#5 – So Far So Good

I had my fifth chemo treatment today. So far, so good. I am done with the two drugs Adriamycin and Cytoxin that were in my first 4 treatments, now I will just have Taxol for these last 4.

So far, I do not have the head fuzziness or weakness like I did from the other drugs. That’s a good sign. Tim and I took a walk tonight- almost a mile. I am still hungry and moving around well. But it’s only Day 1. The worst usually hits sometime at the end of Day 2 and lasts for several days to a week. So, we’ll see soon enough.

The first two drugs I had have a high frequency of emesis (nausea and vomiting)  of >90%. Taxol has a low frequency of emesis of 10-30%. If it works out that way for me it will be a very welcome relief from the sickness. Like the other drugs though, Taxol will continue to kill off my blood cell components, making me weaker as each treatment progresses.

The additional sife effects of Taxol include bone and joint pain, and neurological effects, such as tingling and loss of function in hands and feet. If that happens- the loss of function, or even severe tingling- I am supposed to call the doctor immediately. They will then postpone my next treatment until I have recovered and will give me a smaller dose next time. I am hopeful I do not have these more serious issues.

In the meantime, Chris told me the other day that ‘he knew I was really sick but he sure wished I could come into his room and tell them goodnight again’. So that night, I made the extra effort to go in there, tired and weakness notwithstanding. The smiles on Chris’s and Andy’s faces as they hugged and kissed me was worth all the effort for sure. I’ve gone in there and into Reagan’s room every night since. Maybe the stair climbing is helping my strength as well 🙂

My 5th treatment actually started yesterday afternoon with my normal blood tests and check by the doctor. Blood tests were ok- even with my lower than normal white and blood cell counts, neutrophils and platelets, they weren’t low enough to delay today’s chemo treatment. The cancer has shrunk down to about 3 cm by 1.5 cm. For those who have read ealier posts, you will know it is now less than a quarter of the size it was at diagnosis (5.5cm by 4.5 cm). This is a big relief and each time I am checked, I am told this is a really good response. Yay!

Reagan caught a baby perch in Grandpa's front yard!

Reagan caught a baby perch in Grandpa’s front yard!

We spent last weekend up north at my father-in-law’s (south of the  Mackinac Bridge). It was the first trip we’ve taken since I started chemo. It was Reagan’s 8th birthday wish- to spend it with her Grandpa. It was over a week since my previous chemo so I figured I would be feeling well enough for the trip. I was for the most part. The first two days, I was still feeling a bit bad, but after that, other than my usual fatigue and weakness, I was feeling good. I even went to church for the first time in a while- since my father-in-law’s church does outside mass on nice days.

Chris and Andy swimming in Lake Huron by the Mackinac Bridge.

I’ve been told by my oncologist that I should avoid places where I am in close quarters to a lot of other people – to avoid the germs. Thus why I have been missing mass- all the handshaking and close quarters is worrisome (plus sitting that long on a wooden pew is almost impossibly painful for me right now), and why I missed my nephew’s open house and my new cousins’ baby shower 😦 And I never know how I’m going to feel after a treatment.

Thanks to all of you for checking on me and praying for me. I apologize for the long wait between posts- I was just too sick to think what to write, then gone on the trip. I also wanted to mention that I saw Carmella (see the-people-of-chemo-part-1) today. She was looking good, so your prayers are working. Thank you.

The People of Chemo – Part 1

Today in the waiting room I met Mary. She looked at my tan arms and asked where I got my sun from. When I told her I lived in the country, she explained she was in a little apartment with her cats and that she only got the sun in her windows for about 15 minutes a day. Then she told me she was here for an iron infusion, “not that stuff you’re getting”.

“The poison?” I asked.

She laughed and nodded. “I’ve already been through that,” she told me. “Pretty soon they’re gonna tell me I have to do it again, and I’m going to tell them no.”

I asked her if it was too much for her and she said she had cancer in her bone marrow and she said it wasn’t worth it to be so sick when it wasn’t curable. The chemo kills her white blood cells and since the cancer is in her bone marrow, where the blood cells grow, she said her blood cells wouldn’t grow back.

“I’ve made my peace with God, so I’m okay with it,” she said with a smile. I told her that my mother-in-law had done the same. Mary had a very similar personality to my mother-in-law as well — very strong and beautiful – and even looked a bit like her. God bless both of these strong women!

Carmella is another lady that I see if I have my chemo on a Wednesday. How to describe her?  She’s loud. She seems a bit self-involved. One day she sat in the infusion chair next to mine and I had a terrible headache. She talked very loudly to the nurses. She fiddled with her car keys. And these weren’t any normal car keys. It was a big long lanyard that had various large keys, a couple of big charms, and even a small picture frame clipped to it. Large and loud!

She sat and fiddled and jiggled and jangled that key chain until I thought my head was going to explode. Then she dropped it in between the cracks of her chair. Our chairs are only a few feet away from each other. She pushed the foot rest back down with a big squeak, then jumped down from the chair (she’s too short to reach the floor easily) and bent over with her butt in my face as she dug around in the crack of the chair. She caught hold of the lanyard and she yanked and jiggled and pulled, her butt flailing at me as she moved back and forth. The keys banged against the chair, and against the picture frame and against the charms.

Finally the lanyard came out, but everything else got left behind in the chair. So the nurse came over to help her. As she was digging around in the crack, Carmella started pushing the foot rest up and down to “help”. The nurse yelped and told her to please not move the foot rest while her arm was in there. It took a few minutes, but she got all the pieces out and gave them to Carmella to reassemble her monstrous keychain.

Carmella hopped back up in her chair and sque-e-e-eaked the foot rest back in place, then adjusted, re-adjusted, grunted, groaned and wiggled until she was comfortable. Each chair has a little t.v. on an extended arm, and she had moved it over to about a foot from her face but facing me, and had the volume on loud, which fit her personality as I’ve already said. My head was just banging and I had to close my eyes to shut out the sights and sounds.

She told the nurses that her port was infected again and so they called for the doctor to come in and check it. Some people who are getting chemo get a port surgically implanted into their skin, near their collarbone (I have good big veins so I had a choice not to have a port). She described in great detail to them about how it had some pus leaking out around it and how it smelled rotten. I was nearly gagging from the thought of it and from my migraine. 😦

The doctor finally came in and pulled the curtain around Carmella’s chair to examine her. I was so grateful for the respite from watching and hearing her wiggle and the sound of the t.v.  But it only lasted a few minutes because when the doctor was done, Carmella pulled the curtain wide open again and turned her t.v. back up.

I was so uncomfortable and so annoyed. But then as I sat there with my eyes closed, I began to listen.

“Carmella, what’s wrong?” asked one of the nurses.

“I left my phone at home. I never do that. I don’t know what to do. The taxi is supposed to pick me up at 2, but it looks like I’ll be done early. I guess I can just sit around and wait for them to come back.”

It turns out, Carmella lives alone. She doesn’t have a car and has to rely on public transportation. She has no one who can bring her here. She has no one at home waiting for her to get done with her treatment so that they can get her water, and help her eat crackers, and help her lay down on the couch and cover her up when she feels so sick. No one to ask her if she’s okay, or if she needs anything. No one to make certain she is taking her anti-nausea medicine and drinking enough water. No one.

The nurses here are very caring. They made a phone call to the taxi to make certain that the taxi would be here waiting when Carmella was done with her treatment. They care. It made me think long and hard about my attitude.

Now, I say prayers for Carmella (Please – if you say prayers for me, say them for Carmella* as well). When I see her I am glad to see that she’s doing okay. I remember how good I have it, with my family and my friends, and my health insurance, and enough finances to own my own car.

It made me realize that Carmella was not the self-involved person. I was. And as for loud? Make all the noise you can in life – while you can – because you just never know. Just ask Mary.

__________

* I did not use her real name, but if you say prayers for her- you can use the name Carmella – God will know exactly who you are talking about. 🙂

How are you feeling?

So, I hear the following things a lot. I love my family and friends, and all of your incredible support. Here is what I usually say, and then here is what goes on inside my head.

How are you feeling?

-I’m okay, thanks! (Actually I feel like absolute hell. It’s all I can do to keep my eyes open right now, and I gagged from nausea half the drive to work. I choked down some crackers to keep my stomach from being empty, but my mouth is so dry from the chemo that I then had to choke down some water to get it to go down my throat. When I move, my chest constricts and it makes me more nauseous. It’ll get better in about a week, then it’ll come back in full force after the next treatment. The doctor says it is chemo-induced tachycardia. Basically abnormally high heart rate due to the Anthracycline med I am currently receiving. I’m hopeful it will go away permanently after I complete my last treatment, but chemo can cause permanent damage for some people.)

You look really good!

– Aw, thanks. (I saw myself in the mirror this morning- my eyes are sunk in from exhaustion because my body hurt so bad last night I could barely sleep, I’ve gotten a lot of little dark spots on my skin from the meds that make my skin more sensitive to the sun, and the dehydration is making my skin look like leather. Old worn out leather. I have bruises all over my body from the slightest little bumps. I even have bruises on my elbow from resting on them when I am at my desk 😦 Oh, and I feel like hell.)

I like your head cover!

– Aw, thanks! (My head itches under this fricking thing, but I don’t dare take it off because the scrappy bits of hair that are left are creepy and my head is white from never being exposed to the sun. And I don’t dare go without sunscreen when I’m outside at home because I don’t think I can take anymore pain on my scalp if I end up with a sunburn. My ears hurt from where the bandana is tied around my head, and at the end of the day, my scalp hurts from having the little bits of hair that are left being scrunched underneath it. Everyone looks at the bandana. Some stare. It’s the universal sign that means “cancer here”, I think. )

You look like you’re losing weight!

– Yeah, a little. (I’ve actually lost 12 pounds so far, but it goes up and down a couple pounds each week as I get so sick I can hardly eat for a few days, and dehydrate from not being able to even choke down enough water, then I rebound by a few pounds a few days before my next chemo. Then the cycle starts all over and I lose 5 or more pounds the next week. It goes down farther with each treatment. I would have loved to have lost weight back when I was running 2-4 miles a day and eating healthy and eating less – you know back when I didn’t lose any weight at all?! And then when I had to stop running for a few months because of my asthma and hip problems and I gained 6 pounds more than I weighed when I started running again? Yeah, it would have been really nice to lose weight back then when I was doing things the right way. To lose it now means that the doctor tells me to be careful not to lose too much because my body can’t fight back as well, and last time my white blood cell count was low, which could mean that I may have to delay treatment if it gets too bad. Also, losing weight from feeling like you’re so sick you’re dying- not a big feeling of accomplishment. 😦 )

You’re smiling, that’s good to see!

– Yeah, I’m doing my best to stay positive. (I lay awake at nights a lot. Praying that God will at least spare me for my kids- I can’t imagine what life would be like for them and Tim if I don’t survive this. I have to remind myself that I have a very good chance of being cured. But… What if it comes back? What if I go through all this misery and the surgery and all that, and a few years down the line when I think I have my life back, it comes back? Will I ever be free of this worry? Will my family be ok financially? Emotionally? What if I never see my babies grow up? I usually cry for a bit then remind myself of all the people I know who have survived this. Then I think of the people I know who didn’t, and my heart pounds and I flip and flop for a while. Then I quickly go back to those people who DID survive, and I eventually fall back asleep amid reminders that I really need to document a whole lot of things about insurance policies, and retirement accounts, and bills that I pay each month… just in case. But, yeah, I try to keep a smile on my face when I’m feeling well enough because life’s too short not to, you know?)

You’re so strong and brave!

-Thanks! I have to be. (Really. Literally. I have. no. choice. I didn’t just decide one day that I would be brave or strong. It’s just that there’s no other way I can be. This is my life now. I’m just trying to really hang on to it.)

Did you see what I posted on Facebook?

-Not sure, which post? I’ve been pretty busy. (Actually, not only have I been pretty busy trying not to vomit and fall asleep from exhaustion while sitting up, what is important in life has completely changed once I was diagnosed with cancer. Oh, that and I really hate most of the self-inflicted drama on Facebook. If you posted a cute picture of your kids, I probably saw it, but may not have felt well enough to comment on it. I may have missed a few birthdays (Sorry, Kim Kellogg!). But if it was some post about “if my friends really care about me they’ll repost this” or some meme that says something about “someday you’ll realize it’s best to get rid of the toxic people in your life” then no, I probably skipped over it. I don’t allow toxic people in my life {if they do somehow enter it, they aren’t allowed to stay long}. Heck, I may even be the toxic person in someone else’s life – who knows?. I also don’t intend to waste any of my time answering some public cry for attention to pass someone’s test of the strength of my friendship with them. Again, life’s way too short. On my side of things, the amount of energy that people spend with false drama, and overplayed emotion like “oh my gosh! I can’t believe she didn’t like the photo of my daughter getting her award. I’m gonna have it out with her and unfriend her!” is really sad to me. Really? Did it ever occur to you that most people have a real life and don’t spend all day everyday on Facebook waiting for your posts? Seriously. If someone missed something you posted to your 400+ friends (as opposed to a private email just to that person – you know, where you went out of your way to contact that one person and make them feel like they are important to you?) don’t take it personally. And don’t act like it is some big deal. Having cancer is a big deal. Not some damn comment someone did or didn’t make on Facebook. Get real.)

Okay- so now you know what I am thinking, please forgive me for being blunt, but cancer does change your life significantly. I do want to thank each and everyone of you for asking me how I’m doing, telling me I look good, showing true happiness that I am smiling, etc. It is your support and your reaching out to me that is keeping me buoyed.

Three down, five to go

What is it about fire that draws people? Last night, we were sitting around a campfire in the backyard while the kids swam. The fire was mesmerizing – the heat, the smoke, the crackling, but most especially the smell of burning wood. I’ve always loved it.

When I was a kid, we had an indoor wood burner. My dad always had it burning in the winter, along with a beautiful fire in the fireplace on a cold winter night. Sunday night after our bath, we were allowed to come out into the living room in our oversized towels and warm up on the red circular rug in front of the fire. I never wanted to leave. And as we played outside on a freezing winter day, the wood smoke floating out from the chimney filled the air and our noses and reminded me that when I went inside there would glorious heat for my wet frozen feet and red, numbed fingers and hands.

I had my 3rd chemo treatment on Wednesday. I prepared this time by drinking as much water as I could choke down every day, and ate lots of protein (when I could eat). It seemed to help. Yesterday was my worst day- basically you feel poisoned. As my friend Kathy pointed out today (when she brought my family an incredibly delicious lunch of lasagna, veggies, garlic bread, and home canned peaches!) – “you kind of have been poisoned”. True. The chemo really is poison. It kills all fast growing cells. The cancer cells can’t recover from it, but the healthy cells can. It just takes a while.

The blessing this time was that I never felt so nauseous that I couldn’t choke down some water or food, or not be able to move (I was really sick for about 5 days after my 2nd treatment 😦 ). The worst is still the incredible weakness, and the pain. I get sore on about the 2nd/3rd day from my head, face, neck, shoulders, on down to about the middle of my back. It feels like you’ve been beat up. Your skin hurts, your muscles hurt. My neck and jaw area feel swollen and it even hurts to open my mouth. Still much better than the nausea I had last time! It has subsided some today, thankfully. Hoping it will be mostly gone by tomorrow.

The funny thing is that the little bits of hair left on my head is still growing. Some of the hairs are black, some are gray, and some are light brown. None of which are my natural medium brown color. 🙂 Another blessing is the scalp pain is gone (for good I hope). From about 2 weeks after my first treatment onward, I had an incredibly sensitive scalp. It was painful – similar to a sunburn. I had read it would be sensitive as the hair follicles began to be affected by the chemo meds, but it wasn’t just sensitive, it was downright painful.

As I said in an earlier post, the day after chemo, I get an injection of neulasta which helps promote blood cell regrowth. Because your blood cells grow in your bone marrow- you end up with a lot of bone pain for a few days afterward. After my 2nd treatment, with the scalp pain and the severe hip pain I could barely sleep or sit comfortably for 2 days. Supposedly taking a Claritin (loratadine), every day for the day of chemo and two days afterward, can help relieve the bone pain. They don’t know for sure how it helps, but it works for many people. I was too nauseous after my 2nd treatment to be brave enough to try to swallow anything extra, but I did take it this time, and it really helped. I was grateful for that bit of pain relief!

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Today, we spent a lot of time in the pool (the kids and Tim) and the hottub (me and whoever got too cold in the pool), then Tim grilled some hotdogs for a good old fashioned 4th of July summer dinner. Next are the fireworks in the yard – I love living in the country. 🙂 It’s been a beautiful day.