Keep Calm and Chemo On

It has been three weeks since my first chemotherapy infusion and I'm going for my second in the morning. I've been feeling pretty good this past week, almost normal.

I didn't start feeling bad until about three days after my first treatment, but right from the beginning I felt very odd, just strange and surreal. If you've seen the Lord of the Rings movies, picture the scenes where Frodo has the ring on his finger. That's the visual that comes to mind when I think of how I felt  for about the first week to ten days: like I was not quite in the real world, not quite in the land of the living. It was a struggle to focus my mind or my eyes. I heard roaring and ringing in my ears and they pulsed and throbbed. After a few days I felt random sharp, stabbing  pains in my head, jaw, throat, ears, back, pelvis, legs. 

I had an awful taste in my mouth and foods and beverages tasted odd. I've been a coffee drinker for over forty years and love a good, strong cup of freshly brewed coffee. Now, I can hardly taste coffee and the taste that does come through is off somehow. I did experience some nausea, but the anti-nausea medication they gave me with the chemo seemed to keep it in check. Of course there was fatigue, which didn't become debilitating, but I've been told to expect that to get worse with successive treatments. I had stomachaches and GI symptoms I won't go into detail about.

But after about the first ten days, I began to feel progressively better. It's good to know that this won't be four months of solid misery. I'm very thankful that so far I've been able to work and go out with Rick and the dogs for our daily walks.

About two weeks after the first treatment, my hair slowly started coming out, so Rick buzzed my head for me, but I still have a lot of stubble that hasn't fallen out yet. I wear hats or "buffs" except when I sleep now.

I've learned that there are scores of different chemotherapy drugs and regimens geared to different types of cancers and patients. The side effects and experiences can vary widely. I am being treated with two drugs: Cytoxan and Taxotere. I will have six treatments at three week intervals. The drugs are administered one at a time by IV into the port that was placed under the skin beneath the left side of my collarbone. Each treatment takes about three hours.

Just before I began chemo, we got the results of a blood test my oncologist had ordered that showed that I would have trouble metabolizing the drug, Tamoxifen. Taking Tamoxifen for five years was going to be an important part of my treatment plan to help prevent recurrence of my cancer. My tumor was strongly estrogen receptor positive and Tamoxifen is very effective in preventing recurrence of this type of tumor for most women. There is another class of drug I may be able to take instead, but we decided to table that decision until after I've completed chemo and radiation.

For now, knowing that Tamoxifen has been removed from my arsenal of anti-cancer weapons, it seems even more important to persevere through my chemo treatments. I'm confident that I can, with God's help and with the support of my wonderful husband, family and friends.

My First Week in the Chemo Zone

Watching a movie during my first chemo infusion

It's been one week since my first chemo infusion and I know this isn't going to be my brightest and best blog post. It may be a long time before I feel mentally sharp again. There is such a thing as "chemo brain" which is nothing to joke about. It's truly scary and I don't have it, but still, I am always aware that my thinking and communication skills are not up to par.

There are so many odd things about this experience and so many things I want to avoid in talking/writing/blogging about it. I don't want to descend into negativity and self absorption. This is simply not going to be an easy time in my life. Physically I am probably not going to feel good again for a few months. But still I know I have so much to be thankful for and choosing to remember and focus on those things is key to my well being. For example, they have very good anti-nausea medications now, and I haven't experienced debilitating nausea. And I am blessed to have a husband who is helping me with anything and everything he can.

The view from where I sat

I am in an almost ideal situation as far as my work is concerned. I am able to work from home while I am on chemo and I work a split shift which allows me to nap between segments of my shift. I don't think I'd be able to work much at all if I had to get dressed up, drive to work and work eight or more hours straight. Thankfully, my intermittent FMLA was approved without all the problems I had last time, which means my absences will be job protected. 

Working is a mixed blessing. It gives me much needed distractions from sitting around focusing on my symptoms and side effects. I've read that people who are able to work during chemo suffer less depression than those who don't. Still, working is very difficult. My job requires me to be mentally focused and pay attention to details, while talking on the phone to people who may be difficult and demanding. I can't make excuses for myself or tell them anything other than "I'm fine" if they ask, although I am always dealing with some pain, discomfort and/or digestive upset.

I do have some paid sick leave accumulated and at the start of the year I would have thought I had far more than I'd ever need. Now after two surgeries, multiple doctor's appointments and my first chemo treatment, I have about 123 hours or a little over three weeks paid sick leave left. If I am able to endure six infusions three weeks apart as planned, it will be over eighteen weeks before I'm through with chemo. If I deplete my sick leave, I'd then have to use up my vacation time, and any additional time off would be unpaid. That is the main reason I'm trying to work as much as I can now and save my paid sick leave for when I really need it later. So I missed 4 hours the day of my chemo infusion last week and haven't missed any work since. 

A sunset viewed from a hill in our neighborhood

Rick has been good about encouraging, but not nagging, me to get outside after work and walk with him and the dogs. Even though I often don't feel like it when we leave the house, I am always glad I did. The exercise and fresh air do me so much good and we are enjoying beautiful weather. 

I was able to go to church last Sunday, and that also did me a world of good. It was wonderful to see so many loving caring friends. I was especially motivated to go because we were going to have visiting musicians leading worship and I remembered them well from the last time they came. The music of Amy Shreve and her husband, Gary, was like medicine to my soul and chatting with Amy after the service was delightful.

In the words of Horatio G. Spafford's beloved hymn, which Amy sang so beautifully, "Even so, it is well with my soul."

Countdown to Chemo

"Soft Hats" from Just in Time, Inc.

So what do you do when you find out or decide that you will be having chemotherapy? I'm sure that varies from one woman to the next and it also has a lot to do with how much time you have before treatment begins.

You know you will probably lose all you hair including eyebrows and lashes. So here's what I did about that.

I had my sweet hairdresser cut my hair short to help ease the transition.

I made an appointment with a lady who has been doing "permanent cosmetics" for over sixteen years and had her tattoo eyebrows for me. She turned out to be a lovely person who shares my faith in Jesus and who lost a sister to breast cancer, so we had a lot to talk about. After I knew I was satisfied with the eyebrows and still had enough time before chemo to heal from another procedure, I went back and had her do upper eyeliner also.

I thought for about five minutes about getting a wig. Nah.

I looked for hats and head coverings online. I have never been into scarves much and am not good at tying them. I ordered some hats from http://www.softhats.com/collection/spring-summer and I will probably order a few more from https://www.headcovers.com/   I ordered some "buffs" from http://www.planetbuff.com/newest-buff-collection/2013-spring-collection.html  yes, like they wear on "Survivor", although I've never seen even one episode of the show. My talented daughter, Erika, got right to work knitting me a cap that I can't wait to receive in the mail from Iowa.

OK, so that takes care of the vanity aspect.

I filed a new claim for intermittent FMLA so my absences from work will be "job protected" and I called Aetna back  to deal with the two mistakes they've made so far on this one. I counted up my days of accrued paid sick leave and pray I won't exhaust them and have to deplete my accrued vacation and then take unpaid time off.

I went to the dentist to get my teeth cleaned earlier than scheduled.

I picked the brains of friends who'd had chemo and I found a thread on www.breastcancer.org for women who are being treated with the same two chemo drugs I am. My friend, Susan, even lent me her notebook she kept during chemo where she recorded questions and answers from her oncologist, her symptoms, her pre-chemo shopping list, and lots of other helpful information.

Armed with my own list, I went shopping. I have ginger capsules for nausea, Claritin and ibuprofen to counteract the bone pain caused by the Neulasta shot I'll need after each chemo treatment, and L-Glutamine to try to minimize neuropathy, which if it affects my hands, could make it very hard for me to work. I have special toothpaste and mouthwash and extra soft toothbrushes, cream for dry skin, heavy duty sunscreen, antibiotic ointment, hand sanitizer, cortisone cream...etc...Trust me, you don't want to know it all.

I experimented with recipes for smoothies and pureed bean and vegetable soups so that when it's hard to eat and I only want comfort food, I might at least manage to eat something nutritious.

I bought a bottle of my favorite chardonnay and made it last three evenings.

I had a delicious and delightful lunch at a Thai restaurant with ten of my closest friends.

And when I was down to under 48 hours, my husband took me out for Tex-Mex, which I love, but don't expect to be able to stomach again for awhile.

Now that I'm down to 24 hours, I'll be drinking lots of water, so I'll go in hydrated, and my dad is taking me out for lunch.

My sweet husband loaded one of my favorite fun movies, That Thing You Do, onto his laptop so I can hopefully watch it during my chemo infusion. If you've never seen it, you really should - makes me smile just thinking about it.

"Thankful To..."

This will be the easiest blog post I've written so far, since it's mostly just copy and paste. I have been finding a lot of great info and moral support on the discussion boards at www.breastcancer.org

There are great threads like one for women who will be treated with the same combination of chemo drugs I'll be receiving and who are starting within a few weeks of each other, one for women in my age group, etc. 

Last night I was excited to find a thread entitled simply "Gratitude," where women post what they are grateful for. Remembering my many blessings is like medicine for my soul, so I enthusiastically typed out a post on this thread. I expect to be posting there often.

I tend to use the word "thankful", because it reminds me not only to feel thankful, but also to give thanks to God, the Giver of every good gift. Giving thanks is easier than giving "grates." :) 

As my pastor said in a sermon years ago, it's important to know not just what we're thankful for, but Who we're thankful to.

So, here, copied and pasted, is what I posted on the discussion board last night:

I thank God:

for my salvation in Jesus! My Redeemer lives!

that I saw my three children grow up, got to know and love five grandchildren, enjoyed 40 years of happy marriage and 57 years of good health BEFORE breast cancer

that my marriage is still happy and my husband is walking through this with me

for my 2 loving daughters, their awesome husbands, and my sympathetic son

for my beautiful grandchildren

for my dear widowed father

for wonderful memories of my loving mother and the anticipation of seeing her again

for my fun furry friends: 3 dogs and a cat

for my loving, praying church

for my amazing friends

for my job and ability to work from home most days

for my health insurance

for my comfortable home

for my faith and His grace!

C is for Chemo

I told Rick the other day that anticipating chemo makes me feel like I have cancer with a capital C. But the truth is that I really don't.  I had a choice and I chose to have chemo. My surgeon thought I might need chemo and my oncologist thought I definitely needed it, but the choice was mine to make. At Stage 2, Grade 2, with a 3.3 cm. tumor and an Oncotype DX number of 21, the decision was not a slam dunk, but I believe it's the smart decision. I hope to remember that when I want to complain over the next few months. Oh, I'm sure I'll do plenty of complaining, but I have a lot of reasons not to.

A lot of people who have chemo have a much worse prognosis than I do, like an inoperable tumor, or cancer in their blood or bones. For them chemo may be the only treatment available to fight an aggressive cancer and a bleak prognosis. 

My chemo will be preventive. For all I know there may be no cancer left in my body at all. There was none detected in the margins after my surgery and none in my lymph nodes. I am having chemo just in case there are cancer cells that might have spread to other parts of my body in my blood stream. I am having chemo to make a good prognosis better. 

When I want to feel sorry for myself, I hope I remember that children go through chemo and their parents suffer through it with them. My friend, Laurel, would gladly go through chemo for her little granddaughter if she could.

My friend, Kim, would gladly have gone through chemo in her little boy's place; she would gladly have taken his cancer on herself if she could have. Now she cherishes his memory and the anticipation of being reunited with him in Heaven. 

Someday I will die of something and when I do I believe that I'll pass into a far better reality with my Lord and Savior than I've ever known here. I don't fear that. I have already lived to see my three children grow up and to know and love five grandchildren. I have enjoyed over forty years of happy marriage with the love of my life. If I die tomorrow, I would have lived a very blessed life on this earth. 

But of course, I'd like to stick around awhile. I'd like to outlive my dad and I know he'd like that too. I'd like to grow old(er) with my husband and see all our grandchildren grow up. 

I believe God heals in many ways and often He does it through medical science. Improving my already good prognosis through chemotherapy seems like the smart thing to do and so I choose to do it. 

Tomorrow morning I'll have outpatient surgery to have my Mediport put in place and next week I'll have my first treatment.