A TGB READER STORY: How Can I Help You?
Respite Recap Plus The Alex and Ronni Show

Trying to Make a Respite From and For Myself

Following a diagnostic procedure the day before, on 1 June 2017, a surgeon stood in my hospital room and told me I had pancreatic cancer.

Oof. I wouldn't wish that moment on anyone.

I had no illusions about the disease. My father had died of it and I knew that although few people get it (compared to breast or lung or prostate cancer), most of them die within a year or so.

A week later in a meeting with that surgeon and an oncologist, I was told that I was a good candidate for surgery because the lesion was located at one end of my pancreas and I was in excellent physical shape despite my 76 years.

They didn't pull any punches about what that surgery – called the Whipple Procedure – involves. In addition to removing a whole lot of one's innards (half the pancreas, the entire duodenum and gall bladder, a portion of the stomach and some other, smaller bits and pieces), all the connectors among organs would be rearranged and after more than 12 hours in surgery, it would be up to six months before I was completely recovered.

However, it would give me more months of life than I would have without the surgery.

A funny thing happens when you hear something like that: I found out how much more deeply I care about being alive than I'd ever thought about before.

As I've mentioned here, I made the choice right away to follow instructions of my surgeon and other physicians as closely as possible and let them run the show because they had so much more experience at this than I did or do.

That strategy has worked well for me. In June it will be three years since the surgery and although I've now also been diagnosed with COPD, pulmonary rehab gave me good tools to use to live as well as possible with that.

Here's why I'm doing this recap today: I've felt good or good enough for so long that I would like to experience – make that RE-experience - normal life, life before cancer. Because for the most part that's how I feel.

Yes, my energy is way below what it was pre-cancer and by mid-afternoon, I'm done for anything much more taxing then a book or movie. Residual pain, mostly minor, and some other physical artifacts get in the way sometimes but they are not debilitating.

Pills, inhalers and diet requirements need daily attention. And when I forget my new circumstance and walk at my previous speed, COPD forcefully reminds me that is no longer possible, as I heave to catch my breath.

Then there are the medical appointments. In person check-ups and check-ins, blood draws, port flushes, scans and more. I know all the doctors, RNs, technicians, schedulers and medical assistants quite well now. I think of them as friends but I wouldn't mind less time dealing with cancer and COPD.

If you've been hanging around here since this journey began, you know how I railed against becoming a “professional patient,” but that's what I've been now for a long time and it's not going to change.

I'm not complaining about the facts of all this which, under the circumstances, keep me rolling along quite well. And with a little practice, as new needs came about, I've folded them into daily routine not too much different from brushing my teeth.

But it's been long time and I'm tired now of accommodating cancer and COPD. I'm tired of so much of what I do every day being related to two deadly diseases. I'm tired of wondering if every twitch is a sign that the end is nigh.

Please don't think that I am wishing to die – far from it. Nor am I slipping into fantasy.

What I want is to figure out a way of being, of carving out a space to live in that doesn't always include disease at the edge – and forefront, too - of my consciousness.

Sometimes the wish comes to me as empty space and time, when cancer and COPD take a nap for awhile and leave me as I was before all this happened. A mini-vacation. Maybe even a whole day of it now and then.

Don't get me wrong. I am acutely aware of how lucky I am. Most people with my cancer are dead long before now. But I wish I could figure out how to make a respite for myself, some time to pretend – nay, forget - for a little while that this didn't happen to me.

Am I asking too much? I think I can't be alone in wanting this and that I can continue to be the realist that I am while taking a little vacation. I just haven't figured out how to do it yet.

Comments

You have just described my current existence. A variation on a theme, of course, but basically the same. I have no advice. My cancer is incurable, but treatable. It dictates nearly every aspect of my life and I hate it. My current (time-limited) target therapy treatment is so new that there is no data on what - if anything - comes next. Though I’m coming up on 5 years of survival since diagnosis, I still feel like I’m running into some kind of mental brick wall when tying to make any kinds of plans for the future. In my case - and maybe everyone’s at this age - those plans are mostly of a financial nature, the only aspect of my life that I seem to have any degree of control.

I can forget for short periods of time -mostly thanks to watching movies or television series (comedies or westerns are the oeuvre for me). Or spending time with my very young grandchildren, but those are rare occasions. So that's all I've got - my only suggestions for brief respites.

For all the terrible things we've heard about the U. S. medical system, it does some wonderful things. But it sure helps that you have a positive, fighting spirit. Your one comment struck me in particular, one that we should all pay attention to, whether we're sick or healthy: "I found out how much more deeply I care about being alive than I'd ever thought about before."

You are singing my song Ronni, same tune different verse.  I am older than you and the fatigue, weight loss, and loneliness are what push me into that search for respite from the shear weariness of it all.  

I do find moments of that longed for respite in music and on occasion, poetry.  It seems too simple as I write this, but it gives me "a moment" at least....and the stacked moments are all there is if we believe the philosophical  writers throughout history.  

As I read your words today this is came to mind. The velvety baritone voice of Ed Ames singing "The Color of Snow".... it is easy to find online.

I was always sick, bad lungs (asthma, etc.). I was bedridden until 10 and never took any PE.
My vacation was boot camp in the AF. I was rejected for service during Nam, but my records burned up in the federal archives fire of the '70's. I somehow managed to get accepted
during the eighties. During boot I could not get sick (a one way ticket home). I had no other job offers. It was do it or else. I could not get gout again. I made it. I did over six weeks with no medication! I impressed myself although I could not chortle about it. No pills or inhaler.
I served in three branches and a total of 21 years. Hard to believe. For once in my life I was
not beholden to the pills and inhaler. It felt good, that short respite. Now that I am older,
the pills and inhaler are always here. I'll never how great it felt to be "normal" and just another body again.

It all comes down to the decision we all sometimes have to make for our pets--quality of life. It's your choice...until it isn't.

Wow, this is a tough one. Sometimes it seems as if we all believe we will not die until handed a diagnosis. Then reality changes and life becomes that of patient. I am not there yet but went through the process with my husband who had ALS. There were days we just wished we could walk on the beach and then go for breakfast but that day did not come.
As a nurse I have seen the weariness that having to deal with the medical system as a major part of your life brings to people and for some the cost benefit analysis becomes too great.
I’m glad you said you are not at that place because you still have so much to share. I wish I had an answer for how to capture that carefree moment when the illness is not the elephant in the room that follows you everywhere.
I hope others have some good ideas for you. I can only say I am so glad you are still with us.

I'm still young(er) and lucky (so far) to not have to deal with the kinds of things you continue to deal with. I assume one day, something will give and that's when your experience and how you've shared it here will give me strength and inspiration. There's so much more I could say, but I just want to say thank you! Although we'll never meet, I consider you a dear, dear friend as you've shared your life, your heart, your ups and downs, your sadness and happiness, your knowledge and insight learned on your journey, and everything in between. Thanks Ronni! <3
Carol

Most old people with chronic health problems, potentially terminal or not, derive a lot of benefit from spending time with others such as their grandchildren. The closer they are to these others, the better they are able to minimize fixating on their own problems. The relief from inner-directed thoughts about one's own plight that is obtained from focusing concern on another person can be amazing, i.e. better than an anti-depressant or other drug.

If your energy level permitted, maybe you could find a young person or persons to mentor and then become involved in their lives thus focusing your attention away from yourself and toward them. I know you think this blog and its commenters function similarly, but I have not found that virtual relationships are satisfactory substitutes for IRL ones. Not even close.

On another subject, I've wondered what the cause was for your COPD. Was it a side effect of the chemo or other therapy for the cancer, or the cancer itself, or unrelated to the cancer and its treatment?

I'd give you that 'vacation' if I could. I expect all of us followers would, too, if only to make an attempt at balancing all of the generosity you've shown through these posts.
Instead, I can only say Thank You.

And thanks, Charlene, for the mention of The Color of Snow.

Oh, I so get what you are saying, Ronni! I wish I had an answer, for you and all others who are in a similar, or even remotely similar situation. An in-home retreat............now, this is fantasy..........an angel comes to your home, does all the cooking, pill counting, ALL housework and shopping, gives you divine daily massages, meditates with you, prepares a warm bath in which to give you a good but ever so gentle scrubbing, and plays divine cello music before you sleep. Anything missing? Just ask. If I were younger, I would start doing this! I would love it!
The only link to reality that I see here, is there are amazing massage therapists who will come to your home. Word of mouth being the best way of finding one.
Do you have anyone who would come to your house for whatever style of meditation the two of you would enjoy? This too, a spirit lifter. A poetry reading group? Please excuse my suggestions if they are pointless or worse, obnoxious to you. Keep asking though, as the universe, the divine mind, has a weird, and often convoluted way of responding. And no, no, you are not asking too much, ask away! (this will be way too crazy for many, but some of us readers could up the ante by asking that what Ronni needs be given. Just saying.)

Ronni, you are not asking too much. You are being totally, divinely human.

Salinda has a very good suggestion and I just did it. I am asking the Universe that whatever Ronni needs to be given to her.
Ronni, you are such an unselfish inspiration that you deserve the best from the world.

Ronni, your beautifully honest post made me think of two things:
1) The comment from yesterday's reader post that she wondered if "we have too narrow a definition of what it means to be human or what constitutes a life worth living." There can be no question in the mind of anyone who reads your blog that, in spite of all your limitations, you are surely living a life worth living. Your impact on the lives of so many people is palpable and remarkable.
2) My husband, who died almost 5 years ago after struggling for a long time with COPD, cardiac issues and intractable pain, once said to me, "I just want my life back." When I reported that to a therapist I was seeing at the time, she said, "None of us can get our life back." That comment -- though not of particular help to my husband -- helped to ground me and, indeed, still does, as I now deal with some painful, though not at all life-threatening medical obstacles of my own.
I doubt that this is helpful to you in any way, but maybe we just set ourselves up for more frustration and anger if we try to reclaim the past.
Don't know -- but then the older I get, the less I know.

You've stated, with eloquence, an entirely reasonable and soulful request. And it sounds like life offers enough worthwhile moments to keep you here, though it's sheer hard work.

I have seen various strategies for the 'vacation' or respite you long for. IMO this is the time to do things you might have though too impractical or indulgent, from a nice outfit to paying for a friend's plane ticket so you can see one another. You can't control some of the physical symptoms, but within those days when you feel pretty good, I hope you can choose to do some pleasing things. Also, I hope permit yourself to make requests of others, things they can do for you. "Bring some other women and play Texas Hold 'Em with me", my dear friend asked.

Depression is a very common, and it is super hard to muster the energy to employ distractions or respite-granting activities when one is depressed. Should you feel that, it is as important to address as any other aspect of your care.

Life ends.
Death comes no matter what.
What difference does it make if it comes early or later. We all die.
Wishful thinking will not bring back a young life.
I say this because only yesterday I was thinking along the same lines that you’ve expressed today.
To stay in that place too long, of missing the past, is dangerous in that it only breeds melancholy.
Maybe go and help someone else?

I do not offer advice, but just to share several things I've recently found helpful in dealing with a multitude of chronic (not likely to ever "get over them") conditions. The first came as a result of reading John O'Donahue...I separated each condition and regarded the possibility of its being a friend, and gave it a name. This took several days! Then I returned to meditation...seriously being patient with myself until I could imagine other places besides the one where my body was sitting. So far it's helping.

I don’t know what would work for you except for you to find ways of doing whatever gives you pleasure for even a short period of time. Find ways of spending time in nature, a short walk in the arboretum, visit the Japanese Garden, spend a day at the beach watching the waves roll in, a day trip to Mt Hood.
I find distraction in reading fiction or playing a game on my phone.

I don't know if this is any consolation to you. You have, through your blog and sharing, contributed to the lives of others by writing of your experiences. Some may have benefited greatly from this, perhaps more than you know. Without the cancer and COPD, you would not have had that opportunity to help others.

No advice other than to focus on the things you enjoy and put the rest on the back burner. It's so easy to grieve over what we have lost instead of blessing what remains.

I remember some time ago you were pondering a psychedelic trip... there's a reason we call it a trip... it can be a bit of a vacation, a moment in time when we are simply there without anticipatory pressures. I'm offering this not as avice but as a reminder. Perhaps you have someone nearby to discuss it with.

Sound is more powerful than I ever gave it credit for. This website has a free demo that brought me some measure of peace and equilibrium. Remarkable music, but not exactly “music:”

Sacred Acoustics Om,

All of us receive a death sentence the moment we are born. Obviously that should not make light of terminal illnesses or the fortunes of war, things that may hasten our death. But surely as we age—especially those of us who have reached the age of 80, which means the inevitability of death is upon us—surely we can accept death and move on with whatever life we still have even if it means we must alter the day to day activities that we once took for granted. As one of our circle used to say, it is what it is.

Cancer is probably the star of this birth to death roadshow, but many of us have conditions that are fully as life-threatening such as heart disease or kidney impairment. Most of us have conditions such as arthritis or neuropathy that, while they don’t portend imminent death, vastly impair our ability to live life as we once did. But even if we can’t get the old life back, we can enjoy many aspects of the altered life we now have.

If we have to slow everything down, so be it. Most of us are by now caught up in an unalterable routine of counting out or taking medications. If we can no longer travel or hike or climb, even the stairs of our own homes, even if we will never again have those moments or days when we don’t have to think about aging and death—none of this prevents us from being who we are now and having the life we now have.

Thank you Ronni and everybody for your comments and suggestions today. I've been in a blue funk and this has been like getting a group hug. You are all so wise.

I wish you well in finding periods of time offering the respite you desire. Getting our minds outside ourselves for any length of “respite” time requires distractions I think. Probably different ones work at different times and likely vary for every person. There are times when becoming absorbed in another person serves that function for me. Other times getting lost in favored music, reading a book, other favored interests can release me from myself and daily life’s realities for a period of time. Spending time outdoors absorbing nature’s sights and sounds can provide an escape of special value uniquely spiritual for me.

I did think, too, that another psychedelic trip might be good. It seems to give a whole different perspective on things.

I’m not in your shoes yet, but know someday I will be and to be honest, I’d rather have your situation than to get Alzheimers or have a severe stroke, which would destroy my very essence and mind.

As to wanting a respite...we all would like that from time to time regardless of the situation. I wouldn’t want to go back to the past for too long though, as my childhood and teenage years were lonely and my marriage when it was wonderful early on, would cause me too much pain, as it eventually soured a bit.

As someone said, I think it just is what it is. I’m sorry that I am of no help to you, except to tell you I follow lots of blogs and yours is my absolute favorite.

So much heartfelt wisdom being shared here, i am deeply grateful to each and every person who posted. And inspired by you, Ronni, for sharing your precious time and energy with us on this blog.

Finding respite from something that is consuming so much of your life is perfectly reasonable and emotionally healthy. And maybe respite is unique to each of us.

What has fed your soul and made you feel most alive in the past? Is there something of that that you can bring into your life now? Perhaps in a less physically demanding way?

Ice cream! And visits from April, your devoted friend, and Hank, your adorable grandson. Wishing for you such treats or any of your choice! XOXO

We can all provide a listening ear and empathy, send our love and wishes that we could wave a magic wand and change your life back to times when you were more content, if only for a while, but probably none of us -- possibly no one -- can give you what you so long for.

I think the most likely thing may be to consider doing what a couple of others have suggested, escape reality with another psychedelic weekend, or just escape today's reality with a short trip. Can you take a long weekend and just go somewhere and experience life from a different perspective for a few days? Perhaps a few days in a nearby b&b or monastery mini-vacation site? There are some wonderful places I've read about recently in Washington, on islands where lavender is grown and retreats have been created around that. One particularly lovely sounding one was called OrcaSong Farm. I would love to go there myself, but I don't think that's in the stars. But it's not so far for you, and you have only yourself to care for now, so it could be doable. Perhaps you could check it out.

Oh, boy, can I relate! I find that peace in certain moments - loving or intellectual stimulating interactions with others, contemplations on nature, engagement with history or thoughts of the eternal - all those experiences or phenomena that transcend me as an individual. I can't get back the past or what I call my pre-lapsarian self. Nor lose the regimen or ruminations that my health status saddles me with. But I do find some respite from (or abstraction out of) the reality during my days. Hoping the same for you.

Roni- Prayers for your emotional stamina and for your radiant health. In this month's Sun magazine (Issue 531 March 2020), there is an article by Louise A. Blum ("How it Ends") Page 24 about the process a woman went through as she died of breast cancer. I learned from it. Thought of you and that you might get something out of it.
Thanks so much for the life you live every day. You are a precious being.

You are so good to share parts of your journey with us. I hope you find some way to take short vacations from your health conditions, someone suggested a massage therapist to visit you in your home. Bless you and I hope this year is a good one for you.

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