Some kind of normalcy

It was very strange to look at my calendar for this week and see no medical appointments. Not one. Not only am I done at SCCA until January, I've also scaled back on physical therapy to every two or three weeks. It's a weird feeling when life has become one appointment to the next to suddenly not having any. I almost feel as though I've lost some part of my identity...I've gotten used to the attention. I think it must be a difficult switch from active treatment to follow up care. I'll find out this spring.

Yesterday the oncology nurse called me to talk about removing my port. She was giving me instructions, but then asked me if I was sure I wanted it removed. Uh, yeah. Why is this hard to understand? My oncologist told me I could keep it in for another year if I wanted. Why would I want to do that? Are they anticipating cancer coming back so quickly? Is there more chemotherapy in my future that I'm not aware of? Or, are they so used to little old ladies with horrible veins that they feel the need to try and talk all of their patients into keeping the port? Well, I'm having none of that. I want the thing out of my chest, for many reasons, including the fact that it represents 24 weeks of not-so-fun times that I just went through. So what if I might have to get an infusion every three months? Give me a damn IV. My veins are just fine.

I have decided against participating in the research study that I looked at last week. I want to get the Zoladex shot and don't want to take the chance that I might be randomized into an arm that doesn't include it. However, at this point I have to wait and see if my ovarian function resumes before they will start giving me the shot. That means getting my estrogen levels checked every couple of months and/or getting a period. I haven't had one since May and I certainly haven't missed it! One of the things that has to be watched carefully with the Zoladex is the potential of bone loss. There is another study that looks at three bisophosphonates which are drugs that help prevent bone loss. One of the drugs is Boniva and another is Zometa. Zometa is given via IV every month for 2 years, but still not worth keeping the port!

A week out from the last chemo infusion and I'm still feeling like I'm getting treatment. Last weekend was hard from the standpoint of not having any energy and still feeling very weak. I'm hoping by the end of the week to have a noticeable difference in my energy level. I'm also still dealing with constant eye watering, blood clots in my nose, and my nails are not done wreaking havoc on themselves. Also, my legs and ankles are still swollen from "capillary leakage." Gotta love that. I'm wearing my Crocs today because my ankles and the tops of my feet are too swollen for regular shoes.

So I've been getting to know my vet very well lately. Not only was Mea's eye injured by her sister.. she is all better after a few days of eye ointment (fun!), but Kitten is going in tomorrow for surgery. She has a skin cancer on her neck and an abscessed tooth. Those will both be removed and she'll get a dental cleaning as well. Kitten is 19 this month, but she is healthy. Her heart and lungs are strong and she's not suffering from kidney disease like a lot of old kitties. I'm pretty pragmatic when it comes to what I'm willing to do to prolong the life of an older cat. I wouldn't do something major that would impact the quality of her life in order to eke out another year or two. But, if by doing this surgery her quality of life gets better and we don't have to do anything else, then I'm all for it. I am also taking Zusa in tomorrow when I drop Kitten off. Over the weekend she started limping when she got up from lying down. Her left shoulder seems very stiff and I think she needs some anti-inflammatories. I suppose I should mention that Kira is just fine and doesn't need to go to the vet at all :)



I have completed 99% of my Christmas shopping. I haven't got anything for my Dad yet. I did all of my shopping online this year which made it easy. Over the weekend I also got everything wrapped. I guess I got tired of the boxes all piled up in the living room. Of course, now there are gift bags, but at least it's done.

I have also done a lot of shopping for me recently. All of this weight loss has been great, but I have no clothes that fit. I've been pretty successful shopping online for clothes. Only one or two things haven't worked out.

I have to say though that the amount on my credit card is quite scary. I have been putting off looking at it, but I finally did yesterday. The nice thing is that I have a sweet check coming from Aflac this week and I will be able to pay it all off.

Phase 3

I met with my oncologist today for a check-up and to discuss the next step in the regimen. She talked to me about tamoxifin and all of the risks and benefits of taking it. We talked about whether it would be beneficial to stop estrogen production all together for the next 5 years. The research has shown that young women with aggressive breast cancer (that's me) have less likely recurrence of cancer than taking tamoxifin alone. Her recommendation is that I get this shot for the next 5 years.

There is an ongoing research study that compares tamoxifin to tamoxifin plus a shot to stop estrogen production. The study is randomized though, so I have chance of ending up in the tamoxifin only group. The research coordinator is going to email me the protocol and consent form so I can review them, but I'm not sure I want to risk being put in that group. There's nothing wrong with taking tamoxifin by itself, it is considered the "gold standard" of care, but I sure as hell don't want to go through this crap again and I'm willing to do what I can to avoid recurrence.

I'm so glad that I don't have to go back to SCCA until January!

Oh, and I have to share.. I just recieved these scarves that I ordered as an end of chemo present to myself. So pretty!

Week 22

Almost at the end! I can't believe it. The past 6 months have gone so fast, yet so incredibly slow at the same time.

The good news is that my hematocrit went up 4 points to 32% after taking last week off. I was able actually walk and breathe at the same time last week. It was amazing to feel good (at least in that respect).

I didn't get much of a dose reduction.. only 10%. They did some weird reduction in the numbers they use to calculate the dosage, so it might actually be more than 10%, but looking at the actual dosage difference, it's only 10%. I have to say that I don't think that's going to do much as far as alleviating some of my worst symptoms (anemia, neuropathy). Already I'm feeling more short of breath when walking short distances.

The newest issue is "capillary leakage." I've gained 12 pounds in excess fluid in my lower legs and ankles. I was put on a diuretic Friday, which is certainly making me pee more.

Ok, so anemia, neuropathy and now edema. Good times. Not to mention the constant eye watering and the nail issue. Speaking of which, I had to cut off another nail on one of my toes over the weekend.

I have to say, I'm getting a little annoyed with my oncology team. First of all, my oncologist has never talked to me about this 30 pound weight loss and then sudden 10 pound weight gain. I mean, shouldn't she have checked out my legs at my last appointment on 10/31? It was the infusion nurse who took the time to ask me questions about my water intake, how much I was peeing, whether my ankles were swollen, etc. She diagnosed the issue and then called my oncology nurse to say that I needed a diuretic.

When my oncology nurse called me later in the day to discuss the diuretic, I asked her if I needed to stop taking any of my other medications. She admitted that they aren't really very good at medication managment and told me to contact my family doctor about it. No one has told me how often I will need to come in for blood tests after the chemo is finished. I am on a very low dose of this medication and it's going to take awhile for all of the fluid to go away. This medicaiton tends to remove potassium and that has to be checked regularly. My family doctor also said my blood sugar has to be monitored regularly as well.

What's more, when I asked the oncology nurse who would be handling the long term management of the medication I'm taking for hot flashes, she said they should go away after chemo. Really? That's funny because my oncologist told me that taking the tamoxifan (which I will be doing for 5 years) will put me into menopause. Furthermore, I was already experiencing peri-menopause symptoms for 2 years before I was diagnosed, including hot flashes. I can no longer take the supplements I was using for them because they contain plant-based estrogens and the just isn't enough research to show whether or not they could contribute to a recurrence they way taking hormone pills would. So, I'm stuck taking a nerve medicine that for some reason reduces hot flashes as well.

It's all very frustrating, and I'm going to have a lot to talk about with my oncologist at my next visit!