Today was AWESOME.

I slept through the night – no getting up to pee or hot flashes (thanks, chemopause) and no dry hacking cough. I didn’t wake up till 8:30 – THANK YOU HUSBAND – and when I did, it was to two happy kids.

I took the kids to music class, had lunch with them, paid all our bills, got some phone calls made and emails answered, and took the dog for a long walk. We got a huge rebate check in the mail, which was desperately needed. I found my camera, which has been MIA since December. I started cleaning up our basement, made the kids dinner, and got them to bed with minimal screaming.

Now Julian and I are going out for a spur-of-the-moment dinner to one of our favorite restaurants, and a neighbor’s daughter is available to sit for us.

Today I felt stronger than cancer. Happy Leap Day!

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Today was a hard day.

I don’t know why. I felt bad about this chemo for the last week – I think because it should have been my “good” week, but instead I was quite sick with a cold. I rallied twice to go out for events we had tickets to, but paid for it in that I’m still not quite well.

My Mom didn’t come out for this one – she came out for the last two and is coming out for the next one, and it’s just not fair to make her make that long trip over and over. She never quite has time to get over her jet lag, she ends up working the whole time she’s here, and she has her own life(s), at home in PA and down in GA. So I think I was missing her, too.

Another factor is that we originally thought we’d only be doing 4 cycles, so this one could have been my last… but instead we have three more rounds of side effects to get through. So that is a downer.

Also, as mentioned previously, I haven’t been sleeping. So I was up at 4:30 this am and haven’t slept since. That will get anyone down. The doc has prescribed me gabapentin. Fingers crossed.

It was just Julian and me solo, and he was really not feeling well, so I had some guilt about having him there. I felt helpless because here I am descending into sickness again, totally unable to help or comfort him. Plus I was already feeling pretty sad, and looking at him feeling grim and unhappy was only adding to my misery. I begged him to go home but he remained steadfastly at my side.

So I cried. Quite a bit. Pretty much as soon as the infusion started. It’s just overwhelming and depressing sometimes. Mostly I am really good at staying positive and counting my MANY blessings. I guess today just wasn’t one of those days.

Hot! Hot!! Hot!!!

If you’d like to see the full video for this, which is pretty cool if you’re a Cure fan,
check it out
on Vimeo.

One of my least favorite side effects of chemo/Lupron is the hot flashes. They are why I am awake at 5am writing this blog (I’ve been up since 4:30), and why I haven’t had a full night’s sleep in at least a month and a half.

During the day, every 1-2 hours, I feel my face begin to warm, then the first prickles of sweat. This quickly spreads to my head, neck, and then over my entire body, until I feel overheated and covered in perspiration. Sometimes it’s precipitated by a hot room or activity – something as simple as charging up the stairs. Other times I am sitting perfectly still at a comfortable temperature and it comes out of nowhere. I don’t like them during the day – they’re uncomfortable and make me feel gross – but I really hate them at night.

At night, about every 2 – 3 hours, I am woken from a sound sleep by a hot flash. Yesterday, I was taking a daytime nap after having been kept awake by them the night before. I was in the middle of a dream and IN MY DREAM realized I was starting a hot flash, which then woke me up. Each time I am awoken, I have to throw all the covers back and wait the 5 – 10 minutes it takes for the flash to pass. I sleep in a room with a window open in the middle of the winter. This helps cool me off during the hot flash, but once it’s passed, I have to get back under the covers because I’m freezing.  I already suffer from and am medicated for insomnia. The medication does not override the hot flashes, nor help me fall back asleep when they come after 4am. When they come in the early morning like this – which is pretty much daily – I am fully awake by the time the flash passes and simply lie in bed thinking of things I could be doing. Now and then I am lucky and can force myself back to sleep around 6, only to be reawoken by my kids between 7 and 8. Today, there’s no point in even trying, as it’s chemo day and I need to be up to shower and get ready at 6:30 anyhow.

Last appointment with my onc, he recommended I try an OTC herbal treatment called Remifemin, which I have dutifully taken twice a day for three weeks, but the hot flashes persist. I’ll tell him that today and he will probably prescribe something, which just makes me feel overwhelmed and angry. Another medication to treat another side effect of another medication to treat… etc. I am over it.

All of the other side effects/complications – even the diarrhea – come and go, ebb and flow. But the hot flashes affect me every single day, because it’s hard to function  normally when I NEVER get a full night’s sleep, and it’s impossible for me to sit still and not exert myself every single day to avoid the daytime flashes.

Today is treatment number 4. Three down, three to go. I will be so glad when this is in the rearview, and I better never get cancer again.

A Word of Advice re Hospitals

Writing this in case it helps someone else – you don’t necessarily have to have cancer for this to happen, although it generally happens in the immuno-suppressed.

When I was admitted to the hospital in Pennsylvania back in December, I told them upon arrival that I had diarrhea. I know it was mentioned several times during my four-day stay, as well. Nonetheless, they LOADED me with broad-spectrum antibiotics and never once tested me for Clostridium difficile colitis. This is an infection caused by bacteria that are everywhere – especially in hospitals – and which are extremely difficult to kill. In a normal person, healthy gut bacteria keep them in check. In an immuno-suppressed person – say, someone undergoing chemotherapy, someone with neutropenic fever – they can take over, and the primary symptom is diarrhea. What helps enable this to happen? Broad-spectrum antibiotics, which kill all the healthy gut flora.

I continued to suffer with diarrhea the rest of December and all of January, until my oncologist finally decided to test me for the bacteria. The test came back positive, and he put me on metronidazole (Flagyl), a different antibiotic that is supposed to kill the C Diff. It is the bitterest, most disgusting horse pill I have EVER had to take, and as someone who takes a ton of medications, you can believe that that’s no small feat. I had to take it three times a day every day for fourteen days, and you cannot have ANY alcohol while on it, as the interaction can make you very ill.

I finally finished the Flagyl on Saturday, and on Sunday I woke up and had diarrhea four f**king times. I emailed my doc (who apparently never stops working) to inform him and ask if he thought it was still the C Diff or a side effect of the Flagyl (which can also cause diarrhea, as well as headaches and loss of appetite, both of which I experienced). He replied within an hour, god bless him, and told me it sounded to him like I still wasn’t over the C Diff, and sent a different prescription – this time for vancomycin – to our pharmacy. This is another antibiotic which is used to treat more severe cases of C Diff that don’t respond to Flagyl.

Our co-pay – not the full drug price, the co-pay – on the vancomycin was $1196.95. For TWO WEEKS. I now have to take this drug four times a day for two more weeks. And I have had diarrhea for two f**king months.

If you are admitted to the hospital and they put you on antibiotics, and you have or develop diarrhea, DEMAND THEY TEST YOU FOR CLOSTRIDIUM DIFFICILE COLITIS, OTHERWISE KNOWN AS C DIFF. It is common, it is easy to test for (although you do have to provide a stool sample), and it is easily treated when it is MILD. If, however, you have it for two months without knowing, and repeatedly take Imodium to treat your diarrhea*, you will end up miserable and out $1200. Like me.

*If you have C Diff, taking Imodium can actually make the infection worse, as it retains the bacteria in your gut and can cause toxic reactions.

The Portacath

When I started this blog, I had three intentions.

  1. Update friends and family on my status so I wouldn’t have to answer questions constantly.
  2. Blog it out – to have an outlet in which I could express all my joys and frustrations with this cancer monster, and hopefully about life in general when this is all over.
  3. Chronicle my experiences in the event that some woman, somewhere stumbles across my blog in her cancer journey and finds it informative, helpful, or even just feels a little less alone by reading it.

This post is mostly for reason #3.

When I found out I should/was going to have chemo, I initially thought I would not need a portacath (aka port, portable catheter, power port). When I was told I would, I panicked a little. I did not want another surgery or another scar. I googled around for images and of course saw some that did not make me feel better. So here is my port.

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As you can see, it’s really NBD.

Surgery was easy, but recovery was a little harder than expected. I actually had more pain from this than from the lumpectomy. My neck and shoulder hurt a lot the first couple days, then the pain moved to the incision. Within a few days after that, though, the site was only a little sore and that was it.

The site has remained a little sore, and my surgeon told me it probably will stay that way until the port is removed. There is zero fat on my body there, so no cushion, which makes it a little tough on the area. That said, again, NBD – it only hurts if I bump it or roll the wrong way. Sitting here typing I could forget it’s even there. Also, my surgeon says they’ll take it out as soon as chemo’s done, right in his office, under local anesthetic. So not another major operation!

The plus side: I was hospitalized for four days over Christmas with neutropenic fever, and they used my port for all the antibiotics and blood draws, so only ONE stick and I had both arms free the whole time, which came in really handy while lying in bed since I was quarantined to my room. Okay but actually it did come in handy for things like sleeping, going to the bathroom, etc. Additionally, when I get my chemo, they numb it with lidocaine first so I don’t even FEEL the big stick, and then, again, for the hours I am there, full use of my arms.

When I was googling this bad boy, before I had it inserted, I came across a post that said that the port would be my best friend, and it totally is. I am so glad my arms aren’t getting brutalized by sticks, and after that 4-day hospital stay, if I could have kissed my port, I would have.

So if you have to get a port, don’t be scared! It’s fairly fast recovery, a small scar, and a godsend when it comes to IVs.

Blah day.

I’m already in a grumpy place because it’s raining here AGAIN while it’s snowing like crazy on the east coast. I loathe winters here anyhow – all gray and rainy, nothing to love – but knowing that they’re getting snow in the place where I’m from (and where I’d rather be living) is the icing on the cake.

But that really just sets the scene for the thing that’s really annoying me. Chemo is causing me to gain weight.I have struggled with my weight/body image issues for literally as long as I can remember – so over 30 years, which is a long time. When I started chemo, the nausea was preventing me from eating normally, and I initially lost 5 pounds. In the weeks since, however, I have noticed that I am nauseated for the first week, then ravenous for the next week. I’m not sure that’s 100% of the problem, though – I suspect it’s more about the Lupron, which I get a shot of every chemo cycle to keep my ovaries shut down. 

I’m about ten pounds up now, still about 10 pounds less than my all-time high, but I feel absolutely miserable. I’m all wide hips, thick thighs, and big butt, with a small, bald head at the very top. I feel like an ostrich. But without the long graceful neck or beautiful plumage. 
  

Anyhow there’s no point to this post except to say damn it, Hollywood, your portrayal of cancer/chemo led me to believe I’d be wasting away to nothing and instead here I am fat and bald. Thanks for giving me unrealistic expectations yet again.

Black cat rising

For many years I have thought about/talked about/considered getting a tattoo – a small black cat, somewhere that would only be visible if I was in a bikini. I have always decided against it, for a number of reasons – one being that at this point I have gone 37 years untattooed while virtually EVERYONE else my age has at least one. I have remained unmarked.

And then here comes cancer, and it’s all pleased with itself because it’s already marked me, and will mark me with ink when radiation begins. “Hey, lady! Guess what! Here’s a scar! And another scar! And ANOTHER scar! And guess what else? TATTOOS! Ahahahaha! You can get rid of me, but you’ll never be able to look in a mirror and not remember me!”

So I’m thinking maybe it’s time. Maybe I should get my first tattoo BEFORE radiation. A middle finger to cancer, a way to not allow it to be the first to mark me in that way, and to show it that maybe it’s taken one of my lives, but I have 8 more in me.

Maybe.

THE SIDE EFFECT LIST!

I have been keeping careful track (and by that I mean nightly scrawlings on a post-it note by my bed) of my post-chemo symptoms this time and so I present to you THE SIDE EFFECT LIST! Surely not as historically significant as, say, Schindler’s List, but certainly more current.

Day 1 is always a Wednesday, so if you are ever wondering how I am feeling on a day within a week after a chemo, this should be a handy guide.

Day 1 (Admin Day) – headache, tiredness, night sweats – a breeze!
Day 2 – tiredness, night sweats – overall I feel pretty good, normal. It’s the calm before the storm.
Day 3 – night sweats, fatigue, dizziness, nausea – start to feel vaguely unwell.
Day 4 – night sweats, fatigue, dizziness, nausea, weakness, fuzzy tongue, constipation, depression – one of my worst days, physically and emotionally. Don’t feel like myself at all.
Day 5 – fatigue, dizziness, nausea, weakness, fuzzy tongue, constipation, bitter taste – another physically low day. By this day I start to get bored and grumpy.
Day 6 – tiredness, dizziness, weakness, fuzzy tongue, constipation, depression, bitter taste, indigestion – probably my worst day. And it’s a Monday. No longer fatigued enough to nap or sleep well, but feeling to crummy to go out, I just feel lonely, angry, bored, and stir crazy.
Day 7 – tiredness, nausea, weakness, fuzzy tongue, bitter taste, indigestion, cramping, bone pain – finally feel more or less well enough to go out in public but it’s a stretch.
Day 8 – tiredness, weakness, fuzzy tongue, bitter taste, indigestion, diarrhea, cramping, fuzzy mouth – definitely on the upswing at this point but the continuing stomach issues really put a cramp (pun intended) in enjoying life.

Today is Day 8, so I will have to update this in a few more days, but if it’s like last cycle, the symptoms will continue to fade over the next couple days until I feel 100% just in time to get shot full of chemicals again! I am grateful that I don’t have a lot of the side effects others seem to – my nose hair is hanging tight, for instance, and I have two TINY cankers in my mouth, but my mouth isn’t filled with sores or anything. Still, chemo makes for some pretty crummy weeks.

Metastatic Breast Cancer

So, I learned something yesterday. And correct me if I am wrong, because I might be, and I really would LOVE to be corrected on this.

After watching a video posted on Facebook by Holley Kitchen, and a (very) little follow up research, I discovered this: if they do not cure breast cancer while it is within the breast, they cannot cure it.

What I mean by this is, if the breast cancer spreads from the breast to anywhere else in the body (thus becoming metastatic), it is incurable. Patients are treated for cancer for the remainder of their lives, but are considered “cancer lifers.”

Now there are lots of stats related to this, and lots of reading one can do to better understand the stats, odds, etc. But in the end, 20 – 30% of people who get diagnosed with early-stage breast cancer eventually get diagnosed with metastatic breast cancer. Median survival after diagnosis with MBC is three years. And 40,000 people die annually from metastatic breast cancer.

This brings up a lot of emotions in me, but the chief ones are fear (obviously), embarrassment (how did I not know this?), and anger (WHY did I not know this?!?).

Anyhow do with this info what you will but I humbly request that if you don’t share this blog post, you share Holley’s video, or tell your coworker about MBC, or even just do a little more research to educate yourself. There’s no way that someone who gets diagnosed with early-stage breast cancer – like me – should be totally unaware of the possible long-term effects and very immediate implications of such a diagnosis.

Finally, RIP Holley Kitchen, who lost her life yesterday to MBS but obviously still continues to educate, which was part of her mission. Thank you, Holley.

Inside the shell.

I’ve never wanted so much to crawl outside my own skin until the last few days.

I feel trapped, and it’s so depressing.

I am not myself. I can’t climb two flights of stairs without exhaustion. I can’t interact with my kids the way I usually do. I just heard my three year old tell my mother that he is “going to the cancer store.” My 18 month old won’t sleep through the night anymore. I have tried so hard to be the same old mom but the chemo is doing just what I thought it would: it’s taking away my sparkle.

It’s hard to explain, how I feel. I am tired all the time. “Fatigue,” they call it, but that doesn’t explain it. Everything wears me out. I am so tired that I nap every day but when I wake, somehow I feel worse – dozy, nauseated, out of sorts. I am bored and stir crazy, but I look strange and feel worse, so I don’t want to/can’t go out. TV and books have lost their allure, which is why I’m writing – maybe it will be an outlet. Maybe it will relieve the pressure.

Food tastes and feels weird. My tongue feels fuzzy and if last cycle was any indication, the roof of my mouth will soon follow. I feel thirsty but when I drink it tastes weird and doesn’t seem to quench my thirst. My body seems incapable of doing or accepting anything properly. I feel like an alien trapped in human form. I keep trying to give this body things that will make it feel better but nothing seems to help.

We curse the little ways our bodies fail over the years, but there’s nothing like a full-system revolt to put things in perspective. And there’s no predicting how things will go. Saturday was horrible, yesterday was better, and today seems worse. How?

My doctor said he wanted to do at least 4 cycles of TC, up to 6 if I could handle it, and I don’t know if I can. And that makes me feel two things. One, like a failure. A wimp, a loser, unable to face something tough. And two, worried, because what if I get cancer – what if it comes back? Will I be left kicking myself for not doing 6 cycles? Probably.

This is a lonely time. These are dark days. Mostly I feel grateful, lucky, accepting. But sometimes I feel trapped inside this sick body and I just want to run.