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)....is 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 strangers....so 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 scrub....it 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 Military.com and CinCHouse.com's Spouse of the Year Award 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 errands....it was 3 pm before I took it.

He suggested tomato juice....you 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 blog.....you'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.

Jen's XM Saves The Day!!!!

Where to start........

I still have Fred Flinstone's feet and my doctor is concerned.....me 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?

Yeah.

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 Military.com and CinCHouse.com'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 song...it's just fun!

Sssssunday.........

***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 sweatshirt....lol. 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"

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 genre.....so 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.

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 Boston....you 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 better.....off 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 do...trust 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!

Pissah.......so my flight to Kansas has been delayed a day.

This morning the foot is smaller..

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?

3040

One cycle.

Just Velcade and low dose dexamethasone.

3040

"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 lounge....lol. 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.

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.....

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.

Well....it 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!!!

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.

Ummmm....

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.