Cancer Ever After

Musings on Infertility, Adoption, Parenthood and Cancer

It Was the Best of Times. It Was the Worst of Times

From everything I’ve read and from talking to other Cancer patients, the second round of chemo is typically worse.  For some of the meds, it’s more of a cumulative effect and you might not feel them until the second round.

Because of this, my mom had offered to take the kids after my second treatment.   With Tim having bronchitis and me having chemo, we both thought this was for the best, but DAMN it was hard.

Turns out, Chemo #2 was both better and worse.  They adjusted my anti-naseau meds, so that part was a lot better.  But we still had my lovely constipation issues which have more of a cumulative effect.

See that lovely pregnant-looking belly? No I’m not pregnant, that’s what the side-effectsof chemo can make your belly look like.  It’s as uncomfortable as it looks.

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So while, I was glad the the med changes helped with how I felt overall after chemo, I must say, some problems were rather, well,  large.

It was hard without the kiddos.  I didn’t realize how much they distract me from how I feel and how I manage to force myself to do more when they are around. And my mom had them for a week, which feels like forever when you are throwing a pity party of one.

While I missed them greatly, I had a really happy/sad moment when we tried to FaceTime them.  The girls were having so much fun, they couldn’t be bothered to talk to us, and Baby H started crying when he saw our faces.  Needless to say, it was a very long week because we didn’t try that again.  I had to resort to picture updates.

Cancer is teaching me a lot about letting go and letting others do things for me.  Prior to this, we’ve spent very few evenings or nights away from the kids.  We both work and it feels like we already get so little time with them. But we are a man down in our house and we need the break.  This is stressful for us in a thousand little ways, and I just get so tired.

I can only  play “Let’s put mommy to bed” as a game with the kids so many times. They want to run and play.  Even Baby H is walking now, they are constantly on the move, and when I’m tired I have trouble keeping up.  It’s not fair to choose only sedentary activities.

So despite wanting to spend all of my time with them, I have to let go, at least a little.  This helps me make my time with them the very best time.  I can be rested so that we can do fun stuff together. And that’s what counts.

 

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Port That You Say?

In the cancer world, to port or not to port is the question. Prior to my diagnosis, I didn’t even realize this was a question. Don’t get me wrong; I knew what a port was, I just assumed it was standard. In fact, during my not-so-short hospital stay for my pregnancy, I begged for a port so that I could forgo my twice daily blood draws.

Ports aren’t universally recommended, depending on the type of cancer and your length of treatment. I’m swimming in a cancer world now. My boss and one of my coworkers at my very small company both also have cancer. For my boss, his cancer is more advanced and the treatment options are limited, so they wanted to hold off on the port as long as they could due to the possible increased risk of infection. For my coworker, it was assumed she’d get a port because the drugs are that hard on the veins and her treatment course was very long.

Me, I live in that gray window. The drugs are harsh, but my treatment is considered pretty short by chemo standards. It was up to me.

Sign me up!

My oncologist barely had the chance to utter the question before I said, “Port, please!” I’ve been there, done that when it comes to blood draws. I’ve had daily, I’ve had gallons taken at once (okay, 19 vials), I’ve had bad sticks where they blew through three veins before they found a good one. IVs are difficult on me because I have small veins. One of my juiciest veins is on a nerve, and I’ve gritted my teeth and accepted the pain every other day for five weeks as they stabbed at it to keep my babies in me longer. Having a port would make this unnecessary.

This was the extent of my conversation about getting a port.

Big Mistake

My port surgery came and went without a hitch. It wasn’t until after the procedure that a key little nugget of information came to light. I couldn’t lift any of the kids, because I wasn’t supposed to lift over ten pounds. WHAT??????? We had no help arranged. I’d considered this a minor procedure, and given the number of procedures and surgeries I’ve had over the last five years, it didn’t even register that there would be any issues other than normal recovery afterwards.

A port doesn’t exactly work like that. I don’t fully understand why, but when they put the port in your chest and then loop it into a vein, it makes your body go haywire. It was excruciating if I accidentally lifted my arms to about chest level. I couldn’t have lifted ten pounds if I wanted to. My arms ached randomly (and still do sometimes).

They sent me home with orders to take Tylenol if I felt bad. I went home and ran for my stash of pain pills from my last surgery. They became my lifeline for the next few days. Luckily, my in-laws rallied and helped with the kids.

Later, I learned that my experience was one of the BEST for port placement. My coworker said hers was more painful than a mastectomy and ached for weeks. Most said the excruciating pain lasted a week or two. Why did none of the doctors mention this? Once again, I realized it’s up to me to ask the questions.

Technically, I wasn’t supposed to lift the kids for ten days. Big surprise–I lasted three. Who are they kidding? I actually think this helped me. The movement made my aches go away. I also slept in a bra because I found this helped to minimize the pain at night.

I need to remember what helped the most during infertility: it’s up to me to ask the questions and up to me to advocate for myself and my family.

 

 

 

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The Fight of My Life

The battle lay before me, and I tried to steel myself.  Tim and I looked at each other and reached out to hold hands.  You could visibility see ourselves gird our loins.  It’s a battle we fight nightly these days.

It didn’t use to be this way.  Before.

Bedtime.

Before the twins turned two, bedtime was a bit of peace after a hard day at work.  It was something we looked forward to.  Bedtime meant singing and cuddles and then my girls crawling obediently into bed, while I went and rocked the baby to sleep.

These days, bedtime has turned into a war of wills. If we don’t time it perfectly, there is a battle over getting dressed, getting hair brushed, brushing teeth, taking a bath, not taking a bath, reading another story, rocking, not rocking, mommy singing, mommy not singing.  Anything is game depending on the moods of my little dainty dictators.

Last night was a doozy.  I misjudged the level of exhaustion in my children (Baby H was simply not tired, H and P1 were ridiculously overtired.) This simple misjudgment turned the three minutes of getting jammies on into a 30 minute battle of wills with tears, hairpulling and over-the-top wails.

For ease, one of us usually takes Baby H while the other does bedtime with the twins. Normally this isn’t an issue.  However, our twins have taken it into their heads to pick which parent is theirs.  I’m P1’s, Daddy is H’s.  On a rough night like last night, there are meltdowns if each kid doesn’t have “their” parent rocking them for bedtime.  Queue meltdown.

Bedtime was 60 excruciating minutes of tough love, comforting, rocking and trying to get a very untired baby to sleep.  We both were completely wiped by 9:00 p.m.  How that hell are we going to manage this if I’m sick?

These days happen.Bbedtime is sometimes a breeze, and some days it’s the seventh level of hell.  That’s life with a toddler. Their moods change faster than the wind.  This is my worry and my fear.  Normally, I reach deep and try to maintain calm in the midst of all of this chaos.  I’m not sure I can do this if I’m nauseous, exhausted (more so than the norm), or in pain.

Time will tell.

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10 Things That Don’t Suck About Cancer

10.) It’s an excuse to get a motorcycle! A motorcycle would go great with my new scars and tattoos, right?

9.) No more shaving! Let’s be real, ladies, we all know we stop shaving in the winter, but now I won’t have to shave in the summer.

8.) I get to try out a Brazilian–without the embarrassment of someone actually giving me the Brazilian. Who really wants someone waxing there?

7.) I may actually get to read a book. Granted, it will be with chemo dripping into me, but I can’t remember the last time I just sat down to read a book. I love to read.

6.) I don’t have to cook. My sister organized a “food chain” and I think it will take a U-Haul to bring down all of the food she solicited from friends and neighbors from my hometown.

5.) People will no longer give me shit for wanting to take a nap. I can play the cancer card. That’s right, cancer = my right to take a nap. Every. Damn. Day.

4.) I’ll get to see my family more. My extended family, that is. My mom and sisters are going to travel down regularly as I go through treatments. My children love all the family that has been coming to visit.

3.) No more itchies!!! I’ve been crazy itchy from the neck down for nine months. I wake up scratching myself bloody. They tell me this should go away.

2.) Cancer is cheaper than adoption. I actually repeat this one quite often (for example, every time I open my mail). My estimates put it at about 1/5 the cost of adoption, provided I can keep working and minimize any time on disability. The plus side is, even if I have to stop working, cancer is covered under short-term disability and leave, unlike my adoption leave time, which was unpaid. I’m pretty sure it will end up being significantly cheaper.

1.) I’ll finally meet my Weight Watchers goal weight. I mean, let’s get real. Cancer is probably the only way to hit THAT unrealistic number.

As an added bonus for my husband, he gets to be married to a blonde, a brunette, and a redhead at the same time. Behold, the power of wigs!

Who am I kidding? I’m pretty sure that just about everything is going to suck about having cancer. And that last one? Apparently, not all cancer treatments make you lose weight, and I might actually gain weight on my treatment. I feel like I’m getting ripped off.

Cancer without weight loss?

For a girl who has struggled her entire life with her weight, that’s just rubbing salt in the wound. Thanks, cancer, now fuck off.

 

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Saying it makes it real

 

Even though at this point we’ve had numerous tests and the C word has become a routine part of our vocabulary, it doesn’t feel real. I don’t feel sick.  Shouldn’t you feel horribly ill if you have something as serious as cancer?

In an attempt to make it more real, we’ve been breaking the news to friends.  I’ve been doing this almost obsessively, as if by saying it out loud, it will make the news sink in.

It hasn’t.

I’m not completely without symptoms, but they are symptoms that have been going on for so long, I don’t even think of them as symptoms.  I am itchy.  You may have just started scratching yourself, but not the occassional itchy.  Since about a month after Baby H was born, I’ve been scratching myself bloody in my sleep  and if I’m not careful in my waking hours too.

Neck. To. Toes. Itchy.

I have scars on my arms and legs from scratching myself.  I’ve visited three dermatologists, followed up with my rheumatologist, and visiting my GP hoping for an answer or a solution to this.

I also have a rash, but this is not new for me.  I’ve had rashes over large parts of my body for the better part of six years, it’s considered a symptom of my autoimmune issues that contributed to my infertility.  I just ignore it. . . well. . . unless it itches.

The other symptoms I have are items I simply explained away.  I bone deep tired. All the time.

I also have three kids under three who between them, wake up 3-4 times a night causing me to play my own version of nighttime wack-a-mole, as I run from room to room, patting their butts and comforting them back to sleep. I thought this one was self-explained.

I go to bed at 9 and wake up at 5 after sleeping in fits and starts.  Sometimes, on a good night, I get a long stretch of sleep and I realize that I wake up covered in sweat.   I just assumed I was getting hot.  Why would I assume these are night sweats and a serious symptom?

I feel good. They put me on iron to correct severe anemia caused by the cancer, so some days I feel better than I have in almost a year!

So I say the word out loud.  I tell friends, I tell family.  Hell I tell the lady sitting next to me at the lung clinic.  Perhaps, if I say it enough, the truth, the reality, of my diagnosis will sink in.

I have cancer.

 

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