Things I've Learned and Other Stuff

So YAY I finished my first round of chemo today , gee seems like just the day before yesterday I started it...oh it was. So far this is how it's gone: go to chemo, run a brief errand or two ( post office, quick stop to pick up an RX), home, lunch, collapse until dinner time, have dinner, manage to stay awake for a few hours, pass out until about 4 am then snooze, watch TV, whatever until it's time to get up and do it again.
I've also learned some new terms this week like "chemo brain", I have experienced this several times, it's when the word or thought is right there in your head and it's not coming out, or maybe it's a bit confused and you can't put it all together quickly enough to make sense. I'm told this is pretty common and although frustrating should pass after chemo.
Of course there are all those medical terms, names of scans and names of chemo drugs and all sorts of terms that unless you're a medical student or a cancer patient you'll probably blessedly have no need for.
But my new favorite term, obviously generated by an insurance company employee with an odd sense of humor is...are you ready? Cranial Prosthesis , new skull part maybe? Well almost..a cranial prosthesis is a darn WIG! They tell me that I have a 98% of losing my hair with the type of chemo I'm on...I'm OK with that. In the hair/life thing, life wins hands down. Anway someone said see if your insurance will cover a wig, so I started looking and my secondary insurance certainly will cover a cranial prosthesis. I read the literature and it said to buy your CP before all your hair falls out so you can match color better if you want to and you can get it styled so you're ready to go when the inevitable happens. So this AM I bought my very first CP, I'm not sure how much I'll wear it, probably just when I'm out and about and it's not 85 degrees, but I think it's a good thing to have just in case I happen to buy the 10,000th gallon of ice cream at the local Stewart's Shop and have to be on TV(it could happen). I think the reason I really wanted one was so I could actually say that I own a cranial prosthesis, hey it sounds like something smart, maybe people will think I had a brain implant to overcome the effects of "chemo brain".

Shall We Dance?

Today was my first day of chemo, at 8:00am about 8 of us and some of our support people ambled into the chemo room and took our places in the lounge chairs that line 3 of the 4 walls. The majority of attendees were older men, many accompanied by their wives.

The chemo techs are all very efficient and kind and they began hooking us up to our various cocktails of cancer killers. I sat there and looked around the room and thought if they just brought in a counselor we could have a support group too. I've always thought of my health issues as kind of a private matter to be shared with people I choose, not here, here we are all members of the same club. I think that's why people bring other folks with them to sort of be a buffer from the other people in the room. Not that they probably aren't very nice people and maybe I'll get to know one or two over time but for a first day it was kind of overwhelming.

Anyway there are different protocols for administering these drugs and mine ; along with 3 of the older gentlemen included an intravenous does of Lasix ( a fluid reducing drug; translation you run to the bathroom ALOT). And so began the dance of the IV poles to the one bathroom in the chemo room. It was a masterpiece to behold, each one of us in turn taking a sweep across the floor to the restroom and back to our assigned place. I of course got the IV pole with the "bad shopping cart wheels" I think they probably give this to the newbies to see how well we can cope with not only the 'dance " but a bad partner. This whole exercise also brought back memories of trying to quietly remove myself from rooms to use the facilities only to have some wiseass at a party yell " we know where' you're going" .

But hey I survived, I survived 2 different medications, the dance of the IV poles and 4 1/2 hours in a lounge chair in the chemo room....OK so I came home and passed out for a good while but I'm OK. No nausea yet and hopefully never, just bone weary fatigue...I can deal with that. Tomorrow I go back just for 1 drug, about 1 hour and then I can rest.

Stay tuned for my brief adventure into insurance company lingo.

Let The Games Begin

Tomorrow I go for my first chemotherapy appointment. I have to be there at 8am, that alone is enough to make me cranky. Anyway I was trying to figure out what to bring with me, my iPod I guess and a book to read, I could bring my laptop but I don't know if I can get a outside connection. Maybe I need to invest in a handheld video game, maybe not. I have tetris on my phone if I could figure out which buttons do what.

Up until now the only experience I had with chemo was when my late crazy boyfriend was going to Syracuse once a week. He was treated at the Regional Oncology Center with is relatively new and apparently very well funded. There each patient has his or her own cubicle and their own TV, there were nurses and volunteers with warm blankets and juice and cookies and all in all it was a well appointed atmosphere to spend a few hours in. Here as far as I can tell, there's a room with alot of lounge type chairs, a ( as in 1) TV and I wasn't there long enough to scope out cookies or warm blankets. Now mind you I don't think this has any impact on the level of care patients receive from the staff and as a matter of fact my little corner of the world is probably a bit more personal and less institutional but the other place sure was nice. Kinda like the difference between the Motel 6 and the Marriott, but hey the Marriott never left the light on for me. I've been reading alot about cancer treatment and visualization so I've decided I'm going to think of the chemo like a pacman gobbling up all the cancer cells....probably nothing someone hasn't thought of before but it seems to work for me it was that or Hungry Hungry Hippos and that's too darn noisy for me. So I'll let you all know how it goes tomorrow, hopefully a totally uneventful experience that somehow involves cookies.

Let It Be

Those of you who have been following along know that yesterday I not only met my oncologist for the first time and decided on a course of treatment, but I got to spend some time with my ex-husband who I haven't even spoken to since 1997 ( email is a wonderful thing) and his partner who obviously I'd never met.

Our divorce wasn't the easiest in the world but it wasn't the worst either. Especially when I ended up getting what I wanted :). My contention had always been the relationship between Chris and his Dad. As the years have passed they have managed to get things together and I'm happy with that.

Honestly it was probably a great day to see Scot again after all these years because frankly I had so much on my mind about the oncologist appointment that I really didn't even have time to consider what it would be like to see him again.

After I went to the Dr., Chris and I had lunch and then I went back to work to finish up a grant that was due. When I got home Chris , Jenny, the baby and Scot and Kenny were all just coming in from an outing. It was strange to see him in the house that we had lived in after all these years, but then again not so strange. I met Kenny who seems to be a very nice person full of happiness and humor and everything was OK.

Maybe I'm mellowing but or maybe it's because I've literally been hit with life and mortaility right between the eyes lately. March 31 my beautiful grandson is born, May 26 " Sue you 've got cancer" it's been an interesting couple of months for sure.

I think everyone has their version of the serenity prayer ( or should) or at least a way of stating their coping options. One I hear alot is " It is what it is" well that may be but in my head that sort of says : 'OK there's nothing we can do, it is what it is, we'll move on" it dosen't really show any kind of acceptance to me. These days I prefer " Let It Be" maybe it's the old hippie in me or maybe right now there are things I have to "let be' if only for a moment in order to move to the next adventure.

So I "Let Be" my past with Scot and found it was actually kind of nice to have someone to share childhood memories of Chris with, especially when comparing him to our beautiful Grandson. Facing what I'm facing, I don't know how long I'll be around to be the 'memory keeper' although I'd like to think it'll be a good long time.

So, it was a day to "Let It Be". Let it be time to get this cancer under control, let it be time to rest old hurts and let it be time to just be in the moment and enjoy life.

OK so I got introspective for awhile, I promise I'll make it up to you next time , one blog without a good laugh is enough!

Oy what a day!

Yesterday was one of those days that takes about 3 days to "wind down" from. Not only did I make my first trip to the oncologist but I spend some time with my ex-husband who I hadn't even spoken to since 1997 and his partner ( that's another blog another day, or maybe later). Get coffee this could take awhile.

Anyway Chris and Jenny came up and Chris came with me to the Dr. and Jenny and Rex visited with Great Grandma while we were there.

After some preliminary blood drawing by the wonderwoman (30 seconds 2 vials of blood didn't feel a thing). We met with the Dr's PA who told us about my kind of cancer and asked alot of questions and did a little exam. She was nice and took her time and answered any questions we had, then she went to get the Dr.

I can't say this guy is Mr. Personality but he's direct and he talks in people friendly terms and he says what he thinks and I guess aside from the fact that I don't think I'll be sharing cookies and tea with him anytime soon he's a good guy.

So here's the deal, I have small cell cancer which is very "active" and likes to travel and grow at a pretty good clip. The good news is it's very receptive to chemo therapy and radiation. Which for me is very good news because the tumor ( damn I hate that word, I need to call it something else) isn't operable, meaning they can't cut it out. Now that dosen't mean it's not cureable it just means it's in a spot that's not "cutoutable". So the Dr said if I was going to get a combination of type of cancer and place for it to be this was an OK combo because it does respond well to chemo. He said IF the cancer hasn't spread , (we don't know that yet) the cure rate is 70-80% so that's pretty darn good. If it has, no way to tell until we know where it decided to meander to. So I will be having a brain scan ( long overdue just for practical matters ) and a bone scan in the next couple of weeks.

Next we discussed getting a second opinion, he said I was free to do that and he could reccomend someone but he was concerned that this would be another 2-3 weeks down the road before I would start treatment and if it was him he wouldn't wait that long because of the "frisky" nature of this cancer. That dosen't mean once I start treatment I can't get another opinion, he was just concerned about time being wasted in the meantime. So, that being said ,I start chemo therapy on Tuesday, I'll go 3 days a week and then take 2 weeks off and do that 4 times. I have researched and this seems to be the beginning standard of care for this type of cancer. Then after the scans are in, IF there is no spreading I will start radiation for 6 weeks. If the cancer has spread then no radiation because they won't be able to pinpoint places to zap. So as much as 6 weeks of radiation dosen't sound fun I have to hope that that's what comes next because that's my quickest way to getting rid of this.

Thank goodness I had Chris with me to take notes and ask questions! We discussed it and interestingly while I felt I might be rushed into treatment Chris was in total agreement with the Dr. I mentioned wanting to check anyway with the Dr. in Syracuse and he said I should go ahead if I could but that I should start treatment anyway here and I guess I can't fight with that. When I mentioned I thought I was being rushed the answer was , yes they're rushing to save your life..can't fight with that.

So I hope that answers some questons for now, stay tuned for the meeting with the ex ( interesting) and the difference between the Regional Oncology Center in Syracuse and the Drs. office in Watertown.

Once More With Feeling

This past week I've had pneumonia again, not sure if this is a cause and effect thing but I know it's a pain in the butt. Anyway I'm back on the steroids and the antibiotics, blah, blah, blah.

I was scheduled for a pulmonary function test on Monday, my GP told me to cancel it because obviously if I have pneumonia it's not going to be accurate. So I go to the pulmonologist's office because I have some paperwork I need from them anyway. I tell the lady behind the desk who I am and that I need to cancel this test and why...she looks me up on the computer and says well we need to wait 6 to 8 weeks then to make sure the pneumonia is gone. I said, probably in 6 to 8 weeks I'll be having chemo ( I don't know this for sure but it seems likely). Well you'd have thought I just spit in her coffee, big eyeroll, heavy sigh she turns back to the computer screen. I said well you can talk to the Dr. and just give me a call if that's easier for you, I get the look of death and she hands me an appointment card for June 14th, this isn't 6 weeks , this isn't even 2 weeks but OK I'm not fighting with her.

Now I'm thinking oh crap I have to ask Miss Congeniality for these test results so I can send them to my secondary insurer. So I say "May I have a copy of my needle biopsy results please, I need to send them to my insurance company." She says " You have to fill out this request and sign this release form and we'll call you when they're ready" Call me when they're ready? are we having them recreated in calligraphy by monks in the basement? Can't we just open my file take the ONE page out and copy it? Apparently not, Miss Congeniality wins round 2.

I have to say that I've been to quite a few medical offices in the past months and this one takes the cake for hiring creatures from the dark planet to work there. I went there for a blood test before the biposy and they sent me into the back with a young woman who asked me like they always do which was the best arm to find a vein in and then used the other arm...poked around awhile ( did that just make you shiver?) and declared she couldn't find a vein and I should probably go to the lab across the parking lot....I'd have done that first if the mistress of the dark at the front desk had told me to.

Anyway I got the OK to go back to work on Monday so that's good news and maybe if I'm really, really lucky I'll get that call from the document recreation department of the pulmonary associates soon.

Put on Your Big Girl Panties and Deal With It

Since my diagnosis just under a week ago (wow was it only 6 days ago) I've been dancing around the whole concept of me having cancer. Oh on an intellectual level I know it's there but on an emotional level it's one of those things that creeps up on you in the middle of the night when there's nothing but bad TV to fill the space that you like to keep filled so these unbidden thoughts don't sneak in. I think a week is probably enough time to let things sink in, now it's time to do something. Honestly I'm not sure what I'm going to do but it'll be something I can guarantee that. It seems I've already read the good, bad and ugly about my kind of cancer. I bought a book about 50 things you should do if you have cancer, maybe I'll do a few of those. One of them is drink alot of water, I can do that. One I particularly do like is take time when making treatment decisions. This gentleman says that although cancer patients shouldn't waste alot of time when it comes to making treatment decisions it's also not a cut artery that has to be dealt with immediately. Makes sense to me. So the time has come for me to put on my big girl panties, deal with it and have a glass of water. OK so that dosen't sound very proactive but it's all I've got for now.