Crabby Old Lady's State of the Union
INTERESTING STUFF – 9 December 2017

Six Months Into Cancer Treatment

It's been six months now, half a year since they told me I have pancreatic cancer. I've recovered from the huge Whipple Procedure surgery, made peace with the medications I need to take for the rest of life and am enduring chemotherapy which continues until March.

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One of the things I mentioned in early notes here about this cancer is that I would not allow myself to become a professional patient. Oh, please – was I really that naive? My every day now is ordered by the needs of the disease.

MEDICATIONS
Most obvious are the meds. I count them out once a week into one of those little plastic containers divided into AM and PM. But that's not the full story. There is one pill I must take for before every meal, every snack, essentially every time I want to put even a bite of food or cookie or a piece of candy in my mouth. Hard to remember sometimes.

Two others that are each prescribed for morning and for evening cannot be taken together. And of course, these and all the others never need refills all the same time. It's an ongoing daily chore to be sure each med is being taken correctly at its time of day with the proper accoutrement. I screw up now and then even with a chart taped to a kitchen cabinet.

MEAL PLANNING
Because part of my stomach was removed in the Whipple Procedure, I now eat several small meals a day. It takes a lot of planning, shopping, organizing before I even get around to cooking and I'm still learning that I cannot eat nearly as much as I once did at a single meal.

I think about food a lot – what to have for the mid-morning snack (don't forget the pill), the need to prep vegetables for the lunch-time meal, the midday snack (don't forget that pill). And clean up the kitchen after each meal.

None of this is nearly as much fun as having regular three meals a day that I used to enjoy cooking. Not so much now.

CHEMO SIDE-EFFECT PREVENTION
There are all kinds of potential side effects that come with the territory of chemotherapy. Fatigue is the most common affliction but the list is way longer than that, although no one gets all of them.

So I rinse my mouth several times a day to prevent sores there. I rub a special cream into my feet and hands four times a day in hope of preventing a really gruesome side effect.

To help prevent infection due to what is called a “compromised immune system” during chemo, I always use medical gloves to clean Ollie the cat's litter box twice a day and I wash my hands constantly which, of course, requires more lotion after each washing.

At my monthly meeting with the oncologist yesterday, the oral chemo pills of which I have been taking two twice a day since the infusion chemo began was removed from my regimen. It caused the sudden, dramatic drop in my red cell count that required four units of blood a couple of weeks ago. It also has contributed to the ongoing anemia.

These are much more serious than the hand-and-foot syndrome that the same oral chemo probably helped cause to turn up in the past few weeks. Fortunately, it's not progressed to that gruesome effect So if all goes during December as the doctors expect, I'll be relieved of these difficulties.

The downside is that European studies over several years have shown that combining this oral chemo with the kind of infusion I get weekly extends three-year survival rate of pancreatic Whipple and chemo patients by about 15 percent to 70 or so percent.

But the doctors believe that the extraordinarily sudden drop in red blood cells is serious enough that preventing it happening again is crucial and this move should do that. I have gone along with them.

MANAGING FATIGUE
When I remember to use the tincture of cannabis, I sleep much better – “better” meaning longer than three hours. Even up to seven sometimes and then the fatigue, which builds during the three weeks of chemo before a week off, is more manageable.

MEDICAL APPOINTMENTS
Interspersed with all the daily cancer responsibilities are chemo infusion appointments, occasional tests doctors want, check-in with my primary care physician every few weeks not to mention surprises like the overnight hospital stay for the recent blood transfusions and endoscopy (which came out clean).

How come no one told me how futile it is, with a cancer diagnosis, to try not to become a professional patient? There are so many different things to do and to keep track of to treat this insidious enemy, it is a full-time job.

I try to get through these chores each day without thinking about the big, fat, ugly reason for them. I save that for when I'm worn out toward the end of the day – or, rather, that's when the thoughts none of us ever want to have erupt on their own. A few:

Will I be here at this time next year?
What will the prognosis be when chemotherapy ends?
What if the chemo doesn't work?
How will I die?
Do these negative thoughts affect how well treatment works?

And so on.

It's not always that bad. Sometimes I feel a close-to-joyful acceptance of what I believe is the natural and normal order of life: "Earth to earth, ashes to ashes, dust to dust.”

Just not yet, please. I still have a few things I want to do.

From the first day after diagnosis and for reasons I don't know, I abandoned my usual head-long, deep dive into research when something new happens. In this case, I have limited myself to just the basics of pancreatic cancer and its treatment but few details and no research studies.

Instead, I rely on the doctors, nurses and other healthcare professionals at OHSU who have been dealing with this disease and treatment plan to answer my questions and I do my best to follow what they advise and prescribe.

I know how lucky I am to have been eligible for the Whipple Procedure. When the surgeon first described it to me six months ago, I asked what would happen if I rejected it (it was as awful in his description as it is for real). “You'll be dead by the end of the year,” the surgeon said.

That certainly focuses one's attention. I did the surgery and I'm still here at the end of the year. But mostly I am both too busy with daily maintenance and personally indisposed to see this as a “battle” against cancer - unless the fight consists in this now-professional patient keeping track of all the cancer chores.

Which, apparently, leaves it to you and others to “battle” the cancer, to stay positive for me which you are doing in abundant numbers according to your comments and emails. And don't think that I am not impossibly grateful to you all.

Comments

And then after all this, you still continue with your blog that helps so many of us. For once in my life, I'm speechless. Thank you for so much that you've given to your readers. :)Dee

I'm with Dee.

Your writings here are appreciated, with incredible gratefulness by so many. And yes, you are fortunate to have the outstanding medical care so you're free to avail yourself of endless research and questioning, and can let those professionals do that heavy lifting.

Tiredness is an annoying bitch of body and mind, so I hope you are finding opportunities to balance all the negatives with favored activities, such as music, dancing around the living room, taking an art class, writing poetry, walks, reading , a massage of head, hands and feet, a pedicure, a long bath - whatever rocks your boat.

I’m with Dee too. I am amazed that you find the will to share with us and I want you to know it is appreciated!

Ronni, your description of the daily life of a cancer patient is, personally, most helpful.

It is the regimen I am "watching and waiting" to join (actually I am hoping to avoid, but that choice is one I am iffy with).

The "anticipation" of when and what is one I have running around in my head when I am trying to be at rest. The limbo of a chronic, slow-progression cancer with no cure is an off an on proposition. I can go for weeks not having even a tinge of anxiety, and then have a bout of a week with enough anxiety to not sleep well.

It isn't easy to have those around me understand the feeling of hanging by a thread when I don't exhibit anything but fatigue they don't see.

Thank you for your blog and the revelation of your journey.

What Dee said. I'm with you in spirit!

Dee's thoughts were my first, too. Grateful that you have this passion for doing your blog despite all the effort your care regimen entails. Bravo, Ronni! Not sure I would have the fortitude to stay on top of it all, but you inspire us to do better.

I was just complaining to a friend of mine how annoying it was to have to see my GP every three months just so he can take my BP and listen to my chest. Your post today brought me back to reality. I won't complain anymore.

I am grateful you find the energy to write us. I'm intrigued by your comment on having more to do. It makes me think about what I feel I need yet to do. I will need to reflect on that in the days ahead. Thank you.

Thanks so much for the courage you find sharing your "professional patient" regimen. What you write comes from direct experience which is valuable and welcomed by others with similar issues. Continue taking good care and listening to your medical team. Hugs, hugs, hugs to you.
Priscilla Wright, Fort Worth, TX

Ronni I just don't know how you do all of this living alone. I can't even meal plan for my husband and I.

Once again, a powerful post, Ronni.

Your articulate remarks, said with great honesty, are helpful to us all.

I think we can all relate to the thoughts you write about, including the paragraphs where you talk about the "what ifs" and the hope of "not yet!"

My point being that not many of us have the courage to voice these thoughts out loud. You do.

Thank you.

I wish all of us here, in turn, individually, could show up at your house -- with groceries -- to fix your meals, serve them with the correct pill, clean the kitchen and the litter box, keep your meds stocked and in order, wash a load of laundry, and then sit quietly somewhere out of your way. There are so many of us that we'd only have to do it one day every four or five years.

Of course, that wouldn't work, because we'd all need training. Just think, though: If you were a man with a loving wife, SHE would do all that for you!

Were I geographically close to you, I would ask to come over and be your assistant... do whatever tasks and share delights you would list. Examples, kitty litter box, kitchen sink, housework, shopping, food prepping and cleaning up, reading aloud your favorite poet, essayist, mystery writer, any genre. Instead, I’m pitching in locally to be useful, similarly. I am embarrassed to ask ... maybe over-the-top chutzpa... whether you and April might schedule a reunion if suitable/feasible to you both? I have loved her since the first update she posted on your blog. And you two go back a long time, together through thick and thin. xoxo

Like a mother hen I just wish I could take all of this away from you. All I can do is send positive thoughts your way.

Like Dee, I don't see how you find the time to write your blog, but am grateful that you do.

You are, maybe unknowingly, providing a real education for all your readers and I feel you are to be commended for that. The facts and realities you provide very much help dispel some of the awful hints, suppositions, mistaken beliefs, and such that surround cancer as a disease. You provide a scenario that most doctors don't have the time or temperament to give their patients I think.

I, and I'm sure all your readers, are very grateful for this.

thanks Ronnie,
Marcia

I'm so glad you've find a way to extend your sleep time, when your body gets to rest and regenerate. You rock, Ronni.

I'm with you too...today is chemo day for my daughter...with one more after this...I am battling this for her...and I'll do battle for you too.

Your post is always a statement of strength and I truly believe that all the comments read today is a testament of positive effects of sharing. I had never had my writing published until ten years ago when I shared a piece of my life falling apart and you gently led me from the darkness and helped me realize that perhaps it is better that we don't know what happens tomorrow but just believe we are doing our best. Thanks friend. Prayers are with you.

Respect, Ronni for your endurance, strength and ability to navigate a journey you never expected.

You once told us about the day you walked out of your marriage and created a whole new life for yourself- one in which you were celebrated for your creativity, knowledge and achievements.

The same attributes are helping you now.

Years ago I stood in line for tickets to Tina Turner's Farewell Tour.

Five a.m. the Bell Centre, Montreal.

The lineup was already around the block, but I got two tickets and went with a newly divorced friend.

The show was sensational.

You are sensational.

No finish line.

Your Montreal Fan


Just AWE-MAZING! Everything else has already been said.

Your clear-eyed reporting of what it is like to be you, going through this, is a gift to everyone who reads it. You have helped me, over and over again. I am too much an introvert to be able to talk in public about my own trials, which don't, in any case, come near to yours... but I am very grateful. You have made a big difference in how I understand my own life.

Professional patient? Yes. Being a professional anything should be an accolade. It means you are good at a difficult job.

It isn't a job you wanted to have to do, but since you do, you have every right to take pride in doing it well.

Ronni, maybe this is a stupid question --- have you looked at medical-dosing apps to remind you when/what medicines need to be taken? I imagine you have, but what the hey....
blessings to you!
-Steve

Ronni ~ What they all said times a zillion. You are an amazing role model and our hero!

Warm Regards, Diane

I add my sentiments to the above comments! I am grateful you are continuing to blog and admire your strength and yes, sense of humor, during this obviously very challenging and difficult time. I hope it helps to know how much you are appreciated!
Hugs, Diane C.

Why not call it being an advocate for yourself. :)
My friend Captain Poolie had Lymphoma and brain cancer. Each cancer is different, and this one kept her bed ridden for almost a year. The resultant spinal fractures have her in agony. The worst part for her is an inability to read. For a woman who lived with books in her hand, it's even worse agon.
You do know about Hattie?

I reach out also to SC Jones and Jeannie, members here who are also on their journeys. My thoughts and prayers are with all. Power on! I was one of those professional patients who is still standing today. Keep living, laughing and loving dear folks~~Kate R

Glad you’re keepin’ goin’! Cont. to appreciate your writing in these days when we need all the voices we can muster — BUT remember, you come first and the focus on yourself must take priority. Positive vibes for healing and comfort coming your way from here in So Cal.

Yes to all of the above,

With your “headlamp” of intelligence and honesty (and wit) you are shining a light ahead into the unknown for all of us. It’s so very generous at a time when energy is a precious commodity for you.

Walking through mystery with elegance. Maintaining the most important temple there is, it does take a lot of work and time, and you have taken it on with grace and dignity. (which doesn't exclude some healing tears and doubt now and then) And on top of all this, you take the time to share the journey. Thanks again.......and again........

Just getting dressed in the morning is a chore. Then I have to brush my hair and pin it up. Every movement is a challenge. Just walking into the dining room is a challenge.

Taking my medications is a pain in the a**, I must write them down or I'm not sure that I took them. Every day is a pain. I'm waiting to die. I want to die. I get little pleasure from living. I'm glad that you still see a benefit from living every day. I don't. I'd rather just die and get it over with. I know that you and your other readers feel differently. And I applaud your positivity. I am in constant pain and have been for quite a few years. It is a chore to live from day to day. It's not going to get better, only worse. I have a few pleasures, but would rather just go. I am of no benefit to anyone -- and with the current political situation I am afraid of what is to come.

Getting to this post late, and my first reaction was to say, "And yet." And yet, you somehow have the strength and graciousness to keep going with this blog, for which we are all so grateful. But then I read the first comment and see that Dee's already said it for me.

Pardon me for being very happy to see this post tonight! I thought you had died! Gives me great joy and hope!! Holding u

Meant to say “holding you in the light”! Courage with the cancer. You can beat it yourself!

M.e.

being a cancer patient this year myself I totally can relate. In this month of December all I have is a port flush schedule. No doctors appointments, no stains, no radiation, no surgery, no chemo. Done with all of those teams for now. In January I will start bloodwork every three months to check for tomorrow markers and pray that those Blood test will always show up clear. This past year starting in February was a whirlwind exactly as you described of medical appointment cancer really does turn your life upside down and it all seemed in with the lives of my children, grandchildren, husband and extended family who are all very close to me and who is love prayers and support got me through. Blood test will always show up clear. This past year starting in February was a whirlwind exactly as you described of medical appointments cancel really does turn your life upside down and it all seemed in with the lives of my children, grandchildren, husband and extended family who are all very close to me and who is love prayers and support got me through . Here is to 2018 being OUR comeback year!

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