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Live Blogging from the Chemo Chair: Cycle 5.3, Blessings

8-20-15 CHEMO COUNTDOWN 4-3Blessings. The patio screen door open to a refreshing, bracing early morning coolness — along with the birds’ songs. Listening to the cicadas chatter. Seeing the sunshine streaming through the window. Hearing my mom out in the kitchen making us a pot of tea. The smell of toast. Seeing the pinks and blues rippling through the sky as the sun comes up. Snoozing in my recliner with just the right amount of extra pillows under my legs and a comfy quilt warm against the early morning coolness. Puppy snoozing on my lap adding to the cozy. Realizing that in 28 days this 6-month chemo combat will be complete.

Sun through the stain glass in our windows.

Sun through the stain glass in our windows.

Lap pup.

Lap pup.

Early Thursday morning, I was counting some of my blessings.

Actually, counting my blessings has become a daily habit. One I’m going to do my best to keep.

Chemo Thursday was beautiful. Like a fresh fall day. Sunny, yet chilly enough to restrain perspiration. Crisp. I love days like this.

Cindy and Bev selfie.

Cindy and Bev selfie.

8-20-15 Lovelys CindyMy Chemo Date was the marvelous Cindy. We had a charming lunch at Lovely’s (SUCH an appropriate name!) Farm Market. I had a fried bologna sandwich–which was the totally wrong choice for someone with high blood pressure. But it was such a beautiful day, and (I confess) 8-20-15 Lovelys bolognaI LOVE fried bologna! I made up for my bad decision by having tomatoes on my sandwich–which may have been the wrong decision for someone with acid reflux. But it was a serving of veggies — which is a good thing, right? And it was on whole wheat bread — that’s a winner, right? Add in a side of confetti corn, which was lightly dressed sweet corn stripped from the cob mere hours ago and mixed with more fresh ruby-red tomatoes (ah! the sweetness!) and some green peppers. Oh! It was total heaven!

Before we left, we took a look around the “market” part of Lovely’s — right now, heavy on baked goods, tomatoes, corn, and green beans. I purchased a dozen fabulous molasses cookies (all gone in two days!)

(Sidebar: My fascination with molasses cookies originated during my undergrad years at UW-Wisconsin. When in a baked goods situation, I am forever on the lookout for molasses cookies like the ones I used to get from a little pushcart that occupied a corner of Library Mall. Omigosh they were good! The only bakery I’ve ever found that made better molasses cookies was in Brattleboro, Vermont–they tasted like the cookies of my memory, but they were better because they were the size of dinner plates!)

After our foray into the farm market, we were off to the Chemo Cafe.

My red blood cells and hemoglobin numbers continue to live in the basement, but not so low as to deny me my Chemo Cocktail. And it was Chemo Nurse Janna’s birthday! Luckily, Lovely’s also sells fudge–and Janna loves fudge!

8-20-15 Chemo Cafe bloggingI didn’t get much writing done this week while sitting in the chemo chair–so I guess calling this “live blogging from the chemo chair” is a bit of a misnomer. Real life continues to intrude on the plans/goals I set for myself. Like the goal of publishing my chemo chair post immediately as it happens.

The thing is, another blessing I’ve discovered (and am starting to cherish) is the simple act of talking with the person who brought me to chemo. Having a real discussion about things that interest us that are not part of a job we’re doing for our employer. Is this what retirement is like? Cindy and I had the best time just talking about goofy stuff — like the recent customer service rep hacker/troll on the Target Facebook page (did you see this? It’s both hysterically funny and horribly frightening all at once.)

Three mums now sit on my patio patiently waiting for their new home.

Three mums now sit on my patio patiently waiting for their new home.

We talked about gardening, and how I want to put in a few mums for fall color (“We can stop and pick up some on the way home!” said my pal Cindy with obvious delight.) We talked about a baby shower she’s hosting for a relative and what she did for decoration. And so many other mundane topics.

Over the past few years, I’ve been so busy being busy with work that I’ve gotten out of the habit of talking about things that have nothing to do with my job. Until Siggy slapped me in the face. I refuse to call this cancer a blessing, but the joy I’m rediscovering because I’ve been forced to slow down and reassess what’s important certainly is.

All these months (since February!) I’ve been spending in the slow lane have underlined a concept I’ve forgotten: Living in the moment is a priceless blessing.

I am wallowing in the pleasures of my blessings.

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?

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.

5-30-15 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!

AltoidesNearly 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

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.

5-30-15 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

My patio cot

The view from 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.