Still Klutzy After All These Years

This week was another somewhat uneventful treatment. I had SERIOUS anticipatory nausea this time. The Nurse Practitioner I saw this week said it is a very real thing. One woman who had been in remission for 5 years ran into her oncologist at the mall and promptly puked. Basically, I need to drug up before going from now on.

I had to wait for a treatment chair for over a half hour. While waiting, I was greeted on my FB page to this little gem that seemed to perfectly encapsulate the absurdity of waiting to get chemo. It was a great pick-me-up, so thanks Bob and Mer for both posting this at JUST the right time.

http://gawker.com/man-trapped-overnight-at-vegas-airport-shoots-ridiculou-1588889578?utm_campaign=socialflow_gawker_facebook&utm_source=gawker_facebook&utm_medium=socialflow

I got seated in a private cube (YES!), but the remote control for the TV was missing (BOO!). Then someone turned it in (YES!). Apparently a patient walked out with it accidentally (chemo brain is ALSO a very real thing). It’s really hard to focus and concentrate for some reason. I have issues with this on a daily basis, but during treatments, especially with the nausea, it’s hard to finish a sentence. So instead of reading the advanced copy of the new book from my favorite writer (SHAMELESS PLUG ALERT: 2 AM at the Cat’s Pajamas by Marie-Helene Bertino… pre-order your copy at http://www.mariehelenebertino.com/2-a-m-at-the-cats-pajamas/ TODAY!), I am only half way finished. The only downtime I have is at chemo but I can’t concentrate enough to read a book I so desperately want to finish!!! It’s annoying really. So I watch the HGTV show “Buying and Selling” or something like that with the twin brothers who are a realtor and contractor who help people get their house ready to sell while trying to find them the house they want to buy. This is about what my brain can handle. Or maybe not… they never choose the house I think they should.

So it was another boring treatment until about 5 minutes before I was finished, I created some unnecessary excitement by spilling my cup of Coke all over my chair, blanket and floor. I used the already soaking-wet blanket to sop up most of the soda on the floor. The nurses yelled at me for doing that, but whatever… the damage was done. I was washing it anyway. So I left yesterday with a soda-soaked blanket in a trashbag and a wet sticky butt.

All-in-all the usual.

Happy Father’s Day everyone!!!

American Psycho

No real news to report this week. I had my treatment yesterday. I had to wait to get a chair but when I got seated it was in one of the private cubes… SWEET! I take little victories when I can. The treatment itself was uneventful, but I felt doubly worse than I usually do.

The nausea started ON THE DRIVE TO THE HOSPITAL. This isn’t the first time it’s happened either. I’m having some REAL issues with psychosomatic nausea. The drive there is getting to be annoying. Plus they have a big basket of cheese on wheat crackers there for people to snack on, and the mere thought of those (yes, even now as I am typing), makes me nauseated. Also, the smell of a disinfectant can set me off. I sat down yesterday in the cube and they had just washed everything down… UGH. Later on, I happened to be talking to my sister, who is an oncology nurse, and without even knowing about my issue, she mentioned something about patients complaining about psychosomatic nausea and pain! When I told her my story, she said that it happens to a lot of people. Well at least I’m not alone in my craziness! Unfortunately, the nausea hasn’t really gone away completely, so it’s been a fun day. The drugs are definitely keeping it at bay, but it’s always there just under the surface. Sigh… if a little nausea now and then is the worse that happens, I’ll be fine.

On a different note, in case you are wondering, my hair as not completely fallen out and what’s left from the shaving has actually been growing a smidge. So yay! I know a bunch of friends, either jokingly or not, said they were going to shave their heads in solidarity. I am so glad no one has done that… VERY GLAD. If you ever feel the desire to do something to show support for me or anyone else you know with cancer, I suggest doing something beneficial. While it’s lovely to want to commiserate with shiny noggins, that doesn’t really help the situation in the long run. I personally would have felt bad that another person shaved their head and it was because of me. My hope is that people, instead of SHAVING their heads, will grow out their hair and donate to Locks of Love or a similar organization. I know my one friend is already growing her hair out to do just that and many other friends have donated over the years. I think it’s the OPPOSITE of a negative that cancer causes and anything that can symbolically tell cancer to F-off is the best way to show support for me.

Another way to show support AND possibly save a life would be to get registered on the Bone Marrow Donor Registry. A bone marrow transplant can be a person’s only hope for survival and the process is so simple. It’s literally a cheek swab. I was put on the registry years ago at a drive my cousins ran because their son PJ, who had a transplant from his sister, knew many people wouldn’t find a match within their families and the Bone Marrow Donor Registry was their only hope to find one. Sadly, PJ passed last year, but they are running the drive again in his memory this Saturday, from 10 AM to 1 PM at Springfield Township High School at 1801 Paper Mill Road, Glenside, PA. If you are able to and want to get registered, they’ve made it easy for you. Here is the link for the event page on Facebook:
https://www.facebook.com/events/285065501653463/

Please consider it!

You win some. You lose some.

Hello everyone! It’s been a while since my last update. Lots of tests were taken and I passed them all (mostly) with flying colors.

The results of my pulmonary function test are in and so far so good. My lungs are pretty much the same as they were before treatment so the chemo is not having a negative affect on them as of yet. YAY! Not sure what the echocardiogram showed, but I’m confident they are fine as well since that is usually a long-term side effect anyway.

My PET scan came back VERY encouraging with one “bugaboo”, as my doctor put it (Boy, they like fun little expressions don’t they?). All the nodes have shrunk significantly or are gone, which means the chemo is working. The only one giving us any issues is the bulky one in my sternum. It was originally measured at 9 cm and has only shrunk down to 8 cm. However, it is not as “hot” anymore. This means that when the PET scan lights up the cancer cells, it’s not as bright as it was initially. Basically, what’s going on (as I understand it) is that the cancer cells are all tied up with the scar tissue cells, so the scar tissue isn’t shrinking (as they predicted), but the cancer cells within are getting weaker. Unfortunately, even though it’s working, my doctor thinks I should have 2 more months of chemo than originally planned. So that means I’ll be getting chemo until the END of summer and then getting radiation.

It’s definitely disappointing, but as long as the cancer is all gone, it’s worth it so I don’t have to do this again.

As for how I am feeling… this was a crappy weekend for me. I felt nauseated pretty much the entire time. I missed seeing visiting friends, which made me mad, but what can you do? No one said cancer was fun or fair. My mom and my sister had the kids so they had a fun weekend at least!

Oh well, onward and upward. I’ll make up for it next weekend somehow.

Take care everyone!!!

2b or not 2b?

Hello all!

Yesterday, I had my 4th chemo treatment (technically 2b). It was a yucky day outside and my appointment was at 1, but I had to wait for my labs again, so I didn’t get out of there until 5. HOWEVER… my doctor was very happy with my progress and I got a private cube, so it all balances out.

I thought I would give you all a mini-lesson on ports. The port is where they hook up the IV so they don’t have to access a new vein every time they want to give me medicine or take blood. It’s very convenient and it’s just a pin prick of pain when they access it.

Below is the one I have (or very close to it). You can feel it under my skin if you press on it. I had thought you might be able to see it through my skin, but you can’t, so here you go.

The nurse sticks the needle through the center and that is where they plug me in. If you look close at the picture below, you can see the bump of the cather going into the vein in my neck and it runs down to the plug. There is a tube that is connected to the plug and it is all kept in place by the Tegaderm film. 

So that’s me every two weeks.

At some point in the next two weeks, I have to get another round of echocardiogram and pulmonary function tests done to see if any damage has been done to my heart or lungs from the chemo. I also have to get another PET scan to see how I am responding to the chemo. I hope the results are good!

Enjoy the beautiful spring weather!

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!

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!!!!

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!

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”.

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.

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

 

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.

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!!!

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!