finally some sleep

I am so for the pharmaceuticals developing good drugs... 1 ativan bought me from 10-1, the second ativan + 2 Sleepy times bought me from 1:30 till 5:30... Heaven I tell you.. Caroline suggested the use of multiple naps during the day to try to reach that 8 hour marker... Certainly fun when you have the time.

Pool and Beach are closed today so I don't have any radiation or chemotherapy.. It's like I am on vacation

I am also taking a vacation from all visitors, all I am doing is watching tv, knitting, blogging and doing nothing

BTW- X-Mas has officially left Marina Bay, Paul and Adam did all the putting away chores in 4 hours.. not bad at all.

broiled not fried

I am tired as hell.. no sleep is no good for me. We get to the radiation #2 appt early, but I falling asleep everywhere...Get escorted to the machine (which btw flips top to bottom) and the setup and line up with my tattoo begins... that takes no time, however there is a small malfunction with the mechanics of the focusing device, I wouldn't mind but, your hands are over your head semi bound my a constrictive device ( pipe down you leather queens!) and I am flat. If you remember if I am flat my head gets swollen; tolerable for 20 minutes not for 40.

After all this drama, you guess it... 3 minutes of zapping.. front and bag... add lettuce, tomato special sauce and a pickle and don't forget the sesame bun.

Afterwards went shopping for some decent sweat pants (hospital is very cold) and a hooded zipper sweatshirt... Very Palm Beach

News at 6:00

I am overwhelmed by the emails, you have to stop it (send more) really stop it (I love them!)Some of you have made me cry, and I hate you for it, and some of you have made me laugh. I can only hope it remains as good as it is now. You are all very sweet and I can only hope that we all learn how fleeting moments are. For Fuck Sake, enjoy them!


Now back to the news desk.. Tina Louisa?

current time is 6:15 it is Saturday morning and the night was not awful, it was not great either but I think that I can safely say 4 hours of sleep. My chest feels that I went to a fist fight and got beaten up. However, more cabana time for me today. They are opening the pool area just for me.. somehow, I don't think that is a good sign.

No more morning coffee until this nonsense is done. Raspberry water and a doughnut mmm breakfast of champions. No news to report from PR and my mother, I am sure that will be today.

more news later in the day

That old black magic

Old black magic has me in its spell
Old black magic that you weave so well
Those Icy fingers up and down my spine
The same old witchcraft when your eyes meet mine
by Louis Prima And Keely Smith

Hold that thought and remember that the punch line for the day is 3 minutes.

Paul and I left the house for the hospital at the crack of dawn. I didn't need anymore coffee since we went out at 4:00am to get some. Arrive at radiation oncology on time (duh!) and wait for my sister who also arrives early. New character in the play shows up. Dr Radiation Oncology interviews me AGAIN, however makes an interesting genetic link between my grandmother on my mothers side who died at 42 of lung cancer (didn't smoke and lived in the countryside..you know clean air and happy cows). He explains what the radiation will do and all that technical stuff.

Wear yet another creation of the Armani Hospital line, a lovely powder blue hospital gown... it is the latest in the hospitals in Milan... I am going to be scanned and tattooed... YES PEOPLE tattooed. They scan my chest and with a Sharpe, select the appropriate 5 spots. Check and double check and get a tattoo pen and voila! I have now 5 idiotic dot tattoos on my body. Granted they are tiny but I needed to bitch about it.

All the doctors and staff go away for 20 minutes to do the math... basically to determine how much power is required to nuke the shit out of the tumor. For those keeping track it is 5 days at 300 10 days at 200 and 10 days at 200 localized to a very small specific area. That is 5500 units of whatever being whatevered on my chest for the next 5-6weeks. I know... I work in a technical profession.

Lunch and transfer of venues.. We finally get to go to the cabana section of the hospital. Lovely pale green with a 1990's pergo floor. Nursing staff is terrific and explains very well what I will be going through. All of you out there listen well.. EXCERCISE, EAT GOOD THINGS IN APPROPIATE PORTIONS, BE HAPPY AND LISTEN TO YOUR BODY. Interestingly since my body will be compromised between the chemo and the radiation, NO SICK PEOPLE around me or around Rich or anyone else who does not like sick people being contagiuos.

They place me on a Star Trek looking contraption that can go anywhere 3-d, extremely cool. They run a few tests to make sure that my 5 tattoo locations match the scan of the machine. In theoretical terms I understand what is going on with the machine. As a non-believer of magic, someone says that something I can't touch is doing something to my insides that will be good for me. That is a little to Salem's Witch trial if you don't float kind of thing.

They all run out of the room (it's that voodoo ritual thing) switch on... 300 doses : 3 minutes switch off.

You can go home now sir, see you tomorrow.

20 hours of stress
6 hours at the hospital
2 hours of sleep
3 minutes of radiation.... priceless

Oh Orpheus where are you????

Sleep eluded me from 2:00am till ...well I never went back to bed. The anticipation is like a first day of school combined with the first final of senior year. Today is radiation and I have no idea what to expect... but since it is in 2 hours I will find out soon. DAMN THIS SUCKS

ps. The Ativan produced some weird ass dreams but not the expected restful sleep

How do you tell your parent....

It was very interesting that I did not come out to my parents directly, the short version is that my mother asked my sister if I was gay. Which my sister replied ... DUH....

If you remember from a previous blog entry, that is why we do the brother/sister conclave. To this day, my mother can accept it in Boston but certainly not in Puerto Rico, a very interesting dynamic, she blames it on the culture, I blame it on my mother caring too much about what the family says or don't say.

Up until today my mother does not know any of this saga that you are part of. There was no hard fact to convey, thus no need to worry her sick. However, now I do have the facts and I feel I have to tell her; not an easy piece of news for her to receive. Her prince is sick...That won't fly well! (dear reader it is prince not princess!)

Once again, the conclave pulled off an amazing trick, my brother will arrive at 7:00pm in Puerto Rico tomorrow to help with the stress created from my 6:00pm call to her to break the news. Hope it goes well..

NOT for the faint of heart

So we get to the clinic... Weird to have a gift shop on the Oncology floor. It is called Windows of Hope, and they sell everything from wigs to t-shirts. We walk in to the reception area and it is like cocktail party in which I am the latest guests who doesn't know anyone; they all know each other. Once again weight, oxygen level, blood pressure and heart rate. Very well...

I have my entourage with me, Paul, Eileen (sister), Lester(brother) (and oh yes... very PR names aren't they) and Eileen's husband Gaston. I had decided that I could only deal with one person besides Paul in the room, so Eileen was drafted as the secretary (although I need to warn everyone...Under normal circumstances she is a cryer!)

We dutyfully sit there and wait... (remember, time in hospitals can and does go backwards) and wait... The Dr. that I like, her delivery is very logical and direct, comes in and proceeds to tell us the facts. I know what you are doing, close that extra window that you just opened, DO NOT GO GOOGLING, read the whole thing and then google away, DO NOT TELL ME your findings, very sweet of you, but I was there, don't want to hear it again.

Here goes it.

I have a Stage 3B (3 out of 4 "4" being worst and B for not having spread) non small cell lung cancer. Believed to be an adenocarcinoma.

So you, as were we, are saying ok, not bad so far... very technical.... so they talk about things being setup for me (I've always wanted to have staff) and she asks to leave the room a second to get ALL the doctors. So Paul, Eileen and I are upset, but keeping it together.

The big guns walk into the room and very calmly (how do they do that?) start stating the explanation behind the facts. I've been scheduled for radiation tomorrow, and start chemo next week. 8 weeks with a private cabana in the radiation tanning booth.I have been assigned 1 nurse for the entire process. I am telling you, this concierge system at the BI Hilton is fantastic.

In addition they give you anti-nausea, and anti anxiety pills.. and I guess when you are in chemo it is encouraged to take a long nap. To make matters more interesting, I am encouraged to eat (well) but a lot. Loosing weight is not a good thing, and to hydrate thoroughly. I will transition from the Stay Puft Marshmallow man to a muscle man in 18 weeks..

Them the news, they suck, but it is worth the fight, needless to say, Paul and I look at each other and start to cry or laugh.

This is the end of the first act. Everyone go and get a drink... I DID and go do the bathroom brake. Starting tomorrow, we have the beginning of the second act. Working Title - The Revenge of Mima on the Fucking Tumor - Something better would be good, and I am open to suggestions.

For more information on Non Small Cell Lung Cancer, click on the highlighted link

a musical morning

5:00am The poor dry and tired X-Mas tree is sending us a signal. Put me out of my misery or I will start dropping ornaments on the floor. CRASH!

Morning has broken... 5:30am and we are both roaming the house. Paul took me to get coffee (which I am having LIVE!) we are totally caught up.

Shower and have a Maria from West Side Story moment.. feeling pretty and witty and ... well you all know... I might feel pretty but I look like the Michelin man

Markers for the day 10:30am appointment with oncology.

I'll keep everyone posted

come on... I worked in a lab too

HELLO!! La Divina here..last night got an email from one of the oncology doctors. Pathology results were still not done as of 10:00pm which means 12 hours before our meeting. Imagine, I was going to forgo my morning coffee to be ready for any test or procedure in case they wanted me without food in my system.. FOR &*^$^% SAKE

Anyone out there who knows how long you need to stain cells for characterization, please let me know, somehow 4 days seems like plenty of time.

A little normalcy

For most people, going to work is.... well, work. I happen to enjoy what I do and love the people I work with. Since it is year end accounting time and that is part of my responsibilities, I decided that the only day to do actual work was Wednesday. It would get me out of the house, where X-Mas still lives and put my mind to work.

All in all a very successful day, chatted with my favorite people, did my thing and eventually everything got done. I am always surprised when people realize that I really view the world differently than most. Calm and logical most of the time, with a sprinkle of hysterical lunatic (for taste). I think of it as a successful combination. At least it works for me... and you know how the saying goes.. @$%&'em if they can't take a joke.

Paul made reservations for dinner at a great new place called Copia. He figures that a) I need a fancy meal and b) it probably will be sometime before we have brother and sister (and her husband) all in one place. Sorry to all the vegetarians out there...the steak tartare was sensational! and no wine for me.. Could you imagine such a travesty?

I want tomorrow to arrive and the analysis done, let's get this shit rolling people! no time to waste.

Let's catch up to Wednesday

Let's fast forward a little so that everyone is on real time information. The rest of Saturday was a drag... lovely visitors, but for ^$%# get the hint, if I yawn I want to sleep...but wait, I have to sleep sitting down and that is getting real old. Food at the B.I. Hilton is definitely not 5 star, or 4 or 3 or 2.

Sunday, December 23rd, shower, coffee, and wait and wait and wait some more. We are waiting for the oncology doctor to tell us if it is nasty or really nasty. Paul has it in his head that he is taking me home for X-Mas... The doctors were ok with that as long as I promised to sleep sitting down. Paul graciously offered his bed, (it moves up and down) for me and convinced the doctors that I would be a model student. After nothing happens all day, at around 4:00pm the doctors says that a) I can go home and b) I need a full body CT Scan and a head scan to make sure them cells have not spread anywhere else. Foolishly I think cocktails at the BI Hilton... A great thick vanilla frappe...NOT NOT NOT. Instead I get to drink 1 liter of Barium sulfite YUKE YUKE YUKE.. it is disgusting and not sold in any respectable bar. I shiver to think how much the insurance company is getting charged for that!

I get home and it is just wonderful.. what can I say, my house, my pillow, my Paul and nobody to wake me all night...

X-Mas eve, X-Mas day, and boxing day were very uneventful just me moving slowly and still feeling puffy as if retaining water. Tylenol PM is my friend and constan companion in the sleeping sitting down category. At least I can look forward to ging to work on Wednesday and the doctor appointment to discuss diagnosis and treatment on Thursday.

The Divas show up

I slept like crap, no wonder I hate sleeping in airplane seats. I was also woken up several times, 3 for vital signs (oxygen levels were a touch low) and 2 blood samples were taken. Don't try to rest in a hospital it's just not going to happen.

Ms. Cranky, (that would be me) had to figure out several things, a) shower b) survive till 10:30 with no coffee... this Cancerous mass is interfering with my morning coffee? Them are fighting words! So I called the nurse and told them that I needed to be unhooked from the heart monitor and the IV hookup thing covered. Showered, not like at home, but will do. Nice thing about the B.I. Hilton, they do give you toiletries upon your check in...nice touch. The coffe part will have to wait.

Paul brought me my knitting and a book, hallelujah I have something to do, he had setup a network of calls to make sure that as soon as I was out of my biopsy this morning, coffee would be there waiting for me. Love the man! So all of a sudden my sister and her husband show up. MMMM I thought I said stay away until we know what we need to do. Nobody listens... but it was a nice thing to know that #1 sister was there ready and in her battle station. The Thoracic Cardiovascular doctor shows up and let's me know it was show time. They explained what the biopsy entailed and right there I said... GIVE ME DRUGS or this ain't happening.

They took me down to the CT Scan room and all of a sudden the split personalities show up. Technical Betty thought that what they were about to do was incredible. First scan my chest, then have the scanner determine where to mark the "X". Finally a big ass needle was to take a slug of the so called mass (actually two samples) for the lab to do a series of test, pretty impresive stuff if you ask me. Think of when they do the test in the arctic with the long pole to determine what happened to each stage of the ice cap.

However, La DIVINA (that would be my other personality) had a La Boheme moment all I needed was the make up and costume. That was the emotional moment. I was a mess, the poor nurse who was incredibly sweet was just trying to make sure I was able to go thru the test. She kept on saying I know you want your partner to be giving you a hug, but will mine do? Yes i wanted Paul and her and everyone in the world to give me a hug; but you all know me!!!! That stage was short lived and Captain Con~o (yet another of my personalities) appeared on horseback (Captain Con~o is like a Marvel Superhero, but latin good looking and he can dance think of Antonio Banderas (OK, I can cast my own movie if I have to!). You know when people ask you about the AHA moment?? That was it.

Major decisions were done in a great liquid valium induced state ). This is MY cancer and I will deal with it my own way. I will research what I want, and I will ignore what I don't want to know. No pity party... I hate those parties, they are boring as shit. More importantly, I am not comforting anyone regarding this, I need my energy to eat all the chocolate chip cookies I want just in case the treatment makes me loose weight. Some people enjoy getting new wardrobes... I am not one of those. So La DIVINA has a script and it is a private script. It is my play, and I am the director, writer and actor. Bring it on. There are places I haven't been to yet and things I need to do. I came out of my stupor.. a man with a mission!

That mission started with a FABULOUS Coffee.. damn it tasted good.. There was a catch however... my #1 favorite brother was in the room with my coffee. He just flew in from Dallas.. Don't these people take directions???

Excuse me...I have WHAT?

Friday 6:00 am - looked in the mirror and said to myself, I work out like a maniac and no muscles, this morning: 18" neck, shoulders for days and one arm, the left one solid as a rock. Breathing was difficult and I sounded like I had asthma. 8:00:00 Call the Doctor for an appointment. Get my ass ready for 10:40am appointment.

Got my swollen self to Beth Israel and when my doctor saw me she just could not make any sense of the symptoms, so she just said go straight to the emergency room! As I am driving to emergency I park the car (no valet) and check in. It seems they were waiting for me. Vitals, usual crap and on to a room to wait for blood tests.. Nobody wants to say what they think because nobody can figure it out, however the salient characteristics so far are a) swollen head that has traveled down the neck shoulder and arms, no fever, and I can aggravate the shit out of it by laying horizontally or upside down. In other words, if I tie my shoes I have the mother of the head rushes.

Between the doctor and the emergency room, I had called Paul and told him where I was and not to worry, 4-5 hours and I would be out. After waiting for 45 minutes for something to happen, Paul shows up, so much for anyone paying attention to me. I also called my sister just so that she knew the basics of what was going on. After all, all I had was basics.

Finally, something is going to happen... CT Scan! Of I go on the stretcher, the CT Scan speech; you will get a warm feeling and you will think you want to pee but you won't. Amazingly, it was very quick. Roll me back to my cubby and wait. Dan my personal nurse who was wonderful tries to calm us down(Paul and myself). Twenty minutes later, the attending doctor comes over and closes the curtain around the bed. Never a good sign. In a very straight forward manner she explained that I had a "mass" that was pressing on the Superior Vena Cava. This in turn was causing the blood flow to back up into my head, neck and arm. It also explained, why my heart rate was at 95-100 from a normal 65-70.

So now, everyone is starting to get worried, including ME! Paul called my sister for me and try to sound convincing that everything was ok and that we were waiting for tests... Didn't work, she was already driving down to the hospital..

In my head I am thinking a) hopefully it is something like a big ass infection and not a mass as in cancer b)it is cancer OH FUCK or c) at least I didn't have a heart attack from the pressure to the vein.

The docs are very concerned because we will not know what it is or how fast it is growing until a biopsy is done. The biopsy can't be scheduled till tomorrow at 10:00am A night at the Beth Israel Hilton awaits..

I am moved to my new digs, very nice (private room!!!) and I get to eat something (Jello and a bad turkey sandwich), before I need to fast AGAIN for the biopsy. Waiting in the room are the Chemotherapy specialist and the Radiology Specialist. They proceed to tell me that regardless of the biopsy, since my white blood count is about normal, and I have no fever and all 4,000 blood tests are normal, it will most likely be a cancerous mass. I have two possibilities, lymphoma or carcinoma. The first is fast growing the second is not. With that happy thought I took an Ambien and went to bed sitting upright.

I am not feeling well...

I've decided to do this so that everyone gets the same information at the same time ..sort of. On December 14th, I went to the doctor, for what I thought at the time was a sinus infection. I had been having this pressure sensation on my head, with no headache as well as my ears always feeling like they were clogged. The doctor checked me out in that car inspection kind of way and said, your ears are clean, (oh good!) and nothing appears to be out of sorts. Since I had not been taking an anti-histamine; she suggested I do Sudafed (the one behind the counter, not the wimpy stuff on the aisle) before any antibiotics were needed. So I went home and did that...

Forward to Monday Dec 18th, this is not working, my head is getting bigger, not from my ego but from some swelling and sleeping is starting to be a pain in the ass. I make another appointment and go in to get antibiotics. This pesky sinus infection has got to go. As a matter of routine, they asked the usual questions. Are you allergic to any medicine.. blah blah blah. No I am not I respond. I get my drugs and start taking them. Monday night.

Tuesday morning I take my shower and go to work. While at work, one of my coworkers says to me that my ears are red/purple. You know the look, skiing all day and you are 5 minutes before frost byte. Certainly NOT pretty, however I forget about it until I get home. I am feeling a little swollen around the neck, kind of like when you got the mumps. Now I am a little concerned. I know it is not logical to be an allergic reaction to the antibiotic, but something is not right.

Wednesday I wake up and I look like my brother!! No offense to the poor bastard, but he is heavier than me. I call the doctor AGAIN, and setup an appointment. The Dr.is getting a little impatient; me, an allergic reaction??? strange, no fever, no headache, and that feeling of my head is filled up with air pressure like a balloon is still there. She takes me off the antibiotics and has me do a blood test to see if it might be a weird reaction to perhaps something I ate, or something I used. They do hate when everything is as it should be but you are not looking your best. Go home and go to bed, I am exhausted.

Thursday I wake up and look in the mirror... HOLY CRAP I look like hell. It is a cross between the Stay-Puft Marshmallow man and a long session of botox injections. When I got home, I just crashed on the sofa, and by 8:30 or so I am in bed. At 2:20am I am up. I sit up in bed and realize that is the only position that allows me to breath with relative ease and relieves the pressure to my head. I chatted for a while with Peebstuff (he is always up at that hour) and just tossed and turned until it was about 6:00am Friday morning.

And the sweater is done

Paul's sweater is finally done. I had about 20 yards left of yarn. Way to close a call, but it was enough. Very pleased with how in turned out.

A tool bag is not only for tools

For years now, I have carried my knitting things either in a knapsack or in a bag. I have never been satisfied with either. The other day while at Home Depot, I ran into this tool bag and I said to myself; if it is good enough for tools, it is good enough for my knitting items. Now I have a bag that accommodates scissors, measuring tape, instructions, my knitting, and extra skein of yarn, just in case I knit at nuclear speed. I am thrilled with it, and to boot, it looks very butch!

When you are running out of yarn

The mustard sweater for Paul might be running into jeopardy. The back is done and the front is done. One sleeve is done to the armhole and that took one skein of yarn. I have 2 skeins lefts and I am hoping that the caps of the sleeve take a little under 100 yards, since each skein is about 230 yards. I know, I know, always buy a little extra, and I usually do! Just a dumb move altogether; hopefully it will work out right. I'll keep all of you posted.