Checkup with Dr. Engel’s office

Last week I had two doctor’s appointments – one with Dr. Li and one with Dr. Engel. The appointment with Dr. Li wasn’t originally on the schedule and in fact, I had to remind Dr. Li why he was talking to me when he came into the room. Dr. Engel’s appointment, on the other hand, was a routine check-up. I actually met with his nurse, Carol. After waiting for an hour and a half (she got stuck lancing an infected cyst or similar such procedure), she finally showed up in the room. I was really glad I had a good book to read.

During my appointment, Carol did her routine checks of my chest and breasts. I had to sit and put each arm on her shoulder, and then lay down with my arm over my head. I get to go every six months for three years, yearly until five years, and then I can switch to my gynecologist or family care provider to do my checks after that point. I asked what she was checking for, and she said they were just looking for irregularities.

I also asked about a knot in my back, just below the point of my shoulder-blade, to see if it was related to the surgery. She indicated it was likely related to the surgery, since it’s at the edge of the nerve that goes through your armpit and down to your fingers. I have to stretch that nerve on a regular basis. It seems to tighten up and make a line running from my pinky towards my elbow tingle. It all seems to be related, which is good because it means it’s not likely to be cancer causing the pain.

Just Say “No” to Tamoxifen

While I was at the Cancer Center on Monday for my last Herceptin infusion, I also had an appointment with Dr. Li. I had called him the previous week to discuss my nausea associated with Tamoxifen. He decided I should come in and see him to discuss. Luckily, he was able to squeak me in before my Herceptin appointment, so I didn’t have to make a special trip.

I was in a new room this time – a special one, it turns out.

An escape ladder in the corner - for just in case!

An escape ladder in the corner – for just in case!

This room had a ladder to the roof in the corner. Just in case you need to make a run from bad news? Who knows. It was amusing, though.

Dr. Li hadn’t heard of anyone feeling nauseous on Tamoxifen. I asked if there was another drug or a different formulation that I could take, but that wasn’t an option because I was pre-menopausal. There was the option to make me menopausal, through surgery or monthly injections. However, after reviewing my cancer characteristics and reminding himself that the cancer had come back <1% estrogen positive and ~20% progesterone positive, he decided it wasn’t worth it. The benefit I’d get from the treatment wouldn’t outweigh the costs of the treatment. He advised me to try the Tamoxifen again, but if I still felt nauseous, to just not take it. Now I need to decide whether or not I want to retry the Tamoxifen and take it for a few months. Do I really want to feel nauseous for that long on the possibility that it will go away and I have to take the drug for years? Such decisions…

Family portraits

One of the things we did on our Little Pink Houses of Hope vacation in Avon was get family portraits taken by a professional photographer. It was supposed to be done with the Cape Hattaras lighthouse in the background, but the weather was looking quite iffy for that day, so we moved to the fishing pier instead. Daniel Pullen is a great photographer, known especially for his surfing photos. The only problem is he works on surfing time so it would be few months before we should look for the photos.

Well, the wait is over and the pictures finally came. We actually got a CD with all the photos that were taken, and I’m quite impressed with the creativity shown in many of the family photos. Ours look much more traditional, but are still quite lovely. What do you think?

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Another Milestone!

I had my last Herceptin treatment today!! That means, I won’t have to sit in an infusion chair again!!

Last time in the chair!!

Last time in the chair!!

My nurse today was the same nurse I had for my very first infusion. When she asked how I was doing, my response was, “Awesome!” She replied, “You should be!” She apparently was aware that was my last infusion as well. I was back in the corner this time, surrounded by other people doing chemo. I felt a little bad that I was so happy when they were still going through the nonfunness of chemo.

Now, just because I’m done with infusions, doesn’t mean I’m done with going to the cancer center on a regular basis. I still need to go and get my port flushed every four to six weeks. The nurse’s comment was many people go every month just to make it easier to schedule, but I’m all about avoiding a trip to the Cancer Center as much as possible. I’ll be making those trips every six weeks, and not a day sooner.

Calling the doctor

Monday I called two of my doctors, which meant I was on the phone five or six times with one office or the other. Miss Adventure asked me why I was on the phone so much on Monday, and I had to explain to her the inefficiency of calling doctor’s offices and leaving a message with the nurse who calls you back to find out what you want and then needs to talk to the doctor, so they’ll call you back again…. Needless to say, the phone kept ringing.

I called Dr. Kang first. I wanted to find out when I could schedule my exchange surgery. I’m teaching in the fall again, so I’d like to be able to work around the surgery. From what I’ve read, I’ll only need a couple of days to recover from the surgery. If I can get the surgery on a Thursday or Friday, I won’t have to miss any teaching days, but who knows what his hospital schedule is. The nurse called back saying Dr. Kang wanted to see me to see if he could schedule the surgery before October. Really? Something happening faster than expected? That would be totally awesome. Now I just need to get this scab on my scar healed before I see him in August.

The second call was to Dr. Li’s office to talk about my Tamoxifen prescription. I’d stopped taking it because of the nausea. The nurse’s initial comment was just to take an anti-nausea drug along with the Tamoxifen. No, I don’t think I’ll be taking one drug to minimize the side effects of another drug that’s offering me minimal benefits for the next couple of years. The end result (after several phone calls) was Dr. Li wanted to see me because “nausea isn’t a typical side effect of Tamoxifen.” Great, now I’m all worried that the nausea is caused by the Tamoxifen interacting with cancer cells somewhere inside me. How to solve that problem – do a little research on the internet. Turns out, nausea is a side effect in 10-15% of women who take it. Some people just live with the nausea for years. In others, it seems to go away after a month or so when your body adjusts to it. I’m willing to try it for a month or two to see if the nausea subsides. We’ll see what he has to say when I see him on Monday.

Tamoxifen

The last time I saw Dr. Li, he decided to start me on Tamoxifen, which I would be taking for 10 years. I was not too pleased about this long-term drug taking, especially since my cancer was estrogen negative and only weakly progesterone positive. I did fill the prescription, but I didn’t start taking it right away. Instead, I did a little research on the internet (of course). I did find a couple of reasons that the Tamoxifen prescription made sense. The main reason is that cancer tends to be very heterogeneous. The pathologist can only test a bit of the cancer, and it’s highly possible that a different part of the cancer would be sensitive to the hormones. Tamoxifen tends to have minimal side effects, so the cost-benefit analysis usually comes out on the side of taking Tamoxifen.

So, I let the prescription sit on the counter for a week or so, but I started taking it a couple of weeks ago, along with some iron pills. In retrospect, I should have only started one new drug at a time. I started feeling mildly nauseous, pretty much constantly, and I wasn’t sure if it was the iron or the Tamoxifen. Time for some experimentation. First, I stopped the iron pills, but not the Tamoxifen and the nausea was still there. OK, not the iron. Next, I stopped the Tamoxifen and sure enough, the nausea went away. I’ll try taking the Tamoxifen once more to see if the nausea comes back. Somehow I think it will, at which point I’ll be calling Dr. Li to change the prescription. If I was only taking the drug for a short time, I could do it because the nausea isn’t too bad. However, I’m not going to spend years feeling slightly nauseous, and I’m not going to take another drug to make the first drug not make me nauseous.

Bloodwork for Science

Monday was my second to last Herceptin treatment. (Yes, there is dancing in appreciation of this fact that there’s only ONE MORE TO GO!!!) While I was there, I wanted the nurse to draw my blood for the Breast Cancer Risk in Young Women Study I am participating in. I was going to do it the last time I had a Herceptin treatment, but there was a problem with my meds which led to a long wait before my infusion, and I ran out of time to get it done. So, it was time to try again.

I figured it would be an easy process. I needed two vials of blood filled, and the researcher had provided the vials, the packaging, and everything. While I was accessed for my Herceptin, it would take no time at all to fill up the vials.

It’s never that easy, is it. For one thing, this was a bit out of the ordinary, so the nurse wanted to check with the supervisor, who of course was out to lunch. So, I had to wait for the supervisor to come back. The supervisor sent the nurse to the lab supervisor just to check. Usually they charge a fee for drawing blood, but I had paperwork that provided a billing address associated with the project. Finally, she got permission to draw the blood.

Vials of blood all set for mailing

Vials of blood all set for mailing

Once the blood was drawn, it was off to the FedEx Express store so I could get it in the mail quickly, before the blood started to degrade.

All packed up and ready to go.

All packed up and ready to go.

They received my samples today. I know this because I got a phone call from a researcher wanting to do my family history. I had done this for my BRCA testing, but still couldn’t remember all the details on how old my aunts and uncles are or, even worse, my great-aunts and -uncles. I vaguely remembered who had cancer in the family (not much of it), but hopefully it was detailed enough. The next step is to ask my sisters and parents to see if they’d be willing to send in blood to compare it against mine. I’ll ask them the next non-crazy visit we get and see what they say.