Live Blogging from the Chemo Chair: Cycle 4.1, Back From Vacation and I got Attitude

It’s been a long day and I’m late posting this because my day ended with dinner with my old team mates from Consumer Care. I am again amazed and humbled by the friendship and strength these women offer me.

6-30-15 team dinner

Last week, Gemma opened a big old can of whoop ass on me. I guess I should have been expecting it, because the previous week (my week of whining) was, to say the least, difficult. I’m not going to go into great detail about this, because I’m trying to remain positive. But I will say that I’m a little pissed off at that bitch Gemma for cutting into my vacation time.

Because I was two days late getting my last treatment (Thursday instead of Tuesday), the after effects were two days late (Sunday instead of Friday). And I think this was the worst case of treatment side effects I’ve yet experienced. My muscles ached like I had extreme flu. My appetite was totally AWOL. And I was so tired! I slept for most of the day on Sunday and Monday — and was tired enough to sleep all night, too. It was Thursday before I felt human again. Instead of having a week of Chemo Vacation, Gemma allowed me only four days.

Between Gemma and the extra rain we’ve had all week, I STILL have 2 flats of marigolds and 4 pots of zinnias to put in to the front flower beds (but first they need to be weeded). The one thing I managed to accomplish was to weed whack the grass around our patio — I think the grass had actually grown taller than Tyler’s legs, and he was really giving me some dirty looks when I urged him to “Go potty!”

But now, the good news!

Today is my 10th chemo treatment. That means only 8 more left to do! Ten and a half weeks left until I’m done! I think I’m going to put some kind of count-down widget on the side of the blog.

Results of last week’s CT scan confirm that I’m tumor-free!

Also, according to the American Cancer Society, “CA 19-9 is a substance often released into the blood by exocrine pancreatic cancer cells…” Though not conclusive, knowing CA 19-9 levels can indicate whether treatment is working as expected. Normal levels are <38. I had a pre-surgery level of 88. After surgery it went to 12. It’s now down to 9. Gemma may be a bitch, but she’s working her mojo!

(Moving forward, these will be our measuring sticks regarding Siggy. CT scans every 6 months, CA 19-9 tests every 3 to 4 months.)

My Dermatologist has confirmed that the Scrounge of the Red Rash is actually a side effect of Gemma, and I now have a cream to use against it. Which is  a good thing because the rash has expanded from my left shin to include my inside knee, calf, and duplicated spots on my right leg. It’s like I’m sunburned on selected areas of my legs.

My left foot and ankle are really swollen — so much so that I can no longer wear my favorite shoes (I guess I could wear one of them on my right foot, but that might look funny with my Viking helmet). But my Oncologist is not worried that I’m retaining water. So I’m not going to worry either. I’ll just pull on my compression stockings and pretend that they don’t make me feel like an old woman.

Today, my Chemo Cafe partner is my most wonderful cousin, Annie Lee. We went to Flavors for lunch (see also previous post) — I’m really liking this little hole-in-the-wall restaurant!

6-30-15 Annie and Bev

We had a great time at the Chemo Cafe! I always take my iPad with me so I can at least start my “Live Blogging from the Chemo Chair” post, but today all we did was talk and laugh! We had a great conversation about attitude with one of the volunteers, Sandy. She told us her cancer story — and it’s worth a brief repeat here.

Sandy had just reached her Weight Watchers goal weight, when she discovered she could eat anything without gaining any weight. Imagine that! She was stuffing herself and not gaining an ounce (first red flag)! Then she noticed a lump under her arm (second red flag). Her doctor took a look and thought it might be her lymph nodes working overtime because it was allergy season. But the lump didn’t go away (third red flag), so the doctor arranged for a biopsy. She was in Stage IV Lymphoma.

At first, Sandy was in denial. Her denial turned into anger — at the cancer, at the Oncologist, at anyone who questioned whether she could walk down the hallway to her bedroom without help because her red blood cell count was so low that her strength was sapped. As she found her way through her anger, it morphed into an attitude that she used to fight her way kicking and screaming to remission. She still has two years to go before she can be considered cancer-free, but she’s coming back from cancer that had spread throughout her body! This is amazing!

My take-away from Sandy’s story? When dealing with cancer, whether patient or care-giver, one of our most productive tools in the cancer-fighting toolbox is attitude. Whether it’s anger or humor, faith or enlightenment — anything except giving up and giving in. Find your attitude knowing that for most of us, cancer today is more like a chronic condition than the end of the line.

That being said, there are people out there facing cancer with no hope of remission. Attitude is still important. It gives you the strength to do what must be done.

Six years ago, my Uncle Oliver was diagnosed with Stage IV lung cancer. Radiation and chemo treatments would have marginally increased his life span, but at an extreme sacrifice of his quality of his life. I was his care giver. He told me, “What I want, is to be clean and comfortable.” This became his litany. He made the decision to enter hospice care. This was not giving up. It was making his wishes known. And that became my mission for the short time he had left with us. His wish, shared with me, gave us both the attitude and direction which led to the strength to make it through his departure from this world.

Whether it’s cancer or some other big thing in your life, it’s all about the attitude. Don’t give up and surrender. Find your attitude, find your path.

And when you need an attitude power boost, don’t hesitate to plug in to your friends (and family).  Continue reading

Live Blogging from the Chemo Chair: Cycle 3.3, Transfusion City

For the second time this week, I’m at the Chemo Cafe. And we’re at the half-way point for my treatments! Nine down! Nine to go!

Live blogging from the chemo chair.

Live blogging from the chemo chair.

In case you missed the excitement on Tuesday, my blood count was so low that Nurse Janna was unable to give me my chemo cocktail. Instead, she arranged for me to indulge in chemo’s version of a Bloody Mary: a blood transfusion.

Yep. That's a bag of blood.

Yep. That’s a bag of blood.

I got two units of blood yesterday morning, and today I feel like a million bucks!

Bless her! Cindy stuck with me for the entire 4 hours it took for the transfussion.

Bless her! Cindy stuck with me for the entire 4 hours it took for the transfusion.

(Lest we loose track of my ongoing Chemo Restaurant Tour, after my pair of Bloody Marys, Cindy and I went and had pancakes at The Golden Nugget. Mine were buttermilk and I ate every bite.)

Yum!

Yum!

This is the first time I’ve ever had a transfusion, and there is something just a little disturbing about having two bags of blood pumped into me. You hear so many stories about people contracting any number of incurrable diseases or having allergic reactions because of blood transfusions. It can’t help but make you pause to ask, “Is this really necessary?” Well, yeah, it is. Gemma Chemo is an indiscrimminate killer, and while she’s bombing Siggy, she’s been nuking my red blood cells to the point where I was not able to walk across the room without feeling out-of-breath. So, get over the feeling of weirdness, and be grateful for the miracle  of modern science that allows the nurse to pump me up with blood.

Blood traveling down the tube connecting me to the blood bag.

Blood traveling down the tube connecting the blood bag to me.

The process of getting a blood transfusion is complicated, for your protection. First the lab draws blood to make sure of your blood type. Then they put a hospital bracelet on you which has a code number on it to “unlock the blood bank.” You cannot remove the bracelet — it must be attached to your wrist when you present yourself for the transfusion (I had to wear that stupid bracelet overnight). The bag of blood is secured within another bag, and kept in cold storage until needed (and it felt cold going into my body). To access the bag of blood, the code number from the hospital bracelet is dialed into a “lock” that covers the opening of the outer bag. This is done under the watchful eyes of two nurses. The nurses then double check patient’s name, birthdate, blood type, doner number, lot number and I-don’t-remember-what-else to make sure that the blood they’re about to put into the patient is the right stuff. So much checking, double-checking, and security is a good thing, but it reinforced my anxiety about how many things could go wrong when another person’s blood was pumped into me. But….it’s necessary, so get over it. Be grateful for the miracle that allows the nurse to pump me up with blood.

And let me also add, “Thank you!” to the two nice people who oh-so-generously donated their blood. And once I’m past all this nonsense, I will replace the blood I was given — with interest. I am very grateful!!

Moving on.

Lunch today was at a little hole-in-the-wall place called Flavors Eatery. It was excellent! I had a Steak Wrap-A-Rito which was a flour tortilla filled with steak, beans, rice, and the delicious house apple-veggie slaw. Cindy had veggie pizza — the pizza crust was a folded flour tortilla, baked until the edges were crispy. Delish!!

Today, I made sure I didn’t sit in a cursed chair (I asked the Chemo Nurses before I sat down). My port played nice, the steroids and chemicals were pumped into me without incident, and we even finished up early.

Tomorrow, I should be bouncing off the walls and ceiling with energy due to today’s influx of steroids and yesterday’s influx of blood. Which is really good because last weekend we bought two flats of marigolds and a flat of zinnias for the garden. I’ve been a little worried about how I was going to get them into the ground. Guess that was a needless concern.

Live Blogging from the Chemo Chair: Cycle 3.3, My Chair is Cursed!

With me today is my wonderful and patient friend, Cindy.

For 10 points, can anyone in the studio audience tell me what's wrong with this picture?

For 10 points, can anyone in the studio audience tell me what’s out-of-place in this picture?

Chemo Day started with a lovely adventure to the new Whole Paycheck — oops, I mean Whole Foods. This is Dayton’s first Whole Foods, opening just a few weeks ago. It’s a beautiful store, with great ambiance and a very customer-oriented staff. It will be good for items that can only be found at Whole Foods, but for mundane groceries it’s too pricey for my tastes.

Next door is another new-to-Dayton store, Pet People. I am too cynical to not laugh at the very young store clerk as he rattled off how there are no ingredients from China in the pet food they sell — so I kept walking (laughing to myself) and let him give his little speech to Cindy (she’s more polite then I am).

Lunch was barside at one of my favorite taverns, Doubleday’s.  It would have been even better if I could have had a beer, but that’s not such a good idea on Chemo Day. Of course, once again I forgot to take a food photo. This seems to be a pattern for me.

When we got to the Chemo Cafe, I picked a chair in an area I’ve never sat in before. Nurse Janna got my port hooked up and we had the first indication that my chair was cursed: my port was clogged and would not allow her to draw my blood for testing. This happens from time-to-time. So Nurse Janna got out the Drano (in reality a low amount of clot-buster medicine, the same as they use for people with strokes). This was pumped into the port (not into my blood vein) to dissolve the blockage. While we waited for the Drano to work, a lab tech pulled a testing sample of my blood the “normal” way by sticking my forearm.

Drano2small

(It’s important to point out that the lady in the chair next to me also had the same problem with her port and one of the chemo nurses piped up with “Yeah, we think those chairs are cursed because there’s been issues with the people sitting in them all day long.” Would it have been too much to put a ‘Don’t sit here, chair cursed’ sign on the chair?)

After an hour, the blockage in my port was cleared, but we got the second indication that my chair was cursed: my hemoglobin level is so low that the doctor wants me to get a transfusion. (So the joke I made about not having any blood when Nurse Jenna couldn’t get it to come out of the port was maybe not such a joke.)

Chemo kills blood cells along with cancer cells, so needing a transfusion is not unusual, and explains why I’ve been feeling so melting-into-the-floor tired all week.

Low blood count also means that today’s chemo cocktail has been re-scheduled to Thursday.

The third indication that my chair was cursed: I’m scheduled to get two units of blood tomorrow at 7. In the morning. Because that was the only appointment open. And it will take four hours.

Also, because the Scourge of the Red Rash is still with me (water retention in the left leg, red rash), I’ll be given lasix between the units of blood. So during the two hours it takes for the second unit of blood to pass into my vein, I’ll be making multiple visits to the bathroom to pee (fourth indication of a cursed chair). Not looking forward to that at all.

There are two blessings to this chair curse:

1. Cindy (such a wonderful friend!) is able (and willing!) to be my driver for the transfusion (I can’t drive myself), and for the re-scheduled Thursday Chemo Cafe visit.

2. Between the transfusion and the chemo cocktail steroids, I’m going to be so buzzed with energy on Friday that I will probably get all my garden beds weeded and the three flats of marigolds sitting on my front porch transplanted by lunch leaving me the rest of the day to thoroughly clean the house and do the grocery shopping for next week.

Is it any wonder that I’m looking forward to chemo vacation next week?

Live Blogging from the Chemo Chair: Cycle 3.2, A Big Glass of Whine

This has been a whiny week. And I’m about to whine some more. Or rant. Can’t be helped.

Thank you to Penn State's Applied Social Psychology blog.

(Thank you to Penn State’s Applied Social Psychology blog.)

First, with me today is the lovely and charming Shelley. I don’t think I’ve ever mentioned that my wonderful Shelley is a 6-year breast cancer survivor — so she’s like my lucky talisman. She has given me amazing support all through this battle I’m fighting, from the very first day. It’s a joy to spend time with Shelley because she’s such a positive person. And today I find I need some positivity.

Shelley and Bev

Spoiler alert: I’m about to have a pity party.

I’m tired. I’ve been tired all week. I feel like I was cheated out of last week’s steroid buzz because it wasn’t really there on Wednesday. I had half a day of energy, then I crashed and burned. All I want to do is nap. I’ve slept the week away. I’m like a zombie, except instead of “Brains!” I’m moaning “Snooze!”

And don’t get me started on the hot flashes. I thought I was past all that menopausal nonsense, but apparently I was wrong. Three or four times a day, I get over-heated, sweat dripping from my hair. I’ll think to myself, “The air conditioner must not be on.” But it is. Set low enough that my mom is using a blanket. And Tyler is snuggled up to her as close as he can get because he’s cold. And I’m dripping sweat.

So, between feeling tired and sweating like a pig, this past week has been uncomfortable. And annoying.

I measure my days in what I get done. Weed the garden. Pay the bills. Change the filter in the furnace. Buy groceries. Take Tyler to the vet. Write a blog article. Prior to old Siggy taking over my life, I could do all of these things — and more — in one day. Now, I feel triumphant if I can get just one thing done each day.

A huge shout-out needs to be given to all the people (like my pal Shelley) who hold down a full-time job while they do chemo — how do they do it? I mistakenly thought I’d have no problem working (or simply getting my business off the ground) while I did chemo. No. Not happening. So now I feel like my professional life is slipping through my fingers like a Player slipping out the back door after a one night stand.

My job as a social media expert in the pet industry officially ended in early May. I’ve held a job since I finished my undergraduate degree (back in the olden days). Unemployment feels weird, and I’m not ready to embrace being a retiree. It’s time to reinvent myself for Act III of my life.

From my coloring book.

But lately, all I want to do is nap. Or color in my adult coloring books. Or read trashy vampire/werewolf novels.

What I'm currently reading -- This is an excellent series if you're into werewolves.

What I’m currently reading — This is an excellent series if you’re into werewolves.

If I’m honest with myself, I’ve been slacking since my surgery in early February. And I worry that I’ll never get back to the discipline of regular employment.

I keep telling myself that I’ll write my new business plan tomorrow. I’ll put together PowerPoint slides to entice a new client tomorrow. I’ll read all those expert social media articles tomorrow. Anybody seeing a pattern here?

Which brings me back to my time today with Shelley. She’s been pointing out to me that I’m allowed to be tired and do frivolous things (few things are more frivolous then coloring or reading werewolf novels), because I’m going through an intense treatment plan. As of today, I’ve had a total of 8 chemo treatments in 10 weeks. Even though Gemma Chemo is an ally in my Siggy battle, she’s still a poisonous bitch and she doesn’t care that she’s destroying healthy cells alongside the cancer cells. So of course I’m going to be feeling tired (and maybe a little depressed) because my blood count is down. There will still be time for me to build my social media business, after I re-build my red blood cell count. The point of the chemo treatments is to give me more time for my Act III.

Regina Brett, another cancer survivor, summed it up:

Going through chemo is like investing money in a retirement account. You feel the hit right now, but later in life you get to reap the benefits – by still being alive.

Regina is spot on. And everyone needs a Shelley in their life. Thank you, Shelley, for talking me down off the ledge today. 

I’m officially ending the pity party and making this a No-Whine Zone.

You can buy this magnet at CafePress. Click the image to take you there.

You can buy this magnet at CafePress. Click the image to take you there.

Live Blogging from the Chemo Chair: Cycle 3.1: Pooping Correctly?

The view from today's chair

The view from today’s chair

Here we are, once again, dancing at the Chemo Cafe.

With me today is my pal, Pam.

We had a delicious lunch at Chicago Gyros and Dogs, and, as in weeks past, I  forgot to take photos of the food. Suffice it to say, the gyros was tasty and I ate it all.

Since my battle with Siggy started, I have had a certain focus on — okay, I’ll admit to an obsession with —  my bowel movements. A couple weeks ago, there was an article in The Guardian (a UK news site) regarding how we’re all pooping wrong. HUH??? Yep! A researcher in Germany wrote a book about it called Charming Bowels (by Giulia Enders, obviously another person obsessed with BMs), where she details the reasons why sitting on a toilet to poop is just plain wrong.

Yes, the progress of the Industrial Revolution which resulted in our pooping while sitting on a potty is probably responsible for all kinds of medical problems including things like piles and colitis. Instead of sitting on the toilet, we should be squatting when we poop.

There is a muscle called the puborectalis located between the colon and the rectum. It creates a kind of kink in the channel which keeps you from pooping in your pants by “choking” the rectum — even while you’re sitting on the toilet. When you squat, the puborectalis is relaxed allowing waste to more easily pass.

Thanks to http://indinature.com/

Thanks to http://indinature.com/

I asked my Oncologist about this when I saw him yesterday. He admitted to having heard of it, but gave me that smile of “I think this is probably hokum, but it appears harmless and if you think it works for you then go for it.” I have to say I was a little disappointed that he did not share my enthusiasm.

I’ve been discussing sitting versus squatting today with the Chemo Cafe Nurses. They’ve heard of squatting instead of sitting, and seemed more receptive to the idea than my doctor was. One of them actually mentioned a product that I had already come across called the Squatty Potty — a couple of my friends have told me that it really works.

Squatty Potty CEO, Robert Edwards and his mom, Judy Edwards were on Shark Tank, Season 6. This is a long video (14-minutes) but the first two minutes are worth watching for a really concise explanation of the concept of squatting instead of sitting. 

So, here’s my confession: After reading the article in The Guardian, I decided to give squatting a try. I have a small step stool which I’ve been using for the past few days when I do my morning duty. The step stool (using the word “step” to differentiate from stool that comes out of my body) puts my knees higher than my waist when I sit on the toilet, which effectively gives me a squatting posture. And I feel a difference.

No hokum, it’s an easier go.

 

(Hat tip to IFL Science: http://www.iflscience.com/plants-and-animals/western-pooping-bad-your-booty)

 

 

Second Chemo Vacation

Ah! Here we are at the end of my second chemo vacay, and I confess that I’m not looking forward to Tuesday.

My Buttercups are in bloom!

My Buttercups are in bloom!

This week has been delightful. Coming into it, I had no constipation issues to recover from, giving me a couple of extra days of “no symptoms.” I start to get tired towards late afternoon, but I have decent energy reserves in the morning and after lunch. My hair loss continues — and I continue to be annoyed that it’s the hair on top of my head that’s falling out and not the postmenopausal hair above my lip.

Geraniums

With two cycles of Gemma Chemo treatments out of the way, I can make observations on my quality of life during chemo. Chemo Week starts on a Tuesday, and I wake up feeling mostly ready for the battle. Wednesday, I’m under the influence of the steroids I got in my Chemo Cocktail on Tuesday. If I have anything that requires physical labor, this is the day to get it done. Midway through Thursday the steroids start to wear off and by dinnertime I’m yawning. Friday seems to be my crash and burn day — I feel “blah” with very little energy. Saturday and Sunday get better and by Monday I start to feel like there’s more to life then snoozing on the recliner. Repeat for two more weeks and then it’s vacation time.

Regarding bowel movements (because you know I can’t do a blog post without mentioning poop), I’ve found that if I’m proactive by drinking my Phillips at bedtime on Tuesday, then Wednesday is not so “hard” (get it?) to manage. I’ve also found that I do better if at least one of my meals (usually dinner) is a large salad (for fiber content). I’m still fine-tuning the dosage amounts for the Phillips and the stool softeners. Yeah, I know it’s gross. But who else is going to tell you the truth about this if not me?

Me and Mr. Phillips. It's a beautiful relationship!

Me and Mr. Phillips. It’s a beautiful relationship!

Nearly every day, by mid afternoon, I get a bad taste in my mouth. I don’t know how to describe it. I understand that some chemo therapies give the patient a metallic taste —  but that’s not what I get. It’s just something nasty on the back of my tongue, at my jaw. Brushing my teeth helps, but it’s not a cure. Eating lots of Altoids helps — but then anything I consume afterwards has a peppermint flavor. I’m deducing that it has to do with my digestion — since it’s not there first thing in the morning, appearing after I’ve had a couple of meals — and I’m hoping that it’s due to the chemo and not due to the parts of my digestive system that were removed back in February. I guess I’ll find out in September when I’m done with chemo.

I have trouble sleeping during my chemo weeks. I wake up two or three times during the night (which adds to my feeling of exhaustion). These last few days of chemo vacation, I’ve slept right through to 6:30 AM. I’ll be going into Chemo Cycle 3 feeling somewhat rested, as if I really did take a vacation from work.

My roses are blooming

I had a red rash on my hips around the third week of Chemo Cycle 1, and ended up with a red rash on my left leg around the third week of Chemo Cycle 2. The Oncologist has classified both of these as allergic reactions (but not an allergy to Gemma Chemo). After nearly a week of vacation, the Red Rash Scrounge is nearly all gone, though my left ankle and foot are still a bit swollen. I’m a little anxious to see what kind of rash develops during Cycle 3. And where it will be located.

I’ve started wearing compression stockings, after two of my doctors made the recommendation. So now, when I go out of the house, I have on my compression stockings, long pants, a long-sleeved shirt, and a wide-brimmed hat. I’m dressing like an old lady to protect my skin from the sun. And because I’m always a little tired, I tend to walk slower than my usual fast gait. This is something I need to address, because I don’t feel like an old lady. I’m going to experiment with turning my slower gait into a cougar-like slink.

yellow rose

In spite of all this sh*t, I find I’m smiling more. There is nothing wonderful about chemo, but there is something wonderful about being forced to slow down. My flower beds look beautiful. I have a lovely camping cot on the patio where I take naps in the afternoon. I’m spending time with my friends. I’m having a great time just relaxing and going with the flow. I don’t think I’ve ever had the opportunity to simply enjoy living in the moment.

My patio cot

The view from my patio cot.

Dinner with my pals!

Dinner with my pals!

Yep. Something good coming out of something bad.

 

The Scourge of the Red Rash

On Tuesday I had a red rash on my left leg which got ultrasounded (is that even a word?) to make sure it wasn’t a blood clot — which it wasn’t. On Wednesday, the rash looked like it was going away. But on Thursday it was back with a vengeance and even looked like it was starting on my other leg. So I went to the doctor. He thinks it’s an allergic reaction to something, but because it started before my Tuesday chemo, he says it’s not an allergic reaction to the chemo — which would be a real bummer. In my opinion, the chemo has a hand in it though, because it’s the chemo’s action of screwing with my immune system that’s made me susceptible to an allergy that under normal circumstances would not bother me. So I’ve got a course of prednisone to go through, and I’ve added Claritin to my daily pills. It seems to be helping because the red patch is getting smaller. It feels like my legs have been sunburned on the inside of my skin — you know, that nagging, uncomfortable burning you get when you allow the sun to cook your skin? And the red rash looks a little like a sunburn might look. But it doesn’t cover my entire leg (as the “sunburn pain” does), only a small patch on my ear shin.

This is the second allergic rash I’ve had. During my last cycle, I had some red splotches on my hips. Didn’t know what triggered them, either.

Tomorrow our favorite speciality super market, Dorothy Lane, is having a sale on lobster — and we had already decided we were going to participate. Personally, I think lobster is too much trouble — what with cracking the shell and pulling the meat out and the fishy smell and the mess — but my mom loves it. It’s part of our heritage (which is another story). So, fingers crossed that I won’t have an allergic reaction to shell fish. By this time tomorrow I could be looking like I was the one boiled. Instead of the lobster.