Mima's Blog

Knitting, books, theater, travel, skiing, cycling and whatever crosses my mind.

Wednesday, May 13, 2009

One Final Word...

As a virtual monument to Mima I will be keeping this blog open for awhile so everyone can revisit the many twists and turns of his life from the mind of the man himself. The journey of his battle with his illness is, in itself, worth preserving and something to refer to as we make our own stops and starts in our complicated lives.

As some of you know who have taken this same path it’s very strange to contemplate the hollow emptiness that is left behind when the space a special person occupies was so full of sparkle, curiosity and humor. For all of you who have expressed concern about my own well-being; rest assured I’m doing okay and I am slowly but surely taking care of all of the “stuff” as I think Mima would have wanted. As you no doubt know, life is still unimaginable without him but, oddly enough, it still goes on.

I want to thank everybody for the many kindnesses showered upon me and his family; it makes it a bit easier to know we are in your hearts and thoughts.

We will all miss you, Mima, but I think none so more than I.

If you feel moved to leave a comment herein anything you might add would be appreciated.

Love and peace,

Paul Lemire-Maldonado

Monday, April 13, 2009

Monday, April 06, 2009

Hello from Paul & Eileen

Greetings from Nurse Eileensita, and Saint Paul…..

Pardon us for being facetious by using the above titles, but, hey, you’ve got to keep a sense of humor in time(s) of crisis.

Mima has now entered into “hospice” mode and we are mostly quietly sitting with him as the bell tolls, albeit not deafeningly so far. He is aware of the situation and tries to communicate with us, not always lucidly, but we know that his heart still beats in sync with ours.

When Mima started this section of the blog in December of 2006 his motivation was to keep friends and family informed of his diagnosis of lung cancer and its treatment. As we all know his battle has been epic, having suffered through major (and sometimes innovative) surgeries, chemotherapy, radiation and steroid treatments. He never gave up hope or, astonishingly, his sense of humor as over the subsequent two-plus years he continued to travel, enjoy theater, read, knit and just generally be the wonderful contankerous soul he always was. If you scroll back to the beginning of this blog and read forward you will see the incredible journey he has taken in dealing with this dreadful disease.

Last week at the hospital, Mima decided to be on many cruises and visit many cities throughout the world. The power of his imagination and memories had him providing the Doctors with the following answers:
Dr.: Mima, do you know where you are?
Mima: Korea
Dr.: Mima, do you know where you are?
Mima: Ho Chi Minh City
Dr.: Mima, do you know where you are?
Mima: France today!
The fools kept asking, and Mima kept traveling……

At his job, from what Mima would say, (and from what I observed), he was a great boss and loved the family that he worked with. We do know he was a fine friend to a great variety of people of all (to coin a cliché’ maybe) ethnicities, cultures (both high and low) and he could compare the merits of fine food and the occasional cosmopolitan and Vive Cliqout champagne with the best of them. After 18 years of being partners, we were legally married in January of 2007, and he proved to be a devoted husband. Now, after almost 21 years, who would have thought we would end up and old married couple? Thank you Massachusetts!

Throughout this illness Mima has shown us how to love life intensely and transform. Even the most difficult moments turned into joyful events full of elegance, dignity, and some very serious fun.

So, what better time than right now, to pick your favorite spot in the world and travel with Mima. He wants to toast you…for making these past two years so tolerable. To his family, his friends, his co-workers and medical staff…. raise a glass of good wine, and enjoy the sights and company…...

Ching Ching
We’ll keep you posted.
Paul & Eileen

Saturday, March 07, 2009

I woke up Monday and it is saturday....what?

Saturday and Sunday were not extra anything days, however I've been tired and the headahces sort of came back (low level but back. The connection between my sarum and my rectum is really reminding me it is there, so what I do is either get on my side or sit on that ob-gyn looking position to releive any pressure. For whatever reason the "eyeball" test make things very apparent with thi illness. When I woke up Monday morning I knew there was somehting wrong...really wrong, so we headed for the ER at the Hilton. Upon the usual pee in a cup and let's check your vitals, the nurse said, Have you ha morphine ebefore.... BRING IT ON! one pill...one magic pill and the pain started subsiding. They then did a chest and head CT scan and the knowledge I was spending at least night here.

Friday, February 27, 2009

Chemo Session #1 - and the end of radiation

The end of radiation is a very happy occasion, the decadron taper is almost over (that;s the pill for the seizures that keeps me up at night, and the radiation itself stops tanning my white ass. In addition, my digestive system tries to go back to normal. This time around chemo is 3 single sessions a couple of weeks apart so that I get a brake form the weird meds and so that my digestive system and the people in my head all get to take a brake. Yesterday was day 1 for session 1 of chemo.

You get there 1 hour ahead of your session for blood work, which when I looked at the results I was horrified. Everything was below normal ranges; you must understand that for Mr competitive was not going to do so either the nurse fiercely patronized me or it is true, I was in the high % of "under the circumstances" your Numbers are good. As far as I was concerned I need more protein in my diet and fast 30 minute IV flush and 30 minute poison, and I was out there. Compare with the 5 hour sessions from the previous protocol this was looking good. No Nausea, stomach confused but not much and an intense desire to sleep.

That got confused because I was almost at "0" with the steroids but I needed to boost to 16mg daily (which is getting up there, for the day before, during, and after the chemo. THEN I go back to 1mg... confused?? you need a power point presentation to follow this fucking thing, but of course I have one so we are on the way out of decadron...YEAH!!!

In the process St Paul bought me for one of our bicycles a contraption that I can use to get my legs back in working order. When the decadron is working, it chews up your quads and they are simply useless, so a little physical therapy is in order.

PS I would like to thank both Eileen Nightingale and my brother for keeping me company and sane during the weird ass week...much appreciated as always

Tuesday, February 24, 2009

well that is an interesting twist.

Yesterday, we had an appointment with the brain oncologist, yes they one I really had issues with. This time around, we had about 20 minutes with the nurse practitioner who asked very good questions and was very insightful. Then, The "Dr" comes in. it is like somebody gave her a serious dose of chill...Much more civil, still and ass, but at least a conversational civil one.

So the current status is as follows: We have a node that glows (cancer) on the left armpit, We still have the people living upstairs in the brain, although many a shrunken in size and at least allowed the pressure to subside. It seems that the pressure in the brain is what was giving me the headaches, the light flashes (optic nerve issues)We also have the one in the back side between the spinal cord and the sectum whatever name it is. This last one we have been radiating for 10 days. Tomorrow is the last day of ass radiation....

On Thursday I start chemo. The interesting thing is that the original idea of the chemo was to take care of the armpit and ass cancer, but it seems that there is a study out that says that the chemo agent they are given me will go up to the brain cancers and hopefully reduce or destroy. I will have 3 sessions of this chemo, one every 3 weeks and the dosage of the chemo poison needs to be adjusted to see how it does with the brain cancerous masses.

As an aside, Now I have like dust bunnies running around my head because the debris left behind is not cleaned by anyone...I have issues with that!

This new chemo treatment has be doing massive amounts of a particular steroid that I hate and that I've have to take for the last 3-4 weeks. This is the reason why some blogs should have been edited by someone NOT on drugs!

Monday, February 16, 2009

Another 4 am...

What the fuck... I am going crazy seeing the first plane (red eye of course) landing at Logan at about 5:05am I deeply apologize to all of you who suffer from insomnia because it totally absolutely bytes. Except a certain person who mmight be calculatin how many hertz the house is vibrating at...you have issues and nobody can solve those.

On the other hand, it is like having 30 hours in a day. I use to drink coffee in fairly large quantitites, mnow it is like IV straight to the vein! yummy

Sunday, February 15, 2009

and that is one ugly MOFO

Presenting the sacrum...who knew. I have mispelled, misquoted, and in general called the damn bone everything but what it is. So to those who ask... My Sacrum hurts... that is the bottom line.

Can you tell the steroids are clearing up? I can actually insert links!!

Walking the Sanctum

We have done 3 radiation sessions so far, and my skin is beginning to have a certain tanning glow. In addition, sitting down is starting to become a touch annoying since there is this weird pressure back there. The nurse at BI (who I think rocks the world) gave me this incredible high tech pillow to sit for the long ride to NH and it was excellent. However, I am doing so much sitting and walking..(well more like Tim Conway) and it seems that I keep slowing down more and more when I walk. OH GOD I am walking like my mother... 1 speed and it is reverse!.

On the really good news front, I am on the last taper of the steroids so my brain will go back to normal soon...maybe I'll be able to speak in complete intelligible sentences for once!

Saturday, February 14, 2009

The new fry cycle

Sometimes you wonder how medieval a system of torture this radiation thing is. Well let me tell you, modesty goes very far out the window. The radiation for my pelvic-sanctum area requires 5 zappings... 3 in the posterior for which I am already developing a tan (ouch) and 2 on the side. The ones on the side are the most intense since they don't interfere with any other organs other than the cancer. The funny thing is that I have to put lots of moisturizer on the side because it looks crunchy peeling I had too much fun at the beach NOT!

Peace and Quiet

At last...we are in Waterville and it is just quiet and beautiful... Slept 6 hours straight which these days in excellent. Repositioning all my Steroid purchases and organizing my room. What can I say an incredible OCD day awaits....HURRAY!

By the way, 1 more step down on the steroids starting today, thus sleep should be easier.

A shout out to my insane brother and wife (happy b-day!) who are driving to New Orleans for Mardi Gras...HAVE FUN!

Friday, February 13, 2009

Once again Logisitics Eileen

Saves the day...Dr Dude appointment is at 2:30pm and the radiation session is at 3:15pm...somehow my head is in space and Eileen says we neeed to move...She is calling cause ethis is getting to tight ... Bottom line she is escorting me on a mad dash through the hospital so that I can reverse the order of things...radiation first then Doctor. Zap my ass and run back to the regular (now 2 hours late) appointment, where I will start chemo in 10 days. No more Jungle drug; now it is a common protocol for which I needed of boost of B12 vitamin and lots of folic acid. Let's see how this goes, at least it is a lot easier than the last two times.

Thursday, February 12, 2009

What / where is my head at?....

It is simple really.. I have developed the most severe case of OCD in the world...I live cleaning and fixing. As in the past, working from home and the hospital makes it bearable since I can actually think.

In the fun news department, we are considering taking the train cross country. I think that is on the agenda for March.

I have heard via email from a handful of long lost people and it has been very interesting what they suggest I do for my next bucket list event.

News from the visit with "mother" will be posted during the day when I am most lucid... Fraud is still taking notes and the event happened 5 days ago.

Where we are as of right now...

Just so that we are all at the same page in the same channel. We started the next bout of radiation therapy yesterday. As you all remember from previous times, it is a long cold table and semi-nudity. It is quick, and not painful. We have 9 more of those treatments (Rectum-Sanctum. Also of note, we see the chemo Dr to see about those magical jungle pills.

Friday, January 30, 2009

A very very very long day

Today was a very interesting day. Certainly one that as the day progressed Mr and Mrs Cranky did some tricks...nasty little fuckers...So we begin with the classic Ultrasound test... thump...thump...thump.... it is not a babies heartbeat, it is the sounds of my heart pumping extra for the gained 20 pounds of flesh, thank you IAGO)

Next, visit with new Radiation dude that seems to specialize in the so called "lower abdomen region" whatever that might mean. He looks, he prods, he questions AND THEN HE SAYS drop the pants we are going in... MOTHER OF GOD must they always surprise you that way... The good news was that anatomically everything was where it was supposed to be and appeared to be working... He did say, stop eating like a pig, it will be a bitch to work it out...Advice taken, (although I have eaten 1/2 box of sandwiches just writing this.

Meanwhile at the same time, my sister and brother are coordinating a quick visit to the homeland (URGH!) to see the immediate family and... nothing fancy, 400 of the closests cousins (KIDDING) Just a mall meet and greet and to see...(music please...) mother... After that we are planning some days by the beach to chill and chill some more.

and now, back to the hospital...He will see me after lunch to have yet my 4th mapping of my ass... Has anyone thought about the fact that I have lung cancer in my ass???? confused????TELL ME ABOUT IT. So what they do is the put you in the CT Scan and literally digitiza your ass. Then, this sadist ass comes over and does a series of tattoo's to use as reference points. As his nelliness (me)paints his nails black, (very goth of me don't you think?) I just think big tattoos got to hurt like a mother!

The new thing is that I have a big mass (not my brain) between my Sacrum and my rectum (latin terms to confuse the kiddies) . I like to think of it as between that place where your back looses it's name and the beginning of the ass. The object willl be to have them never EVER touch...I guess pain ensues. Not that this is not a pain in the ass anyway...

Now, we are all confused

We all remember the PET-SCAN with the lovely Frappucino Mix flavor..foolishly I thought it was about the brain tumors...Well,there they are throwing the in-field curve ball..TOTAL SCAN. That's all good, but now we know for certainty I have two more cancer locations...(what the fuck is it the Grand Opening week at Wal-Mart? More locations for your shopping convenience)... but digress.

One node is lighting my left armpit and the other one, much more colorful and active seems to be between my rectum and the spinal cord. Don't be alarmed yet, on Friday we are gettting the doctors to explain it all to us in a more clear concise fashion.

There seems to be a few new choices in the treatment area... 1 is the Cyber Knife, (very high tech but tomorrow will be explained, or a new chemo drug that I only take orally...let's face it, my veins need a rest!. Interestingly, when you hear the doctor talk to the drug company rep, it IS like a deal is going down with Pablo Escobar, it all sounded very exciting but the best is that the side effects seem to be very mild and I can travel WHILE doing chemo...fucking efficient even ick!

Does it look good, no... am I having fun from here to wherever there is...YOU BET, however..Roid Rage can and will get heads cut off for saying dumb statements!

holy crap, now what?

Let's start with the WHAT THE FUCK PART... I am weighing 178 pounds...The heaviest I have ever been in my life..I look like a pregnant woman and I guess I have the mood swings and trades they get. To boot, my skin is NOT performing at it best since it stretching and contracting..JUST NOT PRETTY!

Tuesday, January 27, 2009

What a pig...

After eating my way through every buffet line...massive steroids = 17 pounds gained in a little under 2 weeks. No more binge eating, until the ice cream bars are gone...and walk walk walk.

EILEEN...your brother is an official PORKY CERDO

what insomnia?

Normally, I sleep solid, no waking up, no tossing about. With the steroids, that has gone out the window and I find myself doing laundry at 3:00am. Granted I've cleaned all my sweaters and rerranged all the shelves, but even I can recognize ocd a mile away.

If only one person in a couple suffers from insomnia, shouldn't there be 2 bedrooms so that they can actually sleep or be awake independently? I am very confused since it is I who tell Paul these days to wear earplugs since I know I will be making noise...

and another thing, this radiation session has my skin soooo dry that the tip of the fingers are cracked and in pain. I've taken to using plastic gloves in the house to attempt to maintain a semblance of civility...

is it time for coffee yet???? 5:00am soooooonnnnn

Monday, January 26, 2009

A peaceful week-end in the frigid mountains

I would like to know how 3 Caribbean basin humans enjoy 4 degree weather! It appears that I really should only drive during the day and NOT when my energy and concentration is 0. But, being the stubborn ass I am, I wanted my car up in NH. Enter sis/brother in law and pumpkin...Let's patronize Max Headroom they thought to htemselves...between the 3 they managed to make me think I had free will.... yeah right. I do have to admit to sort of forgetting where I was going, but maybe that is really not so bad...is it? I have slowed the pace of life on purposes to smell the roses better.

for 3 days, we did nothing...and I mean absolutely nothing. We ate very well, had lovely naps and conversations while napping. Right know, I can fall asleep next to a column for 5 minutes and think days have gone by. Just lovely. The drove me back home today and all I can say is that it was the perfect week-end. Frank took care of all the work stuff and emails flew back and forth...

Tonight there seems to be a lecture In my head by Pirandello and Italian Comedia del Arte. It only makes sense since I have been craving pounds of prosciutto with melon....

Sunday, January 25, 2009

The shrink

I have been going on and very off to the shrink nnow for at least 20 years. He is concise, non-verbose and incredibly astute. During this time of meetings with small and large dwellers, he has been very clear. Careful with the rhoid rage is very real. My so called thoid rage has taken 2 patterns, on line shopping and ice cream bars at all hours. Harmless so far.

In addittion to that, he classifies me as black/white with a volume of 8 or so, now with the steroids he puts me about 12 in intensity with a color variation of "0" it either is or it ain't.!

Las night I work for real work for aout2 hours and had a small board meeting qith the tenants. Since I know that drugs and sugar makes them happy, they will stay away from disturbing my sleep. I also looked carefully at the bottle and it DID say I could take 2. YUMMY - 5 STRAIGHT HOURS OF SLEEP. Granted it is early, but I am a new man!