Before I start this intensely personal post, I want to tell you about this most inspirational song that I strongly encourage you to listen to. I first heard it around the time I was diagnosed, and it was written by singer Kal Hourd and my cousin’s son (first cousin once removed, if you’re into that stuff), Brent Baxter. It’s called, “When Pink is Just a Colour Again” and is a wonderful, incredibly beautiful song of hope and inspiration. “When pink was just a color and ribbons tied back hair…” Please do take the time to listen. I think you will be blessed, especially if breast cancer has touched your life in any way.
Warning: this post tells it like it was, which isn’t pretty. Don’t feel that you have to read it.
I had always been terrified at the thought of getting cancer. Not because of the cancer itself, strangely, but because of chemo. I had an irrational fear of needles. I had somewhat conquered it (as in I stopped fainting every time I had blood drawn) when I had to have lots of blood tests during my 2 pregnancies. But IVs were in another class altogether. I had thought I’d never survive chemotherapy, not only because of the IVs but also because I had heard so many horror stories throughout my life of people becoming so very ill from the chemo. So I was hoping against hope and praying I would not have to endure chemotherapy.
(Click here to read Part 1—Diagnosis)
Our daughters went back to college and I scheduled surgery for December 12. Given the option of a mastectomy or a lumpectomy, with the professional opinion of the surgeon that my prognosis would be the same with either, I chose the less invasive lumpectomy. I would have done a mastectomy if it had been warranted. I wanted to have it over and done with so I could enjoy Christmas with my daughters home. It was our turn to host our extended family, and I didn’t want their time taken up with my surgery. Our adult niece was living with us at the time, so I knew she would be a major part of my post-surgery care. Compassion is her gift. I wasn’t worried about the surgery.
What didn’t occur to me as I planned this perfect timing was that my surgery was smack-dab in the middle of finals week for my girls. I felt so bad about that—it must have been almost impossible for them to concentrate. Thankfully, they did pass all their tests. On the bright side, if they hadn’t, they would have had an impressive excuse for not doing well!
13 days following surgery
They came home in time to help my niece with the planning, preparing, cooking, and baking for the holidays. My daughter baked Tom the Turkey. My sisters and another niece helped bring it all together for a wonderful, blessed Christmas.
Oh, the surgeon got all the cancer with good margins, the lymph nodes were clear, and it was Stage 1. Thank you, God!
I remember having my 3-week checkup after the surgery and asking the doctor if I should be doing any exercises or anything. He started showing me how I could sort of walk my hand up the wall to stretch it out and improve range of motion. I raised my arm straight up over my head and showed him that I had already been working on that. I know about range of motion and not using your muscles after surgery. He just laughed.
Even though my cancer was stage 1, it was determined that I should have radiation. Until they got more results and decided, since I was HER2 positive, I also needed chemotherapy. Chemo first, beginning in January.
This pink balloon arch was in JFK airport in New York City for breast cancer awareness month when I flew through there in 2013.
I’ve always loved rainbows, especially because they are a specific promise from God and a reminder of his power. So it was inspiring, awesome, comforting, serendipitous, and maybe even empowering to see a double rainbow right over my house as I left to go to my first chemotherapy appointment. I’ll never forget it. It seemed like a personal sign that God had me in the palm of His hand.
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Isaiah 41:10
The chemotherapy clinic, an hour from my home, was quite an experience. My girls were back in college across the country. My niece took me and stayed with me all day. She held me and encouraged me when I broke down in tears on the way in. I will always be so grateful for her. One sister was out of the country on a mission trip, but my other sister and niece came to be with me, and my husband also came to cheer me on.
I walked into a room with a few beds and lots of recliners. Men and women of all ages and ethnicities were hooked up to IVs, and some had ports or pic lines. It felt surreal. I was now a chemo patient, a reluctant member of this exclusive club.
I chose an empty recliner and tried to prepare my mind for the dreaded IV. I am a very hard stick—I’ve been told my skin is thick, my veins are tough, and they roll. Triple threat, that’s me! In the chemo room each nurse only gets 2 tries to insert the IV before another nurse takes over. My record of tries was 7. My fear of IVs was well-founded. But I have a profound appreciation of chemo nurses!
They would start off by putting a heating pad on my arm which helped to open up the veins. They could only use the arm that didn’t have lymph nodes removed, because of the risk of lymphedema. About three treatments in, a nurse told me about a cream called Emla (prescription only) that they used for children to help numb the area so it wouldn’t hurt so much to insert the IV. I started using that and it made a huge difference, although i didn’t always smear it on the right spot, as it had to be done 30 minutes before, and I never knew where they would find a viable vein. Turns out most were at the base of my fingers on the back of my hand. Not my favorite spot, but what’re ya gonna do?
Three patients made a lasting impression on me from that first day, though I remember some of the others as well. I sat next to a gentleman from the Middle East who worked on his laptop on a site he had developed to help Muslims and Americans understand each other. I have tremendous respect for that. He was in the US on a student visa going to college, but had a lovely wife and adorable daughter back home (yes, I saw his sweet pictures!) When he was diagnosed with cancer he feared he would die because of not being able to get medical help. To his immense surprise and relief, all his medical bills were covered by insurance through the school. He felt that if he hadn’t gotten treatment in America he wouldn’t have made it through the cancer. He was incredibly grateful.
Cynthia, a nurse who had non-Hodgkins lymphoma, was also in her first day of treatments. She and I just clicked, and we are still friends and encouragers of each other to this day (mostly on Facebook). She’s a trouper! The third was a young man who was battling sickle-cell anemia, and I saw him at nearly every infusion for the next two years. He had an indomitable spirit, but the infusions and the illness laid him low.
I had my niece post this on my FB page during my first infusion.
I was teaching at a community college at the time, and the first chemo put me out for a week. The actual chemotherapy “cocktail” (my combo of meds) infusion wasn’t as hard as I’d anticipated, but i gotta tell you, it was long! For every infusion I got there around 7 a.m. to have bloodwork, see my doctor, who ordered the meds based on my bloodwork, and wait for the lab to prepare my cocktail. Then getting the infusion going. I was usually the last one done, often after 5:30 p.m.
The day after each chemo treatment I had to go back for a Neulasta shot to boost my immune system. You can do that at home now, but not then. I’ll be honest here—they warn of bone pain. That doesn’t begin to prepare you for it. A couple of days after the shot, it felt like every bone in my body—including my pinky fingers—was broken. I honestly don’t know how I got anything done that week—I only remember trying to sleep all day because that’s the only time my bones didn’t hurt. It was so bad that I wasn’t even able to talk to my daughters when they called. After a few days it eased a little and became bearable, thankfully.
I also had an extremely bad second night. How can I put this delicately? Um, I guess I can’t; you can skip over it if you want. They had us buy medicine to prepare for both constipation and diarrhea, because chemo often causes one or the other and there seems to be no way to predict which will happen. Well, I didn’t have diarrhea. I was in such pain I was literally screaming and crying most of the night, and the medicine didn’t help quickly enough. Thankfully that only happened the once. And I only have one word: Miralax. Daily. It was a miracle med.
Christ got me through it!
When I went back for round 2 of chemo, my friend Cynthia told me she had experienced the exact same reactions, and hers had actually put her in the hospital overnight. We further bonded over that. I will also tell you, though, that her “cocktail” was worse than mine. One of her meds, nicknamed “the red devil,” was so harsh on her veins that she had to get a port. But on the bright side, no more IVs for her, and she was so much more comfortable.
The nurses also told us at the second infusion that we could take Tylenol and Claritin together before and during the infusion and days following to help mitigate the bone pain from the Neulasta. Who knows why, but it did help a lot—it made the pain bearable, and I recommend it. I had only four chemo treatments total, and was knocked down for fewer days each time. Because of the HER2 positive factor, I had to have Herceptin for 2 more years, so I wasn’t done with IV’s by any means; but those infusions didn’t take me down the way my chemo cocktail did.
The nausea was real—but it wasn’t nearly as bad as the horror stories I had heard—at least for me. They give anti-nausea meds with the chemo and a prescription for home that kept it mostly under control. It was a lot like morning sickness (or motion sickness)—just kind of yucky all the time. I had my infusions on Fridays and the Neulasta shot on Saturdays. I learned that I could go to church on Sunday mornings because the nausea and bone pain didn’t hit till that afternoon. Then I was down for the count for the better part of a week, and just finally started to feel back to normal by the time the next infusion rolled around. This was typical for most chemo patients. My infusions were every three weeks, with bloodwork and appointments with my doctor every week. I feel extremely blessed to have only needed four 8 1/2 to 9 hour treatments. Especially since I had radiation to look forward to.
In keeping with my determination to stay positive and laugh a lot, a friend I hadn’t seen for over 50 years (we found each other on Facebook) sent me a joke or cartoon every single day. What a perfect gift! Thanks, Kathy! As I told her when we first connected, “Men have gone to the moon since we last saw each other.” I did get to go see her in Texas eventually—I know you were wondering. It’s amazing to still have friends you went to grade school (and one year of high school) with. Such a blessing!
The “chemo bag” from my girls. I used it every time!
Purple had always been my favorite color—until now. From now on it would be pink. You can’t believe how much pink and pink-ribbon stuff I have, and I love it all! I even bought a pink bucket of KFC and a pink box of kitty litter, both supporting the Susan G. Komen Breast Cancer Foundation. Pink ribbons seemed to be everywhere I looked. My daughters sewed a pink ribbon on a multicolored polka dot tote bag and sent it to me filled with pink candies, a coloring book, pens, and other fun things to keep me occupied during infusions. That became my chemo bag that I carried all my goodies, my emla cream, books, and laptop in. My sister brought me a multitude of pink things including pink jelly beans and m&m’s and a pink mini flashlight with a pink ribbon on it. My sister-in-law sent me a pink umbrella with a pink awareness ribbon design. My sisters and nieces were there for the remaining infusions, and one of them always went out to get lunch for us. Support like that makes anything easier.
I finished chemo on April 12, 2010. My middle sister baked me these adorable pink ribbon cookies—and they were the best sugar cookies I have ever tasted! My husband bought me pink tulips—a flower we both love. It was worth celebrating! I had survived chemo!
After the second infusion, I started losing my hair. (Read Part 3 here)
It was a huge blessing to me to be able to be there with you! Your bravery was inspiring!
And bendy straws do rock.
Bendy straws—-Right? You know I’ll never be able to thank you enough. Love you!