Oy my aching head

Hi there. Sorry it's been awhile since my last post. Today is the first day in 2 weeks I haven't had to pound some advil or tylenol to try and alleviate a chronic headache I've been having since treatment started. Advil took the edge off, sort of, but it never really went away. I did find a miracle tho, Excedrine Migraine. Wow...who needs Red Bull when this stuff is around. I made a mistake the first night taking it around 8pm. It's acetaminophen, aspirin, and 65 mg of caffeine. That night, I couldn't fall asleep but I didn't care....my headache was gone and in my heightened state of alertness I solved all the world's problems!!! Too bad I can't remember any of my awesome solutions. Yesterday I tried just some extra-strenght Tylenol and it did nothing for the headache so the caffeine must be the secret ingredient! Good stuff. But, best taken in the morning, not the evening!

So this week I felt pretty punky til around Wednesday-Thursday which was depressing because I was hoping I would rebound faster. We are switching my nausea meds to something different so at my next dose, I'll see if it works better. The nausea and the chronic headache have been the biggies. Other side effects have been changes in how things taste, some rashy spots, a mouth sore or two, a little tummy trouble here and there, some vision fluctuations, fatigue, chronic cold symptoms, and a brief round of neuropathy. Or at least I think that's what it was. After my first dose, I noticed my typing was really bad and when I would unscrew lids they'd fly to the floor and I was dropping little things like pens and such. Weird. Neuropathy causes changes in the sensations of your extremities. Although my fingers didn't actually feel any different, I sure was dropping everything there for awhile! Thankfully that seems better now, or maybe I've just accommodated! The one side effect I really liked last time hasn't set in yet. Last time, my skin really cleared up and I am looking forward to that again! What's weird is I can already see where the tumor is shrinking. Kind of gratifying to see changes.

This was an "off" week so no infusion on Thursday. I have to say I've been enjoying my weekend! While I still don't feel 100% I at least feel functional and able to do things and get out and about! We gave the puppies baths today and took them on their first walk today. Both of those are really short activities with Dachshunds!! Nothing like bathing or walking a labrador!

My next infusion day is Thursday Feb 23....see you then :)

Round One --- down!

Sorry I am a little late on this one. I had part one of Round 1 last week and was looking forward to a reduced dose this past Thursday for part two. Well, there must have been a miscommunication somewhere along the line (of course the doc says it wasn't him..funny how docs never make mistakes!) but my regimen is actually both drugs, 8 days apart, then a week off. Then we do it all again for the next round. So hearing I was to have both drugs both times was a bit of a bummer. Yes I guess it's easier to tolerate, but I'm more of at do it all at once kind of gal. My mom used to tease me growing up because on house-cleaning day I would just go-go-go. No breaks, let's do this and get it done! Just seems to be my attitude towards everything I guess. I'd much rather feel like 100% crap for a few days and then feel pretty good for the next 2 1/2 weeks than feel like 50% for 10 days, then a week of good. I know my math is off here (story of my life with math ha ha!) but you get the point. I'd rather take it and be done with it than string it out. But it's not up to me and if this is the best way to beat this I'm all for it. Just kind of lousy to feel at half speed with the road still long ahead of me.

So, the actual session went ok on Thursday. My good friend Sharon visited me and that was awesome. I tried to convince Bruce to stay home thinking it was just going to be a quick hour but he would hear none of that and I'm so glad he came since I ended up being there almost 4 hours. The Gemzar was a pain this time, literally. Made my arm hurt like when you hit your funny bone. So they slowed the drip way down and that helped. My counts were way down too. Nothing like being handed a piece a paper with numbers all over it with the tags "critically low" or "low." Apparently, the ones that were critically low they didn't care about...really? You sure about that? Sounds kinda serious to me. But no, there were just two on there that were a smidge low but low enough at this point in my treatment to require a boost. So I'm on the Neulasta. You have to go back the next day to get the shot, but it is a miracle drug that boosts your bone marrow and keeps your immune system up. I had it last time and it was amazing...I am hoping it works just as well this time. It can cause bone pain, but so far not a huge issue which has been a relief.

Yesterday, the day after chemo, I felt freakin' great. Very strange. I did crash a little later and take a big nap, but I was feeling pretty dang good. Today not so much but it does seem to be getting better this evening and has already been better than last weekend. So maybe this spreading out won't be so bad. It's just so hard to predict when I'm going to feel ok and when I'm going to feel lousy. But with 10 treatments still ahead, I'll have lots of opportunities to figure it out. And with those being full sessions each time....more opportunities for visitors!

When do I get to wake up?

Not to be too maudlin, but I was thinking recently about the fine line between being okay, and not being okay. How one day you're fine and the next day you're not. How even one moment makes a difference. It could be anything, illness, accident, trauma, ... anything. It got me thinking about our families too, the ones we see at work. They come in with a little one who they think is bright and funny and maybe a little quirky and leave with a child with autism. Or maybe they've come because their child hasn't quite mastered reading, and they leave with a child with a learning disability. The power of that moment to change the course of someone's life and dreams has always driven my practice but nothing hits it home quite like getting a diagnosis yourself. It makes me think about how we go through our lives each day, assuming the next day will be like the one before. We have our routines and our expectations for what each day will bring. We have to I guess, the unpredictability of all the options that could befall us on any one day is overwhelming. Like a bad dream where things just keep going wrong. Which begs the simple fix....when do I get to wake up from this one?

Round One, Day 1

So I am still trying to get caught up with the blog thing...forgive me for not operating in real time yet! But I'm close! Last Thursday we finally got this party started (yes, I'm quoting Pink. I admit it. I like Pink. Every time I say that I hear her singing in my head and it makes me smile. Oh the little things..... ;) Anyway, I digress. So we got it kicked off, finally! The infusion wasn't bad at all; it rarely is as long as you're not allergic to anything (FLASHBACK: I was alllergic to one of my meds last time and it was not fun...friends who were visiting me at the time can attest to that). And actually, the weekend hasn't been too bad. That's not to say I am feeling great. But certainly better than the last time around. This time, I am getting Gemzar and Carbo. Those are shortened names for some 87-syllable long compounds, but we're all friends here so we use nicknames. The Gemzar is quick, like 30 minutes to infuse. It's crazy. The Carbo takes an hour. So all told after they check my blood for everything, hook me up, give me saline and some prep meds, the whole infusion takes about 3 hours. That is lightening fast in the chemo world. On day 8 of each round, I go back in and get the Gemzar again for a whopping one hour infusion. So it's 6 rounds, but really 12 infusions. That's okay. I'd go every day if they told me. The Gemzar will let me keep my hair, or at least most of it. They say it will thin but anyone who doesn't know me won't have a clue. So that's pretty cool. I don't care about losing the hair (well maybe I do a little) but it's more the sad puppy eyes I get from people who see me. I also work with small children and their parents who come to me in an already somewhat vulnerable state....I don't need them freaking out more because of the bald lady. Last time I wore a wig for all my work appointments, but man those things are sooooo uncomfortable. Since my doses are spread out, I won't need the Neulasta that I had last time. Neulasta is a miracle drug and kept my blood counts up and my immune system strong. Love it. But hate it too...it causes a LOT of bone pain and that also with the muscle and joint pain from the Taxotere last time, I was a much more miserable puppy than I am now. This time I've had some nausea, headaches, bad tummy, and SUPER tired. They said that is one of the major side effects of this regimen: fatigue. I think I've slept 12-15 hours a day this weekend, plus some naps ha ha! But sadly friends, my taste for coffee has already started to go. Woe is me. Starbucks is my lifeline and now, well, it tastes kind of oogy. Well that's pretty much it for this weekend. Thanks so much to the friends who have sent me messages, or brought me comforts, treats, meals, or just stopped by for a visit. You all rock and I would be lost without you and my family. My husband is my champion and goes everywhere with me and my daughters fill me with love. And I can't forget the puppies and PennyCat!

A brief recap, well maybe not so brief....

So I came up with a title! Yay. Maybe not the best one but kind of how I feel about this. What can you do.....you just have to do it again.

I thought a little recap might be in order here but then it's full steam ahead. I don't like to dwell in what I call my "gloom bubble." It was not a fun place to be and I don't want to go back. But I think it's an important part of this whole process. So, as you know from Post #1, I discovered some nastiness on New's Year's Eve Day...here's the run down from there:

New Year's Eve Day 12/31: As I look in the mirror "Yikes! That can't be right!" and I call the doctor but it's SATURDAY and NEW YEAR's EVE so I sit at home wondering what the heck is lurking in my breast. Is it inflammatory breast cancer?? Of course that's where my brain goes. Google that one...it's not good. So Sunday plods along, then Monday which of course is a freakin' holiday for everyone. The finally on Tuesday they call and set me up with an appointment for Wednesday. So at this point, about 5 days of freaking out has transpired.

Wednesday 1/4: The doc agrees that indeed things do not look right and sends me off for an ultrasound. Now, you know things are going badly in the ultrasound when the tech asks you "So did you ever have any cancer over HERE?" which of course was NOT where my cancer was before. Before I can say "Oh crap" to myself she leaves the room and comes back the radiologist who just "wants to take a look for herself" ...another bad sign. Well there seems to be a new "spot" so I'm set up with a biopsy on Friday.

Friday 1/6: Breast biopsy day. Breast biopsies are not fun. Not fun at all. Enough said. We'll call you Monday and let you know the results. Monday rolls by, Tuesday rolls by... no call from the doc. I did get a voicemail from the biopsy nurse asking how I was feeling about everything and how was I healing.

Wednesday 1/11, is my appt with the oncologist and he asks me "So how are you feeling about the results?" What freakin' results??? Why does everyone know about my results but me??? An oversight apparently as to who was supposed to call me. Thanks. But the results are what I expected. Breast cancer, estrogen positive, different location but same breast but a recurrence. Looks to be 2 cm. I'll need a mastectomy for sure this time, then likely chemo since this seems to have come out of nowhere. I've already had that breast radiated so I can't do that again. It's up to me if I want to do a bilateral or single mastectomy and it's my call on reconstruction, which they can do simultaneously. Wow...my head is swimming. Next steps: Breast MRI, meeting with surgeon, and a PET scan.

Thursday 1/12: Breast MRI day. Always a good time. Lie on the table on your tummy with each boob hanging out a cut-out opening like a milking machine. The best part is when the tech reaches in under there to "position" you properly. Then the clanging from hell starts. But all in all not a bad thing as far as tests go.

Friday 1/13: The MRI lady calls and says it all went well. They saw the cancer where they were expecting, other breast looks fine, lymph nodes look fine, doesn't look attached to the chest wall so all in all, no surprises. Whew. That's a relief. But wait a tic....later that night the oncologist calls (ok so NOW he calls) and tells me the tumor is actually 7 cm (WTF??), we can't rule out the chest wall being an issue, and one lymph node appears to be "affected." Huh? How do we go from 2 cm to 7 f'ing cm??? So it's looking like chemo first to shrink the tumor but we'll see what the surgeon says on Tuesday. So from feeling pretty good to feeling pretty crappy about it all again. My niece and her fiance were visiting that night to give support (and meet our new puppies) but I had to go upstairs for a nice little cry for a minute.

Tuesday 1/17: Visit with the surgeon. Oh how I love my surgeon. She is amazing. She knows everything and has the most calming and confident presence. The first thing she said was "Oh I can cut that out." She had no concerns about the size or location of tumor. She also said she thought it was just 2 cm but that there was probably a bunch of DCIS in there that was clouding the area up making it look bigger than it was. I also hadn't gotten a straight answer from anyone as to whether it could be inflammatory breast cancer and she matter of factly said "No, you don't have all the skin changes. I just think the tumor is pulling up over here and causing the disfiguring." Oh god I love this woman. She then told me how chemo first could be a really good thing, not to shrink the tumor but to give me time to decide if I wanted the bilateral and to line up reconstruction if I was interested in that. She understood my desire to just get it done, but also wanted to be sure that I had the time I needed to think it through. So by the end of that visit, I was feeling pretty good again thinking I would do chemo first, then use that time to decide 1 or 2 boobs off and meet with plastic surgeons. It's been quite a roller coaster up to this point....good news, bad news, good news, bad news....Later that day I had the PET scan. Pretty routine. Drink some nasty crap, go outside and sit in a semi-trailer perfectly still for an hour then get scanned by the nuclear machine. I've had one before, and it went well. The PET scan works by lighting up parts of your body that are consuming sugar at a faster than normal rate. All cells like sugar, but cancer cells REALLY like sugar. So when they find one, they call it a "hot spot."

Wednesday 1/18: Back at the oncologist for the plan. He starts going over all the test results, and I share with him what the surgeon has told me. He gets to the PET scan. Yes the boob lights up, we expected that. Except this time, so does a lymph node, and there are 3 "hot spots" in my liver. What? Umm...did you say liver? Does this mean this shit has spread already????? Could be benign, could be a hematoma...did you have anything on your liver last time? Uh, no. He digs up my old records, nothing there on the liver 3 years ago. Okay, well, they are taking up sugar suggesting they are most likely the same cancer as in your breast. So we'll need to biopsy your liver. We'll definitely start with chemo first, then the surgery, and the some radiation to your liver. He went on about this but honestly I had stop processing way before this point. I had entered what I later came to call the "Gloom Bubble." I won't dwell on the Gloom Bubble, I spent enough time in there. A solid 5 days or so. Wednesday night when we got home I went straight to my room. I couldn't tolerate light, sounds, nothing. Literally under my blanket I went and that's where I stayed the whole night. I tried to do better the next day and the days after but it was such an effort to try and seem normal. So much energy spent trying to fight off the gloom that I was exhausted at the end of each day and sleep was not a problem. I was gloomy enough thinking that getting this shit twice can't bode well for one's lifespan in general but to hear it had most likely spread was devastating. Add to that putting my daughter back on a plan to France for 6 months and I was one sad puppy. The Gloom Bubble was an interesting phenomenon, I had no control going in, and just as strangely I emerged sort of spontaneously. Just started feeling better on of all days, the day of my liver biopsy.

Monday 1/23: They called me Thursday asking if I could come in the next day for an abdominal CT. I asked what for and the doc said to get a better picture of how to get the biopsy done...not for any other reason. Ok....but then they said oh wait, we'll just do it all on Monday. So Monday rolls around and off to SkyRidge Bruce and I go. After an abdominal CT and an ultrasound and 3 hours of waiting, they said they couldn't do the biopsy. One spot is on the high point of my liver, just below my lung so to send a big honking needle into my lung and out the other side to get at this thing would be risky. Ok, so let's not do that. The other spot is tiny and between two major vessels...again, risk level not good. The third spot is so tiny it doesn't even show up on the ultrasound. So no biopsy for me. Later the doc said if we'll do the chemo and if the spots go away, we can assume it was the same cancer and follow up with radiation. If the spots don't change, we can assume they are benign. If the spots grow, that would mean they were something else and we'd maybe have more to biopsy. I am hoping for door #1 or 2!

Tuesday 1/24: Chemo teaching day. Thankfully they give me the short version and the gawd-awful video has literally burned up so I am at least spared that again.

Thursday 1/26: Day One of Chemo.....well not so fast there missy. Turns out my doc changed my regimen Tuesday afternoon and the insurance company has not had time to review and approve it. So there we are in the infusion room, but a no go on the chemo. :( Boo hiss. On the plus side, the new regimen will be spread out over time and be easier to tolerate and I won't lose my hair, but on the negative side we can't start it til next week! But I'm actually ok with this. Annoyed, but so grateful that the set back hasn't derailed me. I am handling it. I am not sliding back into the Gloom Bubble. We will get this done.