Wednesday, November 26, 2008

Okay...here's the "skinny" as I know it

An old friend pointed out to me that I haven't been too clear in this blog about what physically is going on with me (the graphic accounts of my toilet habits notwithstanding)...she asked questions that I realize I have brushed on, but haven't spelled out.

They operated on me and removed my right ovary, which had a four centimeter growth on it that came back positive...it is ovarian cancer. They also repaired my hernia, for which I am very grateful...and they had to peel my uterus off a section of my bowel..to which it was stuck. They opted to leave my uterus and my left ovary because they didn't look bad and because they didn't want to prolong my time under anaesthesia. They had to hack through a bit of scar tissue (from my previous gastric by-pass) and that slowed them down.

They also removed as much of my omentum (the lining of your abdomen) as they could as it was dotted with spots of cancer. Apparently there are still a whole bunch of spots of cancer, dotted all over different organs/bowels, etc. and that is what they plan to get rid of through the chemo treatments.

When I refer to "the tumor" still producing fluid in my abdomen, it's not a single tumor...it's a network of them apparently.

So...they will send me for chemo...eight rounds of it...one round every three weeks, each round will last eight hours.

I still have to make the decision as to whether or not I get into the trial of the new treatment...or stick to the existing protocal of two drugs. Even if I get accepted in the trial, I may not get the third medication...I could end up in the group of people in the study who don't get the drug. It's all kind of confusing and I almost wish they hadn't even brought it up to us! Sandy and I are going to sit down and do a list of the Pros and Cons to both sides and see what we come up with.

A big factor to vote NO on getting into the trial is the fact that I would not have the option of having further surgery if I go that route. Dr. Lachance said that what he could do is check my cancer level (CA125 test) is after a few rounds of chemo. If it is coming down, they cuold operate again, removing the other ovary and uterus and also cleaning up what they could of the little tumors sprinkled around inside. I like having that option, even though I don't look forward to another stay in the hospital and another big surgery.

Oh...and on a different note. We got a notice yesterday from the state that we have to get married! Sandy and I registered as "Domestic Partners" years ago...in that way Sandy was eligible to have my insurance coverage and be able to get my pension should I die. That was a big relief to us...knowing that she would be taken care of with my retirement money.

Now, with the new marriage law in the state, we have one year to marry...because after that the domestic partnership benefits will end!

Can you imagine that? First we can't marry, now we better hurry up and get married!

Sandy was trying to avoid another ceremony...we've had two "non legal" ceremonies in Washington DC at different marches held in the 80's and last Columbus Day we had a very private civil union ceremony, done by our old neighbor Brige, who is a Justice of the Peace. We had hoped that would be the end of it. But no...now we HAVE TO GET MARRIED!

Sandy has already found a woman locally who advertises that she does civil unions...so I guess when I'm feeling better, we'll go see her and get the job done. I'm not planning on dying...but it will give me peace of mind should, God forbid, I get hit by an 18 wheeler as I drive to work!

So, I said I wouldn't post again...and look at me...here I am, back again!

Oh, and I figured out the reason for the yucky feeling is more associated with pain and the fact I'm trying to get off the dilaudid that they gave me. I'm trying to switch to tylenol...and it's taking a little bit to work through the pain. It hits me and makes my system crunch down....makes me doze and feel yucky. So I will work on staying on top of it...it is diminishing daily so I should be able to do this with the least amount of muss and fuss.

I hope that I have explained things so people can understand what's going on...sorry I hadn't spelled it out before. I wrote a lot while I was in the hospital and I was kind of confused at the time.


Nighty night!

Sorry about that

Sorry if I got some people bummed yesterday with my posting about everyone forgetting me in the coming months! That isn't what I meant to say...and I don't think that everyone will forget me...I guess I was just having that thought and there's little disconnect betweem my thoughts and this keyboard...never has been.

Yesterday was a semi rough day and I couldn't figure out why...until this AM. I felt drained most of the day, napped frequently and just felt low-grade yucky.

Sandy took me up at 8pm for a shower...which I didn't want to take...I was freezing and just wanted to get in bed. Well, the shower made me feel better and I got in bed just in time for to watch the Huskies whup BYU on our new flat screen HDTV! What a difference over the old, small screen tv we had up there...I could actually read the score posted at the top of the screen!

Anyway, dozed thru the second half and put the lites out at the end of the game, happy they won. I got up a few times in the night, nothing new, but it seemed I was peeing a lot more than usual.

This AM I couldn't help but notice that my butt was decidedly smaller...and my legs too! That was the water weight coming off. I mean there is a huge difference today from yesterday. I was also able to ditch a bunch of pillows and lie pretty much flat in the bed AND ON MY LEFT SIDE!!!! I lay that way and slept for a few hours! I didn't get up until 11:00! WOW!

This is the first time I've been able to lie on something else than my back...and to not have to be propped up is HUGE! My back has been getting really tired and also getting some pressure points from lying on it so much. What a relief to know that I can roll to my left and take some pressure off my back. I tried the right side too...but that spot still hurts to much to call it being comfortable on my right side.

Today again I feel chilly and tired...just lying in the new, beautiful leather recliner...typing away. Now I know that when I'm feeling yucky like this it's most likely because posititive changes are taking place that I am not yet aware. (I think that last sentence is grammatically incorrect...but don't have the desire to tinker with it right now).

Another milestone...I was lying in the recliner...all chilly and tired and I heard the mail lady pull up. I got it in my head to get up and go get the mail. Now, we have a semi long driveway and it gets a bit steep as you get closer to the road...I made it up there...a vision, I'm sure, in my big fluffy pink pants, blue slipper and navy blue oversized fleecey Martha's Vineyard top. Anyway, I made it up to the box...held on as I opened it, gathered up all the mail (huge armload) and made my way back to the house. I was winded...and a little dizzy, but I sat in the sun by the koi pond, slowing my breathing and relaxing, watching my fishies. Then it was time to get up and back into the house.

I have been wanting to do that since I was in the hospital. I feel justified relaxing now...I got my exercise for the day. Tomorrow I will walk up and down the stairs to the second floor three times...that will be my exercise for Turkey Day. I don't walk as much now as I did in the hospital. There I had a nice big route I could take through two wards...here I have just the kitchen, dining room and living room to stroll through. So the walk to the mailbox will be my goal from now on on days when the mail gets delivered.

Here's hoping today's activities force even more water out of me...I'd love to be able to get down another 20 pounds before I start chemo! I know I can't get rid of all of it because the tumors continue to make fluid in my abdomen..but if I can get the legs, feet and butt under control...good for me!

Don't know if I'll be posting again tonight or tomorrow...so, HAPPY THANKSGIVING everyone! I hope you all have a wonderful time with family and friends. Shed the stress for once, relax and enjoy!

Tuesday, November 25, 2008

When it rains....

Had a nice, long chat with Marko the Magnificent last night. It was so good to hear his voice, we haven't talked in months! He was all worried about me, of course, and I hope I was able to reassure him a bit.

Last night I was home alone with doggies for the first time since this whole thing began. Jean had been coming and staying with me on nights when Sandy works. The night started out quietly...but in the wee hours of the morning I was dreaming and in my dream I heard a steady, rhythmical sound...tick tick tick tick...

I thought it was something like the "Telltale Heart" as I gradually realized that I was no longer asleep...I was awake. So I moved my head a little thinking it was some kind of fluid sound in my ear, which is a little blocked.

Then I realized it wasn't my ear....it was something DRIPPING in the bedroom. I got up and prowled around...AHA! Water was dripping from the air conditioning duct in the ceiling. The sound I was hearing was the drops hitting the chaise that is under the duct. It was then that I heard the WIND...unbelievably strong and the rain...that sounded like someone had a fire hose trained on the roof over the bedroom. It was coming down that hard.

I got a towel from the linen closet and put it on the chaise to absorb the water and muffle the sound of the drip.

So, when Sandy came dragging her butt home, exhausted, in the morning I was able to tell her that not only can I take care of myself when left home alone, I could also "handle" this household emergency. I was feeling pretty damned smug I'll tell you.

Jean came up early this morning to be here when the furniture truck from Gorin's came. They delivered the new leather recliners at around noon time and I promptly collapsed in one and took a two hour nap. It felt so good.

I am tired today...dunno if it's from the excitement in the night or what. So, I'm laying low and resting.

Trudy, my old neighbor from Sunrise Street, called today to see if Sandy and I were going to get married, now that it's legal. I had to tell her the news about me, which she took quite hard. Trudy is my pal and I feel badly that I haven't told her before today. I actually had my hand on the phone and had started to dial her number yesterday, to tell her, then chickened out. Well..it was good she called today..we had a nice chat and finished with a quasi plan that she will come here and cook goulash for me sometime. She is in her eighties and is a gourmet cook. Unfortunately, Sandy doesn't appreciate Trudy's kind of cooking (she would if she gave it a chance). I miss Trudy...we used to go sing together at the Senior Center...and we would always have a good laugh. She was going there today so I asked her to send my best to all my "old" pals.

A lot of folks want to come and see me now and it's almost overwhelming. Sandy and I were talking that it would be nice if people spread it out over the next year or so...I'm sure there will be times in the future months when it would mean SO MUCH to me to hear from someone, have a visit...and no one will be around. That's human nature isn't it? Something happens, everyone rushes in and then life goes back to "normal". I will be the forgotten one soon enough...and I understand that. It is human nature and I've done it myself. My challenge will be to keep people engaged for those times down the road when I really need that boost.

I do get energy from being with people. I always have...I'm an extrovert, if you haven't noticed. I don't need attention 100% of the time, but I do need to have people around me with perhaps a higher frequency rate than most others do. I just don't want people to get burned out on Ann Miller and there I am sitting in a big house in Griswold, boohooing becauese I'm all on my own.

I don't think that's going to happen...but I'm just putting it out there. Pace yourselves people...for my sake!

Enough of the "heavy duty" thoughts.

GO HUSKIES!!!!!!

Love you all.....

Monday, November 24, 2008

Just another Manic Monday....NOT!!

Quiet day for the most part. I slept in...after a somewhat restless night last night...dunno why, but I couldn't get comfy for a few hours between 1-5am. Anyway, I stayed in bed until about 10.

I took a shower and was able to do most stuff for myself, except for drying my legs/feet and putting lotion on them and on my back! I got myself dressed, all except my right sock and I was good to go downstairs.

Had my favorite, protein drink, for breakfast and then I dozed in the chair while listening to Spa 73 on my Sirius satellite radio. Very peaceful, relaxing music and so much cheaper than running the television on the "Soundscapes" channel...going green by saving electricity!

Sandy was working in the yard, putting the outdoor furniture away and getting the patio table secured for the winter. She also cleaned out more leaves from around the house and vacuumed them up the tractor.

I saw her out there talking to someone and I thought it was Carol...I stuck my head out to say hi and was surprised that it WASN'T Carol. It was a lady who lives down on Bergendahl...the street at the end of our street. She has a Jack Russell and wanted to see if it would be possible to have a "play date" with Truman and Bubbles!

I don't think so. Sandy set her straight and also had to caution her about sticking her hand down to try to pet Bubble through the fence! She has a friendly Jack Russell...one who likes people and other dogs. We don't have any of those kind of Jack Russells at this house!

Sandy made me a great ham and swiss on pumpernickel sandwich...the bread is from Colchester bakery. What a difference it makes when the bread is AWESOME! I polished that off fairly quickly, along with a nice fat kosher dill spear. I couldn't help but think about how it was a week ago...when I sat at that dining room table with Lynne and Jean and had two spoonfuls of soup and bite of bread. BIG DIFFERENCE!

Linda and Lynne came at 2:30 and we had a wonderful visit. They delivered a gift from Diane Secchiaroli, a nice big coffee mug that says "I get by with a little help from my friends" on it. How appropriate. I love the fact that it's a ceramic mug, but it has a plastic "coffee to go" top...so I can use it as a commuter mug. I'm going to add that to my chemo bag.

Linda made me a nice little splint pillow. I've been using one of my Ikea pillows folded over, but it's too big and also really doesn't provide the protection I need. I use it to brace my stomach when I cough, go to the toidy, and to protect myself when Bubbie wants to jump on me. This pillow is just the right size...and it has a removable cover so it can be washed. In fact, Linda made me quite a few different covers, with different holiday designs on it...including snow; Christmas, Valentine's and a flag motif! I'll be stying with my pillow for quite some time to come!

I can see myself using the pillow for awhile longer now and if I have further surgery I'll need it again. When I no longer need a slint...it will look nice on one of those new recliners. Linda told me to let her know what color I wanted and she would make me another cover.

Linda is also going to knit me a hat. I have to let Marie know...she was asking me if anyone else was making a hat. Linda has black yarn, so she's going to make a black beret style hat for me to wear with my uniform jacket.

I had no idea my pals were so talented. I told them this is because I've been running my big mouth for years about all my talents and haven't listened to what their talents are! Well...that's going to change...from now on I promise to devote at least 2% of my time finding out about other people..instead of making it all about me! HA HA!!! We'll see how that goes!

On the news they were actually having a discussion about pushing up the Inaugural Day so Obama can get started sooner. Amazing. Well..so far I'm liking what he's been doing..and I guess Wall Street is liking the latest stuff about his economic team. I haven't checked my account lately to see how much I've lost...I know that's the smartest way to handle these tough times, I'm just hoping that there is SOMETHING left there at the end of the day!

Stew and corn bread for dinner...can't believe I'm looking forward to eating. For quite awhile I actually thought I wouldn't care about eating ever again. How foolish of me! How glad I am that all the "normal" things are coming back into my life.

Rain tonight and tomorrow...the ice is SO THICK on my koi pond...the poor fishies must be in shock. One minute it's 60 degrees and the next minute the pond is just about frozen over! Sandy is going to get a floating heater for them....that should make them happy.

And we all know how important it is to have happy fish!

Stay warm and dry everyone!

Sunday, November 23, 2008

Sunday, quiet Sunday

Well..I survived the gang coming to see me yesterday. First Jean showed up, in case I needed help getting the pups under control when Maria and Co. arrived. Sandy had taken the two Russells with her grocery shopping so that wasn't a concern.

Maria, Karin and Cathy come in, bearing gifts of lovely soaps, chocolate truffles, books, books on tape and a great Red Sox Santa Hat Maria got for me. I modeled the hat, exclaimed over the books, sniffed the soaps and even ate a truffle! Delish!

We had a great time chatting. The girls had never seen the house and it was funny listening to Maria give the tour through the place. They were up in the closet for so long I started to get suspicious! I thought they were pawing through my "dainties" but Maria assures me they were admiring our Cold Water Creek clothing selection. I'll have to trust her I guess.

While they were here the door bell rings and in walks Charmine and Miss Pat...who were heading to shop at Lisbon Landing and wanted to drop in. Charmine brought the coffee she picked up for me at Trader Joe's (decaff Italian....yum!) and she brought me some great ginger chews...I love ginger and I hadn't even thought of it...I'm putting that in my "chemo bag" in case of nausea. Ginger works wonders for me.

Charmine also brought me one of those beautiful Jockey blankets that she used to sell. It is so soft and comforting...that's going into my chemo bag too. I'll bundle up with that while I get my treatments. WONDERFUL!

Honest to Pete, it felt like Christmas yesterday!

After everyone left I went up and took a shower. I was able to do more to take care of myself...still need Sandy to dry my legs and feet and then she puts lotion all over me...it feels so darned good! I got into my jammies....I'm starting to fit into smaller clothing again...and went downstairs.

Jean had made a wonderful meal of hamburg, mashed potatoes (my fav) with gravy and I finished off the last of my winter squash. I had a glass of V8 to go with all of it...so that was a very well-balanced, nutitrious meal.

After supper I watched some taped episodes of Real Housewives of Atlanta...I watch that show in horrified fascination...it's like watching a train wreck...and then I crashed! I went up to bed and got in there at around 9pm!

I slept really, really good...until the hours between 3-5 which are restless ones for me for some reason...it didn't matter, I would wake up, take a sip of drink for my parched mouth and then would have no trouble going back to sleep.

The doggies stayed with me in the bed. I thought that if they were in with Jean, they would get up every time I went to the bathroom...which I do frequently throughout the night. I was right...with me, they just snuggle deeper into the covers when I get up and grumble a bit when I get back in...but they don't get up.

They stayed in bed until 6am and then I told Jean..."let me let them out...see how it goes." It went well..I was able to get downstairs, let them out, and let them back in. Jean got up because that's when she does get up anyway....so she stayed downstairs and I went back to bed. The doggies joined me in few minutes and we slept until Sandy came home to feed them.

Monday night I will be here on my own. No Jean...No Sandy. I think I will be just fine. Last night showed me I can do it....actually I was pretty sure I could do it...it showed Jean and Sandy I can do it. That's who I have to convince, after all!

Today I'm taking it easy...going to watch the Patriots (hopefully kicking Miami's ass) and then the Huskies are playign USF on ESPN tonight....so a day of football and peace and quiet.

Yesterday Cathy brought me books on tape...Amy Sedaris...who is hysterical...I loved her on "Strangers with Candy"...I didn't know that she had written a book...can't wait to hear it. The other thing is...I didn't realize that she and David Sedaris are related! Here I am, reading David Sedaris while I'm perched on the throne...spending long leisurely minutes in the bathroom...laughing as I poop. David Sedaris is so hysterically funny and it really was something to find out that Amy is his sister. Sure, he mentioned his sisters and their names, but I never made the connection. Do yourselves a favor and pick up something by David...anything. You will love it. Right now I'm reading, "When You're Engulfed in Flames."

Mark just called..thought Sandy was going to be working in the yard today and wanted to come over and help. What a sweetheart! He's going to go all "chainsaw massacre" in our backyard and cut down those stupid cedar trees that are in all the wrong places. But, Sandy is sleeping so it will have to wait for another day. We are so lucky to have neighbors like Mark and Carol...and they have introduced us to other folks in the neighborhood...nice group of people.

Okay..that's enough for now...think I'll go read another chapter in the book as I try my luck on the throne.

GO PATS!!!! GO HUSKIES!!

Didnt' the Huskies make URI look like a high shcool team yesterday? It was a thing of beauty and difficult to watch all at the same time.

Good bye Moses Margolick, God rest your soul.