A TGB READER STORY: The Elusive Monster
The Alex And Ronni Show

Cancer Update – 28 November 2018

Because I'm at Oregon Health & Science University today for doctor appointments and a chemo session, it would make better sense for me to have saved this post for Friday or Monday. But it's been on my mind for a few days so why not.

What continues to amaze me is that I can be under a death sentence and still feel as good as I do. All cancers are different in different people but I did not understand before that it is possible for a terrible disease to be secretly ravaging your body while you go about your daily business unaware.

Not counting chemo after-effects, I wouldn't know I'm sick if the doctors hadn't told me.

Well, most of the time. It took two days after my previous two chemo sessions before the flu-ishness took over. I spent the following two days in bed feeling pretty much as I have with any past bout of influenza – aches, pains, sleepy, miserable - and then I got better.

That was the first time. The second time, the sickness lasted longer by a couple of days and following that, my energy has been the lowest I've felt since last year's surgery. Not to mention a few days later when out of nowhere my temperature jumped to 102F. But it was back to normal by morning.

Still, I have more good days than not and as long as that is so, I will continue the chemo. I know some cancer patients forgo chemo altogether and that's their choice. Mine, according to the doctors, slows the growth of the tumors and will give me six to eight months of reasonably good life before the cancer takes over.

And I definitely need the time. It's amazing how much work it is to die.

My end of life documents are in place. Arrangements have been made for my financial accounts to be available to my heir immediately following my death. She and I have regular conversations so she's aware of a good deal of what she needs to know.

Nevertheless, I am making a booklet for her with the details of all my household and other accounts, computer passwords, necessary email addresses, locations of important papers, insurance, auto information, etc. There is a whole lot more to do than I had realized at first thought.

And I still haven't arranged for my cremation. I can't tell you why that is and I need to get it done. For god's sake, it only takes a phone call.

Also on the list is to clean out all the detritus from the house. Guess how far I've gotten with that.

So these things, with the blog, are my days. I have no idea how other people in my predicament spent their time but I like my little life and want to keep it for as long as I can.

Oh, did I mention I lost most of my hair after the last chemo session. Do you recall that phrase people often use about their hair “coming out by the handful?” They aren't kidding. It's exactly true.

Four or five days after the chemo infusion, I was shampooing my hair in the shower and a huge handful came out. Then another. And another. And another leaving me with four or five hanks of hair hanging from unrelated areas of my head.

It was ugly so I chopped them all off and tried to even out what hair remains with the scissors. I have no doubt I'll lose the rest after today's chemo session. I have plenty of hats and a wig is also in my near future. I don't want to scare people with my bald head.

Day to day, I worry that the doctors will find reasons to stop the chemo before my six-to-eight months are done.

And I'm frightened some of the time in an overall, existential way that makes it hard to breathe. I may have a solution for that I'll tell you about soon.

Meanwhile, here's something I'll bet you didn't know about cancer: it takes away your cooking skills.

Okay, not exactly. It's just that I have lost all interest in and patience with cooking. After a lifetime of finding it to be an interesting, creative, not to mention tasty outlet, cooking has become way too tedious and time-consuming.

Nowadays, if I can't just heat it up in the oven or microwave, I'll eat a peanut butter sandwich. I am also investigating restaurant delivery services.



Comments

Ronni, Thank you for another life lesson. You are so important to us.

...and all the unnecessary, boring, tedious, and unsatisfying tasks either fall away or are replaced by someone else ‘s participation. We want you to have all the time you want and need.

Ronni, I just read the Washington Post article about you and had to find you. I’m Linda, age 67. Had breast cancer at age 53. Mastectomy got rid of it and seven years later had a preventative mastectomy on the other side. A biopsy showed slow growing cancer in the second breast. After the first cancer I began to prepare for a sudden unexpected death. Threw away old diaries I didn’t want anyone to read. Planned my funeral. Even purchased a headstone and had it engraved (my husband refused to have his name put on it - that’s OK). Always thought I’d be buried instead of cremated. Then I decided the thought of being six feet below the ground was AWFUL. My body would literally freeze each winter. I’d rather have my body burned, which would be over with relatively quickly. I documented my wish for cremation, and felt a sudden relief!

I’m so glad I found your blog and Twitter account. I think of my death on a fairly regular basis (since cancer) and it comforts me to meet someone like yourself. For now I have no questions for you. I will. I hope you take care of your cremation plans because I think you will be glad you did. Please let me know you read this. Thank you, Linda.

Thank you, Ronni, for these honest updates. It's good to know that you're still able to continue a regular schedule of blogging and communicating with your readers, and especially good to know that you are still enjoying more good days than bad. May both of these continue for much, much longer!!

Have a good session (if you haven't already) and get some pretty headgear! It is warm to wear in winter, which is appropriate! You remind me that I need to go visit the place that offers green burials, which I and a friend are interested in exploring. Hope you have a good day! Barb

I've seen people use scarves in a fashionable, lovely way when undergoing chemo and there must be internet sites for ideas and how-to directions.

Keep on keepin' on, Ronni and love your life. You've developed an effective, workable attitude so be loud! And be proud.

I was dismayed when my hair fell out from chemo, but then a fellow patient told me about [brand name] wigs. They're wonderful and very reasonable. As I too have cancer I can't tell you how valuable your blog has been to me.

Ronni, I'm glad to hear that you are still feeling so well (other than treatment after effects). As for hair loss, I underwent a cervical fusion some years ago and because it was a pain to deal with my hair when wearing a cervical collar, I got a buzz cut. I found that wearing good earrings helped with the look. But that's not why I'm writing. I wanted to mention that I had great experiences then with delivered meals. I'm sure that you will find good options, which have only improved since then. And I also LOVED having groceries delivered during that time when I couldn't drive.

you are a powerful woman. More strength to you. MORE LOVE TO YOU. May kindness and love be returned to you in millions of ways.

Your continuing these updates is a powerful validation of your life and honesty. Keeping on keeping on. In spite of. Because of.

I am inspired and grateful.

XO
WWW

Dearest Ronnie.

You have no idea what a favor you’re doing your heir by taking care of so many things ahead of time. My brother-in-law suddenly dropped dead last summer. He was a hermit and a hoarder. The stress on my husband of clearing out the mess and plowing through the paperwork has been unbelievable. (Thank heavens certain types of accounts require one to name a beneficiary.)

The lesson to us is to get our paperwork and belongings in order, so our son isn’t left with the same kind of mess when it’s our time.

Glad to hear the chemo gives you more good days than bad.

You're in my thoughts today and every day. Your remarks on removing stuff from your house struck home. I've got an extra bag for the trash this morning and one for charity that I'll drop off today. Why leave this stuff to my sons to deal with at very inconvient time.

Sending you "virtual" hugs and love.

Hello Ronni,

Reading your message I am inspired by your words! It can be overwhelming at times. However, to face this challenge with inner strength is amazing. When my husband was fighting his brain tumor we would make the most of our time together. Gratefully he had 5 1/2 years extra because of his oncologist who monitored his chemo-therapy. I cherish those days.
Being practical is good and also saying goodbye to those who mean the most. May God bless you, Nina

I smiled - laughed - cried - empathized - and wondered in amazement at your ability to do so much. What I hate most about cancer -- having it, being treated for it - - or other illness is how it makes you feel. Your energy and ability to do so much to get your life and house in order just amazes me. You are much like a friend who is going through a different cancer but doing similar organizing of all things. My mother (z"l) did the same when she knew she was dying.

Inspired? Yes as others have said. And guilty -- that I kvetch more often than not bec I feel awful. There are few places to say that esp. when one is still working full time and dependent on work and income AND for something to do and give back.

Thanks to WaPo for talking about you and for those who found you as a result.

Oh Ronni, how you amaze is all. May today's treatments not leave you feeling as lousy and may your doctors not stop helping you live the life you want until YOU just can't.

Oh .. and put a hat on your keppie .. it's chilly!

Blessings on you. - Joan in DC

Making that booklet for your heir will be so helpful. In the widow's world where I reside I hear all kinds of horror stories about people trying to find passwords and accounts and important papers. We should all be doing the same, not just those among who are terminal.

When my dad was given the 'terminal' diagnosis for his lung cancer. He choose not to get any treatment at all and lived seven months. Other than he was tethered to an oxygen tank, he felt good right up until two days before he died. His doctor pumped him full of pain meds that I'm pretty sure that's that ended him and that was Dad's choice. I treasure those months near the end of his life because we packed in some great conversations and quality time. Helping him do things he wanted to get off his bucket list was the greatest privilege of my life. I'm telling you this to remind you to let people in, to let people who want to help you, help. Whatever happens, time given at the end of life is gift that gives to both parties.

Ronni, that there are things only •you• can do: your chemo, assembling your passwords. Others can deal with your detritus, now or later. There are estate organizers (it's a field) will do it for you or your heir. But if you have things to give to friends or places who would treasure them, that's important and your decision whether to do that while they can thank you.

Hair: you might check out Headcovers Unlimited. IMO turbans are chic, soft and not fiddly like scarves.

All wishes for a smooth course of treatment, and continuing gratitude for your posts.

There are all sorts of things available to you. The American Cancer Society gives away hats, scarves, and wigs. Meals on Wheels will deliver...no cost meals too. Check with your doc about other services up there. Down here you can even get your makeup done for free.

I have an ugly head so I've had nightmares about losing my hair. It covers up weird bumps and moles. I like the suggestions Mage Bailey made because I didn't realize the American Cancer Society did that.

You'll do the put-off part when you feel up to it.

Ronni: you are a hero to many of your readers -- you are paving the way for us all.
Blessings (whatever they may be) to you.

I agree with Marcia, you are a hero. My heart is broken that you have to go through this crap!

I'm with you on the cooking. It seems like such a waste of time especially cooking for one person.

I wish for you a local gourmet chef, and all the help in the world with all this pesky business that most of us put off until we can't. I wish for you lots and lots of beautiful holy moments.

I can't say more than others already have. Thank you, thank you, thank you. And love.

As always - thank you for taking your time to keep in touch. Sending many good thoughts - Sure wish your chemo days will get easier.

Can't remember if you've mentioned before what you are doing with your body afterwards, besides cremation that is. Luckily, right before my husband died, someone asked what I would do with his body and when I said donating his body to science they asked me where and other details. That afternoon I contacted a place I found online and signed both of us up. That evening, my husband died. The place I contacted came to get the body from the hospital within a few days, kept the parts they needed, cremated the rest and sent the ashes to me within 2 months. There is NO CHARGE for this. Why everyone doesn't do this, I cannot fathom.
All my best, Ronnie.

I can certainly understand the cooking. Since I had my stroke I can smell nothing and taste very little, only strong things like cranberries. My Thanksgiving dinner was textures. For some reason trying to do a meal for hubby and I is a chore.

I’m always inspired by reading your posts. I relate to so many of them. I also spend time in Lake Oswego so I know the lovely area you live in.

Your last post about hair coming out in clumps made me laugh instead of cry. I too was amazed at my hair tufting and leaving tufts behind. The strangest hairdo ever. I chose to shave my head and never regretted it. I didn’t choose wigs or other coverings (unless it was for warmth) and, amazingly, grew quite accustomed to my shorn head. Getting used to my face in the mirror without hair took a bit longer but it became my face again quite quickly. The hair did grow back.

I am the same age you are so we share a lot of the same old “stuff” we carry around in our old heads. I started taking in all this new “stuff” as if I were becoming more current in my thinking. Relating to people like Sinead O’Connor instead of Julie Christie. Made it more fun. And watching people’s reaction to the new me was fantastic fun. Strangers even looked at me with pity. And I smiled or laughed and told them I chose the look and not to assume I was in treatment for some dread disease. They often looked at me then either in anger because I had “fooled them” into feeling sorry for me, or laughed with me as if they were in on the joke. Met some nice people that way.

I also have a problem with getting interested in cooking for just me. I would rather use my energy for other endeavors. Pre-made salads full of goodies have come to my aid along with a beautiful new market in my area with a delightful salad bar and even more delightful (and exotic) hot food section where I pack small amounts of the food I’m not making on my own into small containers to take home and enjoy.

May I suggest a very helpful way to get all your pertinent information into one easily accessed and easily shared (with people you designate) option? It is called “Everplans”. An online plan that prompts you for the information you need to save, puts it in categories, let’s you easily make changes, and is accessible to only the family members and/or holders of your legal Power of Attorney positions. I have found this to be a wonderful help for me.

Passwords (I keep mine in a secure site called “Last Pass”) are easy because they only need to access one password to have access to all of them. And if you change a password you only have to do it once.

Keep up your lively reporting on what you are doing Day by Day. It is something too few of us do and it gives hope to all of us that life goes on (until it doesn’t) and we are all with you on your journey even when dealing with our own.

Lots of love. Sharom

As with all the others who follow your blog I thank you daily for your generosity and wisdom. And for the great
info you and others share. ✨💜✨
Susan

Thank you very much for expending your energy to write and inform us of your life and end of life experiences. I hope that you are able to do as much of what comforts and sustains you. Thank you again for your sharings.
Lorraine

Cooking for one has always been difficult for me so I take lots of shortcuts, do lots of microwave dinners, etc. During chemo, even that became more than I wanted to deal with, given the GI side effects, lack of appetite, and suddenly weird-tasting foods. (I lost 20 lbs; wish they'd stayed off!) Luckily supermarkets now deliver, and with services like Uber Eats and Grubhub you can get delivery from many local restaurants.

I found Hats, Scarves & More for some cute head coverings, but ultimately decided my favorite option was just one of my bandanas, tied at the back. I'd gotten a buzz cut as soon as my hair starting coming out in clumps (exactly 14 days after my first infusion, just as I'd read it would).

No great insights from me, just want to echo what others have said — wishing you many more days of feeling good and very few of feeling otherwise. You are such a great teacher to all of us. Many, many thanks.

My volunteer friend has liver cancer.

She gets Meals on Wheels. Yesterday the MOW delivery woman had to park a street over, pick her way down my friend's street while a construction crew was digging and installing new water pipes in front of friend's home.

Mud city.

Talk about an obstacle course!

The delivery was on time.

With a smile.

Respect.

Ronni, can you order frozen MOW and heat them up as needed?

Hats- friend and sis found wigs to be itchy, but were comfy with turbans.

You are one heck of an organized woman.

Hugs from Montreal on a snowy day.

I prepared for and pre-paid for cremation in 2011 and haven't needed to even think of it since except to tell my sons what I had done and leave them a file folder labeled Legal Papers that included info on that. The company I dealt with has reciprocal agreements with many others around the US so I don't have to worry about that being covered in most places I might be. In addition, I have a card and a letter from that company for my sons with all the info necessary , and a lovely wooden box for my ashes.

To complete the cycle, I bought a preprepared biodegradable container that holds planting soil and tree seeds, which can be replaced by fresh ones if live longer than projected, that will contain my ashes and can be planted so I can just join the other trees on one of my beloved West Virginia hills. Couldn't think of a better place that I would like to be. Showed my older son the exact hills and trees where I spent most of my childhood summers and he promised to put me in that soil I came from.

PS - Keep your head warm. You can lose a lot of body heat through a bare scalp.

Roni, I live near Portland. Want a casserole? Ellen Greenlaw 503-668-6272

When “the red devil” chemo took my hair after only 2 treatments I was so sad and scared. I belong to a Facebook group of ladies who had/have the same type of cancer...Triple Negative. I could not understand the whole “ rock the bald” concept. I was concerned for my young grandchildren who were already frightened for me. To now see me bald would be worse for them. The first time I tried to tease up my short hair and a clump came out in my hand, it was so upsetting. My daughter called me to her house one Sunday...we went into her garage and she shaved my head. We cried together and she gave me a cute grey beret with a little bling on the brim....after that
I ordered head wraps and my family bought me cute hats and no one saw me bald. Maybe some of the ladies on my FB site would think me cowardly for not rocking it, but for me, it was a huge heartbreak on top of the cancer. I got my hair back after treatment this year but it is not thick like before.....but I’m grateful for it. Ronni I so wish for chemo to work and give you years ahead not just months. My mother had to have heart valve surgery and apparently she didn’t feel good about her chances. A woman of great faith, I suppose she felt an impending danger here....and she was right. The surgery was botched and she spent 4 months in a coma and died of a septic bed wound!!!!! She had a premonition and she arranged everything for her and my dad’s funerals which is one of the best things she ever did. We were so devastated, the thought of planning it all would’ve been awful for us. I plan on doing the same for my family too.

I am really delighted that you are feeling so good, and I hope it lasts until the day you die. You've gotten some good practical suggestions about your bare pate, and about food. I've been cooking for about 50 years, and even if I weren't cooking just for me, I would still be very sick of it. Pediatricians say that kids can live indefinitely on peanut butter sandwiches, so . . . . . Eat potato chips if you want to, for God's sake. Order from restaurants. Well, you know what to do. As they used to say during the Age of Aquarius, "If it feels good, do it"!

Plus, I'm a fervent believer in drugs when you are dying. For sleep, for anxiety, for pain, you name it - no need to suffer or worry about getting addicted. Make things easy on yourself. That's hard to do, I find, and I expect you do, too.

I was very interested to read about your son. I hope that relationship develops and adds good things to your life and that you will keep us posted on it. May I recommend the new Louise Penny novel? It's not demanding, but she is very good, and for me would be just the thing in a terminal illness. Bless your heart.

Sharing your journey is deepening my own in ways I could not have imagined. Each of your posts brings something new for me to digest. I've come to see that allowing all of us to follow along with you is your greatest gift of love. Hugging you back! I feel such gratitude, Ronni.

Thanks and Love from over the seas ! you are my model hero !

Congratulations! You are accomplishing all the things I keep putting off. A
final sentence like yours also acts as an incentive. When you're gone, nobody can change unknown passwords or properly sign documents. Reading your blog I realize I better get busy, no excuses. I certainly understand the crematorium issue. It would be a final admission. Your handling of this situation is truly unique, and inspiring to me. Thank you for the personal window.

Thank you for all you do.You are a real treasure!

So much 'food for thought' for those of us on this path, Ronni. Thank you for the stimulation it brings. Its no wonder we have NO appetite. Actually small meals work better for me...digestion uses a whole lot of energy, and I need to save some for other, hopefully more interesting, things.

Like you, I have not dealt with "planning the cremation" but your comments in the post made me wonder WHY? The will, the beneficiaries. power of attorney,etc. are all accomplished as my time grows shorter.

I realized I am NOT going to do that final chore. It oddly feels like nailing the lid shut on my own coffin. I could call it, "possibilities", or perhaps just giving up. I do not want that attitude to color my remaining days of unknown number.

We get no rehearsal for this step, Ronni, but I'm certain the experienced lawyer that did the will, etc. will easily advise my heir. I'm going to use the energy I saved feeding the funny, entertaining, feathered and furred in my back yard; and maybe even make some easy favorite cookies for good ol' me and you. I will bring you some, if that feels appealing to you. I'm still pretty 'functional' early in the day.

Thanks for sharing. Most people have no idea how much needs to be done in preparation for death. I'm sure I don't.

Cooking, after a lifetime of hating it, has become my one creative outlet, and according to my husband, I am getting good at it. But after working two days on my feet, decorating the Governor's mansion, I am ready to throw in the towel for both cooking and decorating. I am exhausted, physically and mentally. I guess it is time to realize that I cannot do it all at this age. I had mistakenly assumed I could and would work until I was 85 or so....not true, apparently. My body won't cooperate any longer. Boo.

Sending you love and thoughts today, as I always do, dear Ronni. Your good sense and courage mean so much to so many of us. I am grateful for the language you've adopted: " "predicament". That seems so apt.

If you have the energy and the desire, I think your blog friends would greatly appreciate your writing about how you've managed to make this place an oasis of healthy interaction among your readers. So many internet spaces have turned out to be such disappointments ... but here reading comments is part of the delight.

Have a good day. :-)

Your post is a powerful narrative of what we face as we face death and how we all approach it in different ways. Yet the Venn of all our stories overlap here and for me drive memories of Donna's (my wife) death. She was diagnosed in 2009 and died in 2011 much of what you present here brought me back to her life during her journey. Her attitude toward EOL planning was uniquely hers. From my memoir:

“Now would be a good time to have end-of-life discussions with her,” the Hospice Rabbi and social worker said. “What does she want for her funeral? What are her regrets? Did she find joy in her life?”

Joy? I failed her. All I could do was think of that.

I hesitated for a day. Then next afternoon, alone in the room with Donna, I looked at her in the bed and said, “Donna, perhaps you want to talk about your funeral.”
She looked over at me and said, “Don’t be a maudlin pu****.”
Then she rolled onto her side and fell asleep.

Life and death were on her terms she took no prisoners and did not tolerate fools gladly.

I was the docent for her death.

Ronni:
You could be the poster child for the guy with the scythe,but thumbing your nose at it!! Your most recent dealings with cancer seem to be running just a little faster than mine, but then I "only" have had ovarian cancer which began about 3 years ago. 2 rounds of chemo,bald, and then remission for about 10 months. As "it" tends to do "it" returned and I am doing another round of chemo. Different cocktail mix this time and no hair loss. Except the side effects also seem to arrive after about 3 days and stay about another 5. And I too feel generally as well as or better than to be expected. When I ask my oncologist about what to expect, since obviously cancer will win, as it gets stronger and I get weaker, he too tells me every cancer and every patient is different. My major challenges are from poor balance, hence no walking outside of my condo and shortness of breath due to pneumonia. (Which doc says the new rounds of chemo should knock out. I'll see)
The worst side effect are my numb fingers which make it impossible to write and even the keypad is hard to manage

And I too have arranged as much as I could, pre-paid cremation, trying to leave my "stuff" in an orderly manner, and writing the memorial service. The most difficult "to do" job is talking to my children about the fact that I am going to die, probably sooner than later.
I hope you continue to have more good days.

Remember you have MANY neighbors here .... who would gladly go fetch something that sounds good! Lots of choices of food places in Lake Oswego, but if you want Pok Pok or something out of the zip code, just call! Or email.

Or something homemade. Tonight I roasted carrots, potatoes, red bell peppers, mushrooms, and onions ... accompanied by Melt in Your Mouth chicken (look it up ... fabulous!) You can give me a recipe and I will make it.

So sorry that the breathing is getting harder.

I am so honored to share your journey with you, as my own lung cancer journey can get a bit boring going over the same mantras. I spend part of each day reminding myself that this may be the last day; some days it spurs me to deep gratitude and forgiveness. Other days I have a "Fu** it, lets just get this over with" attitude.

If only there were a shortened version of getting over sporadic moments of terror. This fear of death must be hard wired from eons ago.

in partnership.

Dear Ronni
I think of you often, although I don't comment so often
You are a brave, fantastic person and your writings and impressions are a great help for everybody. After all, we also will have to go some day, right? Most people have a superstitious fear of talking about the inevitable end, at least in my country. But it is our only certainty and we should face it as bravely as you do and enjoy as much as we can until the end.
Thank you!

Ronni:
I feel like a doppelganger of you as I read about your spectral stalker. I'm not using a walker and tho I haven't yet I probably should with my precarious balance. My need for 02 is more frequent with even minor exertion. My doctor has told me that The Avastin helps that. It hasn't and I feel that the breathing problem is worse. Judy GhoneimI' m having same issue as you about the hiding words. I think about you often and you have my greatest admiration. I wish you strength to keep on keeping on.

Call me foolish. Call me a Pollyanna. But every time I click on your blog I am hoping to see the headline "THEY MADE A MISTAKE."

I am in a similar circumstance, terminal lung cancer. My particular type means I will probably have more time than most lung cancer patients but the end will still be the same.

I lost all my hair after Whole Brain Radiation. Not all of it came back. It looks like a scraggly mess when I try to grow it back, so I just keep it buzzed. Wigs and hats are too hot and itchy so I just keep it buzzed short, which I actually quite enjoy. When it's cold out I use Buff headwraps, which are super easy to use, comfy, and don't scream "cancer patient."

Thank you for sharing your journey with us.

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