People say some interesting things to me when they find out I have cancer. I understand that, for the most part, they mean well, but sometimes the things that come out of their mouths may not have the desired effect.
There is a time and place to tell me about all the people you know who have died from cancer, but it’s not really encouraging to the newly diagnosed. I’m sorry you’ve lost loved ones, I have too. But it’s not an appropriate response to the revelation that someone has cancer.
Another thing people tell me is that I could have another good twenty years in me. At the outset, that sounds great when your odds of hitting the five year survival mark are looking slim.
But then I look at my year-and-a-half old daughter and I know that twenty years is not enough. I need to be there to guide her through adolescence, dance at her wedding, and spoil her children. I need to be a grandma.
Twenty years is not enough. I can’t set the bar that low.
I know, realistically, that I may not have that much time. I know I have friends who don’t have that much time either. This breaks my heart. But I have to set the bar higher.
I’ve meet people who are 17 year survivors and I’m awed. It’s beautiful and amazing to survive that long, but it’s not enough. I want more. At the recent Race for the Cure there was a 45 year survivor. That’s a little more like it. But still, I want more.
I want to live.
I want to get old.
My grandmother recently passed away at the age of 99. She was 60 years older than me.
I think it’s about time we had a 60 year breast cancer survivor. How about telling me I could have 60 more good years in me? Then, when I hit the ripe old age of 99, I’ll ask for more time anyway.
Battling cancer is frustrating. It’s complicated. Cancer isn’t just one disease that acts a specific way, it’s many different creatures that have been categorized under a single umbrella. Different cancers, even different breast cancers, react differently to treatments. And each body reacts to the cancer and the available treatments differently.
I promised an update in an earlier post. Since then, I’ve hit a few bumps in the road. I’ve been stalling on writing this post because I don’t want this blog to turn into a venue for me to whine, but I’m also trying to provide a realistic look at what life with cancer is like – At least life with cancer for this one person.
I got my first dose of Taxol on August 9. The infusion went well and I came home feeling good. The trouble started after the Neulasta shot the next day. That was followed by extreme bone pain, especially in my legs. Pain so bad I ended up waddling like I did the last month of my pregnancy. My toes hurt, I had to wear flip-flops so nothing touched them. Then came the muscle aches. And on a Thursday evening, ten days after the Taxol infusion, I got hives. There were other side effects as well, but you get the picture.
Monday I went back in for the next round of Taxol and made a plan with my doctor for steps to mitigate the intensity of the side effects. I was ready to roll for round two. I wasn’t going to let anything get in the way of my battle with this disease. Or so I thought. Within the first five minutes of the Taxol infusion I felt a deep burning pain in my lower back. If you experienced back labor during childbirth, you know the intensity of this pain. The pain then worked it’s way up my spine and when it got to my neck, my throat started to swell up.
Of course the nurses came running and my doctor was paged and showed up within a few minutes. The infusion was stopped and I was given Benedryl and Hydrocortisol and monitored to make sure the reaction stopped.
Then we started the Taxol again at a much slower pace. This is standard operating procedure. The idea is that I would be less likely to react to the Taxol if it goes in slower, especially after the Benedryl and Hydrocortisol. And for many patients receiving this chemotherapy, that is the case. A reaction is followed by a successful infusion and they proceed with the Taxol.
Yeah, that next dose didn’t work for me either. This time the reaction was quicker, but less severe. Just hives all over the place. So Taxol is off the table. We are back to the drawing board. I have another appointment with my doctor to discuss other treatment plans that may work well for me. We’re still fighting. I haven’t given up. I just have to find a new weapon to battle this beast.
Shortly after I was diagnosed with breast cancer, my baby lost two pounds. The breast had to go; I had to quickly wean a baby who was interested in eating nothing but breast milk. This weight loss was nearly as traumatic for me as the cancer diagnosis.
Then, I connected with the Young Survival Coalition (YSC) and met a group of women who understood exactly what I was going through. These women knew from experience how difficult it can be to balance treatment with parenting.
The Young Survival Coalition is an organization that supports pre-menopausal women who have breast cancer. Why a group that focuses just on the younger women with breast cancer?
Breast cancer in younger women tends to be more aggressive with a lower survival rate, and studies increasingly suggest that breast cancer in younger women is biologically different from the breast cancer that older women get.
Breast cancer is the leading cause of cancer death in women between the ages of 15 and 54.
Because fewer young women get breast cancer, they are not adequately represented in breast cancer research.
We have not yet developed an effective breast cancer screening tool for young women.
Young women deal with different issues than post-menopausal women: effects of treatment on fertility, child rearing, pregnancy after diagnosis, diagnosis during pregnancy, menopause caused by treatment, body image, dating for single women, the list goes on…
I’ve been through a lot in this cancer ordeal. I’m nearly halfway through the chemotherapy phase of my treatment, and that will be followed by radiation. The doctors are working to save my body, my friends at YSC have helped save my sanity. I can’t say enough wonderful things about this group of women and the support they provide.
Ever wondered what a day of chemotherapy was like for a cancer patient? I thought I’d bring you along today, and give you a snapshot of what cancer treatment looks like. I hope its helpful to the newly diagnosed. Obvious disclaimer: of course, every patient’s treatment is different, and each cancer treatment center is different.
6:00 AM
Alarm goes off. I’m supposed to get up and take my pills. I’m on a new type of chemo that requires me to take a pill 12 hours, 6 hours, and 1 hour before the chemo infusion starts (the first pill was taken care of last night). I hit the snooze button.
Again.
And again.
And again.
7:00 AM
Actually get out of bed and take the pill. Oops. Time to get the baby and myself ready to go.
7:45 AM
Mom shows up to take us in for treatment. She even packed me a lunch for my long day. Thanks Mom.
8:15 AM
I arrive at the Seattle Cancer Care Alliance. Mom takes the baby with her for the day. Check in for Port Access. (Instead of having an IV put in every time I go in, I have a port that is installed under the skin near my left collarbone. I know a lot of people hate having the port, but I love it. It’s so much nicer than the IVs and for some reason, getting an IV going on me is really difficult.) After the port access is installed I go around for the rest of the day with these tubes dangling from my chest.
Break into moms lunch while I’m waiting.
9:30 AM
Blood draw for MUGA scan (Multi Gated Acquisition Scan). They take my blood, make it radioactive, and later they will return it to me, then they can track the blood as it makes its way through my heart to determine it’s efficiency. Several of the agents in my chemo are known to cause some heart damage to a small percentage of patients. This scan is scheduled periodically to determine how well my heart is handling the chemo, and whether we need to make any adjustments. This isn’t part of my normal chemo routine.
waiting . . .
waiting . . .
waiting . . .
10:05 AM
The machine that does the MUGA scan is a long narrow bed (generous term) with an arm holding a 2″x2″ tablet that looks something like a small film holder for an x-ray machine. When I lay down, the radiologist attached leads and wires to my abdomen and chest, then another tech came in and they both verified that the blood they are giving back to me, now radioactive, actually belongs to me. The the treated blood goes back in through the port. Then she covered me up with a warmed blanket, they have blanket warmers all over the place here and they are really good about making sure you don’t catch a chill. After covering me up, she help up a wide vinyl loop to stick my arms through so I could relax them and wouldn’t have to hold them in the air at my side throughout the test. Seriously, when I say a long narrow bed, I mean maybe a foot and a half wide, not enough room to rest your arms at your side. The radiologist positions the tablet just above, but not touching, my chest. Then it’s a matter of just laying still for a long time, repositioning the tablet to get another angle, repeat… you get the picture. No pain, just boring laying there and trying not to move – plus I had a bit of a cough, and it was really frustrating trying not to cough.
10:50
Stop by the pharmacy to pick up a prescription – to be honest, it’s a refill of the pills I’m supposed to take 1 hour before chemo because I forgot them at home. I’m really on a roll today. I’m blaming it on chemo brain.
11:00 AM
Take the pills and meet with my Oncologist’s nurse, Martha. I usually meet with either the nurse or the doctor before each infusion. We discuss my symptoms and any questions I might have. I confess I took my pill late this morning, she said it’s no problem at all, I just needed to get the pill in the general time frame. She also said that my blood counts are awesome (yay me!), and my heart is operating well within normal parameters. That’s what I like to hear.
11:30 AM
Check in for my chemo infusion. They give me a pager like the kind you get at restaurants while you’re waiting for a table.
11:50 AM
Pager goes off and I head back to my chemo room (Bay 39 this time) and get settled in. I follow my nurse around, so the bay I’m in depends on the section she’s working in. Joy is so awesome I’d happily sit on a speed bump in the parking lot if that’s what it took to have her do my infusions. Joy orders my meds and then we compare notes on our babies while we wait for the meds to show up (ok, not the whole time, she did check on her other patients).
12:30 PM
Start Herceptin infusion through the port.
Today’s lineup:
12:45 PM
The husband finally arrives. Yay! He tries to be here with me for most of this stuff, but he had a critical class this morning, and I really prefer that he not miss his classes.
2:20 PM
Benadryl and Zantac, pill form. Zofran pushed into the line in the port by hand. These are premeds to help prevent nausea and help prevent an allergic reaction. Now we are getting ready start the real chemo: Taxol. Another nurse came in to verify that the meds and the patient both match the Doctor’s orders. They don’t do this for every single medication, just the really big guns. The nurse also puts on a plastic apron, with full length sleeves and wrist cuffs, before handling these really harsh meds.
2:50 PM
Sent The Husband to procure treats from the Infusion Unit kitchen: specifically mac’n’cheese, and chocolate ice cream. Please no lectures on health food, it’s chemo day.
nearly 3:00 PM
The Husband returned with the ice cream and tortellini with pesto, they were out of the mac’n’cheese. Totally appropriate substitution.
play around online for several hours . . .
6:45 PM
Zoladex: this is a little pellet that is inserted into my abdomen with a needle. The lidocaine shot they give me before hand hurts more than this shot. Then the port is removed and I get a little bandage, and we head out of the building where mom and the baby have arrived to give us a ride home.
Symptoms: The first evening of chemo I usually feel great. The meds they have been giving me to combat nausea are awesome, almost no nausea at all. The biggest side effect for me has been fatigue. It’s just really hard to stay awake sometimes, or to get off the couch at any time. It sounds counter-intuitive, but exercise does help with fatigue. Generally the symptoms accumulate through the course of the week. Tuesday is more foggy than Monday: Thursday and Friday I’m much more exhausted than Wednesday. It’s interesting that there is such a long (several days) delay between getting the chemo and when the symptoms hit their peak. I’m curious to see how my symptoms will change with the Taxol. Many people I’ve met say the Taxol was easier for them to tolerate than the AC I was on before, although there were a few that had a more difficult time. I’ll report back next week with an update.
And for those of you who have been anxious to see a picture of my bald head:
If you have any questions about cancer, treatment, symptoms, side effects, or how I’m dealing with it all, please feel free to ask in the comments. I’m happy to answer questions.
And if there is anyone out there who has just been diagnosed with cancer, I hope this post will be helpful for you. Hang in there. Bear in mind that every treatment plan is different, and everyone experiences and tolerates their treatment different. I found that most of the worst case scenarios my imagination conjured up were much worse than the reality when I finally faced it. I hope the same is true for you. Best Wishes.
It was oh, so early this morning when I dragged my reluctant family out of bed. Not one of us are morning people, even my 14 month old daughter knows better than to wake up before 9. This morning we were all grumpy and befuddled as we attempted to remind ourselves why we volunteered to drag our asses out of bed, feed and appropriately clothe the three of us, drive downtown, and then walk 5 kilometers in the rain.
We did it because cancer sucks.
We did it because I needed to feel like I was actually doing something, rather than just enduring procedures and their side effects, and even worse, all the waiting that goes along with living with cancer.
We didn’t walk alone – I want to send out a big thank you to everyone that showed up to walk with me: Aaron, Gem, Mom, Mel, Cora, Tim, David, Max, Ilona, Kristen, Paul, Sammy, Grey, Trisha, Ericka, Leonor, Leticia, Jill, and many others who were there with us in spirit. I especially want to say thank you to Kristen who picked up and distributed the team T-shirts and bibs – she also went out and bought the pink feather boas. I also want to thank everyone who made donations to the cause.
The experience of walking as a survivor this year was very different from previous years.
I got a pink T-shirt.
I went through the survivor’s finish line.
I got a medal.
I got choked up.
I got through it – and yes, I feel like I did something.
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