OK, I'm a slacker

I'm now done with the second to last infusion and it's been weeks since a post. Blame it on the holidays? Maybe. Mostly I think the treatments have become routine, the best thing being an additional drug, Emend, and saline infusion which is preventing the horrible nausea attacks.

I can show you more pictures of Lake Union or the infusion rooms but they are pretty much the same.

So what I think I'll entertain you with is the sometimes conflicting information I've gotten while being treated at SCCA. First of all, the care has been excellent. I am lucky that Seattle has such resources. But sometimes I wonder we're people are coming from.

When I first had my teach about the port, the nurse said it would be in for a year! I freaked out! I didn't want this thing lurking under my skin all of that time. The nurse, however, thought it was great for all of the tests I'd be having. I've come to learn that nurses love anything that makes their job easier, regardless of how the patient feels. As it turns out, the alien will come out with my final surgery in March. This nurse also thought taping a bottle cap over the port when I've applied Lidocaine was an excellent solution to keeping it from getting all over your clothes. Even other nurses thought this was silly as a piece of that sticky plastic wrap will do the job discreetly and well. Speaking of plastic wrap, this sticky wrap is supposed to be the answer to keeping my bag dry when I shower. It is supposed to stick to my skin while keeping the water out. Well, it does stick to my skin but does not keep the water out. So the the solution I was given was to use a hair dryer to blow the bag dry. OK, I ask you, how many of you want to blow dry a bag of s*it attached to you when getting ready in the morning? Thought so. And when I was first getting my teach about getting the bag and freaking, the surgeon said it was temporary so I shouldn't react the way I was. That doesn't help when your facing months of having this thing stuck to you! And then there are the directions for medication. The bottle says take after a meal, the RN says take half an hour before a meal.

In the end you listen and adapt to what works for you. Conflicting advise seems to be a part of the process.

Thanks for listening and best wishes for the holidays and a happy and healthy new year!

Half way, almost, kind of...

Last week I had session 4 out of 8. The best thing about this session? I was put in a bay I had been coveting - Bay 40, a corner bay!

Not all bays have windows and those that do have everything oriented away from them. Here I was able to sit across the bed with my back against the railing with a couple of pillows for support. Now I could watch the changing sky, the traffic and the urban campers under the overpass.

Half-way there, cause for celebration, right? But it's like running  a race and you happily realize that you're half way through and feeling good until you look ahead and see a huge hill looming as far as your eyes can see. I feel that now I've got to dig down deeper and really push to the end.

It's not the bi-monthly infusions so much, they've become a part of the process. The worse part has happened after the last two treatments - 5-6 days later  I have terrible stomach cramps and violent vomiting (is that a punk rock group name?). The next day I am wiped out and it takes days for my stomach to settle and my appetite to return (the first time I lost 4 pounds in two weeks). They now want to add a course of dexamethasone and omeprazole to hopefully mitigate these episodes. I am not thrilled about taking the steroid, but if it prevents the nausea, I'll do it.

The last part of the puzzle is the surgery that will return me to normalcy. I was thinking it would be the middle of February, but now looks like it will be mid-March or later. What's a month or two when I will have been going through this for almost year at that point? Indeed, it's a lot. Which is why at this point I don't want to count down the remaining chemo infusion, I want to count down to the final day when all I have to think about are follow-up appointments. Now that will be worth celebrating!

Sessions two and three - five more to go!

Since I'm late getting my second infusion session posted I decided to just combine the last two. Basically the drill is the same: port access and blood draw, wait, meet with the RN or oncologist, wait, infusion check in, wait, get infusion (6-7 hours), get pump connected, go home. Forty-six hours later I come back and get the pump disconnected.

I have purchased an Ipad mini which helps keep me entertained and connected to the outside world. They still haven't come up with a treadmill for me so I walk back and forth in the halls – there's not a circular route. Many of the other people getting treatment do not look like they are up for a stroll.

On my second session I got a standard bay (why they're called bays I don't know, to make you feel like you're on a cruise?). Here is an image of my bay:

Well, not cozy but serviceable. There's a TV if you want to watch it which doesn't interest me, especially if I'm there during the day.

On my third visit I had a window room! Unfortunately, everything is oriented away from the window so you have to sit backwards on the bed to get a view of the traffic on I-5:

There is one bay with corner windows! I hope I get that one some day.

In general, I am doing well. I met with the oncologist this last visit and he is happy with how I am progressing. The oncologist didn't feel I needed the CT scan done after six treatments and so now I am scheduled through the end of the year, literally, 12/31 is my last infusion. I have had little or no nausea. The worst side-effect is the reaction to cold in my fingers, like pins and needles. I need to wear gloves to take things out of the refrigerator. My feet, throat and face seem to becoming sensitive to cold also. A few days after chemo the sensation is not as bad. It could take a year for this side effect to disappear completely. David thinks my hair is thinning and I'm getting grey, but I saw my hairdresser this Saturday and she wasn't too sure. I may break out the Loving Care anyway. I am tired the Friday and Saturday after infusion so take it easy and don't push it (except for playing tennis which really isn't pushing it, it's just fun).

So, as you see, I'm getting through this, one step at a time. At one point the RN said that since I had to go through this I should just learn to love it. I said, no, I don't have to love or like it, I just have to get through it. And that's what I am doing.

Blessed and Lucky

Sorry I haven't been in communication recently. I've been enjoying life - working, playing tennis, exercising, being with David (opera Saturday night) and enjoying this beautiful fall we are having in Seattle - foggy, cool mornings and almost warm afternoons. The trees have been hanging on to their color a little longer, perhaps due to the milder weather.

Shades of grey, no?

All along, my goal has been to not let the cancer treatments interfere with my activities as much as possible. So when I get a stretch of time free of appointments coupled with some energy, I take advantage of it. And, I realize how lucky I am to be able to do the things I do. People tell me that I'm amazing, strong and brave. No, I'm just ornery enough to not let the cancer treatments get the better of me, when possible. There are times when I realize it's OK to nap or just rest - which is a breakthrough for me.

I also realize I'm very lucky that my colonoscopy revealed the cancer at a treatable stage. My sister recently went to a memorial for someone who wasn't feeling well, when into the hospital and was diagnosed with stage 4 colon cancer. He died five days later. Please, DO NOT put off any tests your doctor recommends, they are bearable and if the results are good, you won't have to bother for a while.

I saw this story in the NY Times about a woman who must decide on her wedding date based on her parents health. Warning - tearjerker.

Yes, I'm blessed and lucky.

One down, seven to go

Last Wednesday, I had the first of eight chemo treatments. So, every two weeks, this will be my routine.

But, wait, first I had to get the port implanted. I think the scheduling department dropped the ball because I ended up getting my port implanted on Tuesday, and started chemo the next day. It was outpatient surgery at UW, I was in at 7:00 AM, out by 1:30 PM. Things went well and now I have a little lump (bot fly) under my skin on the right side of my chest. The crappiest part is, that after being able to finally play tennis after my last surgery, now I have to wait two weeks to play again. One step forward, three steps backwards. Which, is kind of like my playing, three bad shots, one good shot.

I am very lucky that a friend of mine, Stephanie, a nurse and a breast cancer survivor, offered to spend the day with me during my first chemo treatment. A blood draw is the first step, but since a nurse had not removed the dressing, I got the standard in the arm jab. Then, I had an hour to kill until the results got to the doctor.

David and I discovered a great place near SCCA that is now open for lunch, Blind Pig Teriyaki at Eastlake. I've been wanting to eat at Blind Pig Bistro, but haven't been able to get there at night. I was able to pick up some gumbo before my appointments so I had something good for lunch. They do have a 'nutrition' center in the infusion area - if you consider Campbell's soup, Lorna Donne cookies and sodas nutrition. They do what they can, they can not maintain anything fresh, plus there's the issue of contamination from bacteria, and I am sure for some people this is a god-send. I wanted gumbo, and I got it! Stopping here will be on my agenda either before or after my treatments!

Now, where was I? At this point the doctor has the test results and you meet with them to get your vitals taken and talk about things such as what to expect and side effects. Then you go back to the waiting area to get assigned to a chemo station and a nurse. 

Once you get ushered into your station, the fun begins. Some tape or adhesive from the surgery had irritated my skin to the point that it took them a while to remove the dressing and then figure out how to anchor the IV access for the port. Now, I settle in for the duration. First comes some steroids, then an anti-nausea drug and then two of the three chemo therapies, Leucovorin and Oxaliplatin. To finish, I get a blast of Fluorouracil and then the tag along pump to administer more over the next 46 hours. After being there for six hours, I was on my way with my not-so-little fanny-pack buddy. We went everywhere for the next couple of days, except to the shower. Sponge baths and dry shampoo will be de rigueur. Bonus - I was given a hazard spill kit to carry around in case of an accident!

The next morning I immediately felt one of the side effects: neuropathy and cold sensitivity. I went out to fill the bird feeder and the tips of my fingers started tingling like they had fallen asleep. Over the next couple of days it was uncomfortable to take anything out of the refrigerator. The sensation lessened over the week, but I've heard that some people's throats close up even when they just open the refrigerator door. Guess I'll be heading to REI for some warm gloves this winter!

To get disconnected on Friday, I had to sit and wait until the pump administered the full dose. Then the access got plucked from my chest and a band aid gets stuck on. (Removing it later was fun.)
Afterwards, I had a slight issue with nausea but was able to control it with one of the anti-nausea drugs they gave me.

Like I said, one down; seven to go.

Quick update before chemo

Got my port implanted yesterday. Procedure went as expected. Can't lift anything heavy for a few days and cannot play tennis for two weeks! Just as I was getting back into it. Well, that won't stop me from getting back to it again! Today the area is sore, I'm taking ibuprofen and icing it. Later we'll leave for SCCA for my first chemo treatment. How fun is that? But it is treatment one of eight, so the countdown begins. My friend, Stephanie, who is also a nurse, is going to meet me there and stay for a while. Good to have someone like her by my side - she is also a breast cancer survivor.
Right now I'm looking at getting an IPad to keep entertained for future treatments. Though I still have enough books to keep up with my reading spree.

Port of call, and I don't mean a cruise ship

Well, I was scheduled to have my port put in today, but it got pushed back to tomorrow. I was supposed to show up at the UW Surgical Pavilion at 8, but now it's the UW Hospital at 7 (same location, different entrances).

But let me back up to the teach I had on Friday, which was to review the port and chemo procedures. I lost it when the nurse said I'd have the port for a year! My chemo is 4 months! What the ... ? I'll be losing the stoma in February 2014 so why does the port have to hang around (any port in a storm)? Turns out, she was misinformed. Oops. I'd left a message with the medical oncologist's nurse and she called back and said I will have it removed after chemo. Sigh, big relief. People, after my surgery in February I want to forget this whole episode of my life, except for the extraordinary support I have gotten from friends, family and co-workers! And, of course, my husband David!

So tomorrow I get this thing stuck under my skin with a bump where the port is and a tube going directly to my heart. On Wednesday, I first get blood drawn (now through my port rather than my arm), then wait an hour for my provider (really doctor) to see results, and then they start the infusion - first with steroids and antibiotics and saline solution and I don't know what else (except vodka!). Then I get the chemo started and they give me this, I'm sorry, really ugly 'fanny pack' to wear with a pump and two days supply of chemo that I get to wear all of the time. It's like being a drug addict without any of the benefits! Then on Friday I get disconnected, just in time for happy hour!

Well, I will deal with this. I was able to play tennis recently and have begun my workouts with Bronsa. I've been walking and I've climbed the stairs by our house - all 196 of them. As far as I'm concerned, I'm in the home stretch and the rest of what I will have to deal with is just getting back my fitness while working around these treatments.

The lioness is back.