, for without it, I can’t manage my life.
I’ve got my intake appointment on Wednesday. Wish me luck!