Decisions

I woke up yesterday morning realizing that I am definitely going to have the additional chemo. Even if there's no way to know if I need it or to measure whether it's helping, it will give me the peace of mind that I've done everything I can to ensure that the cancer is completely gone. I never want to have to wonder later if I should have done it now. Frankly, I'd rather do it and not need it than not do it and wish I had.

I'm still going to do some additional research into my chemo drug options and see if I can track down any ibc experts (that's proving much harder than I originally anticipated). However, my plan is to go forward with the chemo.

I just thought you'd want to know.

What's Next?

I met with my oncologist today. For the moment, everything is up in the air.

First, the good news. We got both my CT scan and my bone scan back, and neither of them show anything new. That's very, very good. That means that there is no indication of any new cancer. I was a little concerned that, after finding viable cancer in the lymph nodes that they removed during surgery, that during the two months between my surgery and radiation, something else might have started growing. And, if it has, it hasn't grown enough to show up on the scans. And, with a pretty aggressive cancer, that's good news.

I don't have bad news. I just have "I don't know" news. It means that I still don't know what's next. I may or may not have more chemo. Right now, that decision rests in my hands. If we do more chemo, we really have to wait about 4-6 weeks after radiation before we can start. So, at the earliest that's the first week of December, but mid-December is more likely.

In the meantime, I have a decision to make about whether I want to do that now. The fact that no new cancer appeared in my scans is a good sign that maybe it's not necessary. On the other hand, there could be microscopic cancer that just didn't show up on the scans. There's no way to tell these things without just waiting for something to appear. And, it might never appear. Or it could show up a few months or a few years from now.

Also, if I were to go ahead with more chemo, there's no way to measure whether it's doing anything. Without any evidence of cancer in my system, there's nothing to measure against. We would just do it as a "just in case" scenario. On the other hand, if there is microscopic cancer cells elsewhere in my body, doing more chemo could kill them off even though I would never even know they were present.

If I do more chemo, I'm really only looking at three sessions. The treatment that I would do is pretty much the same as the initial treatment I did at the beginning of the year, with a focus on the andriamycin. I can either take just the andiramycin, which means that I would get chemo every week for three weeks. Or, I can combine it with the cytoxan again (like I did at the beginning of the year), and I would need to take that every other week. Either way, it would only be three sessions. Don't ask me what the difference is because my head was spinning when we were talking about this, and I didn't think to ask that question. When I get an answer for it, I'll let you know.

At this point, doing more chemo is just a safety precaution to make sure we've done all we can do to treat the cancer with which I was diagnosed. If it doesn't respond to the next three treatments, then I've probably gotten the maximum benefit I can get from chemo, and we should probably just move onto the next phase of treatment. (More on that in a moment.) By the way, the reason I could only do three more treatments is that your body can only take so much andriamycin (cumulatively) before it presents a risk to the heart. I'm a little over halfway there. About three and half sessions would maximize how much I can have.

Generally, ibc has been shown to respond more favorably to aggressive treatment, so at the moment, I'm leaning towards getting more chemo. It would only be a few more weeks and, even though I would lose my hair, it would be over quickly and I could start getting back to normal. And, that way, I will know that I did everything to treat it that I could. If something were to appear five years from now, I won't be wondering if more treatment could have prevented it.

There's one other drug that is an option that has been shown to have very favorable results in ibc patients prior to surgery. This is key because the drug actually has an affect on surgical scars in that they could start "undoing" themselves. Not a good thing for me. However, if we were to wait until December that might be enough time for the impact to be minimal. This is a brand new drug that my doctor just learned about, so while he's researching it out a bit more, I will be doing my own research online.

I also think I'm going to see if I can find an expert on ibc, although that might be a challenge. It's not that I don't trust my doctor. I trust him a great deal, but ibc is so rare that while he does have experience with it, it's not a lot. Of course, that may be true of everyone I encounter. I'd like to talk to someone (or have him talk to someone) that has made ibc a specialty. I don't think I would need to see this person myself, but if my doctor spoke with him or her and shared my medical history, that might spark something that gives me a better idea of the best course of action to take.

Most likely, I'll have the chemo, which means that the next question become whether I repeat the andriamycin or try something different. Sigh. So many decisions, so little information.

Radiation Complete. Check.

I'm officially done with radiation! Woo-hoo!!

Actually, I was officially done with radiation yesterday. When I finished my appointment they gave me a certificate that all the therapists had signed. I got hugs from all of them, and they all wished me the best in my recovery. What an amazing group of women I had working with me throughout that process. I will miss seeing their smiling faces everyday, but I definitely won't miss the radiation.

Most of the area where I had radiation is already healing. As you know, the last 7 sessions I only received radiation (the electron kind) in the area of my incision. So the surrounding areas, where I had been receiving the X-ray radiation for the previous 28 sessions, have had a little over a week to heal.

Most of it has turned tan. I still have a couple of areas of pinkness, one area that is dry and has mostly peeled (scaled) off, and then the area under my armpit which is a mess. That's the part that got the worst of it. And, it was made even worse because of the friction between my arm and my body. That area is just black and several layers of skin are peeling off at once. They've recommended almond oil or vitamin E oil (I'm using an almond oil that also contains vitamin E) to help keep the area moist and to help those outer layers to separate from the newer, less damaged skin underneath. I also keep bandages over it to keep it moist during the day. Actually, they gave me something called "Flexigel" which is a sort of bandage that feels sort of rubbery. It seems to be used a lot in burns to keep the area moist to promote healing. I used that directly against my skin, with a non-stick gauze bandage over top for extra padding. Anyway, some of that has skin has started to peel off and the pain is beginning to subside now that the burn is starting to heal. I also think the Flexigel helps with the pain because that area isn't drying out and tightening up or being rubbed by my arm.

When I was 16, I once fell asleep on my stomach at the beach (I lived in Florida) for three hours. You can imagine how burnt I was when I woke up. For the next few weeks, I couldn't even straighten my legs completely because the skin behind my knees was so tight from the sunburn. The skin under my arm is about 5 times worse than that. But, now it's healing, and I'm very happy to have radiation behind me.

Today, I spent half the day at the hospital getting another CT scan and bone scan. It was an interesting day because when I went in to get the injection for my bone scan, they had a really hard time getting into my veins. I only had chemo treatment once in my right arm, and it apparently really affected my veins because it used to be really easy to find veins on me. Not so today.

First, they tried a spot in my arm. Apparently, it rolled away. The guy tried chasing it for a while, but just couldn't make it happen. Then, he tried a spot in my hand. He did hit the vein, but apparently went right through. The first thing they do when they put the injection in is to flush with saline. Now my hand is kind of swollen because the saline missed the vein. Actually, the swelling was due to them having to put the tourniquet back on to try and hit yet another vein. Which they did successfully.

Unfortunately, that wasn't the end of my being poked with sharp objects. When I went to have the CT scan, they needed to check my kidney functions to make sure I would be able to eliminate the contrasting fluid they give during the scan. Of course, they determine that with a blood test. They thought they could get enough blood to test it from one of those tests where they just poke your finger (I forget what it's called). So, they tried two fingers on my right hand... unsuccessfully. Then, they tried one on my left hand. They had better luck with it, but still didn't get enough blood. So, finally, they just drew blood with a needle, which worked. So, I was basically poked with needles 7 times today!!

Anyway, the new scans are for restaging purposes to determine my next round of chemo. The whole time I was there, I just kept thinking, "They're not going to find anything new." The interesting thing was that this thought wasn't a mantra that I used to try and keep myself from worrying or to try to make it be true. When I said it, I believed it to be true. I really feel like they're not going to find anything new with these scans.

My next appointment is on November 14 (Tuesday), when I meet with my oncologist to follow up on all these tests. That's when we'll make some determinations about my next round of treatment.

VOTE!

This isn't cancer-related, but it's important. I also posted this on my other blog (My Stream of Consciousness).

I know a lot of people tend to only vote in the presidential elections, but tomorrow's election is really, really important so make sure you take the time to go vote. We have a good chance of finally breaking the strangle-hold that the Republicans have held on our government for the past six years.

Our freedoms and rights have been deteriorating over the last few years in the name of the War on Terrorism. Fighting terrorism is one thing, but what does it mean if we give up our freedom to do so? Putting more Democrats in Congress ensures that we have a better balance between the Executive and Legislative branches of government. In this time of war and recession, balance is a good thing.

If you are unsure where to vote, or would like to review the candidates and issues on which you'll be voting, I urge you to visit your state's website. They should have a link to voter information. If you live in Michigan, go here: http://www.michigan.gov/vote.

Please vote tomorrow. Believe it or not, your vote counts.