Let me tell you about my birthday. When my birthday is coming up, EVERYONE KNOWS. I make sure of it. And it’s always been that way.
Copyright 2011, Amy Rauch Neilson
Where have I been?
This is Week 2, Round 8 of chemo. That means I’ve now sat through 30 infusion days — and 120 total infusions — since chemo began Feb. 1, 2011.
Ugh. Yuck. Blech. Ewww. That’s how I feel after today’s chemo. I often have trouble with word retrieval in the hours following my infusions. My Chemo Buds notice this on Tuesdays — my hard chemo days — as the second infusion, Gemzar, makes me go pale and honestly, a little loopy. I sometimes slur my words and feel like a drunk who never had the pleasure of the cocktail — the chemo cocktail, yes, but not the Whiskey Sour that’s my standard order.
It feels like a bout of the flu coming on — headache, body aches, nausea. But I slept for a couple of hours this afternoon after I got home and it recharged me enough that I could eat a few slices of bread and a couple of peaches along with the antioxidant green tea that is super good for me and that I am drinking by the gallon daily. This little hiatis won’t last long — I need to hit the sack shortly. But first, some silver linings to share with you. A few of my favorites:
1. Support of Friends and Family. I keep waiting for chemo to be fun (I’m the eternal optimist), but so far, it’s disappointed me. I CAN say that it is really reassuring and supportive to have the many loving family and friends in my life who show up on time, drive me to chemo, sit there beside me, drive me home and tuck me into bed. Today, my Chemo Buddy was my bff Elaine Schultz. I enjoy the conversations with each of you and treasure you and your friendship. Not only that, studies PROVE that cancer survivors who are surrounded by a loving network of their peeps have much higher rates of long-term survival. Thank you.
2. Positive Test Results. My tumors have remained stable and/or shrunk every time since February that I’ve had a CT Scan. The latest one taken in the hospital mid-July showed the same results. That’s a LOT to be happy about!
If that isn’t enough, the way I FEEL is! The coughing linked to the tumors in my lungs stopped two months after chemo began; three months later, Don noticed that my stamina had dramatically improved, and honestly, I am feeling terrific. People have been noticing — people who haven’t seen me in two or three months. They’re surprised.
“You look really good,” they say.
I shrug it off and say, “Maybe it’s the tan?”
I mean, that seems like a reasonable explanation.
Nope. They’ve already taken that into account and they are sure I look better, healthier than just two or three months ago. Waaahhoooo!!!!!!!!
3. Amazing Blood Counts! This is a biggie. For the first time in many, many months, my blood counts were SO good today that I don’t have to do those awful, painful Neupogen (white blood cell booster shots) this round! They are worse than chemo, as I’ve said many a time. Very painful side effects in my bones (think rib bones that THROB) that last for 24 hours per shot, and the regimen calls for five days of shots. So, hooray for a small victory that is actually quite BIG!
My doctor attributed it partially to my changeover to a more healthy diet. It’s a slow but sure process, but I’ve already whacked most of the refined white sugar from my diet — replacing it with natural Blue Agave (available at most health food stores and quite good) that does not cause blood insulin levels to spike. I’ve got to keep my glycemic index in check. (For more on the glycemic index and cancer fighting foods, etc., see David Schreiber’s book, Anti-Cancer: A New Way of Life. I can’t recommend it highly enough.)
I’m also eating tons of fresh peaches now in season from our local orchard, raw veggies, whole grains, tomatoes and fresh green beans (raw) from my garden, and EEEK! I ate a mushroom yesterday. For those of you who know me, I’ve had a lifelong hate-relationship with mushrooms. They are one of the only foods I cannot stand to eat.
But they are extremely beneficial cancer fighters — lots and lots of great, healthy properties. So, I’m gonna find a way to get them down. Eww. Ick. My close friend and Theo’s godfather Ken Bagnall tried to lessen the pain of my palate yesterday by covering a raw mushroom in spinach dip.
Still yuck. I nearly hurled. I compare it as being on equal footing with the one time I ate a huge, garlic and butter sauted escargot. That was 20 years ago and I swear, I need to bring it up in a counseling session sometime.
4. Back on Track. It is a victory in and of itself that I was finally able to get through a full round — four sessions — of chemo after all these weeks. I’d been off since the end of June due to low blood counts and the infection that hospitalized me. I am so grateful that I am back on my regimen. That really is a silver lining!
5. The End of Chemo is Near. Nope. I’m not holding out on you. I still don’t know when the end of chemo will come. No one but God knows that. But I do know that getting back on schedule means that I’mmmm bacccckkkk and heading in the right direction, AKA The Finish Line.
Let’s get this chemo thing over and done with ASAP so I can return to my regularly-scheduled life, shall we?
Copyright 2011 Amy Rauch Neilson
I’m just now back from a day of chemo. Tuesdays are always the long day of the week, with three back-to-back-to-back infusions. My blood counts were well within range, no fever, all vital signs were good. Whew!
I’m so very pleased that I was able to return to my chemo regimen and get back on my schedule of fighting and beating this beast. I’ve been off/unable to have chemo since the end of June. We are back on track!
My bff Jennifer Amprim Wolf just dropped me off at home. She sat beside me all day and I shared a new-found secret with her: there’s a room in the chemo infusion center with heat/massage chairs…today was a “slow” day, so we were able to snag that room — and the chairs! Score!
Jennifer is walking the Susan G. Komen Three-Day for the first time this weekend in my honor as well as for others who have fought or are currently fighting the breast cancer battle. Go Jennifer! She has trained long and hard for this weekend. Please send prayers of sustanance and good fellowship her way. What a trooper!
Someday very soon, I hope to be at a place where I can do the Three-Day alongside her and my many other friends who take on this challenge every year. I will be touching base with Jennifer over the weekend to see if I can pop in and walk beside her for a short distance. Seeing a sea of pink is always uplifting and inspiring, if not downright euphoric!
But until then, it’s off to bed for me so I can recover from today. If I get a few hours in, I may feel well enough to spend some time with Don and Theo this evening. Low-key time. Maybe Theo and I will be able to watch the second half of Scoobie Doo and the Lake Monster, which we began watching last night.
Thursday’s chemo will also knock me down, but not quite as hard. Rest, as difficult as that concept is for me, is what I must do now.
Copyright 2011, Amy Rauch Neilson
I was crying when I called my sister-in-law Carrie the other day. A couple of months ago, she made me a CD mix to get me through the toughest moments. The very first song is Katy Perry’s Fireworks. Carrie picked that one because she knows the Fourth of July is my favorite holiday. And she loves the lyrics.
When I called her the other day, I said, through sniffles and sobs, “What if there’s only a hurricane for me, and no rainbow?”
Without hesitation, she said, “The rainbow is already out there, sweetie. You just can’t see it yet.”
She knew I was referring to these lyrics:
After a hurricane comes a rainbow
Maybe your reason why all the doors are closed
So you could open one that leads you to the perfect road
We talked a lot about that rainbow, the one that will appear after I make it through the hurricane-force winds that blew into my life following my Stage 4 breast cancer diagnosis in January.
My fear, I told her, is that after the hurricane, there isn’t going to be a rainbow. Just devastation.
But Carrie won’t hear of this. She doesn’t tell me there’s a rainbow out there because it’s what she thinks I want to hear. She tells me this because she believes it to the very depths of her soul. Never, she says, has she been so certain of something.
This calmed me and after a few minutes, I was able to pull myself back together. I had to. Theo was at summer camp and it was time to go and pick him up.
As I was backing out of our driveway, our neighbor, Dave, walked up to my car. I rolled down the driver-side window, offered him a handful of Cheez-Its. He looked at me and said, “I saw you the other day. You weren’t looking very happy.”
We share a narrow, one-lane road with three other houses, a straight path that leads to the lake like a spoke on a wheel. It’s a private road, which means our mailboxes are at the end, where our street meets the service drive. So, getting the mail means a tenth of a mile trek to the end.
As I was scrolling through the moments when Dave might have observed me, I thought about a day last week when it was dreary and drizzling and I’d made the trek for the mail. The neighborhood was quiet; the kids inside doing puzzles or watching movies on a rainy summer day. A few tears on my cheeks could easily be mistaken for raindrops, should anyone cast a glance out the window.
I was just having a moment. And Dave, who has lived next door for the dozen years since we moved in, reads me well.
“You weren’t looking too happy when I saw you last week,” he said.
I looked him in the eyes and said, “I’m afraid…” But I couldn’t finish. I waited a minute, then tried again.
“I’m afraid I’m going to die,” I said, this time staring straight at the steering wheel.
“You’re not going to die,” Dave said. “You’re going to outlive me.
“You have changed the way I think. You don’t realize how much you influence people, how what you say and do changes the way they think. That’s really powerful.”
I thought about that for a minute, trying to figure out what I do or say that makes that big of an impact. Then I took his words and deposited them into my heart.
Earlier in the day, I’d come across this little box filled with shark’s teeth at a gift shop. I thought of Theo and knew it’d be two bucks well spent. I gave it to him when I picked him up at camp. He was ecstatic and for the rest of the day; it was like nothing else existed save this little, tooth-filled clear plastic box.
Then the strangest thing happened. I was making dinner and Theo called me into the family room.
“Look, Mommy,” he said, pointing to the lid of his little box. “There’s a rainbow.”
Indeed there was. The plastic lid of this tiny box was acting as a prism to the light streaming in through the windows, reflecting the colors and shape of a rainbow. What were the chances, on this day, at this moment, in this way? If the conversation with Dave, the observation by Theo, are not Instant Messages from God, then what are they? Dave said my words and actions are powerful, but they pale in comparison to the messages coming from above.
Maybe all the doors closed so God could lead me to the perfect road.
And yes, I do believe there will be a rainbow.
Copyright 2011, Amy Rauch Neilson
If you’ve ever been through cancer treatment — or are close to someone who has — you have likely witnessed not just the physical and emotional strain of the disease, but the financial fallout as well.
Thank God there are lots of organizations out there who have made it their mission to help cancer patients navigate these rocky waters. Good people. Really good. I know because I’ve talked with many of them first hand. They are top-notch, compassionate, and willing to help in any way that they can. And they’ve offered me help. Real help.
My blog post for The Pink Fund this week is dedicated to those organizations and people who are devoted to reaching across that great divide, grabbing hold of a cancer patient’s hand and helping to guide him or her to the other side of impending financial crisis.
If you or someone you know is battling cancer and needs financial assistance, be sure to pass my blog post from The Pink Fund on. You’ll give them two gifts — the chance for help when they need it most and the opportunity and ability to focus on Job #1: Getting Better.
Copyright 2011, Amy Rauch Neilson
There was blood, sweat, and tears yesterday, but not in that order.
First came the tears.
Friday was Parent/Teacher Conference Day at Theo’s school. I pride myself on being organized and efficient. I claimed our slot the first day the sign-up sheets were posted. Then, I came home and marked it on our family calendar. I’m sure somewhere in my subconcious, this thought lurked: I may be fighting breast cancer, but I can still manage our daily life with the best of ‘em!
I thought our conference was at 10:20 a.m. I would have bet money on it. Big money.
So, when we arrived at 10:15, I thought we were right on schedule.
There was another parent waiting awkwardly in the wings as Theo’s teacher explained that we were late; our 20-minute conference slot had been at 10 a.m.
There was a perfectly reasonable solution to this problem — 11 a.m was wide open and in the meantime, we could meet with Theo’s music teacher. But I broke down sobbing anyway. Right there, in the school lobby.
That should have been my first clue.
I pulled myself together — well, mostly — and we met with Theo’s music teacher and then his classroom teacher. They are both terrific and, despite my earlier breakdown, it went well.
Next, the sweat.
My bff Anita Griglio Kelly chauffered me to yesterday’s chemo infusion. I was feeling pretty weak when we arrived, but I was determined to get my treatment. I had chills, then sweats, then chills again. That mystery was short-lived after the lab results of blood drawn when I arrived at the Infusion Center came back. Although I’d had an infusion of Procrit on Tuesday in an effort to raise my red blood cell counts, they had continued to plummet. I needed two units of blood, asap.
Finally, the blood.
Following my chemo infusion, I went straight to the ER, where the doctors and nurses prepared me for the first blood tranfusions of my life. I’d been on the giving end many a time. It was a bit surreal to be on the receiving end.
My blood was sent to the lab to confirm and reconfirm that my blood type is indeed A+, then “cross-matched” for other markers that would indicate which packets of the donor blood available were the least likely to be rejected by my body.
Finally, two units of the most beautiful crimson liquid I’ve ever seen in my life arrived in Room 8 of the ER. Might as well have been liquid gold. The nurse accessed my port and the tranfusions began.
During the next six hours, as I watched the blood slowly drip from the bag and travel through clear plastic tubing to the port in my chest, I wondered who it was who had been kind, generous, and selfless enough to donate blood for a complete stranger. I would never know.
But if I could, I would tell that person that their gift restored and rejuvenated the Mom of a little five-year-old boy named Theo and the Wife of a loving husband named Don who just yesterday told me that he is treasuring every day we have together on this planet. I’d tell them that I went from a woman so low on “fuel” that she could barely sustain a simple Parent/Teacher conference earlier that day, to one who cooked a breakfast of french toast and bacon with her family the very next morning. Most of all, I’d say two simple words: Thank you.
Several times last evening I looked up at that donor bag of blood and thanked God that there was someone out there who was willing to give it, destination unknown.
So, although I am humbled and grateful for the many people who are stepping forward to donate blood on my behalf, designated specifically for me should I need it in the upcoming months, I also have another request.
Whether or not you are A+, whether or not you can help me specifically, please give blood.
There are lots of “Amys” out there who desperately need it. Go to The Red Cross website and make an appointment. There are convenient donation sites all around, it takes but a few minutes, and it is truly a life-changing gift.
Copyright 2011, Amy Rauch Neilson