Thursday, September 30, 2010

Breakfast For Lunch

So breakfast is a little late....but I got a lot done this morning. Well a lot for me that is. I was up until 4:25 am....just awake. Watched a good movie on the laptop from Netflix, "Tell No One".

The good thing about the laptop (among many things) that I can recline in bed with the laptop propped against the wall on it's side and doze off if I want...Netflix will let me watch it again if I fall asleep. Although there was no danger of dozing off last night. Last night was actually a big TV/movie night. I was having a hard time breathing, so I was plopped in the couch with the O2 tank for a while. I watched episode 2 of "The Big C". It's so strange to watch someone deal with cancer and not tell anyone. I did that for a short time....but now I tell everyone. Then I watched "Criminal Minds". Finally, I moved to bed and watched the movie.

Got a call about a medical bill at 8:46 am. So four hours of sleep. I explained the whole insurance situation and it's Tuesday resolution. The woman asked for the name of the person I spoke with at Blue Cross. I told her I didn't remember, but all she needed to do was resubmit the bills. You see, after fourteen years working on billing medical equipment, I know how this works. She said she needed the name of the person and a reason to resubmit. I patiently explained that I had just given her the reason. We went through it two more times before I lost my temper and told her that I knew that wasn't necessary because of my work experience. I also explained that they needed to get a move on because Blue Cross has a 90 day billing window and they better be in it. I further explained that I was in active chemotherapy and had only fallen asleep at 4:25 and now I was hanging up on her and going back to sleep.

And I hung up. She has called back twice, but I am not answering. Re-tahd!

But of course there was no going back to sleep, so I got up and drove Jen to work. I still have no car due to another stupid insurance problem that I almost have worked out.

On the way back, I stopped at Good Health in Hanover to get some rose oil for my homemade body scrub. I wanted rose absolute, but they only had rose otto. Then onto Home Depot where some jerk I used to date works. He used to be vice-president of information systems for a major non-profit in Boston. After he retired he couldn't sit still and he was always in Home Depot anyway. He was always talking to and advising I guess the job was a natural fit. I wanted top soil for my planting this weekend and I knew in my present state I couldn't lift the bags. So I walked up to him and said "I need some bags of dirt. I am back in chemo and can't lift them." We walked down to the garden center and he loaded up the bags, then checked me out and loaded the car. The boys will be by later to unload. We really didn't talk otherwise. He never knows what to say to me. Not that I make it easy, I am a bitch. We were a stupid thing a really long time ago. Back then, I still hadn't gotten the fact that I need to be with someone who is smarter than I am. Just a little, the challenge is important to me. I was way smarter in that relationship. Besides that.....he was an Army vet...what was I thinking?

As I left I remembered that besides the rose oil, I needed grape seed oil as well. There is another health food store across from Home Depot so I popped in there. They had the rose abolute, so it was a good stop.

I made my bed, cleaned my room, called Kate, my nurse practitioner (who let me off the hook on drinking the icky tomato juice - turns out there is too much sodium in that) made French toast from stale bread (with 2 eggs at 75 mg potassium each) and powdered sugar on top, sectioned an orange (326 mg potassium), poured a glass of whole milk (325 mg of potassium), washed my dishes, unloaded the dishwasher, cleaned the kitchen, made my body smells fantastic!

After I clean up breakfast, I will head up the hill for my last day of cleaning out the old house.

Still bummed out that I couldn't be in DC for this -
Army Wife Carren Ziegenfuss Announced as the Winner of and's Spouse of the Year Award 2010

Wednesday, September 29, 2010

Does This Banana Count?

I swear it's in there with it's approximately 422 mg of potassium.

Lasix & Potassium - how Did Those M&Ms Get In There

So Dr. Miller says that I have to take stuff with extra potassium when on Lasix - 40 mg once a day. I am supposed to take it in the morning....but between being awake until 3 am.....moving very slowly....and having to run several was 3 pm before I took it.

He suggested tomato know I have no poker face. He said "What about Gatorade?" Well that sounded ok. but guess what? Gatorade had 30 mg of potassium per serving...and tomato juice has 900 mg. Seriously, 900. I read all the labels. Smart water. V-8 Splash. V-8 Infusion. All the sports drinks and enhanced waters.

So I guess I am stuck drinking the stupid tomato juice. With my bananas, which work just as well when topped with ice cream. And no....I don't know how those M&Ms got there.

I've Got a Lot To Do Today

And I am being thwarted...but alternately helped by drugs. Energy from steroids....and leashed to the bathroom by lasix (was that TMI, well TFB).

I have to clear out the last of the stuff in my old house by Friday. There is no running water there, which makes flushing a pioneer kinda challenge.

I have to be organized or when the boys show up I will not use them to their full potential. When they show there is talking and fooling around and chaos and demands for lunch...and that's just from me.

Just in case the favorite Naval Consort stops by this're a jerk.

I told the Armorer that I believe I am best served in such times by an imperious attitude....fortunately, that's no problem for me.

Tuesday, September 28, 2010

Jen's XM Saves The Day!!!!

Where to start........

I still have Fred Flinstone's feet and my doctor is too, buddy!!!! LOL!

Since I couldn't go to Kansas. Since I already felt like shit. Since I did want to get in there and have them do all their routine blood work and check my kidney function........I called and asked if I could start the 3rd cycle two days early.

Yeah, I know, I kicked up an awful fuss about not coming back in a minute sooner than absolutely necessary....and now I ask to come back two days early.

I am difficult.
I left the Nook enjoying a perfect, sunny, early fall day.
Jen's front yard is in the foreground. I have to plant some mums this weekend! No excuses. At the top of the pic if the absolutely perfect front yard of Jen's neighbor. Her grass is the stuff of the dreams of every member of the Irish diaspora, thick and green. You see it and want to kick your shoes off and walk on it. Her flower beds are colorful and would make Martha Stewart jealous.

So I had to drive to Wisstah to straighten out a crazy problem with my health insurance. There were beautiful leaves in every color, this was the best pic I could get considering I was speeding and it was raining.

So I was late.

I had Copley Square on my mind because this morning I read about cider donuts from Hamilton Farm being available at the farmer's market they have on Tuesdays and Fridays on the Trinity Church plaza. So as I zipped off of the Pike and got dumped on Boylston Street....there it was.....the great white whale of the Back Bay.....a big ass LEGAL parking spot. Que the choir!!!! I didn't even need to use any of my rusty parallel parking skills. I grabbed some cash and ran to the Hamilton Farms tent.

Four boxes of a half dozen mixed cider donuts and two whoopie pies later I was zipping over to the valet parking of the North building. If you are out of the valet within a half hour, it's free. My plan was to pop in, brandish donuts as a mea culpa for being extraordinarily late and further messing up their schedules, have them draw blood and leave for an hour.

They can't administer my infusion until the blood test results come back and that's an hour minimum.

Buzz! Buzz! I was on my way to Charlestown with my contraband ciggies. Someone near and dear got me three cartons of my mother's brand at an exchange. It's a funny thing - I don't want my mother to smoke....but the deal is so unbelievable, I can't help but buy them. I was worried though. My mother smokes Salem Light 100s, I double checked with my Dad since I have not purchased them in a million years. So that was the order I relayed. He got me Salem Gold 100s. He said that was what the clerk directed him to when he made his requests. I thought, "Ok, we effed that up. Maybe I will just find someone else who smokes these and pretend I forgot." But I had to know. So I called RJ Reynolds. An automated voice asked if I smoked and was old enough or if I didn't smoke, but was still old enough.....B. I was asked to state my date of birth and did so. Then a human.....but clearly a human with a script. She was focused on checking the boxes. Did I smoke? No, this was a question about buying cigs for my mother. My age? I repeated my date of birth. I was patient, I know the "Smoke Nazis" are making all these rules. Taking away any judgement calls on behalf of the RJ Reynolds employees. I don't sound remotely like a teenager. But the next question...that's what tickled my funny bone.

"OK, and your mother's date of birth?"

I laughed out loud! I told her and was nice enough not to point out that if I am 49, there is no way MY MOTHER can be underage.

Anyway, it turns out the crazy anti-smoking people made them stop using the word "Light" on the Salems. Now it's "Gold" but it's the exact same product. So I am alllllll good.

So I present my mother with three cartons of cancer sticks, a package of a half dozen cider donuts and a whoopie pie. My Dad, who is not quite a half a shoe size bigger than me (although not this week, huh!!!!) gave me some sneakers he finds too squeaky.

Then it was back to NEMC. I return to my infusion room and when I hesitate at the door, a voice says, "That's your room." I turn around and Kate my NP is behind the counter. "You recognize me with my big moon face?" I puff my cheeks out. It's quite unnecessary......did I mention I gained 17 kilos in less than a week????? And my blood pressure which tends to run low was 150 over 92?


So they start pushing the dexamethasone. They order the Velcade to push immediately after. They page Dr. Miller, he wants to see me.

So....Kate and Dr. Miller and I caucus. questions on pain and swelling and timelines. He orders a chest X-Ray and an echo. He prescribes Lasix. I ask if that means I can't sneak down to DC. You see I wanted to go and applaud in person when Carren received her award - "Army Wife Carren Ziegenfuss Announced as the Winner of and's Spouse of the Year Award 2010". I am so thrilled about this, that I once I realized that I would actually be available on Thursday the 30th.....I was trying to get there for the official ceremony.

Kate was incredulous! Drive to DC? I told Kate that I had done it several times, it's only 8 hours and I had a pit stop planned.

I wheedled a little - "All the other Milbloggers are going!" Kate answered "Well I am not the other Milblogger's nurse practitioner!" We laughed. I mentioned to Dr. Miller that my company doesn't just have O2....and compression stockings....we had adult diapers too!

So the echo was good, the kidney function was good. If my kidneys are good....well everything else I can deal with.

Tomorrow Lasix and apparently I am tethered to the bathroom for the day.

So finally I was in Jen's car, wending my way home. I was car-dancing to my new favorite song....Katy Perry's "Teenage Dream". Then I hit the button for "70s on 7" and they were playing one of my favorites! The DeFranco Family "HeartBeat" from 1973.

My friends and I would dance to that at the St. Francis de Sales CYO dances.
Happy memories.

5 Years Ago

I started blogging.

How Do You Think I Will Look....

...with blue and violet lowlights?
Recently I had my hair trimmed and the stylist asked about my hair coloring. It was obvious that my hair is colored (it's really snow white). So I was explaining that I am trying different colors since soon enough it may all fall out. If this current chemo plan works, it will be followed by some really toxic stuff that will make my hair fall out. So why not go for it! Right now it's very dark brown, close to the color of my childhood. I told her I was thinking about getting a perm. Hey! Why not?
But I have to tell you, right now it's Katy Perry's hair that is appealing to me.

I have been enjoying this's just fun!

Sunday, September 26, 2010


***UPDATE*** I am ready for MIDRATs! It is wild outside. The wind is really picking up and the sky is dark. Of course, we have all the windows open and I am bundled up in a I love living on the Atlantic Ocean.
OK, still limping a little, so nothing major will be accomplished today. I am researching something for an impatient friend. But in between I am watching "How-To" videos about making your own body scrubs. When I think of all the money I have spent on this stuff when I could have been whisking together my own for a fraction of the cost. Not to mention, custom blended to smell, not "close" to what I want, but "exactly" what I want.....sigh.

Anyway, I am going to laze around until it's time for MIDRATs

"From the Budget to Tet ... On Midrats"

Saturday, September 25, 2010

Fisher House Boston Fundraiser - Joe Nichols

Alright - full disclosure. You know I am not a country music fan. I mean, yeah sure, I like something that is great no matter what the I think Patsy Cline is phenomenal. And I have to laugh when I listen to the brash lyrics of Toby Keith or Big & Rich. But otherwise.....

You know what happens when you play a country music song backwards? Yeah.

So, why am I planning on going to see Joe Nichols at the Boston Hard Rock Cafe on Wednesday night?

Easy! Because it's a fundraiser for Fisher House Boston!

So this wasn't a tough decision when my goddaughter Debbie asked me to go....she listen to WKLB & they are helping out with this.
So you should come and join me, this Wednesday, September 29th at 7 pm..

Or buy a ticket.

Or send some money to this address!

The Fisher House program is a unique private-public partnership that supports America's military in their time of need. The program recognizes the special sacrifices of our men and women in uniform and the hardships of military service by meeting a humanitarian need beyond that normally provided by the Departments of Defense and Veterans Affairs.
Because members of the military and their families are stationed worldwide and must often travel great distances for specialized medical care, Fisher House Foundation donates "comfort homes," built on the grounds of major military and VA medical centers. These homes enable family members to be close to a loved one at the most stressful times - during the hospitalization for an unexpected illness, disease, or injury.

Friday, September 24, 2010

1 Step Forward....1,479 Miles Back

So, I still have Fred Flinstone's feet. Crap. I am uncomfortable, slow and ok....the tiniest bit scared to be under the weather this far from home.

I was supposed to fly to Kansas this morning. I postponed it in hopes that this problem would go away. But, no luck. Instead I will head back to know, Boston, where I am a burden to Jennifer.

She made a remark recently to Grace about how she gets the 14 crazy aggressive chemo days and as soon as I feel I go. Other people get the happy, drug-free days. Now things are going wrong and I am getting back there as fast as I can.

So as soon as my elephantitis subsides, I will take Jen out to dinner in appreciation. Least I can me. I owe her more than I could ever repay.

So Fred Flintstone Called.....

....he wanted his feet back.

Yesterday I started to slow down and my right foot started to hurt. Then I looked.......IT WAS LIKE A BALLOON!!!! The left was slightly swollen.

LOL! my flight to Kansas has been delayed a day.

This morning the foot is smaller..

Thursday, September 23, 2010

Stunned Silence

Yeah, you didn't know that was possible, didja?

Ok, you know I didn't think this chemo thing was going to work, right? My logic is as follows - the best they have to offer is Revlimid w/ld dex. They want to knock the number down and have it stay down long enough to do an auto stem cell transplant. So in October of '08 I was 5850 and we began Rev/ld dex. After 2 cycles I was knocked down to 3310. But then, when I was off for just two extra weeks it climbed back up to 4164. While the next two cycles knocked it back down, it never when that low again and it demonstrated that it wouldn't stay down.

Their answer (the medical team) was too add a 3rd drug. This drug would be more harsh than Rev/dex alone and it had a lower chance of success.

So I wasn't holding my breath, as explained here.

The first cycle this time got off to a less than awesome start. The Revlimid wasn't ready, so it was only half a try with the Velcade.

My number on June 1st had climbed back up to 5060. We started Velcade/dex on August 9th. There was some mistake on the tests and they tested my IgG. that is the most common multiple myeloma. So one would expect my IgG to be low - because my
IgA is overwhelming it. And it was. Very low, like my red and white blood cell count and my platelet count. So I have no other starting point except for the 5060.

When I came home to start the 2nd cycle on September 7th, they tested again. I was not expecting anything great - less effective drug; just one cycle, blah, blah.

So I called them with a few questions. First off - I know I can't drink during the 14 drug days....what about the 14 drug free ones? No, no drinking period. Ok, next, since last Saturday my hands have felt like I have a bad sunburn. I get that, I know it's the neuropathy. However, I went to sit by the pool and the sun actually stung. Am I supposed to stay out of the sun with these drugs? No, just put on sunblock and if it hurts....stop it, lol! What was the IgA number?


One cycle.

Just Velcade and low dose dexamethasone.


"Hello? Still there?" By the way, I had some of the cookies from your last visit. they were great, thanks!"

All the breath came out of my body in this stunned shaky laugh.

Now, this is not to say, I am all set. Knocking it down is only half of what we want. We need it to drop and STAY.

But still......

So I've been thinking a lot.....while I There are several decisions I have made in the last few months that were completely colored by my belief that this had no chance.

Looking at it now with this new piece of info...........I wouldn't chance a thing. I am not ever going back to the way things were. I like my reordered priorities.

Monday, September 20, 2010

Stuck At BWI

It was already a long two hour and twenty minute layover.....

Then a 1:50 pm boarding became 3 pm

Now it's 3:30 pm.

What did I pack in this carry-on? Lead? LOL!

I know it's just how weak I am. Tonight is the last Revlimid pill. I am so eager to be free. This month was much more difficult than last month. I understand. I get it. I know I have to do it.

But I am so ready to see what tomorrow and the next brings.

My feet have mild pains, like a shock or a quick stick with a needle. My hands feel as though they are severely sunburnt. I know that if I hadn't been flying so much this last year I would be so befuddled. But moving through airports at this point is muscle memory. So, no brain power needed!

I am so hoping for a "bounce-back". I want to be better tomorrow and better still the day after. But I will not set stringent goals. I made myself nearly crazy doing that after the first cycle. No, I am going to hope for progress, but I am going to be patient with the one step forward, two steps back aspect.

This next few days will be about taking it easy.

If I make it out of BWI.....

Saturday, September 18, 2010

New Rule On Sleeping!

I'm just going to sleep when I want to. Why have I been so focused on fitting it into the conventionally accepted time slot?

Grace & Jen & Debbie & my mother went to lunch at Harrison's Roast Beef. I'm very glad we all made it. It was worth the drive to hang and laugh. These are the important things.

Jen & I popped into "My Low Carb Life". We are both still trying to get back on Atkins.

Then on the way home it was a huge struggle not to drop right off in the car. We got in about 5 pm and I thought...."How will I stay awake until 8 or 9?" But really...why? I will just sleep when my body wants me to sleep. As long as my little late night meanderings don't disturb Jen, what's the big deal?

I went to sleep around 5:30 pm. It struck me when I was getting into bed that my spot in Jen's house has the same orientation as the back porch in the cottage. That was the best place to sleep when I was young. Strangely for all the renovations at the cottage, they have never finished the back porch. No one sleeps or naps out there. Too bad. But napping in my room at Jen's is just as pleasant. It made for happy dreams. was a little longer than a nap - I woke at 9 pm. Just in time to make a stinky tuna sandwich (Jen hates onions and protests vehemently when I eat them) and watch "The Count of Monte Christo" with Jen. It was good and we had a good time.

So now, I will make a list of things I have to get done tomorrow and take the Revlimid and head back to bed. The further I get from infusion, the stronger I get.

My visit to Kansas is set! I arrive in "The Sunflower State" on Friday the 25th. And they thought they had a problem with tornadoes...ha!

Slow Burn, LOL!

Lately the steroid hot flashes have woken me up suddenly, but this morning it happened much more gradually. I have been asleep with one brief interruption since about 9 last night, so this is very good. I am going to try to sneak back for an hour or two.

This means I will definitely make lunch with my sister Grace and my mother later today. I am going to put a little oil of bergamot on my ankles. Grace gets really bad hot flashes and has for years. When it happened to me briefly I went to the health food store and asked if they had anything. They suggested oil of bergamot. I was familiar with it as an ingredient in Earl Grey tea....not my fav. I am an Irish Breakfast girl - surprise. Anyway, putting a few drops on your ankle before sleeping is supposed to help. It did help me and I put it away when the problem stopped. I gave some to Grace. It helped but did not solve her problem. She developed a dark spot on her ankles from it. Now that the hot flashes are back, I keep forgetting to use it....surprise! I am forgetting everything.

Anyway, I just put some on and gargled with Listerine. Jen is a little under the weather and with my depressed white blood cell count, I am very nervous.

So, it's back to bed and later....lunch at Harrison's Roast Beef!

Among other things, we will toast that I have only 3 days worth of Revlimid this cycle. Tuesday morning I will be totally drug-free until the 30th! I almost have this months trips worked out. I want to visit friends in Miami & see South Beach. Then a possible train ride to the West Coast of Florida where there will be a lunch with Navy blogger "Chaotic Synaptic Activity - It's Not Random, It's Chaos". Then it's on to Kansas where I will stay with the Master and Mistress of the Castle Argghhh!!!

Friday, September 17, 2010

Charlestown Veterans History Project Fundraiser

Stormy Weather

I paused my vacuuming when I looked up and saw this storm moving in. This is the view from the lighter sky in the south...... The darkening sky straight out to the east......
And the storm approaching from the north.
It's just beautiful!!!! I have to enjoy it while I can. I may be facing eviction proceedings. Before I lived here there was never mayo in the fridge. And certainly not a raw onion! LOL! I made a batch of tuna with mayo and celery and onion. Delicious!!! Jen was yelling at me "When are you eating that stinky tuna? You are stinking up the whole fridge!" It's in a sealed baggie in the veg drawer. So I ate some on toast for breakfast....yum!!!!
So I am a little slow today. I slipped and didn't drink enough water yesterday. Between being a steroid day and going to the gym, I should have consumed much more water. So last night there was insomnia and leg cramps.
But I think today will still be somewhat productive. I have my room done. I have vacuumed the living room and done some other cleaning. I think the steroid will give me a boost to get through more.

September 17, 1787

We the people of the United States, in order to form a more perfect union, establish justice, insure domestic tranquility, provide for the common defense, promote the general welfare, and secure the blessings of liberty to ourselves and our posterity, do ordain and establish this Constitution for the United States of America.

Thursday, September 16, 2010


My tongue is numb.

I don't know what that means.

So Far...So Good!

**3rd UPDATE**And it continues....back from infusion - the last of this cycle! Ran three more errands. Picked up BEAUTIFUL steaks....surprised I am a carnivore? I thought not. Talked to the infusion room nurses about how to tweek my sked next cycle and not spend so much time waiting around for blood work.
I am free until September 30th!!

**2nd update**It's still good! I went to the insurance agent & turned in the paperwork. I made 3 dozen cookies. I am showered & headed up to infusion. Grace called, she has a La-La-La planned for Saturday.....I'M IN!!!!
**UPDATE** - 30 minutes on the treadmill and I am almost woozy...but I am so happy about it! Now I am in work, getting stuff done!**
I slept more than most nights.....I made myself stay in bed until after 6.

I did some organizational stuff. That's the toughest thing lately, getting something done before I forget I wanted it done. Getting my solution implemented before I forget I came up with one.
Bed is made, room is straightened, notes are written.

I snuck into the kitchen and while I made my tea, I assembled the ingredients of a batch of cookie dough so I have something to bring to infusion. I'll wait until Jen wakes to do the noisy mixing, but they are just a few minutes away from being ready to pop in the over.

I am dressed for the gym and I think we'll give that a go.

Then onto some things in the office for work.

Then I should be able to straighten out the last of the car insurance issue and get my giant soccer mom van back on the road. Cadging rides gets old fast!

Two errands on the way to Boston and then infusion by 1 pm.

Plus I think I have come up with a better plan for some of the stuff left in my house. I have to be totally out by October 1st. I am really close. One thing that bums me out though is I appear to have lost the video camera. I can't find it anywhere. I kept telling myself that as I sorted through stuff and cleaned it would have to turn up. But that seems less ans less likely.

Overall, I feel very positive and strangely energetic today. I am going to ask Jen to buy some mums for her walkway out front. She usually has some plantings and somehow this summer that got past us both.....go figure! Anyway, it would be grand if tomorrow's morning steroid brought on a little gardening! I have always loved gardening.

Wednesday, September 15, 2010

Today Was Just Good All Around!

I got stuff done. I feel good.

I ran errands. I am halfway through straightening out my car insurance business.

I worked for a bit....a very little bit, lol.

I am firming up my BlogWorld/Las Vegas/Grand Canyon adventure for October.

I made a pork roast for dinner.

I am going to bed early and hopefully sleep all the way through and tomorrow can be more of the same.

I am almost to the break. Tomorrow is the last infusion for this cycle, then it's just four more days of pills. I am still trying to set up something fun for this break. I'll get something in, don't you worry.

I just had to post how good I feel right now since there has been so much bitching and moaning here lately!

The only thing missing today was some Navy event! Then it would have been perfect.

This Is So Wrong!

I have jury duty scheduled for September 20th. I am hoping to be on a "La-La-La" by then. So I need to postpone until I know I will be here. I went online and got to the resked page. The only days available were actual infusion days....can't do that. Or steroid days.


My apologies to the person I send to the electric chair for jaywalking!

The Warehouse Guys Are Awesome!

So the steroids often give me a constricted feeling in my chest. I get short of breath. I find O2 at 1 l.p.m. or sometimes even a 1/2 l.p.m. helps. It's a drug so I need a script for it. Dr. Miller tried to explain to me that insurance wouldn't cover it. I just smiled and said "It's covered, I've been at this for 14 years. And besides...if it wasn't, I would just take it anyway, lol. I just need the script so it's legal." Imagine thinking after 14 years of working there and 20 years of knowing her, my good friend and boss, Bette would charge me for O2! LOL!

So an occasional dose of oxygen for SOB is no biggie and he wrote the script. It's been a Godsend. After all, wouldn't you rather use a little O2 than take a bunch of aspirin or some other pain killer?

I started off with a "B" cylinder, our smallest. Then a "C". That way I have to change the tank less often. Shawn gave me a different regulator so that if I fall asleep without shutting off the tank, as long as the cannula is out of my nose, the tank doesn't leak. I don't use it that often. In one and a half cycles I have used one "B" and one "C". So yesterday there were no "C" cylinders and I grabbed a "D".

The carpet in this room is very plus and the tank is top heavy because of the special regulator. So I called the office and told Rachael to "caucus with the warehouse staff" for a solution to it tipping over. When it tips over it's harder to reach when I am half asleep and it makes a big clunking sound.

And........Viola! That Mark...he's a smart guy coming up with this sophisticated solution!

Good thing too....I already make enough noise knocking down shelves in the middle of the night.

Now You Got Me In Trouble!

Since no one responded with tea to my Facebook status an hour ago....
Can someone go to Starbucks & pick up a venti vanilla chai tea latte & drop it off to me? My bedroom is in the back....thanks!

I had to sneak out to the kitchen to make my own tea. I opened the tall cupboard, Jen has this shelf that is nothing but various teas. I was getting some Irish was 0530 after allAs I pull the bag from the box.....the whole shelf comes off the support! I am juggling, trying to catch tea....trying to stifle a laugh. Jen has told me on numerous occasions that she can hear me trying to be stealth.. And this is not-so-stealth.

I couldn't get it back in quietly, so she will come down in a few hours and be like "What the...." to the woods shelf and all the tea all over the counter.

I had to go back out and make sure I shut off the stove after I got back in here with my tea. My mind being what it is, I am afraid of giving Jen "Mama Kelley" moments. Right before my grandmother's stroke that placed her in a nursing home she had a few episodes where she would leave the stove on after making a cup of tea. Used to give my Dad a heart attack.

Tuesday, September 14, 2010

Ah...It's Tuesday

I opened my eyes and thought "Is it Saturday? Or only Friday? Will Jen be getting up and going to work?". I picked up the cell phone, my lifeline, my alarm clock, my calendar.....Tuesday.

If it's Tuesday the 14th....we'll be taking steroids! There is a second "pulse" of steroids the day after an infusion.

Revlimid later tonight. That's nightly because it's a derivative of thalidomide, a sedative.

There is oxy for pain, omeprazole for ghastly heartburn brought on by the steroids, and aspirin to keep my platelets from sticking together.

Velcade, steroids, Rev, oxy, aspirin, omeprazole....quite the little cocktail!

Last time I was on Revlimid there were a ton of vitamins and supplements to offset side-effects, but none of that is allowed on liver can only do one thing at a time. Damn lazy liver! I miss all the vitamin B offsetting the drag of the Revlimid

I am sitting here with my cup of tea and my apple bread. I did all this baking during MIDRATs but I wasn't happy with any of the results. The apple bread didn't hold together, but if you heat it and eat it with a fork, it's delicious. I can't encourage you strongly enough to listen to this episode of MIDRATs - "Lone Sailor Awardees" It's the chance to listen to two outstanding veterans in their own words talk about their accomplishments and what they overcame to excel.

Someone disappointed me last night. A long time friend. But did they really or is it the steroids? No matter the cause, it hurt. I was awake at 1 and 2 and close to 4. Now I might as well stay up.

I have a list of things to do each day. I accomplish very few of them, but it's the key to sanity. I have to keep trying.

Last time we did chemo I charted all my blood test results on the Myeloma Manager. It's an app designed for us. I keep forgetting to get the test results and yesterday finally got my hands on the most recent three. These drugs don't just kill off my mutant IgA, they wipe out other stuff and my white blood cell count is at the very low end of I guess we'll clean the half bath again.

I have to get to the registry and straighten out a problem with the plates on my old car. I want to try to get into work and answer some questions. I brought my lounge chair down from the house and I need to scrub it. I have to change my sheets, these hot flashes in the middle of the night are gross.

I need to vote, it's primary day in Massachusetts. I will of course be pulling a Republican ballot. In Massachusetts you get the ballot for the party you are enrolled with, or if you are unenrolled you can choose. I have been a registered Republican since 1979 with no change.

I'll be writing in Attorney Jim McKenna from Millbury in the Attorney General race. He needs 10,000 write-ins to get on the ballot in November. He will be running at that time against Martha Coakley. No matter how you feel about Jim or that twit Martha (whoops, I guess how I feel slipped out), I would urge you to write in Jim's name if you have a Republican ballot. Competition in a democracy is a good thing. It doesn't help on a Democratic ballot, but hey, make yourself feel good if you like and write him in against Martha on that one too. after all, I don't work the elections anymore and it's not my nightmare if you mess with your ballot.

But I will say this about voting today - It's a short ballot - shut off your effing cell phone and pay attention. you want you vote to count? Pay attention. Follow the directions. It can't take more than 5 minutes. If you have questions, ask before you bubble, check, punch. In every precinct and ward there are people who are giving up their day to be there for you.

But most important of a decent hour I will call my friend Dbie and sing "Happy Birthday" Dbie is a Castle Kitten and her friendship is one of the great gifts blogging has brought into my life!

Monday, September 13, 2010

The Fates Conspire Against Me!

This morning started off relatively well. And often the steroids give me a energy boost. So I had plans.

But you know me and plans......

So I get there....early. Ok, only 3 minutes early. But hey! I wasn't late.

First bump in the road? Today will be "pamidronate".


She repeats it twice and then finally says it a bone strengthener. Ahhh! Aredia. Bugger! That takes two hours. But it's better than Zometa. That was a nightmare.

Fine. It is what it is. I explain that I used the valet and they close at 4 and today's nurse, Kathleen is great about it and stands there at the end so she can whip it the IV and I can dash.

I hop in Jen's car and hustle outta Chinatown. There is still time to get things done. What will it be? I have to accomplish SOMETHING!!!!

The radio is talking about a car accident in Pembroke, Exit 12. I wasn't too worried, that more than a half hour away. It was 1555. I shouldn't even be effected, right?

I make great time to a spot between exit 14 and 13 and everything grinds to a halt. I was momentarily sorry that I didn't get off at 14. But how bad could it be? It happened over an hour before. Wouldn't they hurry to clear it before rush hour?

At 1633 I contemplate getting off at exit 13, but everyone was doing that.

Then I sat for 90 minutes. LOL 90 minutes. Suddenly, the large tea I had during infusion seemed like a not-so-good idea, lol. But I made it.

All I can say is thank goodness for Jen's XM radio. I clicked between 70's radio, disco and C-Span. Yeah I know, crazy. But I was singing at the top of my lungs for the first two and yelling epithets at the Ground Zero Imam talking to the Council on Foreign Relations today.

Apparently I am a Catholic extremist. Whatever buddy.

Sunday, September 12, 2010

Page My Doctor & Tell Him To Bring His Boxing Gloves

That was my opening statement as I slid into my chair in the infusion room on Friday.

On Tuesday I was devastated to hear that they wanted to tighten up my chemo schedule. I was on Velcade/dex for 11 days in August with 19 days off. I knew that couldn't be repeated. This month they are adding 14 days of Revlimid which run concurrent with the 11 days of Velcade and dex. I knew that Labor Day interfered with scheduling. Besides, staying off for two long would just make October run into BlogWorld time and that wouldn't help me.

But 10 days just didn't leave me enough time to recover and do anything enjoyable.

I was angry and then upset and then depressed and then angry again.

But Wednesday I pulled my head out of my ass and just decided I would play hardball.

Decision made. I picked up Grace at work and she tried the whole way in....and thanks to the traffic, that was a tell me I had to comply with the doctors. As Grace's daughter Gen pointed out on Facebook, we couldn't be more different. I am not compliant.

I know she is just worried about me messing this up and not getting every benefit from chemo. Plus Grace is very confrontation averse. Do I need to type the words....or do you already know I don't mind confrontation one bit? LOL

Traffic was so bad on routes 28 and 99 that we backtracked to 1A. Just before we turned onto 1A I asked if we could ditch infusion and just head to Beachmont Roast Beef. That got an emphatic "NO!"

So fine, we went to infusion.

I slip into my chair and tell Elizabeth, my infusion nurse......"Page my doctor and tell him to bring his boxing gloves!"

She laughs and asks how I am feeling. Now here I can't just say "Today is a good day." She needs to write down my answers. The troubling tingling & numbness in my feet which could signal the return of the peripheral neuropathy. The strange pain in my scalp that keeps me from brushing my hair the way I like to. The insomnia, mood swings, the memory loss, the confusion, heartburn, chest tightness, shortness of breath the feeling that I am walking around in a lead weight suit like the Mark V Monument. That is probably the most troubling.

Elizabeth finishes her notes and says that both Dr. Miller and Kate the nurse practitioner are nearby and she'll let them know.

Alone, Grace tries to get me to agree to be nice. To be understanding. To tone it down.

Who is she talking to?

So in they come. I have my speech all ready. I will start off by conceding that 19 days was too long. I will sound reasonable. I will talk about how unless there is a compelling medical reason for 10 days, longer is essential to my sanity.

I am barely started....and...BANG! He says 14 days. I laugh out loud. I sound breathless. I am so happy!

Suddenly it doesn't matter that today was a bad stick (I am such a wiener!) and that I am being pumped full of poisons. Kansas is back on! Blogworld is back on! The Grand Canyon is back on! Miami is back on!

Grace and I even laughed later when she wrapped my wrist in the Coban and Grace called it my "Terence bandage". It's funny how devastating that was the first time I made that connection....and now I can roll with it and laugh too!

Faking It Till You Make It

I have many caring friends and neighbors. I should be more grateful....that's a recurring theme here, isn't it? LOL

People see me and say "How are you feeling?" in this cautious tone. I am conflicted. And depending on the mood I have to bite back all kinds of things.

Friday morning I was walking down the front steps.....slowly. I was a little shaky and my little chemo induced depth perception problem makes me nervous on stairs. I was hoping that the woman I saw approaching the house wasn't anyone I knew. No luck.

"Oh hi! Diane! How are you feeling? You look good." the woman called out from the embankment directly across from the end of the drive way. She stopped, she wanted to talk.

I answered with my standard "It's a good day!" and I smiled but I kept right on moving to the car. She mentioned that she missed me at the meeting for election workers. I said I didn't do that anymore and she said that she knew that in this sad tone. Yeah, I'm sad too. I have been an election worker for twenty years or more. But I don't have the stamina or the brain power anymore. And this Tuesday will be a steroid day....imagine the person who tries to use a cell phone or argues about which ballot they get????? Local news trucks would be racing to Kingston to get footage of the blood on the floor!

Anyway, I said I'd see her Tuesday when I was in to vote. That I can manage.

Saturday I woke up on a total high. Friday was such a victory!

First person who asked me....THE QUESTION was my cousin Jeannie who is down the cottage this weekend. I said "It's a good day!" and this time I was completely sincere. I had slept well and gotten up early. I made breakfast, cleaned my room, and was in the middle of some 9/11 tweets. Several of my tweeps (@s_dog; @KathyK55; & @TheLoon ) had put up the names of 9/11 victims and I was retweeting them. I also RT'd @HerbCarmen's timeline for #WhereWereYou. I think that was an extremely good use of Twitter. I steered clear of all the political stuff....and the angry stuff. September 11th should be about remembering the victims and honoring the sacrifices of 1st responders. I also RT''d people who were doing the same with photo's and newsclips.

So it was a good morning. I had a little energy boost from the steroid and I was in a good mood so no one's life was in danger.

Around noon I decided we'd have chicken for dinner and started making a list. I stopped at my old house to grab some stuff that I am giving to the girls in work and some trash to throw in the dumpster. Then it was up to the cottage, Jeannie wanted me to look at a picture on the wall and tell her some of the people in it. It was the Rocky Nook Winter Banquet from 1959. She found our grandparents and I pointed out our grandfather's sister and brother-in-law; our next-door neighbors and our Uncle Walter. On the way back to the car, I saw that same next door neighbor's grandson-in-law....that's how the Nook is. Same question/same answer, but I was slowing down.

I stopped in work and my boss was there. Same question/same answer, but I can feel myself fading.

I was listening to Joe & Huggy on WTKK. I called in and told them a joke and they were very gracious about missing me. Their first question.....Yup, you guessed it! I was a faithful listener when I worked Saturdays, but it's been a while. They know how sick I am and Joe struggled to explain my absence saying the I've been "under the weather". I laughed at that one.

I spent an interminable amount of time in Walmart. It was crowded, but the problem was me, me, me despite having a list in hand....argghhh!!!

By the time I got back to the house another neighbor spotted me and asked "How are you?" and I wanted to yell "Stop looking at me! Stop talking to me! Stop asking me!"

But I didn't. I said "It's a good day!"

LOL and for the most part it was. Although dinner Jennifer didn't get her dinner until 7:45 pm, lol.

We watched a little of the 9/11 stuff, but it is so painful. Mostly we watched the Food Paradise marathon on the Travel Channel. I wrote down some of the places I want to go. I'm still working on these adventures! There are a couple in Brooklyn. Anybody up for that adventure with me? Peter Luger's Steak House; the Chip Shop for fried candy bars?

And now? I am wide awake with heartburn and hot! If you see me tomorrow....just look away.

Saturday, September 11, 2010

September 11, 2010

The saying "Time heals all wounds" has never worked for me. And this is one that hasn't healed. I'm not unhappy about that. For me, healing is forgetting and I hope I never forget how I felt that day. I'm glad I have written down some of my feelings in this blog so I can go back and reflect on them.
8:46 AM

Today is a day for reflection. Not politics.

Thursday, September 09, 2010

Some Anonymous Asshat Ruined My Bath!

I brought my Bath & Body Works Aromatherapy Dream Bath a glass of cranberry juice (no Coke in the house); M&Ms; and my book to the bathroom.

I cleaned the tub with some Kaboom tub cleaner. Jen says it's not as good as scrubbing bubbles and that I just like it because it sprays on blue and turns white. She added some nonsense about me being like a five year old. Probably true. After cleaning the tub, I poured in tooooooo much bath cream and made tons of bubbles. Extremely self indulgent.

I read, drank, soaked, ate M&Ms. It was relaxing and soothing and decadent. I washed my hair and used my free Aveda color conserve. Free is my favorite price!

After I cleaned up the tub and started the laundry, I came down and opened my email.

Here is where the Anonymous Asshat appears and ruins my mood. He or she comments on an old post -
"Kerry & Chris Shook Are Insensitive Assclowns"

Go read it, I'll wait, it's short.


So when I saw these two jackasses laughing on FoxNews about their planned "ADVENTURE" where they and their congregants will pretend they are dying in a month I posted that.

That was back in January when I was not in chemo and I was still asymptomatic. I was not in pain. I was furious at the nerve of these nitwits to belittle what dying people suffer. To turn it into some social experiment. To make it like the guy who did "Super Size Me". This isn't a's my reality.

As you can imagine, now that I have symptoms and I am in pain and I am in chemo and I am all drugged up.....I am even more angry.

So out comes this anonymous commenter - and trust me, they should stay anonymous, or I will hunt them down and punch them in the face, repeatedly.

"I know this was posted a long time ago, but my church is about to launch a sermon series based on this book, so I came across this post in searching for information about it. The book is directed towards Christians who are lackadaisical about their faith and need to live every day doing God's work as God intended. It's neither insensitive nor something to get angry about. Just wanted to let you all know."

Really? Seriously? You think it's ok to make a mockery of people suffering and dying so you can live out your faith. Well if you need to play this kind of game in your church, then your church must really suck. If you need this to help you, you are an IDIOT!

My reply to Anonymous?
"Dear Anonymous,

Fuck you. Fuck your condescending attitude. Fuck you for coming out here and telling me what I read and how it should be taken.

I promise you that I am at least twice as smart as you right this minute and that's not that smart considering how many drugs I am taking."

I really hope Anonymous comes back and reads this because he/she needs to know how their comment played with someone who IS FUCKING DYING!

It's neither insensitive nor something to get angry about. Just wanted to let you all know.

Really? Well why don't you come on back and tell me it's nothing to get angry about when you are actually 30 days from dying? Yeah, I think you'll be singing a different tune then.

Jackass. Kerry and Chris Shook are insensitive assclowns and you are a fucktard. A cowardly one at that.


I went up to my house to clean and sort some more stuff. I am still not out of there, but my deadline with the bank is October 1st.

I was there for three hours! But I got a lot done. Three hours is just about the life of my pain pills, lol.

Not a lot of brain power, but that wasn't necessary, was it?

Now I am going to reward myself with a bath.

Wednesday, September 08, 2010

Infusion Aftermath - An Attempted Coup

So after the chaos of infusion & talking to Kate, we went down the street to PF Chang's. Thank God! I was starving. I had a bagel and a cup of tea in Indianapolis Airport at 0630. Then Jen brought me M&Ms in infusion.
Grace & Jen were lucky they got any of the wontons. Although they had lettuce wraps, so they wouldn't have fallen over.
They were in full soothing mode. Maybe Kate's wrong. Maybe it won't be as bad as I think. They are coming back on Friday. I told them no, but you know, that's stupid. I can barely function. One of my biggest problems yesterday was that I didn't have my wheelbook with "paper brain" as SB calls it. All my questions were written in there. It's almost embarrassing. For weeks it's been almost a diary "Make bank deposit" "Take Bus #19" "Buy eggs" "Ask why they tested my IgG instead of my IgA"

So they should go. Someone should.

I was getting frustrated with them and their "bright side". There is no "bright side". Every positive they brought up has a dark side. Some they choose not to think about....some they don't know about.....yeah, yeah, I know that's wrong. Bite me.

This is not to say that the day was all tears and death threats. Although I can't even count how many times I said that I wanted to punch someone in the face - people in the book I was reading, poor Kate, the NP who was just the messenger, people who couldn't drive in front of us.

But we had plenty of laughs too. We laughed so much and so loud in the infusion room I thought we were going to be spoken to. Same in PF Chang's.

At one point, Grace tried to use one of my own lines on me "Respect my position as the second oldest...." I interrupted her and said that shit doesn't roll uphill, I am the oldest.

Jen said that Grace was in the top position now, like the Vice-President when the President is incapacitated. I couldn't argue, I was laughing too hard. Then she announced that Grace had to be in charge because she (Jen) was just SecDef and our brother Frankie is way down, like Secretary of the Interior.

So now....I am an insurgent!

I have decided that I will go in on Friday and play hardball. I will tell them that unless there is a compelling medical reason to do it every ten days.....I want more time between rounds. I want 16 days. At least for these next two rounds. After the November round it is holiday time and I wouldn't be flitting about the country. I will want to stay close to home. But I want to go to Kansas & back to Florida and the Grand Canyon and Vegas and the USNI conference. I need more time in this month and in October. I don't think that's unreasonable. My plan was to do things until October 20th and then turn myself over to them. They are the ones who changed the plan. I think I am being very reasonable.....stop laughing.

I will negotiate. Hey Armorer.....can I have a goat and chicken?

Tuesday, September 07, 2010

I Am Enraged....Literally!

Today couldn't have been worse.

First, we were late getting there. I have done this five times now. When I am on time, I am in and out in under two hours. When I am late, it takes three. I was at my parents house by noon. Jen was running late, but she was meeting us there. Grace was coming from work. I don't know what was happening in Everett today between noon and half past that involved nine police cars and frankly I don't care. I just know it made Grace late.

Then my Dad drives us to Foodmaster. My sister-in-law works there and she was nice enough to make me a couple of dozen of her raspberry squares. I am not a raspberry person, but I know that they are really good. I wanted to bring them to the infusion room nurses. They are really nice anyway...but I like to do this. And of course flying in from Indiana this morning left no time to play Betty Crocker (by the way, the actual flying part went just fine, thank you Southwest).

So my Dad goes over the Prison Point (Gilmore) Bridge and I start to say something, but let's be honest, he knows way more than me about driving in Boston. Then he heads up Memorial Drive and I say "I would have gotten on the Expressway." He give me the what's-wrong-with-you look. I try again "It's the fastest way to Chinatown (Tufts/NEMC is right on the line between the theater district and Chinatown. Again he raises an eyebrow and says "Who wants to go to Chinatown? I am going to shoot over the Mass Ave Bridge and down to Brigham & Womens."

Ahhh! "Wrong daughter." Jen goes to BI Deaconess MS Clinic right behind B&W.

"OH!" We laugh, he zigs and zags and next thing you know we are over near Mass General and zipping up to Tremont. He whizs around a vehicle that decides to simply come to a stop in front of him so close he laughs "Pull your elbow in, Diane!" He deposits us at the front door of the Floating.

We were 20 minutes late, they are already backed up with the leftover people from the holiday like me - I am supposed to be in on Monday.

I am not in a chair until 2 pm. Jen shows. I get my IV. She b rings three fun size bags of M&Ms. Then my IV gets flushed. I lost a few pounds....all that walking in Florida and Indiana. I get the steroid. They know I want to talk to Dr. Miller & Kate, my NP, but both are busy. You really can't expect much on the day after a holiday. Normally things are much different, so I am not bothered at all. Over all, I like everyone involved in my care, so rolling with this delay is no problem.

After the Velcade we head over to the other side in search of Kate. I need clarification on the medication timeline. I am so ok with how this past round went, I want to start making plans for Vegas for BlogWorld. I know because of the abrupt start and the holiday, I got more "off drug" time than I should have. I think I should have gotten 14 - 16 drug free days and I got 19.

But I need to know, does the 14 day count start after the last Velcade infusion (Day 11) or the last Revlimid pill (Day 14). I want the answer to be after the last Revlimid pill. That would make the 14 days truly drug-free. But I know that the answer may be that the clock starts ticking after the last Velcade infusion. And I can live with that. I had a lot of time to think this last ten days or so. I was alone for a fair piece of it. On busses and planes and shopping and walking and cleaning. I have made my peace with it. I can do 14 days and then have 14 days off. I can suffer, recover and have my adventures.

Kate says it's not supposed to be 19 days.

Or 16.

Or 14.

It's supposed to be 10.

From the last Velcade infusion.

I am stunned. That means the clock between infusion is ten days and the first four aren't drug free because I am taking the Revlimid. And last time I needed 8 days to recover.

I am no math whizz, but the nuns hammered in some basic points and ten minus four is six.

Six drug free days and then back on Velcade.

Do you understand? I will not even have recovered to the point of having adventures in six days. Much less have time to execute and enjoy an adventure.

I stopped Velcade on August 19th. I was not even remotely back to myself until the 28th. TSO & Caro's wedding this past Sunday, the 5th was the best I felt all month....and even then I had to sneak back to my hotel and nap between the reception and the after party.

If this is correct and not adjustable it means, no road trip where I drive to Kansas by way of Philadelphia and friends in New Jersey and Ohio.

I means no trip to the Grand Canyon.

No driving on the Lincoln Highway or Route 66 in the giant soccer mom van with the scarf Kanani sent me rippling across my shoulder in the breeze.

It means no crashing the Pirate conference for which I have ordered a Drink-Ex with some favorite Sailors and USNI peeps and My Marine.

It means no Las Vegas.

It means no sneaking back to Florida and hanging with peeps on the East & West Coasts.

It means that for the next six months (and they told me that no matter what results are achieved, good or bad, I must do it for four to six months) every day will be shitty. Maybe a little shitty. Maybe a lot shitty. But shitty.

In my mind I just keep hearing a heavy prison door slamming shut.

I could not speak to Kate. Jen thought I was just frustrated because my brain vapor locked as it does when I am on steroids. She thought I simply couldn't form words. That does happen to me.

Grace could see I was angry.

I think Kate saw it.

I couldn't speak because every word formed in my mouth was a profanity.

I told my parents. When I was alone with my mother, I said "I don't have to do this and they can't make me" She said "I know that."

I don't have to.

They can't make me.

So...I Am A Little On Edge...

This trip has been wonderful. I keep telling myself that it has been just what I need to shore me up as I go back into chemo......


I made it through Revlimid & dex in '08 & '09. Four months of drugs & eight months of recovery.

I made it through Velcade & dex in August. Twelve days of drugs & seven days of recovery.

Today I start again and I can't tell you how much I don't want to do this. Today will be all three....Revlimid, Velcade & low dose dexamethasone. Sure the Rev dose is dialed back from 25 mg to 10 mg and only 14 days instead of 21. The steroid is broken up over eight days instead of four.

I should focus on those positives.


I should think about how grateful I am to have had this last ten days in Florida and Indiana. I should think about the fun things I did and the people I got to be with.


I should think about how happy I am to be going back to Boston....the Hub of the Universe.


Let's focus on something else......I will make some demands....go join this Facebook group.

"Friends of the Cruiser Olympia"

The Armorer has brought their plight to my attention. This non-profit is trying to raise funds to repair and maintain this important piece of US Naval History. By "brought their glight to my attention", I mean he demanded that I not let it slip away. He ordered my to get on it.

Who does he think he is talking to?????

Monday, September 06, 2010

Downtown Indianapolis

It was a great summer day to explore. I had a good time. I made it to the Soldiers' & Sailors' Monument. I walked through University Park. I walked all around the Indiana War Memorial.

I sat in the late summer sun and enjoyed ice cream from the Chocolate Cafe. You know that name caught my eye!

It would have been a little better on a weekday so I could have gone inside the Soldiers' & Sailors' Monument and up to the observation deck. But no matter. It was still fun and interesting.

I guess I'll have to concede that Dr. Miller was correct about one thing. He said that chemo didn't mean the end of my adventures. That I could still see America.

I did my 11 days (only 11 in August because the Revlimid wasn't ready - September will be 14). It took a week to pull myself together. But from last Saturday until now I have felt very much my pre-August 9th self. Sure I am slow and there is pain, but I am not incapable or deranged by steroids. There have been no embarrassing outbursts of tears or temper. I was not winded by my adventures.

Tomorrow I fly back to Boston. I arrive at 11 am and at 1 pm I will be in the infusion room.

There will be more adventures in 14 to 21 days.

Sunday, September 05, 2010

It Was My Absolute Pleasure....

.... to attend the Milblogger event of the decade....the TSO (This Ain't Hell)/Caro (USO Girls) wedding.

I am in Indianapolis. The wedding was this morning at 10:30 am...but the celebration goes on! the ceremony was outdoors on a picture perfect, sunny, Sunday morning. The bride was breathtakingly beautiful in a one shouldered white confection. Her hair was held to one side in a sparkly clip. She was just adorable! TSO was handsome too, but you know where the focus should be!

the reception was a lovely brunch and I met so many people. I got to hang with some good blogging friends and met some surprising significant others!

Now I am off to the Rathskeller for more celebrating!

From This Ain't Hell - "When Bloggers Marry"

And if you want more pics, I hope you are Facebook friends with BlackFive or TankerBabe.

Friday, September 03, 2010

My Big Weekend Plans

Tomorrow I fly to Indianapolis for the Milblogger event of the decade..... Mark and Caro's wedding.

TSO thinks I am doing what??????

Of course I like BlackFive's comment #12. LOL!

Thursday, September 02, 2010


Someone big, no idea who, linked to a picture in an old post. It is driving huge traffic. Three times the normal amount.

Great, huh?

Well I have barely posted anything, so....not really, lol.

I am having an excellent time in Florida. I wouldn't trade this time for anything. But I have been in tears nearly every night. The person I am with is demanding absolute honesty about me and the chemo and how I am dealing with it. I know it's good for me and for us. But, cripes, it hurts.

I know I went on like a crazy person about the pancakes yesterday. On Facebook. On Twitter. So as we sat in the twilight last night on the deck......he pushed for the why.

The pancakes were off. Dinner was off. Not awful. But not right. He's watching me pull out my nifty USS Constitution wheelbook (you are so jealous, huh?) so I can read what I can't remember.

"Ok, dinner sucked.....happy?" he says to push me into talking about what is real and what I am upset about.


Ok, I am on and on about it......but I'm afraid. I'm afraid because I couldn't remember how to make pancakes. I'm afraid because I used to be good at these things. I was effortlessly good at these things. Now I can't because I can't remember and I can't concentrate.

So we sat there in the darkness and I poured it all out.

It's better now. So you will not be so burdened with me ranting like a mad woman about not perfect pancakes and chicken.

Tonight I made Inside-Out Ravioli. And if it's not perfect. That's ok.