Counting Down

I had my 7th chemo this week. It's hard to believe that I'm almost done.

This week was a breeze. I actually went by myself because things fell through with the person I was hoping to have join me. I didn't even try to find a replacement person because, in some ways, it was easier to go alone.

Now that my toxic cocktail includes Benadryl, I usually sleep through the entire session. When someone is there, I feel obligated to try to stay awake and talk to them. After all, they did come there to keep me company. It kind of sucks for them to have to just sit there and watch me sleep. But this time, I got all cozy with the blanket my cousin Carolyn sent me (thanks, Carolyn, I love it) and just let myself pass out.

I was also a little nervous about getting sick. I got sick last time and I didn't want to have someone be there just to watch me get sick. So, I was glad to go alone this time. I was also glad to not get sick. This time, they pre-administered an anti-nausea drug and I had no weird side effects.

I did talk to my doctor about my concern that I'm not really noticing any big changes since starting the Taxol and, in fact, some of the intermittent breast pain had returned. (It went away completely after my second AC treatment.) This was a concern to both of us, so we decided that I would monitor my symptoms this week to see if I continue to get it. If, when I return for my next chemo session, we feel that the Taxol isn't really doing anything, we may switch back to AC for my last treatment. He may even add one additional treatment of AC. We're going to play that by ear though.

I have to admit that I'm ready to move on to the next phase of this. You can't really get away from having cancer. It's pretty much with you 24/7. And, frankly, I'm getting tired of it. I'm ready for the next big thing to feel like I'm moving past this. My attitude about recovery is still great, but I think that's actually why I'm getting sick of this. I'm certain I will recover, so now I'm just ready to get on with it! At least when I go to get my surgery, I will feel like I'm making progress again. Without any visible results from the Taxol, I feel a little stalled.

With that said, I also recognize that I'm actually almost there. So, it's good that I'm ready for it. A few weeks ago, I wasn't ready for it. In fact, I was a little frightened by it. But now, I'm ready for it. Hmmm... perhaps I am making progress.

Fun with Needles

The last 12 hours have been fairly interesting.

A couple of days ago, I noticed a slight discomfort in my left arm. My left arm is where my IV port is located. It was temporary and quite mild, so I didn't think much about it and, in fact, soon forgot it. Yesterday, I noticed again. Ever since I got the IV port put in, I've been acutely aware of that part of my body. (It took a couple of weeks for me to not feel the catheter running through my vein all the time.) I just figured it was more of the same.

But, last night, as I was getting ready to go to bed (a little too late at night for my own good, I might add), I became aware that my arm was feeling pretty tight... particularly when I bent my elbow. It occurred to me that it might be swollen, so I decided to measure it. Sure enough, it was about an inch bigger around than my right arm.

So, I took a closer look and noticed that my hand looked pretty swollen as well. As I was comparing left arm to right arm, I suddenly became aware that my entire arm below the IV port was discolored. It looked like I had a sunburn!

This kind of freaked me out, so I immediately called the after-hours number for my doctor's office. Of course, I got an answering service and they told me that they'd page the doctor on call and have him call me back. I was a bit surprised when the call I got half an hour later was actually from my doctor.

After describing the symptoms to him, he surmised that I had a blood clot around my port. My grandfather died of a stroke, my grandmother had angina, and my mom died of an aneurism... so this news was a bit unsettling to me... particularly since this vein runs directly into my heart. That was sort of the point of the IV port.

My doctor felt that it wasn't a big enough emergency for me to go to the ER, so he scheduled me for an ultrasound on my arm for first thing this morning. Sure enough, I have a clot... and it seems to be blocking blood from passing through that vein.

My options to deal with this were to remove the IV port or to go on blood thinners. My doctor recommended the blood thinners. That ensures that the clot is dissolved and doesn't break off and head for my heart or lungs. I chose to follow my doctor's recommendation.

That's when I found out that the blood thinner I'll be taking (Lovenox) is taken daily by subcutaneous (under the skin) injection... that I give myself. Yikes!!

This kind of freaked me out when I first learned about it. I know that diabetics do this all the time, but I always wondered if it was something I'd be able to do. It turns out, yes.

First, the needle is teeny tiny. And you poke yourself really fast, so you don't even feel it go in. And, you don't have to go into a vein, so placement isn't an issue either.

Before giving me the prescription, the nurse gave me lessons on how to give this shot to myself. She told me to think of throwing a dart when I give myself the shot... except I don't throw the needle, of course. But the wrist movement is the same quick wrist movement you use when throwing a dart. She had me practice with an empty needle in the office.

I had mentally prepared myself as she went through the instructions, so I thought I was ready. But when she handed me that needle, it changed everything. I got really nervous and anxious about it. But, then I took a couple of calming breaths and just did it. (Remember "feel the fear and do it anyway?") I didn't even feel the needle go in. It was easy!

So, I immediately got the prescription filled, went home and gave myself the shot. The liquid stung a little going in, but my neulasta and red blood cell shot (I always forget what it's called) are much, much worse, so it wasn't really a big deal.

So, now you can add self-administering daily shots to my cancer journey. I never know what interesting new places this journey will take me... but I keep finding out.

IBC in the News

IBC is finally getting some attention. A friend forwarded this video to me that appeared on a Seattle news show about inflammatory breast cancer.

Watch Video

I have to admit that it was a little difficult for me to watch this. One of the things that I've purposely avoided since being diagnosed is listening to or reading about people's experiences with ibc that didn't lead to recovery. You see, part of keeping my positive attitude is not allowing myself to focus on death as a possible outcome.

I truly believe I'm going to survive this. I'm breezing through chemo (in comparison to others) and the cancer hasn't spread anywhere outside my breast... these are all good signs. I feel that my story isn't the one that someone else tells on my behalf... my story is the one that I tell when I survive this. And this isn't something I say to make myself feel better, this is something that I believe is true.

Earlier this year, I went through a personal and spiritual exercise to find guidance about what this year would be about for me. The phrase "storytelling" was the result. I don't think it's any coincidence that I now have a giant story to tell. And, I'm the storyteller. That's why I'm doing the documentary.

After seeing this news cast, I want to contact the reporter to tell her what I'm doing and see if she might be able to help with resources, or if I can use part of her news cast in my documentary. I think it would be amazing to get some of the women that were included in her news cast to share their story with me. I'll let you know what happens. In the meantime, let this news cast be a reminder that more people need to know about ibc. Please share the news story and please share mine. Women of all ages need to know that breast cancer isn't all lumps.

Taxol, Part II

Today was my second Taxol treatment... and the most eventful one so far.

Like before, it started with the triple whammy of decadron, benadryl, and zantak. It's so weird when the benadryl hits my system, because I feel it instantly. This was pretty much the same treatment as last time... after the triple whammy, they wait an hour for the cocktail to mix in my system, then they start the Taxol drip. They administer the Taxol slowly for the first half hour to make sure my system isn't going to react, and then they put it back on full speed. It still takes close to an hour for the remainder to drip into my system.

In spite of the fact that I got a really great view of outside this time, I fell asleep once again. Benadryl. I wasn't much company to Cathy, but she had Harry Potter (book 6) to read and, when she wasn't watching that, she got to watch some albino chipmunks frolicking outside our window. Unfortunately, I couldn't see them, but she said they were pure white. I hope to catch a glimpse of them sometime in the future.

Just as I finished up on the Taxol and they came in to switch me over to a saline drip, I got sick. This is the first time since I've started chemo that I actually threw up. It came on kind of suddenly... thank goodness the nurse was there. She was back with a basin for me before Cathy even figured out something was wrong. That's how quick it was. The nurse stuck the basin under my chin just in the nick of time!

It was quick and over in a few minutes. (Cathy notes that it was also orange like the cheese crackers I had eaten a few hours earlier. She wanted me to tell you that.) As soon as it was over, I felt much better. My blood pressure dropped significantly after that, so they made me hang out until it came back up. At first we were concerned because it wasn't rising at all. But, I was sleepy from the Benadryl and kept taking naps in between each blood pressure test. Finally, after the last low pressure test, the nurse made me stand up so she could take it again. This time, it was perfectly normal. The reason my blood pressure wasn't rising was because I was so relaxed!

I came home after that, feeling tired and a little drained, but feeling good nonetheless. I have to admit that I am very happy that I only have two more of these sessions.

After that, we go to surgery. I spoke with my oncologist yesterday and reported everything the plastic surgeon had suggested to me. We agreed that we're not going to do the tram reconstruction surgery on the left breast at the same time as the mastectomy due to the fact that we want to do radiation afterwards. Not only could it delay the radiation treatment, but sometimes radiation can affect the skin and tissue, causing the breast to shift. However, we are going to start the implant process on the right breast then. Which means that I'll get a mastectomy in the right breast and they'll put the expander in at the same time. That will make room for the implant. Then, by the time they are ready to put the tram in, they can also be ready to replace the expander for the implant.

I'm getting over most of my nervousness about the surgery. Cathy told me something funny last night when we talked about it. She told me to think of it like baby teeth. We lose our baby teeth to get adult teeth. We have a gap there for a bit after the loss, but, eventually, the adult tooth grows in to replace the baby tooth. She told me to think of this as a "baby boob." And, then, she pointed out that by the time I'm 80, I will have had the reconstructed breasts longer than I had my original breasts.

But, my question is... how much does the boob fairy leave if you put your "baby boob" under your pillow?

Walking for the Cure

Saturday, I went walking for the cure. I was joined by my friends Cathy, Chris, Shannon and Jenny. Jenny's friend Anya also joined us. (I hope I'm spelling her name correctly.) Oh, yeah... there were also about 25,000 other people there too.

It was amazing to see all those people lined up to walk at Comerica Park. I've got some video footage that I'll post soon. By the way, the reason I haven't posted the video footage of my head being shaved yet is because I keep forgetting to go out and buy the right cable to suck it into my computer. I used to have a cable for that, but I can't find it anywhere.

The walk was really something. Survivors wore special pink t-shirts and hats so that you could pick us out in the crowd. We had barely started walking when a woman came up to me and gave me a pair of pink earrings. She said that they came with a blessing. Noticing my bald head, she and her walking companions (both survivors) asked me how long ago I had finished chemo. They were both surprised to learn that I'm still on it. That would not be the last time someone asked me that question and was surprised by my answer.

At the end of the race, another survivor came over and gave me a hug. It was very empowering to be a part of this group. Being there reminded me of something my therapist, Julie, said to me when I was first diagnosed. I had been trying to create a stronger circle of women friends at the time. She told me that I have been invited into a very exclusive club. I hadn't asked to join, but I had been invited. And that this exclusive club is one of the biggest women support groups in the world.

Walking on Saturday among all these other pink t-shirted women, I realized how true those words were. Again and again, other survivors came up to me to greet me and ask me how I was doing. I also walked with several women (and Chris) that are already my friends. It was really a spectacular thing, and I was really glad to be part of it. And, although I had to wake up at 5:30 in the morning just to be there, it was totally worth it!

Too Skinny

I met with my surgeon today, and it turns out that I'm too skinny... which is ironic since I was actually planning on losing more weight.

Okay, I'm not too skinny when it comes to average height/weight/fat ratio recommendations. However, I am too skinny if I actually want to naturally replace my two existing breasts with two C-cup breasts. For those of you who may be keeping track, that's actually a reduction from my current size. Yes, I've decided that when I have my breasts replaced, I want them to be slightly smaller and perkier.

Unfortunately, I only have enough fat left on my tummy to create two small B-cups. Which is totally not acceptable! Actually, there's another problem that being too skinny creates... which is far more critical than cup size.

The other problem is that when I have my mastectomy, they will remove a great deal of skin along with the breast tissue. My current tummy size puts the ability to replace the lost breast skin with enough skin (even a small B-cup) at risk. My understanding from my plastic surgeon (with whom I met today) is that the amount of skin they'll remove from the left breast will be greater than that removed from the right breast because the cancer is currently only in the left breast. However, there will still be skin removed from the right breast. Unfortunately, the amount of skin on my tummy might not be enough to cover both breasts.

My plastic surgeon suggested an alternative for me that not only gets me two C-cups, but also ensures that I have enough skin to replace what will be lost on my left breast. He is suggesting that we only do natural reconstruction to the left breast. This is somewhat necessary anyway, because after mastectomy, I will need to replace the skin on my left breast with the skin over my abdomen. They'll use the fat from that area as well, to create a full C-cup left breast. In the right breast, he is suggesting an implant. Not silicone... some other material that I have already forgotten. (I forgot to take the video camera today.)

Another aspect of this is whether I will have the reconstruction done at the same time as the mastectomy. Part of this depends on whether I have radiation after mastectomy, and how soon my doctor will want to begin radiation. My plastic surgeon is not really concerned that the reconstructive surgery itself will interfere with the radiation, but he is concerned that my recovery could delay starting the radiation.

Join me here next week as I answer these questions and more:

• Will I be receiving post-surgery radiation?
• How soon will we need to begin?
• How much radiation can I expect and for how long?
• Will I really be able to get reconstruction done at the same time as the mastectomy?
• What exactly will they remove from my left breast vs. my right breast in the mastectomy?
• How do they know they got it all?
• Will they remove any lymph nodes?
  

Taxol

Yesterday, I had my first Taxol session. I wasn't sure what to expect going in, but the entire experience was different.

With the AC treatments, I was given an injection of anti-nausea medication and a steroid called decadron prior to receiving my chemo treatments. An hour before I got any of it, I also took another anti-nausea med called Emend.

With Taxol, I get to skip the anti-nausea meds as nausea is not a major side effect. Woo hoo! This is good because the anti-nausea meds, mixed with the chemo treatment, made me pretty non-functional for three days starting with chemo. They also included other non-pleasant side-effects, such as constipation.

Taxol, however, comes with its own set of side effects. One thing that they have to watch pretty carefully in patients is allergic reactions. In order to minimize them and, perhaps, head them off at the pass, they injected me with three drugs prior to receiving the Taxol:

• Decadron (only at a higher dose than I was receiving with AC)
• Benadryl
• Zantac

This little cocktail has to percolate in your system for about an hour before they give you the Taxol. The decadron gives you tons of energy... which is immediately counteracted by the Benadryl. The Benadryl hit me so hard that I have no idea what the affect the Zantac was.

I've had a lot of experience with Benadryl. I have allergies and Benadryl is my emergency drug of choice. However, I tend to only use it when all else has failed because it knocks me out. Seriously. The injection of Benadryl was no different, except that it hit me 10 times faster. One minute, I was feeling all energetic from the decadron, the next minute I had to lay down.

Most of the hour that I had to wait before beginning my Taxol treatment, I was napping. It wasn't that true nap you get at home on your couch.... it was hospital napping. The last time I spent enough time in a hospital to actually try to sleep, I was 14. The interesting thing is that you forget how noisy they are. Hospitals are not restful places. In my nap state yesterday, I was also constantly awake as I listened to the conversations of the nurses outside my door. In fact, the only way I actually knew that I napped was by how incredibly fast the hour passed while I was waiting for Taxol.

In order to watch for any allergic reaction, they started off my administering the Taxol at a slower pace for the first half hour than they normally do. For the first 15 minutes, my nurse sat in the room with me monitoring me for any signs that I might have an allergic reaction. Nothing unusual happened. After that, she left the room and I resumed my in and out napping. Fifteen minutes later, she came back and upped the dose rate to its normal speed... which is still pretty slow. It would take another hour to complete the dosage.

Half an hour later, I started experiencing intestinal cramps over each of my hips. I had just seen my nurse walk over to help another patient, so I waited a couple of minutes to see if she would walk back by. Nichole was with me yesterday, so after about 5 minutes, I sent her out in search of my nurse. Almost as soon as Nichole walked out the door, I started salivating... seriously salivating. It was the kind of salivating your mouth does right before you're going to throw up. I started panicking because I thought I was about to throw up, and yet, I had absolutely no feeling nauseousness. I called for Nichole, who was followed in by a nurse. The nurse went and grabbed a bucket for me and then turned off the Taxol until she talked to my nurse.

As soon as she turned off the Taxol, the salivating went away. It was so strange to have that happen without feeling nauseated. My mouth thought I was going to get sick, but my body wasn't convulsing in anyway. It was very strange, and I was very happy that it passed without incident. I was still feeling the cramps when the nurse came back in and turned on the Taxol again. She said that what I was experiencing wasn't a known side effect to the Taxol. The rest of the session passed without incident. And, though I still experienced the intestinal cramps throughout the remainder of the Taxol, they disappeared shortly after my nurse switched me over to saline to flush out my system.

When I got home, I was still feeling pretty groggy from the Benadryl. Nichole and Ben were joining me for dinner yesterday evening. Nichole made dinner, which also provided me with leftovers for the weekend. She made a delicious pasta primavera with my favorite veggies: asparagus, broccoli, and zucchini. In fact, it's making me hungry just recalling it. But, back to my story.

While I laid on my couch half-napping and we waited for Ben to arrive, Nichole cleaned my kitchen and threw away all the expired food from my fridge. Thanks, Nichole!! I don't know if I properly showed her my appreciation when she did it because I was having slight control issues, but I really appreciated her doing that for me. So, thanks again, Nichole.

By the time Ben got there, I finally started coming out of my Benadryl stupor. So, for those of you who accompany me to future chemo sessions, I'm not going to be my usual talkative, chatty self. It's most likely that I'm going to be half passed out... so be sure to bring along a book or magazine, or some other form of self entertainment.