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Celebration Time, C’mon!

Today was a momentus day. I had my very last chemo treatment. It went well, and I was sleepy as usual throughout it. Something they administer makes me want to take a nap, though technically nothing they are giving me is actually sleepy-inducing, but after 4 weeks, I beg to differ! I walked back to my car, trying to decide where to eat lunch, and decided on a Vietnamese restaurant close to a private school campus (Seattle University) near where I parked. I had a lovely noodle dish with lots of fresh veggies (called bun), and treated myself to a celebratory taro bubble tea. The nurse asked me how I was going to celebrate? Well, I  knew I’d be going home and sleeping, and then be feeling like utter crap for 5-7 days, so it was hard to give an answer. I think I will want to go out and have a nice meal somewhere in 2 weekends, when I’ve mostly recovered and my tastebuds will allow me to eat regular food. Hopefully. We will see. There’s a couple italian restaurant dishes I’ve been salivating over. Most of my friends are either far away or on a super low-income and can’t really afford a nice meal out. I might just have to do dim sum, which seems to be a theme for a community meal every 2 weeks! I hope I can keep feeling celebratory as I go through the next week, knowing it’s the LAST time I’ll feel like this, on a day-to-day basis.

And as expected, I got home close to 2 and was in bed a few minutes later. I slept until 7:30. I expect I’ll be back in bed again soon for another 8 hours before getting my Neulasta shot early tomorrow and heading to work. I decided to take Friday and Monday off to be a miserable lump at home. Based on the last few times, I know that I’ll be in really bad shape and barely able to function. I remember last time just driving to work was a big deal. I had a difficult time working at all. As the fatigue and illness has accumulated each treatment, I expect this time around to be worse, so I’m planning on just staying home. I did schedule more fluid IVs though – for both Friday and Sunday. I hope that helps mitigate how I feel a bit.

An update on my fingernails – they are all lifting up, quite a bit, and I have at least 1 if not 2 nails that are infected. I’m back on antibiotics, but 10 days this time. I also have orders to soak my fingers in epson salt and hot water twice a day. Until the still-connected portions grow out enough, I’m stuck being partially handicapped, at least that’s how it feels. I also decided to wear nail polish so I wouldn’t have to see the nasty discoloration on my nails, and now I have no idea where/what they look like with this latest issue. I’m definitely NOT going to be using acetone on them, with them lifting and delicate.

A celebratory Taro flavored Milk Tea with Tapioca (aka Bubble Tea). It's *the* thing to try in the Northwest.

A celebratory Taro flavored Milk Tea with Tapioca (aka Bubble Tea). It’s *the* thing to try in the Northwest.

A-l-m-o-s-t done, and more side effects (I wish this were over)

The end of my chemotherapy is on the horizon. I can’t believe it’s almost done. However, I still need to make it past the third treatment, and it’s continuing to be a lot harder than I could have imagined. I think my mid-treatment blood results tell the story best: My white blood cell counts were barely above the walking living (any lower and they would have put me on medication) and my immune system results were so low they put me on a “just in case” course of antibiotics for 5 days. I think that’s why I’ve been feeling so horrid. There’s no way to explain what it feels like. Constant nauseau, lack of appetite, eating feels gross, not having anything in my stomach feels even worse, having this chemical coating in my mouth that makes food disgusting to eat… then add in general feeling of malaise (shaky flu-like feelings), and have that happen for oh, let’s say 6+ days now. It’s worse than the last treatment. I’m not recovering as well as I had been; they warned me the effects would be cummulative. And now I have one  more to go. The actual chemo itself isn’t bad, it’s the days and days that come after that are the part I dread. I have to keep remembering that this is just 2 1/2 short weeks left before I’m done.

For the first time, I’ve been starting to work less. It’s been difficult to pull long hours at work, so I’ve been going home early a lot. I expect that I’ll actually take 2 days off in addition to my treatment day for my last chemo session, which I never thought I’d have to do. One of the drugs they gave me, adavan, helps with nausea, anxiety and assists with sleeping. I’ve been taking it every night to get a full night’s sleep, and to help with the overnight nausea and it’s been wonderful, as much as I hate relying on a drug. Lately I’m taking it mid-evening so that I fall asleep sooner because I’d much rather be asleep than awake feeling like I do. It all sounds so horrible, right? Well, it is, and I can’t wait to be done with it, and I don’t recommend anyone ever go through this if they can help it!

I have some dates scheduled for my upcoming treatment. It’s so nice to be moving into the next phase:
Feb 26 – last chemo treatmemt
Feb 27 – last Neulasta shot (to stimulate white blood cell production over 2 weeks)
March 5 – blood test/dr visit to look at my mid-treatment results
March 15 – blood test/final MRI to see how the AC drug worked/meeting with my oncologist
March 19 – meeting with surgeon to discuss my options and probably to schedule surgery

I’ll probably have an additional 2 days to go in for IV fluids as well, I think, but they haven’t yet been scheduled. I expect my surgery will be somewhere either the last week of March or early April. From that point, I’ll be “recovering” for about a month. At least 2 weeks of that will be at home, and then I’ll see if I can do some part-time days at work. Once a month goes by, I would start my 6 weeks of daily radiation, May through mid-June.

I look forward to growing hair again. Right now I have no nosehair, no eyelashes, a few strands of eyebrows (not enough to look like them though), and scraggly short bristles on my head (pretty much bald). It doesn’t look like hair. It’s odd how eyes look without any definition of eyelashes or brows. I have been told my hair will start growing in about the time I start radiation. That’s 3 months away. I look forward to being able to eat and appreciate food again. Chocolate doesn’t even appeal to me! Not that I eat a lot of it, but everyone likes chocolate, right? There are no foods that I look forward to eating. Eating is a chore and a struggle right now. I do look forward to some yummy italian food and of course, Sushi! I also look forward to my fingernails being normal. As a longer-lasting side effect of the neuropathy, my fingernails have all started lifting up from the nail beds. You can look at and under all my nails. It’s really distressing and difficult to deal with. I’m trying to keep them short and trying hard not to do anything that might yank on them. It was suggested that I tape them down. I don’t now how long it takes what lower portion that is still attached to grow out, but I know it will be a long while. Until then, I have to keep an eye that they don’t start smelling bad or have pus (ie, become infected). Lovely.

Sorry for all the doom and gloom. This last week has not been the best experience of my life. I do appreciate everyone’s support immensely – thank you all for the cards, the checks, the packages, hats, well-wishes, and phone calls. I could be a lot worse, and my diagnosis could be even worse. I’m thankful for all my friends and family, and just have to muddle through another 3 weeks before I start feeling normal again.

 

Party at Swedish (aka my third AC treatment)

Today I had my third AC treatment. I’m officially past the halfway mark. It went well. Going into Swedish cancer institute is turning into socializing more and more. There are a few patients I recognize and chit chat with. Some of the nurses are really friendly and give advice (especially as some of them have had breast cancer). An ex-coworker/friend works 3 blocks from where I park, and I stopped by to say hi. We will be doing lunch on thurs. Jessica, the gal that is ahead of me in the treatment program that I was paired up with has radiation there everyday so she came and visited a little with me today. And of course as I park at Jodi’s house I sometimes see her when I get back to my car. Whew! It does make it more fun than just cancer and drugs and sickness, but it feels weird to be chatting and hanging with friends when I’m due at work.

Both Jessica and the nurse I saw today advocated for getting a fluid IV, saying it would make me feel a ton better. I am supposed to hydrate like a fish to flush out the chemicals floating around. I admit, I have not been doing so to the level I should be (at least 2 liters a day). So I’ll be going in for 2 hydration sessions, one this Thursday, one this Saturday. Plus a visit tomorrow for my Neulasta shot (to stimulate production of white blood cells which the AC completely decimates). One fun fact – I was told by my favorite nurse (she knows so much, having gone through it 4 years ago) not to drink green tea. It has anti-oxidants, and that’s bad. Think about it. The chemo is acting like free radicals, going out and destroying fast-growing cells. Anti-oxidants go after free radicals. Usually that’s a good thing, but during chemo it’s not. So no green tea. I should be doing no caffeine either (it causes extra heartburn on top of what the chemicals cause, which is why I’m taking pepcid 2x daily), but I have been having some on occasion, both like 4 oz. of coffee in the morning (at most!), or a soda sometimes.

I just got home, and expect I’ll be  in bed by 6 pm for a 12+ hour sleep session. I don’t know what they give me that makes me so sleepy!!!

Update: Halfway through AC, 1 month to go

It’s been a while, so let me bring you all up to date. I finished the 12 weeks of Paxlitaxol (aka taxol) chemo treatments the first week of January. I had a recurrance of the rash from the study drug, so they decided to skip the study drug the last week (which means I didn’t take it 2 weeks out of the 12 total), but I did continue with the chemo. I wanted to celebrate that milestone – finishing one drug- before I started the next, so I had a champagne cocktail brunch at my apartment for friends on New Years Day. It was great. All my friends and a few others came by. We consumed 5 bottles of champagne and dented several liquor bottles. I learned how to make the French 75 and the Champagne Cocktail. I used my bundt pan for the first time that John sent me as a christmas present. It was great. I drank 4 drinks, didn’t get a hangover, and had a nice little celebration.

Due to the rash, my doctor wanted me to take a week off before I started the next drug course, adriamyacin and cytoxin (2 different drugs that together are known as “AC”). I started the AC mid-January. I had been hearing from *everyone* how hard it was going to be. Man, they were right! It was a real challenge. The actual chemo itself isn’t that bad. Seriously, it’s like going to a spa and instead of a massage, you get chemicals. You sit there, they give you a warm blanket, you hang out for a few hours, and they give you food and drinks (bad food, but still) if you want them. The fun actually starts 3 days later. There are a lot of other “pre-drugs” that are given to help with side effects. These stay in the system for a few days and as they start wearing off, and the chemo drugs start making their presence known.

I’ve been through 2 treatments (out of 4) so far. Two days after, I start crashing, and crashing hard. If you haven’t gone through it, it’s really difficult to explain exactly what it feels like. For me, on this drug, I’ve had incredible fatigue, shakiness, low-level nausea constantly, and generally feel like shit for a solid 4 days. Then after that I start improving, but not much. I can do things, I can attempt to eat things, and I start feeling more normal about 9-10 days afterwards. It’s really difficult to feel really ill for days on end. It’s like when you get the flu really bad, and your body is shaky and dull and you have that general feeling of malaise, only it’s constant. Add in feeling nausea all the time. Ugh. What makes this all even worse is this chemical film in the mouth – food is slimy and gross. Eating feels gross. Having food in your stomach feels bad, and it’s worse when it’s empty. Basically, you can’t win no matter what. I have 1 more month of this (2 treatments) and I don’t know how I’m going to make it through it. It is really depressing to think about, which is why I have been having an emotional breakdown every time I go in and get blood drawn (either on the off weeks when they just want to see my blood chemistry or when I’m getting the IV put in for treatment along with the blood test on the day of treatment). Up until the AC, I could handle it ok, it was no big deal, and I was pretty emotionally stable. Now I have to have a little crying session in the bathroom before I go up and see the nurse.

Anyway, saddness aside, I’m doing well. Work is going well, everyone is super supportive there. I can be gone whenever I need to, and there’s no questions or issues. My new boss (recently hired) is very concerned that I come in and work as much as I do. Even with treatment and weekly dr appointments, I’ve been working full-time, and often manage to catch overtime to make up for time out. It can be hard sometimes, but if I feel sick at work, at least i have something to do and think about rather than just sitting at home feeling the same way. I’m still being social – when I start feeling better near the end of the 2 weeks, I make plans to go out with friends, and that last weekend, I make plans for daytrips and social get-togethers. Outside of treatment day, I’m generally in good spirits and happy. I’ve managed to not get sick to date. I’ve fought off the cold/flu 3 times. I’ve gotten that sore back of the throat/hard to swallow feeling a few times and taken so much Emergen-C and garlic that somehow it went away. Even on chemo with a suppressed immune system. I’m still having great blood counts (at least on the days of treatment), so the drs/nurses are all very happy with how well I’m physically dealing with all the chemicals. On the off weeks it gets pretty darn low, but I’m having shots the day after treatment (for the AC course, it’s called Neulasta) which boosts my white blood cell production, and it’s a 2 week cycle to get it working (so 7 days in I’m not looking great, but on day 14, it’s fabulous).

Food is super challenging right now. I’ve found that the things that I can eat are things that are lemony or spicy. My favorite thing to eat is Pho – a Vietnamese soup. Thai and Vietnamese restaurants are super common and popular in Seattle, so they are everywhere. The soup has thin rice noodles in a chicken broth that you add bean sprouts, jalepeno slices, thai basil, and lime to. You season it with hoisin sauce, chili sauce &/or sriracha. It tastes great, goes down well and makes me feel good. I eat it every day when I feel crappy, and I’ve been loving the spiciness. Luckily there’s a Pho restaurant a few minutes from where I work, which I’ve been taking great advantage of!

I had a 3rd MRI after the taxol and it showed that my tumor had shrunk quite a bit – it turned from a 4x5x6 cm tumor into one 1x2x6 with 4 “islands” of cells surrounded by dead tissue. Will see what happens with the AC. Regardless, even if it’s totally gone, when they operate, I’m expecting they will want to do a full mastectomy as a precaution. The whole point of all the chemo, and the radiation to follow after surgery, is to kill any loose/rogue cells that have spread elsewhere in my body that they can’t see. The tumor is like an indicator of how well the visible cancer cells are responding to the drugs. I’ll be told afterwards, when they do the pathology on the actual tumor/tissue, what my likelihood is for recurrance afterwards within the next 5 years. That’s the concern – that if they don’t “catch” it all, it will come back. That’s why cancer patients are followed so closely for the 5 years after treatment. If it is going to come back from missed cells, it happens within 5 years. After 5 years, that indicates that it worked, and it’s only “new” cancer that is a threat. Anyway, I’ll learn more about that when I meet with the surgeon and find out results after surgery.

Ok, a few photos to lighten things up:

First AC treatment.

First AC treatment.

My new wig

My new wig

Afterparty following the Frye Art Museum opening. Pizza and beer at Stellar's.

Afterparty following the Frye Art Museum opening. Pizza and beer at Stellar’s.

Antiquing in Tacoma with my dear friend Andree.

Antiquing in Tacoma with my dear friend Andree. Thanks to Karen for the awesome sock monkey hat!

Rash, fasting and treatment #9

Today is treatment #9. I started getting a rash 9 days ago, just before my last treatment. Well, it’s gotten a lot worse and a lot itchier. My rash covers my chest, is all over my hands and is running up both arms (front and back). I got a prescription for an antibiotic topical cream but it seemed to be completely ineffective. Today when I met with Barry the research nurse and Dr. Ellis, they looked up the study protocols. I have a level 3 rash so I won’t be taking any study drug today so that it can get back to level 1 or heal up altogether. The chemo drug I’m on, Taxol, does cause rashes too, but not on the chest, which is how they know it’s the study drug.

Apparently the antibiotic cream is the wrong thing and I now have a topical steroid to take. And according to Ellis, rashes usually have a 10 day course at least, so it may not matter quite what I’m given anyway.

I’m currently hooked up in the treatment center (aka chemo ward) and its a full house. There seems to be a lot of sick people today. It’s a reminder that as bad as my situation is, it’s not THAT bad. I don’t have leukemia (cancer of the blood), or bone or brain cancer like other people here. It’s not metastasized or spread throughout my body. I also don’t have to be wheeled about in a wheelchair.

Actually I have proof that I’m doing really well. Both last week and this week the nurses have said “wow” when reviewing my blood counts. Apparently my levels are comparable to a normal person not undergoing chemo. I have the best counts they’ve seen from anyone this far along into treatment. “Whatever I’m doing, keep doing!” I’m also always asked from the various nurses I see if I’m still able to work. Say what!?! Um, yes I am, why wouldn’t I be able to?? I get the impression that the fatigue is pretty significant and debilitating for a lot of people. Well, not me!!!! I certainly feel it, and I kinda crash Fri and Sat both, but I can still get things done, albeit more slowly and over a longer period of time.

This week I went out a LOT. Sunday I organized dim sum on Sunday and it morphed into 10 people. I hung out with Cat all day after and yesterday met a neighbor who is also a client I work with for drinks down the street at Cactus. I had just found out she lives 2 blocks away. I’m spending lots of time socializing which is nice. Keeps me occupied. I’m starting to deal with people that don’t know. It’s an interesting thing, figuring out if/when I should tell them. It’s kinda obvious that I gave zero to no hair under my hat which generates puzzlement from strangers and questions from acquaintances. Part of the issue is that I don’t want to talk cancer exclusively. I understand people are curious, but I don’t want that to be the be all and end all of my social interaction. I guess it’s hard for people to tell I’m sick, since I don’t look sick (according to many of my friends and coworkers).

I’m almost done with chemo, maybe 45 mins to go. Jodi offered to make stuffed chicken breast and salad for dinner. Yum! And today I can eat whenever I want since I’m off the study drug today. Oh yeah, they did say that the rash is one of the big side effects of the drug, but it is rather rare that it’s manifesting so late in the treatment. Lucky me.

Oh, and here’s a pic of me as a baldie. One of my better ones:

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Ho ho ho…hat overload

Hi all. I think I have reached maximum hat overload. Please, no more hats! I have more than I will ever wear. Here are 2 of the latest ones:

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And of course there’s the old classic, that I got several years ago from my good friend, Lee:

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As you can tell, I’ll be getting a lot of mileage out of this one this month! Between that and a few other hats I’ve been sent as gifts (Thank you Dianna & Aunt Terry!), I don’t think I can use any more!!!!

Other than that, things are going ok. I’ve been a social butterfly this week. I went out to dinner with friends and coworkers at a favorite restaurant on Weds, the Tamarind Tree, and we had a fabulous time. I even had a cocktail and it went down very well (lemongrass martini!). Tonight is my company’s annual holiday party. I am getting a ride there and a ride home (as I don’t drive on Fridays due to my really bad blurry eyesight), so I’m going to go, and sit in a corner and be tired, but social.

Chemo #8 is behind me, I have 4 more taxol treatments before I switch to adreamyacin “AC” in mid-January. These last few days have had a new side effect – a rash. I have this horrible itchy rash all over my chest, and now it’s starting on my hands and going up my arms. Anti-itch cream is not quite doing it. I’m getting a prescription on Saturday for an antibiotic topical cream. The study drug I’m taking has a 40% chance of causing rashes in patients, so I’ve finally hit that side effect. It’s driving me crazy. And food is starting to taste funny. A lot of what I try I don’t like – so it’s been intersting figuring out what I do like to eat.

This weekend I think Mark is coming up to start work on a kitchen mural I asked him to paint. Saturday night I am going to visit a friend that just had surgery (she’s on the same path I am), and Sunday we’re celebrating Cat’s birthday with a big day out. We’re starting with a big dim sum meal (at least 10 people), then shopping downtown, then happy hour afterward. No cooking this weekend, just hanging out and having fun. I expect I’ll be pretty tired by Sunday evening. ‘Tis the season!

Thanksgiving Update

I wish all of you have had a wonderful holiday! This is the time to share with friends and family, cook, eat, and relax. While I miss my family, I did spend it a good friend and her family (all women, very low key). I’m having a nice, casual, very relaxing time in Salem, OR. Food, talking, sleeping, movies, chillin’ on the internet… a nice little vacation away from home. It’s nice not to be sitting home alone for several days.

I’ve had a nice time checking out food porn on foodgawker.com (one of my fav sites EVER), salivating over cooking stuff, and watching movies on the big screen. Casino Royale, 4 Layer Cake, and Secretary. Not sure what we’ll be watching tonight.

Hope you all are having a great time! Sunday we leave early to avoid the traffic back to Seattle, and I’ll be cooking with Cat that afternoon. I think we’re going to keep it uber simple this week since we both are pressed for time. I may just make a random pot of soup and a dessert, something easy to cook. I don’t know if I should do muffins, or a pound cake, or a pumpkin bread, or a coffee cake… will see! (I’m leaning towards a pound cake).

I’m also trying to decide how to decorate for Christmas – I will be housesitting for a friend and her ats for 8 days, so I won’t be around during the actual holiday, so I may just do some cedar boughs on my mantle, and some lights, and hang ornaments there, rather than getting an actual tree. Will pick up some stuff this coming week and break out the ornaments.

Here’s to a season of merry making, eating, and friendship! Wishing you all well!