I knew it had been awhile, but I didn’t realize that it has really been more than two weeks since I last posted.
I’m either feeling terrible (for several days) or terribly busy (trying to cram everything I possibly can into the days I feel good).
When I’m not sleeping off the chemo, I’m trying to keep up with work, home, kids, grocery shopping, LOTS of end-of-school activities — a normal life. It is just a hectic time.
Part of the reason I haven’t made a huge effort to blog is that I really just feel like complaining. So pardon my whiny post.
In case you guys hadn’t guessed, chemo really sucks. I wish I could find a way to accurately describe how it feels, but nothing seems to work.
The day of treatment, I begin the day completely nauseous to the point of having to take prescription meds just at the thought of going to the cancer center. In fact, just driving by the center makes me nauseous.
We usually start the day on the chemotherapy floor, where they put the needle in my port.
It hurts pretty bad when they poke you. It is better than having an IV (which constantly hurts), but it still sucks. They take my blood so they can run tests on it to make sure my counts (red blood cell, white blood cell, etc.) are high enough to receive chemo. Last time, we actually had some flagged as low, but they weren’t low enough to delay doing chemo. I really hope that never ever ever happens. I don’t want anything to delay the end. I want this over.
After the blood work, we usually walk down to see the oncologist. This appointment is generally when I tell her about the weird symptoms/side effects I’ve been having. And then it’s her turn to tell me it is all normal.
From there, it is back up to chemo. I get comfy in my chemo chair and settle in for awhile.
They start with a lot of pre-meds — steroids, anti-nausea meds and Benedryl. Lots and lots of Benedryl.
I think the Benedryl is what gets me, but I’m really not sure. Once it hits, I’m in a daze. I don’t feel comfortable enough to sleep, but I don’t feel good. It is hard for me to concentrate on anything, and I’m pretty sure I babble a lot. Best of all, I really have no memory of what happens from the time it hits until a few days afterward.
I know I’ve mentioned that before, but for me, it is a very strange part of this. I don’t think it is typical of what other people experience either. I’ve never heard anyone talk about it.
Sometimes, if you tell me what happened, I can catch glimpses of it in my mind. For instance, I would have never been able to find the memory of my mom and I pulling into the driveway after chemo while Alan and Hayden were pulling out to go to his band concert that I had to miss. Alan reminded me of that, and now I can see a snapshot of Alan with the window rolled down and Hayden in the front seat.
The other couple memories I have from that day are running into things and waking up completely DRENCHED in sweat in the evening.
I think it gets worse each time. I’ve never had such coordination problems, but I felt like I was drunk. I was bumping into walls and doorways. Strange. And the night sweats seem to happen the night of each treatment.
By Sunday, I start to have memories that I can find by myself.
But, I don’t feel good on Sunday. Or Monday. Or Tuesday. Even on Wednesday.
I feel progressively better each day. The waves of feeling awful come less frequently each day. But when they hit, they hit you like a freight train. You think you are fine, then BAM … your head hurts and your stomach is churning and the idea of even walking seems impossible.
I’ve had a couple times where on Day 6, I start running a fever. The fever doesn’t stick around, but it makes me feel pretty bad.
I guess I’m lucky that I have an average of 6-7 days of feeling pretty normal before my next treatment. With my second treatment, I only had about 3-4 days of feeling normal, and it was really depressing. I’m glad that isn’t happening now.
That said, the hot flashes don’t go away. Those are daily. Insomnia is occasional.
To try to keep a positive attitude, I will list a couple things that are good:
• I don’t have to shave very often (though I do still have to)
• I don’t have to wash, dry and straighten my hair
Speaking of hair … it is funny because I do catch people giving me second looks because of my scarves. Adults and kids, but mostly adults.
Last fall while frequenting MD Anderson, I would obviously see a lot of people with no hair wearing scarves. When I thought they weren’t looking, I’d definitely stare. It was for multiple reasons — I wanted to gauge how they looked to see just how hard chemo would be. I was fascinated by the different types of scarves, knowing that I was clueless about how to tie one. I wondered what their stories were and how my story compares to theirs.
So, as I walk into the grocery store and catch several people giving me second looks and/or staring, I really don’t feel embarrassed (as my 12-year old feels I should). I remind myself that they are likely to have their own story.
There are SO many women affected by breast cancer that maybe they know someone who has it. Maybe they are checking me and my scarf out to see what it will be like when their wife, sister or mother start chemo in the near future.
Maybe they have just been diagnosed, are scared out of their minds and really wish they could ask me 100 questions about what to expect. Been there.
Maybe they are survivors of 1 year, 5 years or 10 years.
Maybe they lost their wife, sister or mother to the awful disease.
It reminds me of this video that has been circulating on Facebook:
You know what? I was right.
At Crest on Friday, I was in a hurry getting prepared for Brynlee’s birthday party. There was a man who was probably in his 50s or 60s. I was in a hurry so I mainly remember him taking a long time to find the perfect dozen eggs. I was in my own little world so I didn’t notice his double take as he walked off.
Then he came back. He tapped me on the shoulder and said …
“I’m sorry, but I just have to ask you – are you, um … uh … seeing a doctor?”
I shared the news that I was halfway through treatment.
“I just had to ask because, I lost my wife to cancer a year ago this month. We were married for 30 years and I loved her so very much.”
He went on to tell me about her calling him at work the day she found out and saying she had cancer. He talked about how neither of them had any idea what this was going to mean that day. They were scared.
Sounds all too familiar.
Turns out, her cancer had spread. And despite extensive chemo treatment, she passed away.
He was so sad and heartbroken. He wiped away his tears and told me that he just had to stop me and that he wishes me the best with my treatment.
So if you are the praying kind, say a little prayer for him.
I can tell he really needs it.
This had the waterworks going for me this morning. I can almost picture that man in my mind, just as you described. I know being able to help others as you go through this is a big deal to you, as we, friends and family, help you as best we can go through your journey. Makes my heart hurt this morning, but remembering to love and hope!
I know, Calley! I was fighting back tears after he left. It was so sad.
I think about you often and check your blog regularly. I’m so sorry you haven’t been feeling well but I’m glad to see a new post from you. You are such an inspiration to so many and I can’t wait for you to kick this cancer to the curb and show people how it’s done!! What an incredible day that will be!! Big hugs and love your way, Jenny!!
I love that your last thought is for someone else. You’re pretty terrific. Thank you for sharing your stories.
You Inspire all of us. Keep on fighting… we’re right there with you. Go #TeamJenny!
Hear what they hear. See what they see. Feel what they feel. Tears are flowing freely tonight, and I’m reminded of a scripture. I should know where it is, but can’t remember tonight. But it say “for they do not know how to pray as they should, so the Spirit intercedes in sighs and moans too deep for human understanding”. This used to be a huge area of discussion in the Baptist University I attended. Some said “tongues”, some said otherwise. For me, it was one of those scriptures that I “got” immediately: when we cry, when our hearts are broken, when we don’t even know what to say, I feel that this is when God truly understands us, and somehow reaches in and makes the hurt less intense. No flowery speech, no epic words of wisdom, just a deep, hurtful cry to Someone who understands. Tonight I am praying that prayer for you, for those in OKC, for those in the video, and for that man who approached you in the grocery store. And I think I may have been heard. We love you Jenny!
2014. It’s about all I can say right now. My heart is heavy on so many levels.
It HAS to be a better year. HAS to.
Sending you love & prayers as always. Although a heartfelt reply, it seems so inadequate today. On several levels.
What a beautiful post Jen. It’s so true that you have no idea what someone else is going through. I try to remember that everyday, especially when I’m feeling impatient. You never know the heavy load someone is carrying. Sometimes just a smile and a kind word makes a world of difference. Thinking of you everyday sweetie.
As always, Jenny, your posts inspire. I just got word that my sister-in-law has breast cancer and will soon have surgery. I will share your blog with her. I know it will help her! All the best to you and Alan and the kids. You are truly AWESOME!
Tears are flowing..that poor man. My heart goes out to him. I will definitely say a prayer that his pain eases. I can’t fathom.
And by the way, you are right. I catch myself looking as well, ever since you got diagnosed. It’s almost like I feel a certain sameness with them, like I want to bond with them over this horrible disease that is hurting my baby sister…knowing they are going through the same thing as you in one degree or another.
Love you, Jen. I know it’s been rough on you and I hate it. I pray that this portion of chemo doesn’t affect you as much. xxoo
I can’t wait for 2014! IT WILL DEFINITELY BE A BETTER YEAR! I pray for better reactions to the chemo and meds. I’m so grateful that this next round of chemo is less severe. I’m so glad you were a kind ear for that man in the store. May God bless and comfort him. I also pray you can feel His presence and His strength during the ‘fog’