Sewing Circle

(cross posted from Coffee and Chemo)

 
A few months ago, I realized that I could further “take advantage” of my chemo day.

Most of the time, I am just sitting around. Even when I am receiving my treatments, my hands are free because of my port.

It occured to me that I could use that time for mending.

Now, lest you get the wrong impression, I an not the domestic type. Far from it.

The only reason our mending every gets done is that my mother, God bless her, is happy to do our mending when she comes to visit. Still, there is so much that collects, and my mom has other things to do besides sitting around mending all day, that the mending pile continues to grow. During her last visit, we were so busy, my mom did not get a chance to mend even one item.

Afterwards, I was struck by the thought that my parents’ next several visits might be very busy. What if my mother does not have time to do any mending?!?

Then I had my epiphany: bring my mending to chemo!

I put together a mini sewing kit, with all the necessities: basic thread (white, black, brown, and blue), needles, scissors (a small pair, with dull ends, like the kids used in first grade), and even pins (stored in a Tic Tac box). Everything fits into a small, zippered pouch.

My friend, LS, who is, thankfully, finished with her chemo, thought it was such a great idea that she brought her mending too! Another friend/patient saw us, and brought her chemo the next week as well. That week, we all sat next to each other and had what can only be described as a “sewing circle.”

Every week, I place my sewing kit and an item or two of clothing that needs to be mended in a tote bag. Now, I also bring my sewing bag to doctor’s appointments and other places where I can expect to sit around waiting.

During the first week or two that I brought my mending to chemo, I mended a skirt that my eldest gave me several years ago — it now fits my youngest!

For years, the kids were despondent when they showed me something that needed a stich or two, knowing that giving me their mending was practically equivalent to throwing it into a black hole. Now they come to me, with hopeful looks on their face, and the innocent plea, “Ima, can you fix this?”

Even Moshe, who probably suffers most from my domestic shortcomings, has benefitted from my newfound sewing proficiency.

The thing is, even though I do not enjoy these domestic chores, I have a deep sense of satisfaction when I return my children’s items, almost as good as new.

Occasionally they come to me, distressed, showing me a tear or hole in their favorite clothes (0ften made from delicate materials).

I am proud to say that I have done truly wonderful fixes.

Most recently, I returned a skirt to my eldest daughter, who is probable the most sensitive about how her clothes appear. She took it and spent several seconds searching for the fix. “Where was the tear?” she called to me. When she found it, she was really impressed.

My non-domestic heart swelled with motherly pride.

Taxotere (and Herceptin) — The Next Chapter

(cross posted from Coffee and Chemo. You can read the backstory here.)

 

I thought it would be simple.

I was wrong. Again.

But I am jumping ahead….

****WARNING: LONG POST****
(feel free to just skip straight to Part II)

——————————————————–

PART I — Herceptin

Because new drugs are usually given a bit slower than normal, the nurses were anxious about finishing the Herceptin early so that I could start the Taxoter as soon as possible. Now, having been around the chemo block one or two times already, I already figured this out on my own. So when D came in and suggested we up the rate of my IV drip to 130 (instead of 120), I immediately agreed.

A few minutes later, my oncologist came into the day room… to talk to me.

“What’s wrong?” I asked, since he does not usually pop in to chat.

With a very serious face, he told me how important it was to finish the Herceptin on time, otherwise I would have to come in another day for the Taxotere. He knows how much I dread coming in another day. Then he suggested that I follow D’s recommendations for how fast to administer the Herceptin.

Since I was doing that already, I saw no reason to argue.

After he left, I realized I neglected to mention that I already felt some mild chest pain, which is the reason I get Herceptin slowly in the first place.

I was a little nervous, but I figured I would mention the discomfort to D if/when she came in to up the rate. Since the Herceptin was almost finished, I suspected this might not even be an issue. I have already learned not to make a fuss out of something that might not even happen.

And, in fact, neither D nor anyone else suggested raising the rate in the few minutes that were left before the Herceptin finished, sometime between 12:30 and 1:00.

THAT was the easy part of the morning.

——————————————————–

PART II — Taxotere

I already knew that I would need to wear special “freezer” gloves and slippers during the Taxotere treatments, to prevent my fingernails and toenails from turning blue.

I was not prepared for how FREAKING COLD they would be!!! (…trying to keep my blog family friendly here….)

At first, the tip of one of my left fingers started tingling. I wondered if it was from:
1. neuropathy
2. Taxotere
3. the FREAKING cold gloves

Then the fingers on my right hand started burning.

I ruled out neuropathy, but I still was not sure which caused the burning sensation, the Taxotere or frostbite.

Finally, it was so painful, I called a nurse. The FREAKING gloves were FREEZING my fingers!

The nurse offered this simple advice: when my fingers get too cold, remove them from the gloves until they warm up.

She added another suggestion: only stick my fingertips in the gloves; keep the rest of my hands and fingers outside.

I asked if it was absolutely necessary to keep my fingers in the gloves. The nurse said that I had a choice: cold fingers or blue nails.

Now, I have never been particular about the way I look. I do not use make-up, I wear simple and comfortable clothes, and even now I walk around my house with my thinning hair out in the open. But to openly choose to have ugly blue fingernails was too much. I took a deep breath, held back my tears, and accepted that I would just have to learn to accept the freezer gloves.

It took TEN MINUTES to warm up my fingers enough to stick them back in the gloves!

My trials and tribulations were far from over.

A few minutes later, my chest started hurting. At least, I thought it did. I was not sure. I thought I felt pressure on my sternum. But maybe I was imagining it. Or maybe it was the same pressure I felt earlier from the Herceptin. I could not tell.

So, I waited.

A while later, I thought the pressure felt a little worse. But I still was not sure.

So, I waited.

Meanwhile, my chemo date valiantly tried to entertain me. Luckily, she is one of the most positive and good natured people I know, so she did a great job of distracting me.

Still, I felt the pressure getting stronger. And yet, maybe it was all in my head.

So, I waited some more.

Eventually, the pressure was downright uncomfortable.

However, I still was not sure whether the pressure was from:
1. the Herceptin
2. the Taxotere
3. my mind (perhaps stress related)

I did not want to make a fuss. (I know this is surprising for those who know me well, but I have long since discovered that I become rather weak-kneed when having to confront members of the medical community)

Finally, I could not take the pain!

I felt like an elephant was sitting on my sternum!

My wonderful chemo date told me I looked green. She kept reminding me to keep breathing. I had not even realized I was holding my breath (to try to alleviate the pain).

I called the nurse, who stopped the IV and went to consult my oncologist.

For the second time that day, my oncologist came to see me in the day ward. He asked me a few questions and turned around to go.

“Wait,” I called after him, “What’s the plan?” he responded, “I think I want to do an Echo and check your heart.”

“I am not sure;”

Not what I wanted to hear.

He decided on an EKG.

With time, the pain lessened. The EKG was normal. The oncologist determined I was good to go.

Chemo resumed.

So did the pressure in my chest.

This time I did not wait before telling the nurse. She slowed down the drip. I felt mild relief.

Periodically, different nurses came in to check on me. I answered them all the same: the pressure is unpleasant, but I can manage.

Meanwhile, I switched the freezer gloves and slippers at least twice, carefully making sure that I did not freeze my fingers off.

I cannot begin to tell you how relieved I was when the Taxotere finally finished.

This was NOT a fun chemo day.

Next time, I will know a bit more about what to expect. That should make it easier, even if I have the same symptoms (I sure hope I won’t).

I still feel pressure in my chest, but not so bad.

I have slight itching, but nothing too severe.

I am exhausted!

This stuff better work!!

Cancer vs. The Common Cold

(cross posted from Coffee and Chemo (here and here))

It occurred to me that having a cold might affect my ability to receive chemo tomorrow.

I emailed my oncologist, who wrote back: “come and we will decide tomorrow–sounds like you will get a little break”

What does that mean?

Do I have the nurses open my port as usual?

I am scheduled to receive both Taxol and Herceptin. If “we” (and by “we,” I mean “he”) decide to postpone treatments, do we postpone both medications? By how long? A few days? A week? What is a “little break?” (To me, a “break” would be at least a month! We know that is not happening, as we have already established (here) that we can not postpone the Herceptin by more than a week)

Last week, my doctor told me that we would evaluate the efficacy of my treatments in the next two weeks. How does postponing treatment affect our ability to evaluate if the drugs are working?

All these questions, just because of a stupid cold, from which, we agreed last year (see here), cancer patients should be exempt!

It seems that when push comes to shove, the common cold trumps the cancer card!

——————————————————————————————————–

Apparently, a “little break” is one week.

I received Herceptin today, but no Taxol. My next Taxol treatment will be next Thursday.

I was a little nervous about skipping the treatment, but my oncologist was pretty insistent. When I pressed him about it, he offered to give it to me if I was willing to sign a waver, taking full responsibility for any possible complications. I politely declined, to which he responded “I thought that’s what you’d say.”

So, I will focus on kicking this cold, which is pretty much taking up all my energy and then some.

I felt a bit better this morning, but by the time I got home I was wiped. I went straight to bed and slept for three hours!

Haircut

(cross posted and edited from Coffee and Chemo)

 

I was hoping that I would be lucky this time too.

Despite a few days of hair loss, most of my hair remained on my head during the past year or so of chemo. So, when my hair started falling out this time, I hoped that it would stop after a few days. (Never mind that my doctor said it would probably not fall out last time and that it probably would fall out this time — feelings are not rational)

It has already been two weeks, and every day I comb out more hair.

A few days ago, I posted here about losing my hair. Mary Beth Volpini, commented on the post:

I read a great saying a long time ago …
”If you don’t know what to do…don’t until you do.”

The simple truth of those words touched my inner soul.

I was not yet ready to say good-bye to my hair.

I was torn. Though I was not yet ready to “cut it all off,” I wanted to save part of my hair. I wanted to save my braid, which was getting thinner and thinner every day. I did not want to wait too long.

The other night, I watched several YouTube videos of women with cancer who shaved their heads.

Several mothers chose to involve their children in the shaving/cutting. I thought this was a great idea. When I first suggested it to my girls, they were appalled by the idea. I let it go. Not every good idea is good for every family.

Today, after swimming, I had to ask a friend to help remove all the hairs that fell off and stuck to my back. That was it. When she asked me “why don’t you cut it short?” I realized the time had come.

On our way home, I mentioned to A, who was the only child with me, that I wanted to cut off my braid tonight. We talked a bit about our feelings.

“It makes me sad,” A said sweetly, “I like your hair.”

“Me too,” I admitted.

We were quiet for a few moments. Then I asked her, “Would you like to help me cut it off?” Without hesitating, she answered “yes.”

When I got home, I told Y that I was going to cut off my braid and that A was going to help cut it. Then I asked her if she wanted to help cut it off too. To my surprise, she also answered yes right away.

I then asked MD, who answered just as quickly “I am not part of this.” We all laughed.

I told Moshe, who asked, surprised, “You want to do this now?”

I was hurrying to get ready for a simcha (celebration), but the timing was right.

“I want to do this now,” I answered, definitively.

I got our our barber shears and gave them to Y, who began cutting off my braid. Then, she passed them on to her sister. While A was cutting, Y came around to give me a hug. I felt surrounded by love and caring.

It took less than five minutes. I combed my fingers through what was left of my hair.

“It looks cute,” Y said. Then she noticed that the ends were not even. She took the shears, studied my face, and evened out the ends. “There,” she stated when she was finished. “You should put in some clips to hold the hair out of your face,” she added, and ran to get some for me.

And then it was done. I went to get dressed for the simcha.

“Nice haircut,” said one of my friends, later in the evening, noticing the short ends sticking out from under my scarf.

I smiled, and she realized why I cut it.

“Still,” she said, acknowledging the loss, “it looks good on you.”

Journaling in Color

Journaling is not new. Blogging is a new form of journaling. For those of us right brainers journaling in color or even without words is also effective. I have been using this quick way to process my daily emotions for awhile now. When I listened to the Dateline special on Randy Pausch I especially liked the questions he asked his children at night. “What was the worst part about today? and then, What was the best part about today?”

I ask myself these same questions, only I answer in color:

What was the worst part of my day?

 What was the best part of my day?

How am I feeling right now?

What is my hope for tomorrow?

It is a very quick way to get your emotions of the day out onto paper. Sometimes I write at the bottom what I was expressing and sometimes I just put the colors down, there is no “right” way to do it.  I like oil pastels as they blend when one color goes over another, but you can use colored pencils, markers or crayons. It is more about the process than the end result. The most important thing is just to express your emotions. This method can even work with small children. I used to take my sketchbook to chemo with me. I usually could not read words for very long after the chemicals started as they induced migraines, but it helped to just express myself with c o l o r. 

After I read Nicole’s post today… I thought they could all use a few minutes with some color to express their stress of the day…..