No chemo for YOU! NEXT!!

(cross posted from Coffee and Chemo)

I felt lost and helpless.

My doctor reassured me that it was okay to skip this treatment. The chemo is working. That is not the problem. (The proof is in the pudding: my markers are on the LOW end of normal.)

It is the side effects that are worrying.

I did not think the side effects were that bad.

True, my tongue is really bothering me. I feel like I have cuts all over my tongue. Over the past few weeks, I noticed that my tongue started hurting about 2-3 days after receiving the Taxol; it healed a few days after that. This time, more than a week later, my tongue is still sore. I cannot eat any citrus fruit or even moderately acidic fruits (after eating two loquats, my tongue started burning).

In the past, I have felt tingling in my fingers and toes, but not recently. What I do feel, as I described to my doctor, is like my hands and feet are pudgy.

Now, my feet have been swollen for weeks, so it did not surprise me that they feel pudgy. But my fingers also feel pudgy.

My doctors asked if I experienced any difficulty with buttons or zippers. Since I rarely use them, I have not noticed any problems. I have noticed that I am dropping things a bit more than usual. But nothing too terrible. And a few more typos than normal. Again, nothing I can’t live with.

My feet bother me the most. My feet and legs are really swollen and often feel quite uncomfortable. At times, walking is downright difficult. It is unclear to me if the swelling is related to my treatment or from some other cause.

My doctor is primarily concerned about the loss of dexterity in my fingers. He does not want to risk an increase in the level of toxicity that might have a permanent impact on my abilities to function.

He wants to see how my fingers and tongue feel after skipping a treatment.

Depending on what happens this week, he will either recommend a lower dose of Taxol or switching to a different chemo. He wants time to think.

I know that skipping treatment this time is not like the last time. The last time I missed a treatment, it was because the chemo no longer worked. This time, the chemo is working, but the side effects might be damaging.

I realize that missing one week of treatment will have no effect on my prognosis.

Still, it is an emotional blow. I feel like I am not doing anything to fight the cancer, like I am doing nothing.

When the doctor told me that we would be skipping today’s treatment, I wanted him to wait, to slow down, to change his mind. I wondered what I said “wrong.”

The doctor was patient. He explained everything.

Intellectually, I understood.

Emotionally, I still felt stunned, let down, all dressed up with nowhere to go….

I was about to leave when E, the woman who manages the bone research, asked where I was going.

I completely forgot that I still had to receive my bone drugs!

The 20-Year-Plan

(cross posted from Coffee and Chemo)

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Something has been bothering me for a while now.

 

A few weeks ago (or maybe it was a few months ago), during one of my meetings with my oncologist to discuss switching to Taxol, I casually asked if this change is going to “interfere with my 20-year-plan.”

 

My doctor immediately became serious.  “Who gave you that number?” he queried, adding “I did not give you that number.”

 

“I know,” I responded, reassuringly.

 

I completely made up that number.  It is a random number, representing my intention to live with this cancer-thing for a long time. 

 

But then, I got worried.

 

“Why,” I challenged, joking, “is it too short?”  Then, I added, verbalized my fear, “Or is it too long?” 

But my oncologist would not play that game.

“I do not do numbers,” he declared, quite seriously, “You know that.”

I do.  But the Pandora’s Box was open.  Perhaps I was just living in my own little fantasy world.

So, today, I got up my courage and asked, “Am I deluding myself?”

Now, though this conversation has been plaguing me for months, it was not immediately obvious to my oncologist that I was referring to his comment about my 20-year-plan.  So, I reminded him of our conversation and, a little bolder now, repeated my question.  “Am I deluding myself?”

“It’s a bit of a long shot,” began my oncologist. (ouch)  I imagine my face fell a bit. “I am not telling you something you do not know;” he continued, leaning forward in his chair, eyes locked on mine, “you are familiar with the statistics.  But you also know that I do not make predictions.” (yeah, I know)

He cited a patient of his who has been living with metastatic breast cancer for 23 years. (He did not give me any details, of course)

“It is reasonable,” he continued, a bit softer, “to plan for the future.”

And, though it is unusual for him to give his opinion about what I should do, he added, “I think it is right to live your life that way.”

I wish I could remember exactly what else he said, because he gave me a rare compliment about how I am handling living with cancer exceptionally well.  It was really nice.

Then he asked me if I knew I had 18 months left to live, would I do anything different?

I said I would get things in order.  To which he responded, quite sternly, “you should do that anyway, and it has nothing to do with cancer.” 

Then he continued, “my guess is that if you knew that you had only a year and a half left to live, you would accelerate your lifestyle, not slow it down.”

I conceded that his assessment was accurate.  But still, I persisted. “I talk with my children about the future, even about the long-term future.”

I wanted him to understand that it was important to me not to be deluding myself, and also not to be deluding my family.

He got it. 

“Planning for the future is the best thing you can do for both you and your children.” 

He wanted to make sure that I got it too.

I got it.

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!

Hair Today, Gone Tomorrow

(cross posted from Coffee and Chemo)

A week ago, after swimming, I sat in the locker room combing out my hair…. literally.

 

As I combed, more and more hair came out in the comb.

 

It took me a few minutes to realize what was happening.

 

A few weeks ago, I commented to my oncologist that my hair did not seem to be falling out and, perhaps, I would not lose my hair this time either.

 

“Don’t count on it,” he responded, matter-of-factly.

 

I still have not figured out what I want to do.

 

I am reluctant to just “shave it all off,” since I have met women who did not lose their hair with Taxol.

 

Some women just lose the hair on their heads; others keep the hair on their heads but lose their eyebrows and eyelashes; other women lose both; some women lose ALL their hair (including the hairs on their arms and legs). 

 

I had always thought that I would be one of those bold women who just shave everything off.  You know, the “get them, before they get you” approach.

 

If I knew for certain that I would lose it all, then that is what I would do.  But I don’t.

 

So I am waiting is out.  Holding on to what is left.  And wondering, if it all falls out, will I ever have red hair again….

 

 

The Power of Appreciation

(cross posted from Coffee and Chemo)

Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a “Certificate of Appreciation.” It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don’t happen on their own in the chemo ward. There is so much that goes on “behind the scenes.” The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. “For what?” she asked. When I told her, she laughed and said, “That’s history; it’s already forgotten.” After all, they have done so much more since then.

“Well, I did not forget,” I answered back, laughing along with her, “For me, it was a big deal.”