It Was A Day From Hell ..

A vision in hospital gear, no?

So yesterday was port surgery day and baby, it was a long one! We arrived at 7:30, a full hour before my appointed time, but at MDA if you arrive early, generally, you get seen early. Generally, but not yesterday! It was 10:30 before they took me back for pre-op stuff: nakedness, compression hosiery, antibiotic IV, stuff like that. And it was 12:30 before they wheeled me to the OR. My nurse, Millie, was great! The anesthesiologist, Pascal, was from Ghana, West Africa .. And his last name was a hyphenated alphabet soup, hence his being called “Pascal”. He was about 6’5” and a handsome blue-black gentleman with a soft voice. I liked him immediately. And, despite the fact that he messed up my eye makeup during surgery, we parted as friends. (Even though in my medicated state I kept calling him Pasquale. He just smiled wider.)

They brought Dave back to the recovery room at 1:45 and we were there for more than an hour while I shed the remnants of my sleepy meds. I wasn’t really in any pain but I was sore. Sometime around 3:00, they wheeled me to chemo. Since I had missed lunch in recovery, I was hoping to get something to eat in Chemo since my half of a hamburger from supper the night before was long gone. My chemo nurse was less than wonderful. This was a first as all my nurses (and all the staff) have been great so far. Dave and I repeatedly told her that I couldn’t hear her soft voice and yet she seemed to refuse to speak up. Finally, I stopped trying to hear her. Dave asked her if I could get something to eat since I hadn’t eaten all day and she just walked out of the room. She didn’t offer juice, soda or anything. We didn’t LIKE her. The cafeteria closes at 3 PM .. So Dave finally went to the gift shop and spent eleven dollars on nuts, crackers and a package of cookies. I didn’t leave chemo until 5:30.

I missed my appointment with my oncologist due to all the dominos shifting, so that appointment was rescheduled for next week. Next Wednesday will be another full day starting at 8:30 with a consult with my breast surgeon, blood work, chemo and my oncology visit. Being sick is hard work!

So, my port is in! I have two incisions, one about 1.5” long where the port is in place and another .5” incision on my jugular vein which is where the threaded the lead for the port (I think.) It’s not really painful, just uncomfortable but I am not to do much for several days and no lifting for a couple of weeks.

While I was in surgery, they placed a needle in the port so I would be good to go for chemo. YAY! No more IV sticks or hide and seek veins. Chemo will be a total breeze now. I’m still not feeling any nausea and my only side effects are fatigue and hair loss. I can’t really complain about that, after all, it’s proof that the chemo is working and surely Herschel knows now that he is in DEEP SHIT.

So tired & hungry!

I feel so very blessed to have Dave who is with me always (unless I throw him out of my room like I did yesterday!) He made the unfortunate mistake of telling me to “settle down” which didn’t set well with a hungry Darlene. Fortunately, he didn’t go far. And when I woke up from my nap, he was there, by my bed, staring at me. Mama says I need to be nice to Dave and I know she’s right. After all, where on earth would I ever get another guy who makes me laugh every day AND pulls my underwear up for me when I can’t?

Mood Swing!

Darlene & Betsey

Someone I love and respect last week mentioned that I might be in denial about how sick I am. I would immediately DENY that I am in DENIAL. But I've been thinking about it .. It's so funny because I am like the Wiley Coyote of preparation .. and like Wiley, I seem to buy all my supplies at Acme. Without fail .. they fail.

I'm never really prepared for anything life dishes out, so maybe that's the lesson in this. Stop spending so much time getting "ready" for the next shoe to drop. Just enjoy the time without the dropping shoes. You think?

Yesterday, for just a few hours, I was really upset about my hair coming out. I knew (on some level) it was going to, but I harbored a secret hope that I would be one of those odd characters who gets to keep their hair all during chemo and beyond. Not gonna happen. All during the night I kept imagining waking to find all my hair on my pillow when I woke. That didn't happen either. It's coming out 15 strands at a time .. at least today it is.

When I look outside I know how the oak trees feel: cold, bare, naked, vulnerable. In the spring, when they leaf out I think I might be a little more jealous than awe-filled like I usually am in spring. But there will be another spring and I, too, will leaf out.

I am rambling. What I am trying to say is this: It's important for me that the Herschel blog be a brutally honest account of all I experience while on this path to healing. So that means I will post pictures, like yesterday, that graphically illustrate my sorrow, my fear, my pain. The thing is .. within a couple of hours I was better, laughing and enjoying a tiny piece of gooey butter cake and a glass of juice. I have reinvented, refined and exponentially magnified the term "Mood Swing". So don't worry about me too much, 'kay?

As for being in denial, I might be. I don't feel "sick". I'm not experiencing most of the known side effects of chemo (yet) and apart from being really, really tired all the time, I'm doing okay. This doesn't feel like "cancer" but Dave warns me that it could get a whole lot worse before it gets better. And I know that. But, you know what? I am done trying to 'get ready' for it. It's just a waste of time. Everyday is a new day and I'll just try my best to get through that one before I worry about the next one.

By the way, the picture is from Saturday. Dave and I, my son and his family visited some local friends who have a shooting range on their property. It was a beautiful day and my last opportunity to shoot my gun before the port is inserted on Wednesday. After that, and as long as it is in place, no more rifles for me. I loved being outside that day -- I've been a house mouse for weeks and it goes completely against my nature. I enjoyed our friend's hospitality and watching Jared and Dave play with their boy toys. It was a really good day. And twenty four hours later, I was completely distraught over my hair falling out. And twenty four hours after that, I am practicing with my scarves and contemplating getting "The Wig" out. It's just a journey .. and I'm taking it one day at a time. Life really does go on whether you have hair or not. Amazing, huh?

Goodbye hair ..

..bitterly disappointed

Despite all my beliefs to the contrary, it turns out I am a mere mortal and susceptible to the consequences of chemo just like all my cancer sisters and brothers.

My hair is falling out.

Yesterday, I noticed my scalp was sore just like when, in grade school, my mother made my ponytail too tight. I was afraid it meant something .. and it did. Today when I run my fingers thru my hair, the hair comes with my fingers.

I thought I was prepared but Dave found me staring at a handful of it and the tears just flowed. Fortunately, Dave knows the best cure for hair loss and bit of a broken heart is to scoop me up and let me cry - just for a bit - and then to reassure me that all is well. Hair doesn't define me. For better or for worse ... life goes on .. and this too shall pass.

Tuesday (after a local ear, nose & throat appointment), we're off to Houston for afternoon bloodwork in preparation for my port surgery scheduled for Wednesday. After that, session four of round one chemo. Continued gratitude for your continued prayers. Much love, my faithful Herschel haters ..

Good News/Bad News

The Bad News is that my one remaining living hearing aid died on the way into town yesterday. R.I.P. you expensive piece of plastic crap.

The GOOD NEWS is that I have an appointment Tuesday morning to get my ears vacuumed in preparation for the MDA audiologist to test me for NEW hearing aids. (Meanwhile everyone was very accommodating yesterday even though it's a pain to be around me with no hearing aids.)

HUH?

The Bad News is they stuck me in my thumb yesterday for chemo. Okay, not really my thumb but in a really weird place and, let me tell you, THAT DID NOT FEEL GOOD!

The GOOD NEWS is that that is the next to last IV stick as I am having surgery on Wednesday to implant my port. It's very cool .. and it's PURPLE!

The port will provide access for all my future chemo, CT Scans & MRI. The the port will go under by skin (you can read ALL about it here), and a needle will be inserted but it won't be the "hide and seek" we play with my veins now .. so my hands won't be stuck multiple times or in sensitive places.

And that, don't you know, is the goodest news of all!

Busy Day Tomorrow

Tomorrow we're leaving at 6:30 AM in order to make a 9:30 appointment with my port surgeon staff. Not sure what "port placement assessment" means. Aren't there only so many places it could go? Anyway .. he's up first.

At 11:00 I have my bloodwork for chemo. These are usually quickie appointments unless my veins don't cooperate. Another reason the port thingie is looking pretty good to me.

At noon, I'm scheduled for chemo no. 3. This means I am one quarter thru the first round. Despite my whiny attitude this past weekend, if it doesn't get any worse than it has so far, then I am a lucky girl. I feel pretty useless most of the time but when I consider that my priority should be getting well and not how spic and span my floors are .. then it's easier to deal with.

So, then, the last appointment is at 3:15 for anesthesia assessment (with regard to my port surgery). I always did like counting backwards .. I'm thinking they will push for port placement next Wednesday but I already have three appointments that day and three the following Wednesday so something tells me an overnight is in our future. Fortunately, an overnight is no big deal since we have awesome relatives that not only let us bunk in .. but bring our Maggie girl as well.

My hair seems to be holding tight. I still haven't taken Colleen O'Malley O'Hair out of the bag yet .. but I think her debut will be soon. If only I had an Irish brogue to go with. (An Irish brogue with a Texas drawl .. doncha know.)

Blue and gray - wall to wall.

I wasn't going to share any of this because it's not happy, sunshiney news. And who wants to read about my funky blue days? But then, I realized it's not fair to only share the good days and besides .. the blue days will only make the good days all the more sweet, right?

So, I know that the weather (which, as you can see, is dismal) plays a part in my mood, the truth is I don't feel good today. Didn't feel good yesterday. My bones are achey and my tummy feels like I am on the tail end of too much fun. One New's Year's eve I foolishly sampled cognac after way too much champagne. Know what I learned? You can have even too much EXPENSIVE champagne and cognac doesn't go well on top of it.

I don't like being moody and blue, achey and icky. But I guess that is part of the territory. I felt similarly last weekend and then, Monday, Tuesday and Wednesday, I felt really good. So here's to a good tomorrow and one hopefully filled with sunshine - inside and out.

Port of Call ...

So, MDA called yesterday and threw us into a bit of a tizzy.

Seems they want to install my port for chemo this month. I assumed it wouldn't go in until the first round was finished (mid March) as the Taxol I'm on is vein safe. The second round of chemo (affectionately known as "FAC") isn't so tissue friendly, hence the port delivery.

Given that they have had to use my hand for chemo both time (and took blood there last week as well), I'm not opposed to a little surgical "stick it" place. Dave isn't as happy about having plastics in my body ... see, he's kind of an au naturelle kind of guy.

We're meeting with the surgeon next week for a consult so we'll learn more about it then and, hopefully, Dave will feel better about it after.

Yesterday was kind of a funky day. He was quiet and irritable and I could tell stressed about things. It's the first time he's shown any sign of wear and tear. So I made him a pot of gumbo last night hoping to cheer him up.

I felt great all day yesterday but got pooped when we did our chicken chores. It's always harder in cold weather. But I slept all night (I don't usually) and woke up feeling feisty and fine this morning. We're off to do errands (MEXICAN FOOD) in a bit.

Thanks for all your prayers. Keep 'em coming .. please! We're doing really well and we just want to keep up this positive momentum as long as possible before I fall victim to the usual symptoms of chemo.

Chemo II - Easy Peasy

Chemo 2 (there was a DVD player!)

Tapped my hand again. Ugh.

My backup singers ..

How could I ever do this without him?

All done - piece of cake ..

Da bear .. Love my Saul bear ..

Two middle eastern women in burkas, a Chinese woman, an African American woman and two Caucasian women go into a bar ...

Just kidding .. these were all the women waiting in my suite for chemo today. The older middle eastern woman was the patient, she was heavy but had bad color and clearly didn't feel well. The younger woman was likely her daughter and all I could see were her eyes but they smiled back at mine. There was a man (who didn't sit with them) who, I suppose, was their token male.

The black lady was frail and in a wheel chair. She was cold and requested a blanket before they took her back for her meds. She didn't look like she felt very well either. She sat with her back to me and held her head in her hands mostly. Her son and daughter-in-law were with her but she didn't converse much.

The Chinese lady appeared to be alone. She wore a sweater cap but I bet she was bald under it. She walked like her joints ached and she didn't smile once, even though I smiled at her repeatedly. Oh well. You can't win 'em all.

The white lady was very frail, in a wheelchair, in a turban, in a blanket and never made eye contact with me. I don't think she was much older than me (based on the age of her daughter pushing her chair) but she looked much older. I wonder what she looked like before cancer ....

My entourage filled the sofa. Dave, me, Stevie Nicks, Don Henley, Elton John, Sean Colvin, Lindsay Buckingham, Stephen Stills, David Crosby, Graham Nash ..

Yes. You read me right. Of course they were on my MP3 player .. but still. Nice company, huh? I felt a little guilty (well, more than a little) that I could plug in, turn on and tried (without success) to sit still during "Building The Perfect Beast". I still feel good. Nothing hurts, nothing is sick. I'm not green. I still have hair - sorta. I'm not unhappy.

It's because of you, you know. I imagine each of you as a big Macy's Thanksgiving Day Balloons ... ;) .... and you're all holding me up. It's really cool .. you all have these silly grins and keep bumping into each other .. and there I am, smack dab in the middle with my toes barely touching the ground. Aaaaah. My balloon buddies .. you ROCK!

Rosary Beads, Part I

Except for some very dark times in my life when I couldn't see the forest for the trees, I've been a blessing counter. I have a lot to be grateful for and I am a firm believer in acknowledging the good in our lives.

Though I am a self-declared happy hermit, I do have an abundance of good friends. Some I have had all my life, some since grade school. And some I have only met in the hallowed halls of cyber-land but each one is a treasure, especially now.

I have received so many wonderful emails, cards and letters and each one has reminded me just how lucky I am. You can never fully know how a simple kindness can touch another. These are just a few of my "rosary beads" from friends. They are my touchstones .. my guide posts. They make me smile, humble me and keep me focused on the good things in life.

I am so blessed.

Taxol.101

I'll have my second of twelve Taxol treatments on Wednesday. This week the only symptoms I have had are a 'rumbly tummy', joint aches and fatigue, none of it unbearable. All of it, in fact, pretty mild considering what I have read about other patient's experiences with Taxol. My oncologist, Dr. M, prescribed a nausea medicine and my nurse instructed me to take a pill when my first chemo session was finished. I was to take them every six hours as needed after that only I didn't need any!

So what is Taxol? It's a plant derivative and this is how it works:

Cancerous tumors are characterized by cell division, which becomes out of control. "Normal" cells stop dividing when they come into contact with like cells, a mechanism known as contact inhibition. Cancerous cells lose this ability. Cancer cells no longer have the normal checks and balances in place that control and limit cell division. The process of cell division, whether normal or cancerous cells, is through the cell cycle.

Chemotherapy is most effective at killing cells that are rapidly dividing. Unfortunately, chemotherapy does not know the difference between the cancerous cells and the normal cells. The "normal" cells will grow back and be healthy but in the meantime, side effects occur. The "normal" cells most commonly affected by chemotherapy are the blood cells, the cells in the mouth, stomach and bowel, and the hair follicles; resulting in low blood counts, mouth sores, nausea, diarrhea, and/or hair loss.

The Pacific Yew

Taxol comes from the Pacific Yew tree, a conifer native to the Pacific Northwest of North America. It ranges from southernmost Alaska south to central California, mostly in the Pacific Coast Ranges, but with an isolated population in southeast British Columbia. As I understand it, a semi-synthetic pathway was developed from extracts of cultivated yews of other species due to the scarcity of the Pacific Yew.

Being a bonafide tree hugger, I find it particularly comforting that Herschel is being bombarded by little yew-ninjas that float thru my bloodstream. If having those ninjas gives me a bit of a 'rumbly tummy' I think that is a small price to pay for Herschel's annihilation!

Here's hoping Wednesday's session is as easy as the first. Thanks, as always, for the boundless support of my peeps!

That I would be good ..

How is it that someone whose face you've never seen, whose eyes you've never shared a smile with, who's never been within miles of you .. can know what you need so profoundly?

Thank you, Stas. God Bless Us Bald Girls .. one and all. I love you. We ARE Good.

Piece of CAKE!

I'd only been appointed for a week .. but what a long week it was. I read every paper, brochure & book given me by my doctor. I researched my nausea and chemo meds online. I want to be informed, make wise choices, be able to discuss my care with some intelligience. And, to be honest, I probably went overboard. I vacillated back and forth between being grateful for the poison that would (hopefully) kill Herschel and his minions, and being fearful of the poison that would (hopefully) kill Herschel and his minions.

Before

I was a little apprehensive here .. Would I be sick? Have a reaction? Would my hair suddenly stand up on end, and jump out of my head like a dandelion in late summer when you blow on it? Would Dave fall asleep in the recliner and snore so loudly we were asked to leave? I'm happy to report that NONE of that happened. (The dandelion thing might have been kinda cool, though.)

Herschel's Toxic Cocktail

We watched movies, snacked on jalapeno crackers, unhooked me for a potty break (!!!!! We're so smart!) and I actually napped. Apart from some initial burning at my IV site .. there was no reaction, no pain, no nausea, NADA!

Dave's Zuni Bear

I took some friends with me. My Zuni friends will recognize this as a Saul Yuselew bear. Saul was a tiny little man who claimed to only speak Zuni (when approached by "melikas") and who carved these medicine bears well into his eighties. He died a couple of years ago. This is Dave's fetish that he carries in his backpack. I had given a similar one to my Dad before he died and I now have that one. The Zuni's believe that bears have knowledge of healing roots & berries and white bear are especially powerful. I think White Bear Of The East was pretty helpful today. (I wonder what Saul would think about a melika girl taking his medicine bear to chemo. I think he would have liked it.)

And I took my best friend, head cheerleader, navigator, cookie bearer, juice opener, IV pushing, potty helper too. What would I do without him? I'm so sorry he's having to bear this cross with me .. but I am awfully glad he's here. I couldn't ask for a better source of support and encouragement.

This is my blood pressure. See .. I'm not nervous. That is digital proof that I AM A WARRIOR. Herschel's toxic cocktail doesn't SCARE ME!

Happy it's over
(Just the first of lots of tacky pictures to come, I'm sure. But they can't all be pretty .. right? And I'm not censoring the photos from here on out .. )

And, now we're done. My nurse told me to take a nausea pill just to be on the safe side. A saline flush, removal of my IV and we're outtah here. I felt so good I was hungry for lunch. Fortunately, there's a Luby's on Fannin. Though I napped a little on the way home from the Compazine, otherwise I was fine. Chemo session one, piece of cake. Eleven more in this round to go. Here's hopin'!

The Pros and Cons of Compazine

My oncologist, Dr. M., has prescribed an anti-nausea med for me just in case the chemo makes me sick. (She says it won't. But she also says I am "obese" and we KNOW that's just so wrong.) That's the primary rap for chemo, besides hair loss. No one wants to feel sick and nauseous so I was happy for the rx ... until I read about it being used to treat schizophrenics.

Why is it that the disclaimers on pharmaceuticals always make you think the symptoms aren't as bad as the possible side effects of the drug prescribed to make the symptoms go away? After all, I rather enjoy my life's delusions .. they keep it interesting. Nausea vs. curing skizophrenia .. hm. It's a toss up.

Okay, I'm not seriously skizophrenic .. I'm just ... colorful.

Dear Me:

Cotton candy & Koolaid sunrise

I have been waking before dawn a lot lately. Usually I get up and get busy making breakfast, unloading the dishwasher, letting Maggie out for her morning business. (Dave makes coffee now, so I can't take credit for that any more.)

But it's been cold the last few mornings and with the heater out, leaving the flannel sheets is less appealing, so I just lay there quietly. And think. I'd be better off to get up, freeze my ass off and get on with it. Thinking in the pre-dawn hours when I'm still and quiet is when they come.

Fears.

Worries.

What ifs.

It's the only time I let myself cry a little. Till Dave wakes up and smothers my face with his big old chest and squeezes me so tight it seems absurd to cry over thing at all.

I try to dissect this vague sense of fear so I can clip those wires that make it trip here in the early morning cold. It's not dying. I don't think I will, just yet, and even if I did, God has granted me my mother's wish of raising my babies to happy, healthy adulthood. I can't really ask for more than that. No, it's not dying that I worry about.

It's not being able to live like I want to, like I'm used to, like I know how. I never thought of myself as a vain person but the thought of being bald, puffy from steroids, pale and sickly scares me. It's the complete opposite of how I see myself. And though I know it isn't so, in the dark and cold of my bedroom, I wonder if God is punishing me because I took it all for granted.

I've never once thought, "why me?" Too many times in my life I have seen those with far less than I had and I wondered then, "why me?" Why was I born an American, a Texan (God help you other people .. I don't know what I would do if I wasn't a Texan!), to a loving family who never did without any necessities and had many extras in life. I've never gone to bed hungry (unless it was because I wouldn't eat my green peas), I've never been abused or mistreated (though there was that one time when Jim shot me with his BB gun). I've had a Bible since the day I was born and given every opportunity to know and worship God.

The evening news presents countless stories of torture, abuse, illness. Children left in war torn countries without anyone to love or look after them. To them, hunger is infinitely more familiar than a warm, full belly. Fear and loss so well known I wonder if they can grasp the idea of love and security.

So I shame myself back into dry eyes, and a grateful heart. So what if I look like Telly Savalas? So what if I'm green around the gills for a while. This too shall pass.

When faced with a rough patch in the road I've always had trouble seeing that it was only temporary. But it always was, and I usually came out on the other side wiser with a little more room in my heart and stronger for the experience.

So, if that's true .. then when I get done with this .. I'm gonna be freakin' awesome!

This little pep talk has been brought to you by the demons and angels that change the weather patterns in my head hourly. Life is a dream, shaboom, and cancer ain't no big thang.

For Better Or Worse

This is Dave. 

We met under very unusual circumstances in February of 1994. He made me laugh that day .. and just about every day since. 

That doesn't mean I don't think of sewing him up in the bed sheets while he sleeps and beating him senseless with a baseball bat from time to time. (I'm kidding .. and I didn't think of that. One of Willie Nelson's wives is reported to have done that. I'm sure Willie deserved it. Dave probably doesn't. .... Probably.)

Just this morning Dave was admiring a particular part of my anatomy relevant to this blog. Ahem. Yep. Dave is a boob man. I told him that I don't like them any more. I feel betrayed by my girls. I said, "My boobies are no longer my friends."

He said, "Well, they're MY friends. So they're YOUR friends."

"I don't have to be friends with your friends just because they're YOUR friends!"

He said,"Well, maybe not but you do have to TOLERATE THEM!"

Man. The things I do for him!

Happy New Year - and God bless us every one.(Except you, Herschel.)