Taxol Eight – “The List”

ChemoMonday proved to be quite an interesting day. I had been suffering from “the crud” and still had a hacky cough and runny nose. So, when I went to SCCA, I put on a mask so as not to infect other immuno-compromised individuals like myself.

I checked in at the lab (1st floor) and the check in person asked if I was having cold symptoms. I answered in my husky, raspy, cruddy voice that I had a cough and runny nose. I was then whisked into the lab and put into a room where the door couldn’t close fast enough. I had my port accessed, as usual, and left to check in for chemo (5th floor.)

Still wearing my mask, I arrived at the check in counter where the chemo check in person looked at me and asked if I was on “The List?” I told her I didn’t know what list she was talking about. She said since I was wearing a mask I needed to be cleared off “The List.” I told her I didn’t know what she was talking about but that I didn’t have a sore throat or fever. I asked if my chemo nurse had this special power to clear me and she told me maybe I should go talk to my oncology nurse.

So off to the 3rd floor we went (my sister Claire was my chemo buddy du jour) where I paged my oncology nurse. She came out to the waiting room and I explained I needed to be cleared to get off “The List” that I wasn’t sure I was even on. I asked her if she could clear me. She looked at me and said “Me? I don’t even know what you are talking about. I need to talk to the doctor.” Off she went to find the oncologist. A bit later she came back and said you are on “The List” and will stay on “The List” until you have three days of no coughing or running nose.

Sigh…..Back to the 5th floor to the same check in person to tell her I am now on “The List.” It takes about a nanosecond to get on “The List” so I asked how long does it take to get off “The List” All four of the people working at check in drop their heads and shake them slowly, “It can take a month” one of them replied. A month! I am told I need to sit in Respiratory Isolation. Sigh….. So Claire and I sit in the “special” seats so I can hack and cough and blow my nose without infecting anyone.

When it is my turn for chemo, I am assigned to room 22. It is one with sliding glass doors. As soon as the doors are closed a big STOP sign is slapped on the front along with a green sheet of instructions on entering my room. These are essential precautions so the nurses don’t spread my germs to other patients. While I understand and appreciate these procedures, it does make one feel ever so slightly like a pariah.

On Friday, if I have stopped coughing and running, I can call my oncology nurse and ask to be taken off “The List.” If not, there I remain, to be put in isolation for another week (or month) until I can be removed from “The List.”

Tricks of the Trade – Seventh Taxol

One of the rarer side effects of Taxol is “nails changing color or becoming brittle.” The oncology nurse told me that you could loose your nails with Taxol but not to worry about it unless they ooze. Well…..my poor baby toenails are not what they use to be. They have become the victims of Taxol. They have oozed.

I chewed ice during the A/C treatments to stave off mouth sores. I got mouth sores anyway but maybe they would have been worse without the ice. I have mouth sores now and am once again chewing ice during chemo. To help alleviate the nail issues, the chemo nurse decided I should try icing my feet while having chemo. The same principle applies to the toes as chewing ice does to the mouth.

It just so happens that biohazard bags are the perfect foot icing device. There is a zip lock compartment that holds the ice and an outer pocket that is perfect for your toes. So with ice on my toes and ice in my mouth and heated blankets on my body, I spent my infusion time cold and warm. As with my mouth, I am not sure how much it helps but am worried that if I don’t ice, things could be worse.

Sixth Taxol – A Day in Pictures

Today’s post will mainly be a pictorial. I have reached the 1/2 way point with the Taxol. YAY!!! Diana came with me again today. Unfortunately, she has a bad cold so had to wear a mask the whole time we were at SCCA.

Diana was banished to The Chair behind The Stuff. (We drink copious amounts of water.)

This is me waving “Hi” to my nephew Anthony who was going to get this image via text. Sorry, Anthony, no exclusive photos for you.

Baldy and Snotty climb the walls as they wait for labs.

Diana got this picture of me taking a picture of me and my pump.

Self Portrait with smirk and slight googlie eye. (It is hard to know where to look when taking a self portrait. I chose to look at two things (who can make up their mind?) thus the googlie eye.) Note the slight green pallor. I hope it was the lighting.

The long-awaited self portrait with me and my pump. I love my pump.

Some people go out and buy pumps and put them on their feet. Not me. Pumps are for fluids that go straight into your heart where they do bad things to bad cells. I once showed up at work with two different color pumps – black and blue. It was a long day.

The Second Half

Today was the first infusion of the last half of her Chemo treatments. Woot!

Diana is here and she got to meet the oncologist. The oncologist was impressed that Loretta managed to have some unusual symptoms – something she has done all along.

The nurse doing the infusion is Debby – one of our favorites. She wanted to be in the bed, too, but Diana was hogging it. (Not really. Debby is a consumate professional.) Here they all are checking the Google for instructions on how to set up the IV pump:

T-Ville catch up

I have been a bit lax in my posts this past week. Last Monday Roberta was my chemo buddy. We went furniture shopping beforehand at Kasala. I actually found the couches, chairs and ottoman for the new house. It was the fastest furniture choice ever! Scott and I went there on Wednesday for him to do the “butt test.” They passed the test!

My sister Diana is visiting for two weeks. Her sister-in-law, Sue, visited this weekend from Pasco, Wa. We had a good time. We met Sue in Seattle. After going back to Kasala to order the furniture, we toured Pike Place Market. We spent the rest of the weekend on Bainbridge walking around town and hanging out. We cooked some great dinners and enjoyed each others company.

The photo on the left is Cathy, my chemo nurse, and me. The photo on the right is me and Roberta. I am so lucky to have great nurses and great friends.

The Wall

It’s been quiet here on the BooBooBooB even though I often ask Loretta if she is going to write something. She always intends to but often runs out of time or steam. More often than not it is the steam she is short of. Even casual athletes are familiar with the concept of “hitting the wall” – when they get to a point where fatigue overwhelms them and makes going on seem all that much more difficult. Loretta has hit the wall when it comes to her chemotherapy.

She will tell you that she seems to “hit the wall” about three quarters of the way into whatever it is that she is doing. She’s almost there now in the chemo. The symptoms caused by the chemo are starting to get her down. We knew this was going to be a long slog and that we had to look at it as one day at a time but it is easier said than done.

On the other hand, she is able to do a lot more with this course of drugs than she was with the last. That might be one of the problems – she feels like she can do more so she does and makes her really tired. It’s great for her mentally but still hard on her physically.

Like every other time that she has hit some kind of wall, Loretta will get through this one, In two months she’ll be done with the chemo and can have her port removed (something she is REALLY looking forward to). Then there is that pesky surgery and radiation but we’re not thinking about that yet.

She has an appointment with the oncologist tomorrow so I’ll be going and will post pictures of the infusion tomorrow. I know you all look forward to seeing pictures of Loretta sitting in an infusion room. Maybe we will come up with some other kind of picture. Her sister Diana is here so maybe she’ll come up with something interesting.

We haven’t heard many jokes from you in the last month or so. We’re always looking for a good joke.

This week in T-Ville

I am waiting for my third round of Taxol to start. After today I will be 1/4 of the way through this round of chemo! Taxol is kinder and gentler than AC. Fatigue can still be an issue but all in all I am feeling better. Yesterday (and so far today) I felt pretty darn good!

I had three interesting encounters with strangers and cancer this week. The first happened at Home Depot when an employee came up to me and tentatively asked me if I was a cancer survivor. I was about to say, “Well, I am standing here aren’t I?” but decided not to be flippant She was a breast cancer survivor who had been through treatments a few years ago. It was very nice to talk to her and hear her story. She was not so lucky in the support department. While she had one friend who took good care of her, her family was not supportive at all. She is doing well now. Our conversation ended with a hug.

My second cancer encounter occurred outside Classic Cycle. For those you of not from around these parts, Classic Cycle is the bike shop below the condo/townhouse we are renting. I was passing by the shop and a man in an orange “Fuck Cancer” t-shirt came out. Well, my friend Dee had sent me the same sentiment t-shirt in black some weeks ago and it was the first one I had seen on somebody else. (I haven’t had the courage to wear it it public yet.) I asked him about the shirt and we got to talking. He is a nurse that was just diagnosed with an aggressive form of prostate cancer. He was on his way to Seattle Cancer Care Alliance to meet with a surgeon to get a plan. He said a lot of people stop him and ask about the shirt. Some people even want to take his picture to send it to someone they know with cancer. Our encounter ended with good wishes on both our parts. I hope he will be okay.

My third encounter occurred in a deli. I was in Poulsbo (a small town near Bainbridge Island) and needed to eat. As is often the case these days, trying to decide what I actually want to eat can be a lengthy (difficult, indecisive, i.e. not easy) process. I decided to stop at Jak’s deli because they have Boars Head products. The deli has been there about 5 years and this is the first time I have ever stopped in. There was even an on-street parking space in front.

While waiting for my sandwich to be ready, I overheard a women talking about starting radiation the next day. She went on about how it was lucky she hadn’t waited to see the doctor and other such things. A minute or so after she finished her conversation, I went up to her (not my normal thing to do) and told her I was going through treatment myself. I was wearing my hat so I tipped it up so that she could see my bald head.

She looked at me and said, “I have something for you.” I was a bit startled because she talked to me like she had been waiting for me to show up. She said she had it in her car. She got up from her lunch and practically ran to her car. She came back and gave me a book called “Jesus Loves You.” She told me that I just needed to open it to any page when I felt sad or worried or afraid and read what was there. She told me I was beautiful and that Jesus did love me and that I was going to be okay.

I had a hard time holding back the tears. She was so sincere and kind and loving. We parted with a hug (people really do like hugs.) I got to the car and started to cry. The encounter was so unexpected. I was in a place where I had never been before and walked in at the exact time this women was telling her story.

Were these three experiences coincidences? I think not. I think each of us needed something from the other at that time. The woman at Home Depot needed to share her story and I think she felt truly happy that I have such a great support system. The cycle store guy and I shared the reason we decided to seek care at Seattle Cancer Care Alliance. And the deli woman needed to give me the book and I needed to accept it along with all the other amazing gifts I have received.

So, that is what was up in T-Ville this week. David was my chemo buddy today and I forgot to take a picture of the two of us at chemo. So instead I will include this picture of me wearing my special t-shirt. One more bracelet down.

T Off

Cancer knows no holidays. Even, somewhat ironically, Memorial Day. So here we are doing the T thing, round 2 of twelve.

One of the good things about SCCA is that it is near REI. So we went there first and got some stuff we needed. Everyone else was there, too.

Then lunch at a funky place called The Lunchbox Experiment. Essentially a burger joint with a bar, spiked milkshakes and experimental menu items that change every week. This week’s theme was Arrested Development.

Loretta liked it so much she got it all over her sweater. She’s so delicate.

Now she’s getting the drugs.

We are hopeful that the T will be easier. Everyone says it should be and the last round seemed to bear that out.

Fingers crossed.

The night before

Ahhh, the night before chemo. The creeping anxiety of knowing what is to come the next day. The love /hate relationship with the drugs (and radiation when the time comes) that make me feel bad but will ultimately keep me healthy. I call them “insurance.” My take on this whole cancer thing is that I am cancer free. It was all removed during surgery. The chemo and radiation are just “insurance” to a long and healthy life. So while there is the creeping anxiety, there is also the certainty of that long and healthy life that comes with each chemo and radiation treatment.

Two for T

Yesterday* Loretta started the “T” phase of her chemotherapy program. This one is Taxol (“T” in the AC T program**). The really interesting thing is that taxol was first sourced from the bark of the Pacific yew (Taxus brevifolia) which was first collected from trees in the Gifford Pinochot National Forest when Loretta was a little more than 1 year old. She might have hiked past those very trees around Mt. Rainier and Mt Adams while training people to climb Mt Rainier.

Anyway, she gets to go to SCCA once a week for the next 11 weeks. This is only the first day after her infusion so it is a little early to say for sure, but it looks like this one will be easier on her than the AC was. Her oncologist thought that she had the maximum dose of AC that she could have tolerated without having dire (“catastrophic” was his word) affects. The good news is that if the drugs work (and they do) then they did their job very well in Loretta. Hopefully she will not have as difficult a time and will have a chance to heal a little. The effects of taxol are cumulative, though, so it is likely to get harder as the treatment progresses.

So why “Two for T”? The best part about this infusion was that Fiona got to go and support her mom. That was good for both of them. They look so peaceful, the two of them, with their phones and shoes on in bed:

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*Sorry that this post is so late. It was another long day and I just couldn’t do a post justice once we got home.

**It is really called paclitaxel but that just doesn’t sound as good as taxol. And ACT is easier to say than ACP. Try it.