Medical Update: Two Down -- Now What?

So, I have just "used up" my second chemotherapy.

I will not be receiving treatment tomorrow. Instead, my doctor is squeezing me in for an appointment, so we can determine what my next treatment will be.

This past week, I noticed the chemo (Taxol) affected my hands more than I realized. In addition to a loss of dexterity, I lost much of the strength in my fingers. I find it very difficult to open up a bag of nuts or chips. I have to ask my kids to do it for me. I also have difficulty opening bottles and need to use a grip to give me added strength. Usually, I just give the bottle to someone else to open.

My hands feel more or less the same as they did last week (pudgy), and I do experience periodic tingling in my fingers and hands.

My grip is affected and I constantly feel like I am about to drop things. When I had to put eggs away in the refrigerator, I was so careful, lest I inadvertently drop an egg and have to clean up the gooey mess. (It is yucky, just thinking about it!)
My hands are definitely not so happy. I do not see an improvement from last week to this. I do not want to risk this becoming a permanent condition.

I would not be happy if my hands felt like this for the rest of my life.

That was really the deciding factor in finishing with the Taxol
My tongue is also still not happy, but it is better than it was. At least I feel that it is improving.
My feet are still bothering me, but I cannot tell what discomfort is coming from the inside. They are so swollen, and so very uncomfortable.

I saw my GP, about my cough and about my feet. He still thinks the cough is caused by acid reflux. He put me on a stronger anti-reflux medicine (Pantoprazole) for the next two weeks. I am wondering if the reflux will lessen when I get off the Taxol, and if that will affect my cough.

He also sent me for a chest x-ray, an EKG, and an Echol (which I already did for my oncologist). I think everything is normal.

The CT that I did before Pesach also appears to be normal. The areas of the bone tumors appear bigger, but this is also consistent with the extra bone density caused by the bone strengthening drugs (Zomera/Denosumab).

My markers are normal, so we are not worried.

I am doing an MRI in a few weeks and I will do some sort of full body scan so we have a baseline before starting with the new drug.

And, of course, that is the big question now: to which chemotherapy will I switch?

The two drugs my doctor is considering are Taxotere and Xeloda.

He told us to check them out on the internet. We did. Moshe spent most of today reading up on these drugs and some other derivatives of Taxol.

We did our homework.

We have lots of questions for when we meet with the oncologist tomorrow.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

How Much Do You Want Your Doctor to Smile?

During yesterday's meeting, my oncologist needed to make a call (to someone else), and warned me that now I was going to hear him when he's mad.

I commented that he was probably scary when he was mad, adding that he's a bit scary even when he's not mad.

He was a little taken aback and I felt bad for not thinking before saying what was on my mind.

"Do I really scare you?" he asked.

"Yes," I answered meekly, wishing I could be anywhere else, but not wanting to lie.

"Then you should find another doctor..." he advised.

PANIC -- did I just mess up my relationship with my doctor, of whom I am in awe?!?!

"But I like you," I quickly responded. I should have added "and I trust you, and respect you, and like that you are available on email, and answer my questions, and don't laugh at me, and..." I could have gone on and on.

It is not so easy for me to find a doctor I like, and I like my doctor.

"So, why am I scary?" he persisted, "is it because of me or because of what we discuss."

That was a fair enough question.

"I don't know," I answered honestly, wondering if I would be less intimidated if we were not talking about cancer.

I tried to switch the conversation, but my doctor sincerely wanted to know. "Tell me, so that I can improve."

So, I thought about it and suggested "you don't smile enough."

This surprised him. "Really?"

He noted that many patients want their doctor to look serious.

I can understand that. We discuss serious things. I don't think I would want him to be joking around all the time. So, what do I want?

Later, I asked my date-for-the-day, who is a former cancer patient, what she thought. "I don't want my doctor to smile more; I want him to be serious."

Hmmmmm

Smiling to me reflects optimism, a faith in the future.

My doctor always looks so serious, especially when he is walking around. I know that his head is in a million places, thinking, processing, exploring, and trying to meet the needs of all his patients. I know that cancer is serious business, and the news is not always good.

Sometimes, I'll catch his eye, and he'll raise an eyebrow. I never know quite what it means. Usually I interpret it as "yes, I see you; no time to stop; you know how it is here...." But sometimes I wonder if he is thinking "oh no, you don't have another question, do you?"

I guess I would like to see him smiling when he is walking around. Or, maybe, I just want him to smile when he sees me.

Smiling is inviting. Perhaps that is the problem. Maybe if he smiles more, then everyone will approach him in the hallway with all their not-as-short-as-they-thought questions. Or maybe patients will not feel that he is treating their illness seriously.



This is one of those areas where I do not assume that all patients think like me.

Apparently, I am not your typical cancer patient.

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After reading this, Moshe asked rhetorically, "You know what I like about [our oncologist]? He's always smiling."

I looked at him curiously.

"It is always there, behind his eyes. He has this dry, wry sence of humor, that I really appreciate."

True. But I think my husband "gets" him more than I do.

I am the kind of person who needs things spelled out for me, even jokes (certainly sardonic remarks).

"He does not need to smile," Moshe added, "It would be overkill."


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

The 20-Year-Plan

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.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

STUCK

I met with my oncologist this past Tuesday. I had a list of questions for him. Most were simple. Some were not...


I asked: "What's the plan?"

He answered: "To keep doing what we're doing."

I clarified: "Do I understand correctly that I keep taking these drugs until they stop working, and then I take something else?"

He answered: "Yup."

I asked: "Will I get any breaks?"

He answered: "Nope."

I persisted: "I've met people with metastasis who have breaks in their treatment."

He stated: "I don't know about other patients."

I asked: "But will there be times that I don't need to be on chemo?"

He responded: "That's a rephrase. I've answered that question."


He emphasized that we are aiming for stability; that our goal is that the cancer doesn't grow. I don't like that. I don't want it to "stay the same." I want the cancer to shrink. I want it to go away.

It is difficult for me to accept that I will always have cancer.

I am having a hard time with the chemo-for-life thing.

Yeah, yeah, I know... "It's better than the alternative."

It still sucks.

I can live with it.

People get used to it.

I'm stuck.

I gotta' get past it.

This is the way it is.

Accept it and move on.

I have cancer.

Next.


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA