Making Hearing Aids as Cool as Eyeglasses
A Cancer Surprise

The Reality of Cancer Treatment Sets In

As I sit here at my desk tapping out this first sentence, I'd rather be curled up in bed. I don't necessarily need to sleep; I just want to lie down. I am deeply weary.

This is not an unexpected condition. Before I started chemotherapy, the experts at the hematology clinic within the Oregon Health & Sciences University where I am being treated for cancer told me this would happen.

Cancer, they explained, uses up energy – that is, calories – faster than a healthy body and so does chemotherapy, thereby supplying a double dose of fatigue which will increase cumulatively during the six months of my planned treatment.

In addition, tests at the clinic last week revealed that I am “severely” anemic (another not unexpected side effect of treatment). So another source of fatigue, and another pill in my cupboard to treat the anemia.

Now into my third round of chemo, I'm tired all the time. Tired when I wake in the morning, tired getting out of the shower, tired after cooking breakfast or dinner or any one of the other several meals a day I prepare to try to keep up my weight, and tired sometimes just being vertical.

If you ignore the horrible first four or five weeks of recovery from surgery after the Whipple procedure, until now I've been interested, even fascinated by this cancer, the treatment, the reaction of my body, the boundless concern and kindness of the staff who care for me, and the almost daily changes in my sensibility toward life and death.

Certainly it is not easy knowing you have one of the worst cancers. Only lung, colo-rectal and breast cancer kill more people each year than pancreatic cancer.

But it's not something I have dwelled upon much and I suspect, until I find out in March how successful or not this chemotherapy has been, the ranking of “my” cancer will remain of little interest to me.

This, I have noticed, is also true now of having cancer in general. It's no longer a novelty and I'm ready to move on.

Except, of course, I cannot.

As I have said in the past, I am grateful for how lucky I have been: that I was eligible for the surgery, that my chemo is only once a week and takes only an hour, that fatigue is the worst side effect I've faced.

It makes me feel like a wimp to be complaining while knowing other patients have a much harder time than I have had.

It's ironic this week that just as fatigue is becoming difficult to deal with, I have been freed from my the post-op restrictive diet to eat anything I want. Don't go hog wild, the nurses and doctors advise, but there is nothing I need to avoid now.

Yeah. Right. Nice. Except that the more elaborate cooking I enjoyed before this unwanted interruption to my life appeared last June is more than I can usually find the energy for now.

The doctors and nurses at OHSU tell me that depending on my blood work today, they may give me a blood transfusion which, among other things, will temper my fatigue if not entirely relieve it. Hmmmph. Who has ever hoped to need a transfusion. The ironies abound.

A long time ago, I read somewhere that house cats (and maybe wild cats too - I don't recall) sleep about 17 hours a day. That seems a good estimate for Ollie the cat's daily routine and now he's got a companion to keep him company during all those hours he snoozes.

Comments

Snoozing is good. Cats are wise.

Could you get Meals on Wheels or Schwan’s to deliver meals? Take out Taxi to deliver from restaurants?

We are with you and thinking about you every day.

Thinking about you!
Terry from Texas

We have used a meal delivery service (they send 3 meals for 2 once a week for $59) and do the cooking. Works for 6 meals for one, too. Delicious and fresh. No leftovers to rot i. the fridge. Lots of chopping but not complicated and you can choose entrees.

Exhaustion is difficult for anyone who was so recently vibrant and active. You are fighting a good fight. You can do this. Ask for all of the help that you need. Cancer is not now and has never been a solo battle. Don't beat yourself up for needing help. Accept all the assistance available. You are in the prayers of so many.

I'm sorry to hear that you're facing this fatigue just as other things seem to be be improving. Have you considered that it may not be only or even primarily the cancer and its treatments that are behind this? This time of year, especially right around clock-changing time, many people go through at least a limited period of feeling a much greater need for sleep. The earlier darkness, colder temperatures -- and here in the midwest, at least -- falling of the leaves from the trees, hits me harder each year. This year was not as bad at the beginning of daylight savings time, but only because I was in southern Texas visiting an old friend and we were having a great time doing something wonderful each of those nine days, with virtually no responsibilities or cares. Human beings need novelty, and now that the novelty created by the changes that came with your diagnosis and treatment regimen has worn off, you may need to infuse something else into your life.

Not trying to solve your problem or fix things for you, but have you tried adding a movie or some other outing maybe once a week, even if you need to have someone else drive you if it's too tiring for you to get out and go somewhere new and interesting. And as far as the meals -- perhaps using one of the programs that delivers healthy meals for a while until you get through this slump? There are some excellent things out there that can provide at least one really good meal a day, that you could just fill in around. Alternatively, I have recently found some very good frozen meals that are vacuum sealed and taste really fresh and home-made as opposed to most other frozen dinners.

I know you weren't looking for answers here, but rather sharing your feelings and condition, but it makes me sad to think about you suffering through these things, especially when much of that suffering may be unnecessary.

Yes, Ronni, bring catering to you. And you know MJ is supposed to increase the appetite (likely the t one rather than the c, but check).

Do whatever you must do and realize others will be happy to help.

A few months ago I landed in the hospital for a transfusion and iron infusion, when my numbers were half of normal. It's been a little over 2 months and the blood counts (globins and crits) are nearly in normal range while the iron isn't budging much. Still, the constant weariness is gone and with it the lazy mind and lack of energy and enthusiasm for anything except laying down.

I eat handfuls of dark greens, like spinach and beet tops, at every meal and have indulged in some beef (I am vegetarian) and more fish. Beef is the preferred route via my docs as it most closely aligns with our body's iron needs. Another is to cook in cast iron, especially for teas, soups.

This too will be a memory in months to come.

Manga!

Ronnie, I can't speak for all of your readers but I don't think many of us would mind if you took a break from your blog for a few weeks.
This is a critical time in your treatment and your body needs time to "normalize" itself after this initial insult to your system.

NOTHING like a wimp" ...

I adore you Ronni. Your candor, knowledge, and dry wit never flag. I love what Cathy Johnson wrote. So many ideas to consider in her comment. I am grateful your life, your blog, your community, and your blessings — medical team, friends and neighbors at the ready, sharp intelligence to discern and analyze, creative expression, and knowing when to kvetch with abandon to your worldwide blog family. We are listening attentively and broadcasting compassion and tenderness steadily.

Do you really consider yourself a wimp because you aren't suffering quite as awfully as someone else with cancer? Ronni, I am certain you would not be so harsh to anyone else as you are to yourself! In my book, anyone with cancer -- cancer, crissakes! - gets a pass. You get to be and feel how you do and like, period, full stop. So take care of yourself, first and foremost. Everything else, including this wonderful blog, can wait.

I wish I had helpful advice, but all I can offer is the humble potato. Give it a wash and toss it in the oven for an hour or so. If you have the energy, you can swipe its outside with butter and some seasoning first. Then it can become a platform for anything else you like: the standard butter and sour cream or some steamed veggies with salsa or cheese or some diced whatever-else-is-in-the-fridge. Potatoes, pasta and rice -- if they are allowed to you, don't underestimate the power of simple comfort foods to comfort.

Ronnie

Courage
Give yourself a chance to rest and recover
Do not be so eager to get to your normal.
Remember your age

Love

Beatriz

I totally agree with what's been said & especially what Tamar has posted. Think about you every day as well as I think about another BFF going thru something similar. Sleep & rest as much as you can & eat a few good steaks. hugs, Dee:)

Aw, that exhaustion, I'm so sorry it's got you down.......for now. Just for now. Exhaustion is tough, it's really tough, makes seeing the beauty of the day very difficult, for me it's always been close to depression. The world takes on a greyer hue for the duration. Forgive me, I gotta say it.........you are not alone, you are in many hearts and prayers and blessings. And you are not a wimp, you are an exhausted, brave woman, deserving of all the self compassion you can muster. (That too is difficult when we're exhausted) You deserve a shoulder and a good, cleansing cry as well.
Hmmmm. What is a wimp? Not sure. You're not it.

Bless you, dear. Ditto all the above. So sorry you are going through this. You've been amazingly "awake" and led by curiosity rather than depression to an astonishing degree. Rest and cry and grouse all you need to. Whatever, WHATEVER helps!

I absolutely agree with Bruce. If you're up and moving about , your body isn't getting the rest it needs to recuperate. Fatigue is probably much harder for anyone who is used to a routine and "doing" & "going".

Ollie has the right idea! If you feel compelled to continue your blog, a simple "Hi - I'm ok." will do. Take good care of yourself...we're all standing by, sending healing prayers.

It is difficult if not impossible to describe the tiredness and exhaustion that one experiences when confronted with a serious illness.I can truly say that I know the feeling having had Emphysema for 15 years.While the 2 ailments are different, many of the symptoms are the same ( trying to maintain weight,eating without an appetite, having no real energy , taking countless meds through out the day,sudden unexpected bursts of anger, etc)
You don't give yourself sufficient credit for the strength and courage that you show. You help all of us more than you know

You are not a wimp. You are a cancer patient who is undergoing chemo. Be kind to yourself.

You can order from Panera or other places in a pinch. And sleep is good.

Do you have Netflix? If not, now would be a good time to indulge in movies. You might consider subscribing if you don’t already do that.

Whatever you do, be kind to yourself. Coddle yourself. If you need to sleep, just sleep. Your body is telling you what you need.

I thnk you are doing a great job with self care.

I wish you well.

I had anemia for about two years, thinking that it was simply a sign of aging, thinking I should resign myself to it, trying to "come to grips" and so forth. But first the transfusions really helped--that's for you, Ronni--and then I discovered a bleed which could be fixed. But the bottom line is that you don't have to fully accept anemia as a given, as a defined condition. It can be (partly) dealt with.

You are not at all a wimp. I'd get in touch with the Schwan's etc. Their food is decent and you don't have to eat it all the time just give yourself a little break. Someone on your treatment team probably has suggestions too. I was ill last winter and so tired I just sat and cried but then I felt better. I hope you can be kind to yourself, sending you lots of love.

Such a slog! Your curiosity prevails, even as you are observing the fatigue and need your body has to curl up in a ball, just as you observed each stage up until now. I do hope to hear you received the transfusion (with that type of hope, why would they hesitate?) You inspire me as you stay in relationship with us and your body through this. Love.

I second Bruce and Lola - if you don't feel like writing take some time off, we will all still be here when your energy returns. A quick hi would be perfectly fine.

I think your postings on dealing with cancer would make a great book that would help people beyond those of us lucky enough to have found your blog. Your keen insights and candid sharing combine to give us all inspiration for living each day more fully with our own far less daunting challenges. Bless you! On the diet issue, you might search for a food service like we have here in the North Bay (north of SF). Ceres provides free meals to those receiving treatment for cancer. The Ceres philosophy is that organic, healthy foods are in themselves healing and strengthen those dealing with cancer. I wish Ceres could be available everywhere. Possibly Portland would have something like that?

I am so sorry that you are having another bad side effect of your illness. I can empathize to a small degree.

I have lost all my energy since my last illness and everything tires me out. As you said, just taking a shower can be exhausting. I now have to shampoo my hair the day before going out because by the time I get ready to go someplace I am too tired to leave the house.

I have given in to it and now have a cleaning lady every other week. Because there are only two of us and one cat (the dog is gone) the house does not get dirty between visits.

I am still make my own breakfast but mostly rely on finger food for lunch and frozen meals for dinner. Sometimes we just need to adjust and go with the flow.

I do nope that your normal energy will return after the treatments are over.

I agree with Bruce. It is much more important to take care of yourself than to tire yourself out of a feeling of obligation. On the other hand, a diversion is sometimes a good antidote to the weary feeling. Listen to your body and do what's best for you.

We will not leave you if you take a hiatus and will watch for your blog in our in-box. I know I speak for your team.

Rest, read, recover. My three R's for the day.

Our friend Poolie is a little recovered from her lymphoma, brain cancer, chemo, infusions again and again, and the continuing watch on her Potassium and hemoglobin. It's been a year now, and she has begun physical therapy only to tear a hamstring. We visit often.

How I remember the fatigue! Could barely get off the couch to go to the bathroom. Had to think long and hard about reaching for the drink within arm's reach. It's frustrating, I know, but just go with it. Your body wants and needs rest, so rest. Have food brought in or sent in, since cooking involves standing and that can take a real effort. Most food tasted weird to me during chemo, but rotisserie chicken brought in from the grocery store was delicious. And good protein, too. All you HAVE to do right now is endure. Everything else can wait, including this blog if need be. Sending positive vibes your way ...

I can add no better thoughts than have already been expressed'
But just want to add my love to this great list

Take all the time off you need, Ronni.
Your energy and spirits will return once the chemo treatments are over'
Meanwhile, you are in all of our hearts.

Everything I would say has already been said. Take care, and if you need a break, we'll hang in there with you.

I can rather understand fatigue as I had to go through IV iron, but I wonder with me is age...yeah right I'm 78 for Pete's sake. Hang in there Ronni.

Ronni, be gentle with yourself.

Do whatever works for you.

Excellent suggestions above.

Meals on Wheels -delicious and nutritious.

Wimp is the last word anyone would use to describe you.

Survivor.

You are.

A.

Kick ass survivor.

I had three blood transfusions in the last two months. Two units each time....total six units.
My hemoglobin was 5.6, 5.6, and 7 before the transfusion. My doctor said that only hemoglobin below 8 was allowed/given transfusion. normal range is 11 - 16.5.
I was reluctant to receive blood transfusion at first. The transfusion does help me each and every time. Not only I have more energy, my appetite is better, my digestive system is better, less dizziness....better quality of life.
My son informed me that the blood I get is mostly like younger than me....remember your post about young blood?

I only want to say I care and am thinking of you.

And you live alone? My god, woman, how on earth do you do it? Most people have someone else around to help out. I am in awe.

I can so relate to the fatigue you speak of. My ca journey was 25 yrs ago..6 months chemo, 7 wks radiation. I tolerated all treatments well, but knock me down fatigue walked right beside me. After an infusion, we stopped at a favorite place that made steel oats oatmeal..breakfast done. I stayed with proteins for other meals. I made batches for the wk including soups. I recall my weight being watched closely, losing weight is not good. I believe there now is a cookbook with a title of Cooking For Cancer. I took my dogs for walks..called it a day and rested..gave into the fatigue and another new day began. I will say, honestly, it took me a year to have the return of full energy. Take a break from the blog, order delivered food plans, eat everything you can tolerate..be selfish, it is all about you, it's a journey with a challenging foe. You are right on the money for yourself Ronni..♡♡♡

I,m glad they are offering you a blood transfusion. Of all I read about blood transfusions it will give you a big lift. And congratulations on not being on a strict diet anymore. Finally you can eat anything your heart desires. Every womans dream.
If only a few paragraphs, I hope you keep writing. You continue to inspire many people.
Lots of love

Does everyone here know about The Spoon Theory? If anyone doesn't... I won't post a link because that would make more work for Ronni, but it's an easy google search to get to the original article by Christine Miserandino. It's vividly written. Well worth reading, if you haven't.

The point it makes is about having limited resources, and how that forces you to make choices healthy people don't even have to think about. You always have to be juggling priorities, even for tiny details of everyday life that other people expect to be just automatic.

If a blood transfusion will give you more spoons, Ronni, you'll be glad of it. People who donate blood don't know who they'll be helping, but they know they are helping someone. Every pint comes with an extra: a stranger's impulse to give.

I know, I know, everything costs money---

but maybe you can ask at your treatment center or a religious place or neighbors(there are a lot of women that really would be happy to help for the money) if they know of a lady you could hire who can come to your home for four hours or so three time s a week to help with things -- change sheets, go grocery shopping, cook, change the cat box or whatever you need --

Worry about money later-- because if you know someone is coming, life is more manageable.

Be good to yourself during this time. I understand your fatigue; I had it both before and after my open heart surgery. This, too, shall pass. I vote for meal delivery services and napping all day with Ollie - if you need to.

Thinking of you and hoping for a miracle.

Issues Ronni has written about here and people for whom she has advocated ..... prompt me to think, as I read all our suggestions, that workers hired expect to be paid —now — with real money. For all too many needing to hire and the workers, there’s only money — hopefully enough for adequate food, keeping the roof over their heads, the heat on in the winter and staying cool in the summer, clothes on their back. Anything else — hiring a helper, purchasing prepared meals is a luxury beyond a pocketbook’s or borrowing’s limits. Not all have family close by, or at all, to provide assistance as I think of my own widowed situation.

There needs to be some provisions in our system(s) to help when these catastrophic health events occur — even if the person has a few shekels above the minimum needed (but how does one know what that minimum amount is?), but especially if not. Confronting financial anxieties should not be required of anyone coping with a health crisis.

By way of simply being a reminder, readers of this blog — appreciating the writer’s talents and skills — can send “feel better” wishes as I note there continue to be credit card links for donations. I don’t presume to assume funds are needed, but when did anyone object to being remembered by distant friends, acquaintances, or others, sending various gifts as tokens of caring? I’ve read Go Fund Me Medical Accounts are sometimes setup at that web site, but I’m not knowledgeable about it.

Ronni, hope a shot of youthful blood, if you receive a transfusion, brings some extra energy, but whatever — hang by your thumbs and write if you get work, as Bob and Ray used to say. Now go cuddle with Ollie!

Hang in there Ronni - is there a Meals on Wheels type program in your area? The food may not be gourmet, but it gets delivered to your door! I signed up my dad when he and I shared a home - we had to replace the tile in our kitchen and entry way. It was a big hassle and we couldn't use the kitchen at all. I found some of the meals not great, but some were perfectly fine - sort of a Denny's or IHOP type quality, just generic American food, but also included a beverage like milk or juice. It was a tremendous help! Side bonus of not having to go grocery shopping as often. It was a cold meal for lunch and a hot meal to heat up later, both delivered by volunteers late morning. Of course there are entrepreneurs (here in SoCal anyway) who have more gourmet offerings but those are more pricey...keep up the good healing work - rest with Ollie and eat!

Dear Ronnie,

I've been following you for a few years now. I can't thank you enough for being a constant source of comfort and knowledge about aging gracefully.

I had stage 3 breast cancer in 1991 and had a modified radical mastectomy. While I was undergoing prophylactic chemo, what helped me recover faster from the after effects of chemo was Barley Green with Kelp. Instead of being so weak and nauseated for 7 days I felt restored after 3 days from the chemo.

I used to order this from health stores as these were not readily available in the Philippines where I am. I am sure you can find this in the US. It comes in capsules or is in powder form (don't take this as it can nauseate you more from the taste and smell.).

It's is product made from natural ingredients. I took that for a few years and only gave it up when i felt confident enough to let go. Try it. Ask your Doctor for his advice on this.

Concentrate on happy memories, watch movies that can lift your spirits and make you laugh. Pray too. These too help very much..

With love from across the Pacific.


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