I was LITERALLY being literal

Hi everyone!

This is an off week, so nothing new to report. I made it through the weekend just fine and we had a really great Easter.

The point of this post is to clear something up.

When I wrote the initial message regarding my diagnosis and sent it out, I stated, “I REALLY don’t feel like talking about it right now. I’m still trying to process everything.” And I meant it. I had no idea what was going on as I had only been given the news a few days prior and just met with the oncologist.

However, I really did mean “right now” when I wrote it as well. I figured sending out a message to as many people as I could at the same time meant that everyone was finding out about it at the same time. I was being kind of selfish because I couldn’t handle it if everyone came at me all at once with phone calls and emails asking questions I couldn’t answer. I did receive emails and texts of love and support, which I appreciated, but I didn’t have to know anything or try to think too hard to say thank you to those.

It has recently come to my attention that some people are still reticent about calling or writing me because they think I can’t handle it or still don’t want to talk about it. Please know that I am 100% ok with talking to anyone about anything and answering any questions you may have. I’m sorry if anyone felt they couldn’t talk to me, because I am, and have been for a while, ok with everything going on. In fact, some people have even told me that they find it very easy to talk to me and ask questions about my cancer and they didn’t think that would be the case (not to toot my own horn, but… TOOT. TOOT.)

In all seriousness though, PLEASE do not hesitate to call, text or email me just like before. But please remember, just like before, I am still a busy mommy of two little ones, so I’m not avoiding you or too sick to go anywhere… I’m just pretty much homebound from my life in general.

 Love to you all!

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Fuzzy Wuzzy

I’m about to leave work for my third treatment (technically 2a) and figured I’d catch you all up.

The bob is no longer. My hair was falling out like gang busters (and drain busters for that matter), so it had to go. On Sunday, while Darcy was napping, because Megan didn’t want her to hate her because she was the one doing the clipping (my poor sister… I love you!!!), Meg, my mom, and I did a shot or two of homemade lemoncello and it was bye bye hair. She didn’t take it to the skin, so I have a buzz cut going.

Here is what I have discovered since shaving my head:
It’s MUCH cooler
It feels funky when the wind blows on it
My head isn’t misshapen
Darcy thinks it’s funny and will rub it once in a while and giggle
It takes .3 seconds for it to dry

I’m sure I will learn more things, but that’ll do for now.

As for the wig situation… Bryn Mawr offers a free wig program for female cancer patients which is a wonderful, wonderful thing. I went on Friday before the big shave and got one. The woman there could not have been nicer and she was very patient with me as she explained everything and we tried on wigs. Now, we were initially just going to try on curly wigs, but it was instantly clear that curly on a wig is vastly different from my definition of curly. It’s more wavy and choppy in the wig community so I tried on ones that looked like Mrs. Brady or “the Rachel” and also some that made me look like I was about to get my big break at the Grand Ole Opry… None were right. So we switched to straight and I found one that reminded me of my hair at my wedding. I went with that one and left. The ride home was VERY illuminating. As I was driving, I could NOT keep the bangs out of my eyes, which isn’t a big deal, but I was also SO FRICKING HOT that I was sweating like a pig. I don’t know if it was because the wig is synthetic and doesn’t breathe well or if all wigs are like that, but GOOD GOD I could not get it off my head quickly enough. So I’m rocking the hat look for now. I tried a couple scarves, but they didn’t stay or look quite right either. I’m pretty much going to avoid the wig unless absolutely necessary.

What’s REALLY not right about this whole situation? I STILL have to shave my legs… REALLY???? So not fair.

Happy Easter everyone!!!!

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Hair today…

Today was a big day for many reasons:

Jake was christened today. Apparently, the deacon thought that Jake has a future in scoring movies, because he kept calling him John Williams. One can only hope!

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Darcy is in her big girl car seat now. She got to ride facing forward for the first time today and her reaction was “Whooooaaaaa” and “Ooooooo”.

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And finally, as you probably gathered from the title of this blog, my hair is falling out. I’m ok, it sucks, but what can you do? I had what seemed like a softball sized hair ball after my shower today, so I made my sister cut my hair in her kitchen after the christening party. I figure if my hair is shorter, my drains will be saved the torture. My sister’s response to my request: “But what if I screw it up?!” My reply “It will only be screwed up for a week or two, so who cares?” So now I am sporting a sassy bob.

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I’m looking into wigs ASAP, so hopefully it will all get settled before it’s all gone. Fingers crossed!

 

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The Waiting Game

I had my second course of treatment (technically 1b) on Wednesday. I got there at 1, saw the doctor right away and we went over how I did with my first round. He was really pleased with what I had to say;  my nausea and tiredness was manageable over the weekend and that I was feeling better by Monday afternoon. What he was REALLY pleased with was how much the node on my neck went down (which is why it was left there in the first place… to serve as a barometer). It no longer feels like there’s a big walnut in my neck. It’s still there, but it’s pretty flat now. He used the word “striking” when describing its shrinkage… I’ll take it.

Then it was time for treatment 1b. This is when the waiting took place.

Now PLEASE don’t take this as me complaining about waiting. I am definitely not complaining. Sadly there are a LOT of people with cancer and Bryn Mawr is good. People asked why they would make so many appointments for the same time. My thinking is they didn’t. It’s just that there were probably some delays in treatment for one reason or another (like there was in mine), and people were there longer than they normally would be.

So… There were no chairs for me in the chemo room because they were crazy busy, so I had to wait for about 20 minutes for one to clear. Once they sat me down (around 2), they accessed my port and drew some blood to test my levels. And then I waited again. Obviously with so many people, the lab was backed up as well, so I’m going to say it was 30 minutes before they came back.
Right when I was about to get my meds, the one nurse tells Janet (the one who has taken care of me both times now), that my white blood cells were juuuuust below the level where they won’t give me my chemo. Because it was so close to the edge, they had to talk to my doctor to see if he wanted to continue with the planned dosage, lower my dosage, or postpone my treatment. So after about 20 minutes they come back telling me that I can get my regular dosage but I have to come back the next day to get a Neulasta shot that will stimulate the bone marrow to make white blood cells. This may cause bone pain, so I need to take, of all things, CLARITIN, because it helps keep the bone pain at bay. My sister had mentioned this to me before I started treatments so I had it on hand, but I still think it’s CARAZAY.

Once we got all that squared away, the actual treatment was under 2 hours. I was out of there around 5:20. My mom took the kids that night because it was our anniversary, so Jay and I went out for a nice dinner and promptly passed out around 10. Of course, I woke up at 5 because chemo causes insomnia and Jay was up at 5:30 so apparently, our bodies wanted to protect us from thinking we should sleep past 7 at any point while the kids are still babies.

I went in for my Neulasta shot Thursday morning. OUCH. I’m not going to lie… it stings!

I woke up this morning a little run down but I still feel ok and I’m at work now.

Sidenote: I’m not sure if I’m losing my hair. Today was the first time I washed it since Tuesday. When I don’t wash my hair every other day, it falls out in clumps anyway, so this being the third day, I don’t know if it was normal or if it was the real deal. I’ll keep you posted.

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Marrow Escape

Good news! I just got the results back from my bone marrow test and it’s clean! They found no cancer in my marrow, so I am still Stage 2 which is always better than Stage 4.

So what does this mean for my treatment schedule? Nothing really. After my fourth treatment, I’ll get another PET scan to see how I am reacting to the chemo and then we will go from there (which was the course of action all along).

As for how I am feeling in general, I am doing well. My nausea finally passed Monday afternoon so that was a nice surprise. Unfortunately, I either have a cold or my allergies are kicking in, I can’t tell which. Sigh… talk about adding insult to injury!

Next treatment is next Wednesday, April 2 (Happy Anniversary to me!), so I probably won’t have anything to post till then.

Hopefully there won’t be snow on the ground next time you hear from me!!!

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TGIF

I woke up feeling not terrible today, so I’m at work getting stuff done. I was so sick with Jake, that this feels pretty similar so far. If I start to get really icky, I will hightail it home to my cozy bed.

Happy Friday!

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Bad to the Bone

I had my first treatment yesterday. I was pretty anxious and had a few mini breakdowns, but it all went ok.

Word to you all… it hurts like a sonofabitch to get your bone marrow taken no matter how much they numb you. Although I do usually need more numbing agents than most so I don’t feel the pain, but still… OUCH.

After they took the bone marrow, we were brought to a little “private room” which is really just a cubicle with your own TV and you can pull a curtain around you if you want. Jay watched ESPN and I was on my computer most of the time. Accessing the port barely hurt (thank goodness). The nurse set up my IV and first gave me saline and two anti-nausea drugs. After that she “pushed”, which means hand injected, this red drug into my IV (fun fact: it makes you pee pink for a bit), then she pushed another drug. I can’t remember if they pushed one more or if the last two were put in the IV bag and dripped in.

So I feel ok for now. Not 100%. I woke up at 2:30 and didn’t get back to sleep till 5:30 (they said one of the steroids they gave me may cause insomnia).

I’m at work and am going to try to get as much done as possible because apparently it’s common for your days to go like this:

Treatment day: Fine; Day after: Fine; 2 days after: CRAP; 3 days after: CRAP; 4 days after: Fine

Oh, another fun fact: My memory of yesterday afternoon is fuzzy. Apparently I had a phone conversation that I don’t really remember. I thought pregnancy brain was bad… YIKES!

We’ll see how it goes!

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