My mother became ill in August 2008 with ovarian cancer. This is a story of the final months of an exceptional woman.

Friday, April 24, 2009

Delirium, chemobrain, 40 years of cancer research

Mother did go in yesterday for her CT scan and will let you know the results as soon as possible. She is doing fine.

I am writing directly today to pass along a bit of information. One of the reasons chemotherapy agents affect memory and learning ability is because our brains constantly produce new neuronal tissue. When we are exposed to anything novel or challenging the hippocampus and limbic systems (the areas that also regulate our general mood/motivation/energy/attention) go into production mode and create new synapses and cells to adapt to the new stimulus coming in. Thus the value of taking on new jobs, tasks, hobbies, languages, etc throughout our lives.

However, these new cells are only transient in nature because the brain keeps what is pertinent and useful to our lives. Not much more. We need to persist in our exposure to the new to cement the gains. Additionally, we must get good sleep, nutrition and exercise so that the machinery of cell creation in the brain is well oiled and efficient. Bad habits...drinking, probably hypnotics (like prescribed sleep medications eg Ambien, Lunesta, Sonata, Restoril, etc) irregular sleep and even worse behavior can wash away or, at least, sharply reduce the brains capacity to learn and adapt.

Many Chemotherapy agents work by killing cells that are rapidly dividing IE being born. Thus, the process of memory creation and neuronal adaptation in the brain are arrested with every treatment Mother gets.

Sigh...everything has a price. Some prices we pay are considerable.

The effects of Mother's ongoing chemotherapy treatments, in various forms, accounts for her "chemobrain". Her recent confusional state was something more and mostly unrelated. The opiates used for pain control are a double edged sword as is chemo. But these agents can act more to scramble the coordinated flow of neurochemical reactions in the brain in a more widespread fashion if the dose is too high. Result: varying degrees of delirium*

Dr. Muldoon, just to be on the safe side, is looking into mother's brain via scans to be certain that her cancer has not spread to the brain. He actually believes this to be unlikely but better safe...

I was not present for his conversation with Mother last Monday but her reproduction of its contents seems plausible. In other words, I think her memory was a better than usual and there was no evidence of any lingering confusional state now that her mediation dosing has been reduced. Also great news is that her pain has not returned on the lower dose of fentanyl (the pain patch) and stopping the oral pain medications. Her appetite is better as well.

All of us can only hope that the Gemzar she is now on is truly having more impact than former treatments. Reading the tea leaves and assuming Mother's memory of her conversation with Dr. Muldoon is accurate he really thinks this is the case and is not giving a doctor's usual reassuring murmurings.

I am delighted that more order has been brought to the problem of organization and consistancy in Mom and Dad's medications. This issue just had to be dealt with and that appears to be what has happened. The St. Joseph's Home Health Care program gives early evidence of being efficient, thorough and offers a wide-range of services. A rarity in our medical system today. Mother has struck it very lucky, indeed with the excellent quality of her doctors and the ancillary services they have recommended to her.

Of course, she is such a charmer she could get a King Cobra to give her a kiss and run errands for her.

I will be out there again very soon and then Janet to follow me. Dad wants us to stagger our visits. Mother mentioned the stress of paying bills which, I agree, should be removed from her shoulders. If I had her ongoing problems in concentration and memory would be very daunted at trying to carry out something so important. Dad could, of course, do this but he does have quite a bit on his plate and Mother has, historically, always done this task so he does not have the habits in place to take care of it well right now.

Mother constantly talks about how very considerate, thoughtful and concerned Dad is. I have certainly noticed this on my visits as well. Cudos to the great man!

Sorry that I have not had the opportunity to speak with Mother yet to day so that I could gather up some of her wonderfully droll comments and observations to further embellish and render onto the page here.

Jeff

* Delirium: http://en.wikipedia.org/wiki/Delirium

An article you might like the development of cancer treatments over the last few decades appeared in the Health Section of the New York Times yesterday. You may find it of interest?

Wednesday, April 22, 2009

A Typical Day in Shangri-La

Midnight Judy
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Noonday Judy
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Paul tries to decipher my communications

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Still not quite Right

I am afraid I have misled my public. I did not (surprise!) get my schedule right. I go in tomorrow for my brain CT scan. Nothing is on the docket for today. Yesterday I saw Dr. Muldoon and his eyes definitely did not bulge out of his head as he read my tests results. In fact, for the first time ever he seemed really, really reassuring about my response to the Gemzar. My CA-125 (the blood cancer marker is down) and some other results look good. He also thinks that my quick improvement mentally upon reducing my pain meds and other changes indicates I might not have brain metastasis.

We will see but, for the first time ever, I don't think he was just slathering on the Happy Talk I love. This conversation seemed more substantially reassuring.

Yet...I am not right in the head. I have always been more than a bit eccentric in my mental meanderings but now some new, hard to describe and definitely not normal twists have been added. I am not so confident about the results of my CT scan tomorrow as Dr. Muldoon seems to be.

Enough of the good news has sunk in though to prevent me from spending all the day long bending over to to kiss my old ass goodbye! Glad I have the high steppin' now to replace the aerobic benefits of all that bending...

One problemo I do need to get on top of is paying bills and that sort of thing. Way bad, let me tell you! Makes me very, very anxious. My plan is to add yet another millstone to the necklace that adorns Jeff's neck and have him take all of that over for us. Despite having a mind and mouth that are both alarming and excitingly unpredictable Jeff is, in terms of behavior that manifests in the real world, unnaturally conscientious, honest and predictable. Go figure. But I need to cash in on the last bits more than ever. Don't you agree?

Another problem is my poor appetite and not always eating the things I should. Jeff suggested a party where the guests bring their healthiest, tastiest, freezable Kitchen Wonders. We would serve nibbles and drinks in exchange for their creativity and kindness. That would be a great way to stock the freezer with things that can be pulled out to hit the table within minutes that might pass my, now, very discriminating and capricious tummy.

Expect an invite soon! As soon as we eat and clear out the 15,000 lbs of boudin Paul's friends brought from S. Louisiana last week.

I just learned that my dear friend, Steve Brown, has throat cancer. What a plague this whole cancer thing is. Since getting it I have learned that nearly everyone I know has dealt with it or it has touched them in very direct ways via friends and family with it. Steve! we are there for you and I especially know how difficult getting such a diagnosis is. Keep me informed. If I prayed I would have them pouring out for you. Since I don't...you have my love and healing vibrations at your beck and call.

Angelo, my amazing bicyclist friend, is entering the home stretch for his ride to Los Angeles on 1 June to raise money for AIDS. He just told me that he will collect pictures and videos for me and send them ... ones I can use on the TV and not have to approach the feared computer. Today he has gone on a 95 mile training ride. Good Lordie...even the concept of 95 miles with a bicycle seat inserted is mind blowing. He is even been going to hospice training classes in the evening with me as the inspiration (!!!!hope it never comes to that) and said, "I'll come out there and stay and do whatever you need whenever you need it!".

Wow! what a friend. I hope you've made your contribution to his ride. I've chided you before but now I mean it. This dude is too good to be true. Pennies count since I think he is just shy of his goal.

The day is lovely here. Cynthia, the great lady who comes over to clean and help in the fight against entropy is here creating order and beauty.

In the moment,
Judy (via jeff)

Monday, April 20, 2009

Goose-Steppin'

Günther, Physical Therapist

Things are looking up! My physical therapist, Günther, came by for the first time today and urged me to swing my tootsies high. His theory is that this will stimulate "blood brain circulation" and improve self-esteem. Günther will be putting steel in my spine and springs in my hips twice a week. We shall wait and see if any blood starts flowing in my head...

I already feel like a wound-up whirligig! His words of frenzied wisdom buzz round my head non-stop. His touch was profoundly healing. The whole package ... enthralling.

Herr G expects me to be doing hopping hand-stands in near future. Perhaps Big Biscuits will join in the fun? I can see us now...arms locked bouncing up and down Main Street in Hot Springs.

I will have to bring this simple technique to the attention of Holli, Chocolate Impresario, for the further empowerment of our local womenfolk.


Finally something new and different around this less than invigorating corner of the planet! When Herr G visits me again he won't know what hit him. Not only will I be goose steppin' up, down and sidewise I also intend to lay some moves on him. Wait til he gets a load of my jitterbug and Lindy Hop!

http://www.youtube.com/watch?v=qg2yd-xD5RA

Filled with the Force...
Judy (via jeff)

*Der Stechschritt (literally: "piercing step"): the goose step is a special step that women of power are adopting throughout the American South. Historically, this prancing footwork was performed in exciting, fun-filled parades by persons of blondness. These days Southern ladies of discernment are the ones who swing their leg from the vertical to a horizontal, fully extended position only to slap that rigid leg and foot down on the pavement with a bang. Then the next leg. And so on in perpetuity. This 'high-steppin' , as it is called in places like Charleston and Little Rock, requires formidable dexterity, balance and force of will. The purpose of high-steppin' is to demonstrate absolute mechanized discipline and superiority. It also increases blood flow to the head.

**Here are the study videos Günther left for me...

http://www.youtube.com/watch?v=f6PxkeOIMA8
http://www.youtube.com/watch?v=ZGp0hCxSg98

He also suggests I learn this party trick to rid myself of unwanted house guests:

http://www.youtube.com/watch?v=HX_5zIXxKEU


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Sunday, April 19, 2009

This is not a sequel. There has never been anything like it!

Jeff called from the San Francisco waterside where he was strolling and watching the sun rise. I could recall what he was saying from one sentence to the next...water calm with a few sailboats, water cerulean, sun red gold and the GG Bridge glowing. Blah, blah, blah. Wish I was there! or, preferably, Jeff would shut up about how fabulous Frisco is.

Cerulean?

Some conversations are best forgotten!

The point? This state of relative clarity is a vast improvement over where I was just 24 hours ago. Then I would have gotten off the phone with Jeff in 2 - 3 minutes (instead of our typical 4 -5 mins) because I would have not been able to figure out what the Hell he was talking about. Given recent events I now suspect my problem was OD'ing on pain meds/patches/xanax/whatever and not that I have nasty bits now lodged in my cranium. I suppose my CT scan of the brain Tuesday next will reveal all.

Pod Buie and Randy Jones, my nephews, are here scarfing up all of our soft shelled crabs and boudin (it is the late afternoon now). They just told me "you actually make a little sense now, Judy".

"Why, I never!". I vigorously ejaculated in response. Let me tell you, I was shocked nearly beyond recall by their effrontery...

Is it desirable or merely worrisome that these loving lads can actually understand me now? If I could remember the recent past, I probably would find some solace in having been the reincarnation of the Oracle of Delphi* for a time. My "sources" tell me that Ariel, my granddaughter, after having a telephone conversation with me about two days ago likened my responses to this woman's: http://www.youtube.com/watch?v=wwq2xSDBQfw Except much less comprehensible. Loose association was the operative word during that "not remembered by me fur shur" conversation.

Ariel got off the phone and promptly had a hysterical breakdown. "Grandmother is a goneeeeeer!!!" She then est tombée dans les pommes.**

I am not entirely certain the child can be entirely believed. Even as a newborn Ariel had a mischievous, wicked streak that could shine forth at any time. Very random though. Just enough to keep you off balance. Generally she is a BuddhaBabee of Luv...

Ariel Wusthoff: 3 days old

I do recall Ariel, who is to graduate from High School in the not too distant future, has to be adorned with some residue of god since she attends a Catholic School. Our conversation revolved around the labyrinthine minutia of this cross versus that cross. Even at my best this is all mumbo jumbo. Might as well have a shaman telling me about the differences between voodoo curses. A woman who is feeling the wind of the Grim Reaper's scythe on her neck finds it hard to attend to an exposition on the relative merits of crosses. Even when it is her adored Granddaughter.

The Wise Reader will be asking herself, "I wonder just how much of that conversation with Ariel Judy has forgotten. Did it happen at all? Are persons who are under the weather always cranky?"

Sigh.... You are so very right to be curious about these things but I certainly cannot answer the first two questions. The last one is a unequivocal, "YES!"

Message in the bottle: when you are talking to me these days you'd best keep it short and close to home. Mine.

Well, Grandmother aka MizFlounce is back! And now I am the Monarch of Order. Chaos is henceforth banished from my kingdom. All due to the kindness of a stranger.

A delightful RN came by today to help get us sorted out here. Poor creature. I think when she saw how far Paul and I had progressed in achieving a state of maximum entropy*** she was felt inclined to fall back into her car and peel out heading for the hills. But, professionalism held sway and she marched through our portals, ashen faced, into the nursing equivalent of the Heart of Darkness.

Several hours later she shambled out muttering "I have other things I have to do today..." I felt for her but we still got our pound of flesh. She laboriously went through all of our medications. Between Paul and me you would assume the Sorcerer's Apprentice**** had come and forgotten to leave. Bottles, bottles everywhere but not a drop to drink? Well something like that. After our RN slave left I had my four daily meds lined up like compliant soldiers and not a mob of 45 random bottles spilling over the counter onto the floor. Paul likewise.


Pod has a theory that I, when conscious, shoved anything that resembled a pill into my mouth. I don't think it was that much of a Valley of the Dolls***** scene around here but it probably was close. Now life in our Lakeside Shangri-La could be displayed on "Father Knows Best" or "Sesame Street" without fear of censorship.

Happy Days! Here I am right before the nurse left. Paul, Randy, Pod and the put upon RN are in attendance...

http://www.youtube.com/watch?v=kujWSIFoe94

Hope your day has ended as superbly as has mine! I still feel more than a bit funky but in comparison to the last few days of "there but for the grace of god" this is Valhöll******!

Judy (via jeff)

* Oracle of Delphi: http://en.wikipedia.org/wiki/Delphi "Delphi became internationally known for the Oracular powers of Pythia--the priestess who sat on a tripod, inhaled ethylene gasses, and muttered incomprehensible words."

** Tombée dans les pommes: Literally translated as, "falling in the apples," it is a colloquial expression that means passing out, fainting, losing consciousness.

*** Maximum Entropy: "entropy is a measure of disorder, and that nature tends toward maximum entropy for any isolated system"

****Sorcerer's Apprentice: http://www.youtube.com/watch?v=LD8HDta7Z_4

*****Valley of the Dolls: "A pill to wake up; a pill to go to bed..." http://en.wikiquote.org/wiki/Beyond_the_Valley_of_the_Dolls

******Valhöll aka Valhalla: Valhalla, Hall of the Slain, in Norse mythology is the hall presided over by Odin. This vast hall has five hundred and forty doors. The rafters are spears, the hall is roofed with shields and breast-plates litter the benches. A wolf guards the western door and an eagle hovers over it. It is here that the Valkyries, Odin's messengers and spirits of war, bring half of the heroes that died on the battle fields (the rest go to Freya's hall Folkvang). These heroes, the Einherjar, are prepared in Valhalla for the oncoming battle of Ragnarok. When the battle commences, eight hundred warriors will march shoulder to shoulder out of each door.
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About Me

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Vacherie, Louisiana, United States
Born in rural Arkansas my tongue took up residence in my cheek shortly thereafter. I use it to speak "Genteel Southern Lady". Cussin' I only use when provoked by the Uppity. Paul, my husband, and I have lived in Cajun Country for many years raising cane, twins (a boy and a girl; now adults? definitely old) and other mischief. Alligators, water moccassins and bears have tussled with me as I protect our swampy coastal farmstead. We are stuck now on lovely Lake Hamilton near Hot Springs where we have our second home. We have been here waiting for Godot since my heart valves blew out Late November 2007 and now with cancer diagnosed August 2008. The Furies have me in their sights... I am writing this blog to let my Beloveds know how I am doing so they will not "get off" in imagined ways on my dire straits. The reality is bad enough without turning my story into a B-grade movie of the mind. I know all of you wish me the very best. And I miss you! never no mind your fevered imaginations. This is as close as I can get to a fond and loving chat with you right now... Sadly, Judy aka Mizflounce passed away peacefully early on Sunday morning May 30th 2009 age 78.