Gettin' Better!

Plymouth was wonderful this year, although I did hurt myself a lot walking the entire parade route because Don Deal is a moron--I thought he was giving me a lift to the end of the parade, but no, he wanted to walk the whole way. I was in pain!

But the weekend kicked off with the fun bus, with a Luau theme. I drank way too many Hawaiian Bay Breezes, but it did help numb the pain of sitting on the bus for 5 hours. Otherwise, I stayed on plan for the weekend. Rehearsal was fun, and I fit into my luau dress that I bought ten years ago and have never fit into!

I did go to bed early, and thankfully with some painkillers. The next night's show, Jack and I wowed them when we finished our duet, and when the bari solo sang, "Cuz I love you..." we kissed!

The audience loved it!

When we got home though, I saw an oncologist and got certified for a medical marijuana card, which should arrive in a few weeks. Meanwhile, it's more oxycodones at night.

We spent Thanksgiving with Jesse's in-laws, and it was our whole family along with them, so we had a blast with the kids keeping us entertained the whole time.

I think it was the best T-day we've ever had.

As of December 5, I've lost 29 pounds on my diet. I then celebrated a little so I put some back on, but it will be off again next week. I'm very very happy about that! My stretch 18W's are sagging on me already, and I'm thrilled! I feel better, I feel more energized, and I feel more positive about many things. And I don't even have my marijuana yet!

Finishing out the season with two Bracken parades, re-asserting myself as the music instructor. 

And here are some more grandkids!

 

Did I Mention I Suck at Blogging?

I suck at blogging, but it's been a good month.

I've regained all my strength and most of my stamina again. I've dropped 24 pounds in 4 weeks, and I fit into my NEW uniform pants, which are smaller than my old uniform pants. That feels good!

My birthday was eventless, except that I went to see Dr. Butler and he is very excited about how my breasts are healing and settling, even though the right implant is being held up by scar tissue, so as the waitress says in Waitress, "One boob's up here in Maine and the other is dangling down here in Florida." He's sure that in 6 months, they'll be right.  This is now:

The image is flipped, so that's my right breast popping up on the left, and my left breast hanging down and off to the side on the right.

And I hope in 6 months, they'll actually look like the D cups he promised me, because right now I still look flat and flabby.

Leighton and Eliana are growing so quickly! Eliana babbles a mile a minute and she's learning simple words. Leighton is as fussy a baby as Buddy was (poor Lindsay) but when he's sweet, he's just adorable! It's funny -- he looks exactly like Buddy until he lights up, and then he looks exactly like Lindsay.

I was able to get to Philcon this year, and that was really a lot of fun, although my spoons gave out early each  night. I couldn't get past 8 pm! But I made my presence known, and met new people and had a great time. notice the hair growing in, and the fancy blue compression sleeve and glove!

And on October 12, Justin got married, and we got this picture taken:

Dieting

So I'm on this diet, OPTAvia, which is basically the old Medi-fast diet that's a little more souped up.

Deprivation is a good part of it, but you buy into a box of what they call fuelings: shakes, bars, a few soups, cookies and brownies and pancakes. You have one of these 5 times a day, and you have one major meal that is "lean and green": lean meats or proteins and three 1/2 cup servings of vegetables, mostly greens, but also a few hard-core veggies. 

Naturally, since I'm eating practically NO SUGAR, I'm dropping pounds, which is a good feeling each morning. I started Tuesday at 241, and today I'm 237. Nothing major, but if I can lose 4-5 pounds a week for a while, that would be so nice!

This is my before:

That's about when I was 248.

We shall see.

I Suck at Blogging. That's Good!

Another whole month gone by, but then, not a lot has happened, and this isn't actually a diary or journal -- just a blog keeping track of my tracks.

I have decided to throw $400 some dollars at a weight-loss program that is theoretically guaranteed for dramatic weight loss. Janine Bryant is the coach, and that makes it better having someone I know guide me through it. I start tomorrow.  Considering I woke up this morning at 241.6 pounds, it's time to drop 100. Or as they say in the program, "release" 100 pounds.  We shall see.

Meanwhile, a graphic I made myself for tee shirts:

Almost Done This Wave

My lymphedema treatments are successful; I've lost 18 pounds of yuck. But I still have another week of therapy, waiting for my sleeve and glove to come in. Those I will wear all day. And if they work well enough, I won't need to wear any compression at night.

The effects of chemo are just about out of me. I still have little stamina, but I feel good. Except when I have to wear the stupid wrapping for the lymphedema. Honestly, the thing weighs a ton, squeezes painfully tight, and really grates on my thumb and pinky arthritis. I haven't had a night's sleep in four weeks, so if I really have to go another whole week like this I may bite someone.

I do look forward to my exchange surgery, though! I will have boobs as of September 23! Well, Foobs, actually, but that's fine with me. Dr. Butler says they'll be D cups! Yowzah!

Meanwhile, here's my new grandson Leighton, born Aug. 15!

3 hours old!

 

Leighton and Besta listening to Ant Stampede with Buddy (Daddy) on drums!

Inch by Inch

In all of this, Jack has been amazing. No housework is getting done, but he cooks and cleans up after, does the dishes, does the laundry, and fetches for me.

And I feel ashamed. But also fortunate.

Still No Sign of Land

Phlebitis caused by extravasation. Hah! 3 weeks later, and still inflamed and ropey.

And the swelling is lymphedema. That one pisses me off because I specifically asked how to avoid it, and the oncologist said to go ask the physical therapy people, but I couldn't get an appointment before ending up with lymphedema! The treatment for which is to be massaged for an hour, then wrapped from fingertips to shoulder in a layer of padding, gauze, foam, and elastic. Four times a week, and constant from four weeks. Right now it's stage 2. My right arm is starting to get those bulges. I'm swollen up to my neck, and my feet are little balloons.

I'm not happy. I look like someone shoved a bike pump up my butt and kept blowing.

Is this my last awful?

Today is awful. I am weak and I feel sick. My arm is infected at the injection site from chemo. Dr. Gabriel thinks phlebitis, but chemo sites list something called extravasation that sounds like what I have: redness, blisters, itchiness.

Pain in my bones isn't as bad today, but my legs are weak. My right arm is also swollen and hard as a rock.

I'm sick of being sick.

Official

It's official: I'm a member of the survivors club.

I finished my last chemo Monday, so today I'm all a-jitter and can't sit still or stand or walk.

But the treatments are done.

Surgery for the exchange is somewhere around beginning of September or end of August.

I'm so tired of this.

A Little Smoother

Dr. Gabriel really came through for me this round. She cut back on the steroids, and demanded Neulasta because of my reaction last time to the generic. No jitters, no aches, a bit more sleep, and peace of mind.  Thank you!

Peach Fuzz

The hair loss has pretty much stopped now, not that there's much left. I am wondering if it will continue through the next round, which is Friday. 

18 days

18 days after chemo, your hair starts to fall out. And it itches!!!!

First Chemo Update

It was a lousy week after that last post.

I was rammy and restless with all the steroids that had been pumped into me for the chemo set-up, and on top of that the nausea medication conflicted with my restless-legs medication and gave me uncontrollable twitches and jerks.

But the real pain set in when I returned for my Neulasta replacement medication.  Neulasta is typically assigned to stimulate the production of white blood cells. They apply a patch, and it dispenses over the next couple days. Insurance refused to cover Neulasta and recommended a different regimen that required waiting for two days, and then a shot in the arm. I reminded the nurse that I was to also have a script for oxycodone, but she said I wouldn't need it. Maybe a Tylenol, or try Claritin. I repeated that Dr. Gabriel was pretty clear I was to have the Oxycodone. Nope. Later that afternoon / evening, I felt like little squibs were being blasted out of my marrow bones. Mostly my legs, hips, and feet, but also my arms. I was wailing like a cat on a rack. Actually, it felt like a rack might feel. Jack was able to call the Penn Med center and Gabriel was on call, so I got my happy pills and was able to sleep the next few days.

On Wednesday, I had the family over to help me shave my head in prep for losing it, which should be this weekend or Monday. The girls separated my hair into quadrants and braided it, then cut the braids off. Then Buddy took the trimmers and shaved me down to about a half-inch fuzz. We taped it; people watched; it was fun.

But in the meantime, my body temp kept rising past the Rubicon, 100.4, and then drop down again after a half hour. I'm supposed to report to the ER if my temp goes up that high, but I didn't feel anything wrong. I checked with Dr. Gabriel, and she said to keep a close eye. But on Thursday, it went flying up to 102.8. I figured I should go to the ER. I knew I wasn't getting enough fluids the past few days, so I was probably dehydrated.

Turns out the Virtua ER has no idea what to do with a chemo patient with a fever.

So I was stuck in the hospital for two days while they figured out there was nothing wrong and that this was my reaction to chemo. Very frustrating.

But in the meantime, the CPAP the hospital gave me to use blew a hole in my upper sinuses, and I came home with a good sinus + cough + chest congestion that still has me down on a Thursday.

I have felt pretty good all week, and I got my third expander fill of 60cc's.

So now THAT was my first full week of chemo!

First Chemo

I had my first chemo Friday, 5/3. I got to the blood lab at 9:45. My appointment with Dr. Gabriel was at 10:15. We finally saw her at 12:15, so I didn't get to the chemo chair until almost 12:30. Then there was a series of pre-treatments before the two chemo drugs. All told, we didn't get done until after 4. Then I napped!

 


All told, it just felt like I was being pumped full. My BP was 177/81, which is nuts.

Jack had bought comfy front-row-center balcony seats to see Delta Rae at the World Cafe for Friday night. When I was told Wednesday to start chemo Friday, Jack put the tix up on eBay, but everyone I talked to said to go for it. So through some machinations with Lindsay, we bought the tix back and went.

It was funny because I was chatting with Delta Rae's Brittany, who sympathized with my plight, but was very glad to hear I would be there. She called be a rockstar and Jack a badass. I was dragging, but feeling good. I drank over a half-gallon of water through the course of the night. And Brittany gave me a shout-out from the stage.

I was exhausted when we got home at midnight, but I slept well after the restless legs settled down. I woke up pretty energized around 7:30, but by 9:30 I was down for a short nap. That seems to be the pattern today ... walk about for 2 hours, sleep for a half hour.

All told, I think it was successful. So many prayers coming in. I am blessed.

The Doldrums

I've reached the point of doldrums in my cancer "journey." Wound still open. Feeling strong enough to do things, but regret doing them afterward. And I'm down with some sort of cold that's making me miserable and giving me an upset tummy. Everything hurts.

3 Weeks Later

Well, I'm getting stronger. I can even wipe myself when I poop.

I've chosen a salon that will cut off my hair for donation, and will give me a wig in return.

Dr. Butler pushed my appointment back another week. I wish he hadn't pushed it off at all. The wound is just not closing, no matter how much we wish it. Nor is the little hole under my dog-ear flap. Now the right breast is all broken out in hives as well. I think because of having 8 weeks of tape.

This past weekend, we attended my step-niece's wedding in Virginia. I had wine for the first time since Jamaica, and it hit me like a baseball bat. No more alcohol for me, it would seem. Nephew Scott and his girl Jess also came to the wedding, which was wonderful. He even served me dinner to keep me from having to stand in line. Jack was the officiant and did a nice homily.

I did some grocery shopping today. Now I hurt. My visiting nurse Andrianna wants me to have more protein, so I bought a chocolate protein powder to add to my morning shake. Makes it nastier, but there it is. I bought V8 to make sure I get more veggies. I also bought bags of mixed frozen fruit instead of buying individual fresh fruit -- it's actually less expensive.

One thing I am truly sick and tired of is not being able to sleep. I can't sleep during the day, as tired as I am, and I'm wide awake until after midnight, and I can't get comfortable and I wake up a lot. Lying on my back is awful. I don't have the real strength to sit up, sometimes not even to roll over.

And my middle is getting fat. Ter. I need to exercise somehow. But I'm always exhausted. Is it chicken and egg? I don't know.

I know I said I once felt guilty that i wasn't really a cancer warrior. I take it back.

Just Can't Help It

I do not believe in karma or an unjust and vengeful God.

But losing my breasts really does feel like I'm being punished to spite Jack's obsession with big boobs.

My oncotype report indicated that I am going to need chemotherapy, so I'm also definitely going to lose my hair.

And if my right breast doesn't heal soon, the plastic surgeon is going to remove the expanders and refuse to reconstruct, so I'll just be this flat, maimed thing.

I'm angry.

Beeg Deal. So What?

I've been on several Facebook sites for women who have DBX, and every question I ask has a yes, no, sometimes, never, yuh-huh, and nuh-uh answers, all of which are finished with, "Stay strong! You got this, girl!"

My current status: Drains 2 and 3 were removed. Drain 1 sporadically spits out more than the daily allowance, so that's staying in, even thought it hurts like hell. Drain 4 is working overtime, mainly because my whole right side is an angry, and I mean no SPF in Punta Cana in July, red. There's no infection. Dr. Butler cannot figure out why it's happening, but he's talking about removing the expander, which means I won't have reconstruction on that breast.

And I'm tired all the time. ALL the time. The doc says I should be moving more, even going up steps,
but he has no idea the extent of arthritis pain that causes.

In all of this, Jack's cousin Doug is losing his fight for his life, and Jack is nearly losing his mind with paperwork and financial details, while trying to handle the emotional loss as well.

I hit the cry wall on Sunday, and now I cry over everything.

Even over the new Chromebook on which I'm typing my blog.

Too Freaking Tired

     So surgery turned out to be an adventure. Have you ever known me to do anything by the book?

1.  Open me up to find that there is a huge tumor in the right breast that the MRI didn't show because it was hidden in the nipple. 
2. It was also a different kind of cancer from the cancers in the left breast. 4-hour surgery becomes 5 hours. 
3. Lymph nodes in the right armpit respond to the dye test. They scoop out about 30 nodes and find one contains cancer. We're now at a 7-hour surgery. 
4. I go into post-op and as I begin to some out of anesthesia my blood pressure spikes and blows a clip off an artery. Heigh-ho and it's back into surgery I go. 
5. I wake up at 10 pm -- having gone under at 11 am -- to be told I'm cancer free. 
6. I had four drains, which Jack cleared like a pro. However, one of the drain sites had a back-up inside my body, so that leaked like a French toilet down my back. 
7. I slept on a pee pad because they absorb better and don't stay wet. Nevertheless, between the leaky drains and my inability to use my right arm, we have 3 loads of wash a day, and an occasional mopping of the bathroom or living room floor. 
8. All told, the left has a large anchor where my breast should be. My right also has an anchor that then trails off to the mark of Zorro under my armpit. 
9. I saw both doctors yesterday, and they declared the whole job a great success and the plastic surgeon was VERY please with the way it looked. His assistant even nodded behind his back as if to say, "He's not crazy. This really looks good." 

I just wanted to cry And still do! Beyond the success, there will be 6 more months of treatments    between the expanders being inflated and the Tamoxifen from the oncologist, whom I haven't met yet but hope to in the next week. 

 Jack is a trooper. In the midst of all this, his cousin who is as close as a brother to him finally surrendered to an intervention from his friends and went to the hospital where he learned the cancer we all suspected he had is beyond any aid. Jack is his POA, and so while I sleep, he goes to the hospital to see Doug and check in with doctors and manage Doug's sister (who is a looney-toon) and consult with Doug's friends who have raised thousands for his treatment. 

 AT home, he's been emptying my drains and maintaining records of their output and color; changing my paddings and gauzes, meting out pills at appropriate times -- which meant waking up at 2:30 am, and helping me with getting dressed. I've been able to spare him the disgusting aspects of personal hygiene. 

 I don't know if I mentioned, but we were able to secure a free hospital-style bed. It's huge, so Jack and I get to snuggle at night when I'm too exhausted for anything. It's quite pleasant. 

 So that's where I am so far. 

A long way to go and a lot of sleeping each day, which I hate because I feel I'm wasting time even though I know I'm healing from some pretty major stuff. Oh, one last anecdote: When I came home, I could not keep my CPAP mask on. It fairly blew itself off my face, and I could not make it behave. I called my pulmonologist and explained I'd just had a double mastectomy and perhaps with my drug-altered breathing, he could direct them to lower the PSI force. He said, "That sometimes happens if there's been some serious lung issues or maybe you've had a sudden loss of weight?" I gave him 3 beats before saying, "Well, they did just cut off my tits."

Getting Ready

We had dinner with Buddy and Lindsay Saturday, and they announced they're pregnant! Whoo hoooo! Due in August.

While we were in Jamaica, cousin Doug's friends at the bar at PJ's staged an intervention and sent him to the hospital. He has lung cancer that has metastasized in his throat, pressing on nerves and causing paralysis. I'm sick with worry.

Meanwhile, I'm nesting up for surgery. Not much else is happening.

Jamaica

We arrived in Jamaica Wed., 1/16. It's now Sunday. All I can say is, membership has its privileges!

We've lounged daily on the members beach, where the snorkeling is stellar. There's an artificial reef in our lagoon, protecting the real reef from interlopers. Out there, I saw lion fish, the usual suspects of tropical fish, even an octopus! There's a piper that cruises through the shallow area daily. One snorkeler saw a manta, although I haven't seen it.

It's Sunday now, and I've been overly sunburnt enough to enjoy resting in the shade today. Perhaps I'll get some writing done. We've worn ourselves out every day just by swimming and walking here. Last night I crashed at 7:30 and slept through to 5:30.

I really hope the kids will come here with us some day.

What a Week

The party was over the top this year, not for the numbers, but for the guests. Alicia Miranda surprised me by escorting Winston Byrd! What a hoot!

It must have been a really good party because I was in such intent pain the next day, and the next!

But we also found out that cousin Doug was taken to the ER at Lourdes. He'd been having trouble -- paralysis in his throat and vocal cords. It's been pretty bad.

And the next day we learned that my brother Gregg's ex-wife had a severe stroke and was on life support, awaiting the family to gather and pull the plug. So tough.

New Year's Eve, Buddy invited me along to a complimentary NYE fireworks party on Penn's Landing, from 5-6:30. So much fun!

And NYD Jack and I went to Artie and Audrey's "Tablecloth Party" -- they throw just the best dinner for BSGK friends.


But the New Year got off to a bad start when I met with my plastic surgeon, Dr. Butler, who basically told me I was too fat to have a TRAM flap, and too old to bother with breast implants that would probably need replacement in 10 years, and who wants surgery when you're 75? I've been so upset since yesterday I can barely put two thoughts together.

People are suggesting I get a second opinion, but I wouldn't know where to go. Penn Medicine is supposed to be the best.

Anyway, that's been my week, and as I type this, the Christmas tree just fell over.