Wednesday, June 30, 2010

An Almost "Normal" Day


Sometimes things creep up on you when you're not paying attention, or when you don't know what to expect. Today was one of those days.
First I have to say that the weather was made for me today, about 65 degrees, no humidity, I was able to walk outside without feeling like I needed oxygen.
My partner in crime Larry and I took my mother grocery shopping. This is an event because she loves to shop and at 84 is in no shape to rush so lots of time is needed to navigate every aisle of the store once and maybe twice. I haven't gone on the last couple of expeditions because I wasn't feeling well enough. Today I felt OK so I figured what the heck, Larry can always bring me home if I get shaky, I'll go along for the ride. So we dropped Mom off at the cart corral and went to park the car. We browsed through a couple of other stores at the shopping center and then headed to the grocery store to meet up with Mom.
As we were walking I noticed that I wasn't out of breath like I have been when I had to walk more than 100 feet inside or out. This was a very nice surprise, I mentioned it to Larry and he said he'd noticed. Very Cool! So this made me take a quick inventory of symptoms and I realized that the nasty ,nagging cough that has been with me all day every day since at least April has all but stopped. Very , very cool!
Now I don't know why this is, my guess would be the chemo is doing it's thing and the tumor isn't taking up as much space in my chest as it was and giving me more room to breathe. Whatever it is I'm happy.
Reality tells me that I still have tough times to come and there will be chemo and radiation side effects in the future but today was as close to normal as I've felt in a really long time and I'm loving it!

Tuesday, June 29, 2010

Weather, Naps and Music


I wish it was fall or winter. This probably dosen't surprise some of you who know summer and heat have never been favorites of mine but this year I especially wish summer was over. It's been really humid this year and this makes it diffficult for me to breathe. The Dr. says stay in the AC which is fine except that my old house dosen't have central air so I spend the majority of time in my bedroon because I have AC there. Thank goodness I also have a computer and TV there, it's kind of like being back in college and living in a dorm room...not necessarily a bad thing but so far I haven't found the "party floor", this is a very dull school. This week we're going to put an air conditioner in the sewing/guest room so I can at least go sew when I want to. This should help fill my time between naps.
I don't know about you but naps used to make me feel guilty. Sleeping during the day when you could be doing something productive was frowned upon when I was growing up, naps were for children not grown ups. Well this grown up has learned the art of napping, not because I want to but because I have no choice. The cancer/chemo combination teams up on me and I have no choice but to lie down before I fall down. But, you know what? I like it, I like just being able to chill out for an hour or so, recharge my batteries and then carry on, and the best part is, these days no guilt! So those of you out there who don't nap for whatever reason...try it you might like it!
Who want's to help me put together a play list of "feel good" songs for my iPod? You do? Oh I knew you would. I want to make a play list that I can listen to when I'm at chemo or just need a lift and I want all of your input on what songs make you happy ( no Bobby McFerrin please). You can post them at the bottom here or email them to me and when I get a list I'll put it here incase anyone else would like it.
So I'll give us a start, I pick " What a Wonderful World" Louis Armstrong version. OK guys show me what ya got !

Friday, June 25, 2010

Some silly nutrition and TGIF

So when I met with the radiologist this week first I had a meeting with one of his nurses. His name was Frank ( I think) could have been Fred, anyway he was explaining about how radiation works and what it is and pretty much giving me the standard speech. Then he got to the part about nutrition and making sure you have enough calories in your diet and I just started to laugh. He looks up at me like I'm crazy and I say " Frank, (or Fred) you are the first medical person (or for that matter any person) who has ever cautioned me about not getting enough to eat." Now yes I understand about good nutrition, especially while undergoing cancer treatment but hey in 55 years no one has ever said "we need to make sure you eat enough" so for me it was a little personal joke :). Fred (or Frank) got it too and we had a nice laugh. BTW chemo does make things taste different and I find I have less tolerance for really sweet things but bring on the salt! Thankfully there is such a thing as semi-sweet chocolate :)
This has been an interesting week for me. Good news about no wandering cancer, productive meeting with the radiologist, actually having some treatment plans in place. Getting shot with radioactive stuff not once but twice ( different test yesterday). I also experienced a new side effect that I think comes from the medicine they give you to keep your blood counts normal. This is not a fun side effect, it feels like someone is squeezing the muscles in your back and then twisting them. This wasn't something I was prepared for or had read about so when it hit at 3am ( as these things tend to do) I'll admit I was a bit freaked out. Some tylenol, a heathing pad and a good self talking to calmed things down some but this nasty bit of business has been with me for a couple of days now and I'm ready for it to move along. A woman I know who is a cancer survivor told me to always remember there are good days and not so good days but no bad days. I'd have to agree, a bad day would be having this nasty disease and not being able to do anything for it. So, if some medicine is going to make me have some not so good days in order to make me have all kinds of great days down the road, I'll take the tylenol, use the heating pad and sleep it through.
So here we are at Friday, I'm oficially not working while I undergo treatment so you might think I wouldn't care if it's Friday or not. Well I do because that means I get 2 days of not being stuck by anyone, injected with anything and no rides on the scanning machines that I've come to know so well. Yesterday after the second test I mentioned to someone in the cancer center waiting room that fighting cancer can be a full time job, she agreed.

Tuesday, June 22, 2010

My New Favorite "L" Word


I decided to add a nice double rainbow here today because, rainbows are a sign of hope and I got a bunch of that today!
So, today I went to see the radiologist. I really didn't expect much because I didn't think he'd have the test results he needed to help me figure out what's next. Turns out I was wrong. I need to back up a minute or month or so and explain that the kind of cancer I have ( small cell lung cancer) isn't "staged" like other cancers...of course it isn't, I have it don't I? Most cancers are staged from 1-4, 1 being very treatable and 4 being not so good. Well my cancer only has two stages, limited and extensive. Limited meaning the cancer cells have stayed where they started and not messed with anything else and extensive being they all got on the train and took a ride around your body. The bone scan I had yesterday was to see if we had any rail riders in our midst and I found out today I DON'T. This means my small cell cancer is LIMITED and this is a very good thing.
The only kind of "down " thing that I learned is that this tumor is very big, something like 11 inches long and about 2 inches wide so they want to do more chemo to shrink it as much as possible before they start zapping it with radiation. I was told that radiation can't differentiate between good and bad cells and they'll have to "zap" some lung to get to the tumor so the smaller the tumor the less lung tissue I end up losing. Works for me.
So I will do another round of chemo and then some scans and then we'll start radiation in July, 5 days a week for 6 weeks. I'll have chemo at that time too. ( Make note I may be crankier than usual at this time).
I'm very glad to finally have to answers to the questions I've been waiting for and I have to believe that all of your good karma and prayer and positive thinking helped make this journey this far. So thanks for helping me work on kicking some cancer butt !
Coming soon, the nutrition speech , hopefully a pic of my new favorite t-shirt and who knows what else :)

Monday, June 21, 2010

Thank You Funny Technician !

So today I had a bone scan, apparently this involves making one's self radioactive for a couple of days...who knew?
Anyway, I spent way too much time out of the A/C yesterday and when I do that I pay the price because my asthma/ allergies really act up ( they were saying at the Dr's office today this has been one of the worst allergy seasons on record, figures) and add to that a touch of tumor and breathing can be a chore. So this AM breathing was kind of like inhaling soup and I wasn't sure what I should take if anything because of the chemo...let's just say I went a bit batshit crazy which only makes things worse....fight or flight and all of that.
So I had to go get "nuked" and I was feeling a little shaky, the technician takes me into the room and she asks which arm, looks for a vein and we're just sort of chatting. So I say , pick which ever spot is good for you because I'm sure you know what you're doing and she says well you're only #2 today and the first one didn't go so well and then she smiles....I thought OMG a tech with a sense of humor I love this woman! So she shoots me up with the glowing stuff and then I have to come back in 2 hours for the actual test.
In the meantime I go to my regular Dr. to beg for something so I can breathe and he gives me a nice shot and says come back Thursday and he did answer my questions about what I could take and not take..so I was circling for a landing when I got back to the bone scan.
So an actual bone scan involves lying still for a long time while the machine does the work, this is perfect for me! Again the tech was just so laid back and I'm sure she has this routine down pat ( I'm here all weekend, try the veal) but hey it was new to me and much appreciated. At one point the machine came down and rested on my chest and she said "you're going to feel the machine touching you, don't worry if I hear anything crack I'll ease up" again the smile..she also told me not to go to Canada in the next couple of days because with the radioactive stuff in me they wouldn't let me back into the USA...true? I have no clue, but it was kinda funny.
Anway thank you body scan lady whoever you are, I appreciate that you recognized a crazy woman and helped to make everything better.

Saturday, June 19, 2010

A Little Vision Late at Night


This thing in the picture is a vision board. It's a tool some people use when they want to direct their thoughts in a certain direction or just to help make things clearer. I put this board together right after my diagnosis. I'm sure it looks totally random to anyone but me, but the main theme is down at the bottom right. " Keep Calm and Carry On." This is something I need to remind myself daily, sometimes more than others but everyday.
Last night I got to experience the first of some side effects of the chemo. I won't go into detail but let's just say they could be worse and they are manageable and once I got that into my little pea brain I was alot better. Anyway of course this is me, and if I'm going to get a side effect it's NOT going to be on the list of 1000 possible side effects . What was happening made sense to me but I couldn't find this particular sympton anywhere, so I decided to " Keep Calm and Carry On" until this AM and see how things were.
Well I still had the symptom this AM but I made it through the night without detriment so I figured I was OK. To be on the safe side I decided to call the oncologist's office (I know it's Saturday) and just ask if this was something they'd dealt with before and if there was anything I should be doing.
Well apparently the oncologist's office dosen't deal with patients on the weekend as I was instructed to call my primary care physician if I had any problems and if I was running a temperature to go to the ER. So I called my family doc and sure enough it is a side effect of the chemo and he explained it all to me and told me not to worry it was OK and to call him again if I needed him this weekend and to check in with him on Monday to let him know how it was going. Now that's a Dr.!
I suppose I could rant now about the oncologist and them not having any coverage on the weekends but why waste my time? It's their practice they can do what they want and I guess when you're the only game in town you can really do what you want.
Besides, I'm going to follow my plan of Keep Calm and Carry On.

Thursday, June 17, 2010

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".

Tuesday, June 15, 2010

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.

Monday, June 14, 2010

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.

Saturday, June 12, 2010

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.

Friday, June 4, 2010

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.

Tuesday, June 1, 2010

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.