A Change of Perspective

I’m a little behind on my blogging lately. I’ve been busy doing fun things. What a nice change from being tired as a result of cancer treatments and doctors’ appointments.

Last month, I had my first infusion of Zometa. Zometa is a bone strengthening drug, which also has shown to prevent recurrences of breast cancer in some studies. My oncologist wanted me to do this treatment since in July of this year, I was diagnosed with osteoporosis in my spine. Yes, the joys of breast cancer continue.

I was pretty bummed about having osteoporosis, but even more bummed about the treatment, since the drug is administered in the chemo area of the hospital. I never wanted to be back there. Ever.

My oncologist told me I could expect flu-like symptoms the first couple days after the treatment. So I scheduled the infusion for a Friday, giving myself the weekend to recover. It felt like chemo all over again – figuring out when my body would have the worst reactions to treatment and how long it would take to recover.

So I went to the hospital, as early as possible, to get it over with. The sooner I got there, the sooner it would be over. They start infusions at 9 a.m., so that’s what I did.

The nurses were so nice, as usual. I feel very grateful to be so well taken care of. Not everyone has that experience.

The infusion didn’t hurt at all. I barely even noticed the needle going in or out. I guess I’m just used to that by now. They started the infusion, I turned on my iPod, closed by eyes, and 5 songs later, it was over. As my oncologist promised, the infusion only took 20 minutes. The whole thing took about 45 minutes. Couldn’t wait for it to be over.

I went home and laid on my couch. I was pretty exhausted. Of course I didn’t sleep the night before. The first time I do anything, I’m always nervous. So getting rest that night didn’t really happen. The emotional toll was worse than the physical toll for this treatment.

My oncologist told me to drink a TON (her emphasis) of water. Zometa is flushed out through the kidneys. So water gets it out of the system. I spent the day on the couch, in and out of napping. I did get this souvenir from the infusion – a lovely bruise on my arm:

Bruise From Zometa Infusion

The next morning I woke up, feeling pretty tired still but not terrible. No flu-like symptoms yet, but I decided to stay in to rest and keep drinking that water.

Around 8 p.m., I decided to go to bed early to catch up on that sleepless night the night before the treatment. But that’s when the flu-like symptoms showed up. I started to get some chills and feel a bit nauseous. I actually haven’t felt cold in a long time. Hot flashes and overall heat is my normal body temperature these days, thanks to Tamoxifen and my oophorectomy (the removal of my ovaries). So in a weird way, it felt kind of nice to be cold. The nausea though, I could do without that.

The flu-like symptoms only lasted for a couple hours. As I laid in bed eating ginger to help settle my stomach and with a wool hat on my head to try to warm up, I kept telling myself, “You’ve been through worse. This is nothing.” It actually kept me calm and helped me not freak out about what was happening with my body.

Not that I really needed it, but the Zometa infusion and my body’s reaction was a reminder that I’ve been through the ringer in these last 2 years – a double mastectomy, 8 rounds of chemo that lasted 4 months, 1 reconstructive surgery, 32 zaps of radiation over 7 weeks (5 days a week), an oophorectomy, and countless tests and doctors’ appointments. My perspective has changed. A little chill and nausea for a couple hours? No big deal. I can handle that.

So, I snuggled with my dog Murphy for some body warmth and TLC. Then next thing I knew, the chills and nausea were gone and I went to sleep. Another cancer experience that I’m happy to be moving past.

 

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And Now … Osteoporosis

I’m 41 years old and have already gone through a double mastectomy, 8 rounds of chemo, 1 reconstructive surgery, 7 weeks of radiation and an oophorectomy (the removal of my ovaries). All because of my breast cancer diagnosis and having the BRCA 2 mutation.

That’s enough for a lifetime, if you ask me.

I went to see my oncologist in May for my 6-month check up. She wanted me to do a bone density test, mainly to get a baseline, she said. Having my ovaries removed and taking tamoxifen, my body is not producing or getting any estrogen, which helps keep bones strong. So I figured I would be at risk for osteoporosis, but not for a while.

Last week I finally did my bone density test, which, by the way, was the easiest test I’ve ever done. No IV, no drugs, no fasting. You lay down, they scan your spine, then they scan one hip. Then you’re done. In and out in 15 minutes. Best. Test. Ever.

Two days later, I got the call from my oncologist. My spine already shows signs of osteoporosis. DAMN IT!

So now she wants me to be given a drug called Zometa. Zometa is a bone strengthening drug, which also has shown to prevent recurrences of breast cancer. Both good things.

Here’s the good news – I will only have to be given Zometa once every 6 months (twice a year). It only takes 15 minutes to administer the drug.

Now the unsettling part – Zometa is given through an IV. That kind of sucks. But the worst part – I have to go to the chemo area of the hospital to get the infusion.

I never wanted (or want) to see that stupid chemo area again. When I said goodbye to those lovely nurses who helped me through chemo two years ago, I said goodbye. Not see you later. Goodbye. Have a good life. I’ll never see you again.

But here I am, being told to get an osteoporosis drug administered in the chemo area of the hospital.

Now, I know I should be grateful that I’m only going there for osteoporosis, and not because I have a recurrence of breast cancer or some other cancer (fingers crossed that’s always the case). And I should be grateful that my oncologist is aggressive and assertive on my behalf with any health issue. But that somehow isn’t making the tears stop flowing when I think about walking into that chemo area. Having to see all those people, who I used to be one of, get chemo – that’s going to be hard. Talk about PTSD.

I guess the other upsetting part is that this is just one more thing I have to do now because of stupid f*$%ing breast cancer.

I see at least 1 doctor every 3 months, I get blood work done every 6 months, I go for scans every year, and now I have to go get this drug pumped into me every 6 moths. It’s just one more thing that I have to do in a hospital with doctors. And that just sucks.

It reinforces the fact that you’re never really done with cancer. There’s always something.

This Roller Coaster Is No Joke

When I wrote the tagline to this blog – navigating the roller coaster of being a breast cancer survivor – I had no idea how true it was.

Shortly after I finished chemo in September 2012, I mustered the energy to attend my first support group for young women with breast cancer. My mastectomy and reconstruction surgeries were behind me and I was about to start radiation. I finally felt ready to start talking to other women about what I was going through.

At my first support group meeting, one of the women said that she found being a survivor harder than being in active treatment. She said life as a survivor is full of ups and downs. Tears streamed down her face as she explained her range of emotions. I kept looking at her, then looking down at the floor, thinking she was out of her mind. How could being a survivor be harder than being in active treatment? Chemo, surgeries and radiation, having doctors appointments every week (if not multiple times a week), loosing your hair, chemo brain, nausea, depression, exhaustion … the list goes on.

Well, now I’m a survivor (I hate that term, but that’s another post for another time). And now I get what she was saying.

I’m happy to now be cancer free for 2 years, but the fear of a recurrence is something I think will be with me forever. Worrying about the aches and pains that used to just be a passing thought, now leads to sleepless nights and anxious days.

About a month ago I started feeling some soreness in my pelvic area. I wouldn’t say it was pain, but it was definitely not a normal feeling for me. The rule in cancer world is that if something feelings wrong for two weeks, its time to contact your doctor.

Since completing treatment, I’ve been exercising more. I have gotten back to swimming 2-3 times a week. And I started running again, after a 2-year hiatus since my cancer diagnosis. So I was hoping that it was just my body getting used to more physical activity with my new body. But there’s always that little voice in my head that says, “Oh fuck. Here we go again.” Its hard to quiet that voice down.

So after two weeks with the soreness persisting, I emailed my gynecologist to ask her about it. I was hoping she would say it was nothing to worry about, but because of my history and my BRCA2 mutation, she always errs on the side of caution. It’s one of the reasons she’s my gynecologist. She doesn’t make me feel crazy for wanting to check out an ache or pain. She’s just as worried as I am when something doesn’t feel or seem right with my body. Well, maybe not just as worried, but you get what I’m saying.

I called my mom to tell her what was happening and I totally lost it. I just couldn’t stop crying. The fear was really bubbling to the top. I could barely get the words out of my mouth to explain to my mom what was going on. My mom was so great. All she said was, “I’m here for you and we’ll get through this together.” It was exactly what I needed to hear from her.

As you can imagine, the night before my appointment was a long one. Could this really be happening?

I went to my gynecologist and did an ultrasound. As I lay on the exam table, in the stirrups, starring at the image on the screen, I couldn’t help but go to that bad place – ovarian cancer, more surgeries, more chemo. Would I survive this?

The technician said that she didn’t see anything of concern but I should wait to hear the official word from my gynecologist. She even said I had a beautiful uterus. That certainly made me laugh and calmed me down a bit. A beautiful uterus – ha!

My gynecologist quickly came into the room and said everything looked fine. But she wanted to do a pelvic exam just to double check. Nothing showed up there either. She told me everything looked good. She said it could be tamoxifen that’s making me achy. Or it could be the exercising that I’m doing. I haven’t used a lot of those muscles this much in 2 years. So my body might be adjusting. Then she said, “It might be just because you’re getting old.” I should be so lucky to have aches and pains from getting old.

So I left her office and immediately started crying. I felt like I dodged a bullet. Still cancer free. Saying I felt relieved is an understatement.

Life as a cancer survivor is rough. Every ache and pain is a concern. That little voice in my head never goes away. There are moments of being happy that I’m alive and grateful to have so many wonderful friends and family members that I love and love me. But I also have lots of moments where I’m scared to not be able to live a full life doing all the things I want. Every week I hear about someone who’s died from cancer. Not that dying of cancer at an older age is any easier, but hearing of young adults dying really hits home. It’s hard to silence that little voice in my head that wonders if that’ll be me in the near future.

Two years after my diagnosis and I’m still learning how to navigate the roller coaster of being a breast cancer survivor – taking it one day at a time.

My Two Year Cancerversary

Today is my cancerversary.

There are different days that people choose as their cancerversary. Some people use the day they’re diagnosed. Others use the day that they are declared cancer free. For me, I choose the day of my mastectomy – when they removed the tumor in my breast and the tumors that spread to my lymph nodes – and they considered me cancer free.

My mastectomy was on April 17, 2012. That’s two years ago today.

I’ve been thinking about this day for weeks. I was really expecting to be celebrating. I’ve been cancer free for two years. That’s kind of a big deal. Actually not kind of. It is a big deal.

And most importantly, I’m still here.

My prognosis at diagnosis was good, but you just never know what will happen. I knew that reality before, but cancer reinforced my belief that life is unpredictable and bad shit happens. Not much you can do about that.

So I figured I would be really happy to be reaching the two year mark. But I woke up this morning to find myself feeling melancholy. That’s actually a nicer word than what I’m really feeling. A more accurate word is just downright sad.

Although I’m physically feeling good after all my body has been through – a mastectomy, chemo and radiation – I seem to find my thinking, “Is this really my life now?”

Survivorship is hard. I know I’m one of the lucky ones. I did survive. But a day doesn’t go by that I don’t think about my cancer coming back or showing up somewhere else. 30% of early stage breast cancer comes back as stage 4. I was stage 2 at diagnosis. Fingers crossed I don’t become stage 4.

Don’t get me wrong, I think I’ve made good progress in the last two years. And I’m proud of myself for that. I’ve been getting back to the things I used to do before cancer – going out with friends, visiting my family, working normal hours, going on trips, swimming, running, yoga. And I have more good days than bad ones.

But I now know that my life will never be like it was before cancer. My body aches like a 90 year old lady sometimes. I’m still getting used to my new body – both how it looks and how it feels. I get tired a lot earlier in the evening than I used to before. I now have a pill box to organize my daily medication, so I don’t forget to take it. I guess that’s what makes me sad today.

Today reminds me that I’ve lost a lot of my carefree tendencies. I take life a lot more seriously. Now I wonder how long I have to do the things that I really want to do. Will I get to have kids? If I do, how long will I be around to be a part of their lives.

I’ve been lucky to have found a great support group through the Young Survival Coalition. These women that I get together with every month make me feel less alone. We can talk about our fears and concerns. And how hard survivorship is. We can even laugh about things like forgetting where we parked our cars because of our chemo brain.

They say that eventually you stop thinking about cancer every day. I hope they’re right. But its hard for me to imagine that day. Right now it feels like two steps forward and one step back. I guess I just continue to do what I’ve done over the last two years – just take it one day at a time.

Wishing For Less In 2014

2013 was a busy year for me. Finishing treatment for breast cancer, monitoring every other month for ovarian cancer, surgery for possible ovarian cancer and dealing with the emotions of all of this.

For 2014, I’m hoping for less.

Less doctors’ appointments.

Less surgeries – actually hoping for a surgery-free year, or several years.

Less scans (and less scanxiety).

Less phone calls, emails and texts to family members and friends that start with, “Well, the doctors see something else that they’re concerned about. I have to have another test to find out more.”

Less worrying.

Less pill taking – 1 year of Tamoxifen done, 9 more years to go. But who’s counting?

Less hot flashes.

Less aches and pains.

Less sleepless nights.

Less naps to make up for the fatigue associated with cancer treatment.

Less tears – although some, not many, felt good to get out.

Here’s to less in 2014.