Getting My Life (and My Hair) Back

Since my last post two months ago, I've:

thankfully celebrated another Father's Day with my dad,

sadly watched the NBA finals as the championship eluded the San Antonio Spurs,

finished 25 radiation treatments, which marked the end of my "active" treatment for breast cancer,

started a medication I'll take for five years to help prevent recurrence of my cancer,

celebrated my 58th birthday and my granddaughter, Abby's 17th,

while enjoying a visit with her and her mom and sisters,

My oldest daughter, Kelly & I

Good times with Kelly's daughters, Emma, Grace & Abby

and had a wonderful time with my youngest daughter and her family who came to visit from Iowa.

Rick & I with Erika & her daughter, Lucy.

Erika's husband, Darin, our sleepy grandson, Collin & our son, Paul

Lucy & Collin, who are expecting a new baby sister in October

I've also gone back to the gym, started eating healthier and working on getting back to a healthy weight.

My year began with my diagnosis on January 2nd and the first half of 2013 revolved around breast cancer treatment, from surgery to chemotherapy to radiation to medication. The day I finished radiation treatments I felt like I got my life back and it was an amazing feeling.

I'm so thankful to my Lord and Savior for seeing me through and to my loving family and friends for their support and encouragement. I'm counting my blessings these days and feel like I could go on counting, as my grandson, Collin (and Buzz Lightyear) would say, "To infinity and beyond!"

Between Chemo and Radiation

It's been five weeks since my last chemo treatment and I've had two weeks worth of daily (5 days a week) radiation treatments, with three more weeks to go. It's been so good to gradually leave the side effects of chemo behind. I still have a nagging cough and low energy and my hair has a lot of growing to do, but I feel much better than I did.

Since I finished chemo:

...we enjoyed a visit from our niece, Natalie, and her husband, Scott, from Nebraska.We had last seen them when we went for their wedding last fall. Scott had just graduated from college before they came here.

...and an all too brief visit with our dear friend, Lori, who's more like family, and her children. They've been living in Virginia for the last two years and are headed to England where Lori's husband will have his next tour of duty with the Air Force. I wish we could have seen him too, but he had to stay in Virginia.

Our oldest granddaughter got a clear pathology report after her third surgery and has recovered well, for which we are so very thankful.

We learned that our eagerly anticipated sixth grandchild is a granddaughter too and we can't wait to go to Iowa meet her in the fall.

Our San Antonio Spurs won the Western Conference and are in the NBA Finals.

I had outpatient surgery to have my mediport removed. It served me well while I needed it during chemo, but I'm glad to be rid of it.

My medical oncologist referred me to a radiation oncologist and Rick went with me for my initial consultation. We both liked him a lot. He was friendly and compassionate and has been treating cancer patients for a long time. Rick thinks he looks a lot like his brother, Steve, and after he mentioned it, I could see the resemblance too.

I went for a CT scan and got tattooed and marked up with markers. Then the doctor worked up my treatment plan and I went to the treatment center for a sort of dry run called a "validation" or "simulation" before starting radiation treatments.

I may have some radiation burns before this is over, but I've had ten treatments now and so far, so far good. The treatment center provided some skin cream, which I'm using faithfully along with aloe vera gel.

I'll have 25 radiation treatments and possibly a few more called "boosts" after that. Fatigue is a possible side effect, but I won't be rid of the chemo-induced fatigue for awhile anyway, so I don't know if I'd notice a little more. I'm still working full time and driving an hour round trip five days a week for my treatments, plus staying up late to watch the Spurs in the NBA finals on game nights. I don't know how I could be anything but fatigued, but life is still good and God had given me much to be thankful for.

There are worse things than fatigue, like cancer for instance.

Hair Today, Gone Tomorrow

Talk about chemotherapy with any woman and the first question that comes up is about hair loss. Not all chemo drugs cause hair loss, but as of now, 100% of the chemo drugs used to treat breast cancer do.

Taxotere, one of the two drugs I was treated with, causes permanent hair loss in 3-6% of patients (supposedly it's closer to 6% when used in combination with Cytoxan, as in my case.) It has earned the  nickname "Taxotears."

Some women use a product called Penguin Cold Caps to prevent or lessen hair loss during chemo and it's supposed to work pretty well, but it was out of my budget. For someone undergoing chemo before a big life event like a family wedding, the expense might be well worth it. I never saw anyone using the cold caps at my treatment center.

In preparation for losing my hair, I went to my hairdresser and asked her to cut it as short as she could while still maintaining some style and femininity. She wouldn't let me pay for the cut, which I loved, but wasn't able to enjoy for long.

I had read on the discussion boards that with my chemo regimen, hair loss starts on average about 14 days after the first treatment and that was pretty accurate in my case. When small amounts of hair begin falling out, I just wanted to be done with it and asked Rick to use his hair clippers to buzz it down to stubble. A few people had told me I should have fun with it and buzz it into a mohawk or spike it first. Nobody who told me that has actually gone through this firsthand and I figured that when and if they do, they can "have fun with it" if they want to.

I'd also heard that some women are overcome with emotion and cry a lot when they lose their hair during chemo. Although I didn't have fun with the experience, I wasn't emotionally undone by it either. Rick and I had a few wry laughs and we both teared up a bit as he buzzed my hair off and we swept it up from the floor.

I never seriously considered getting a wig. I didn't think I'd feel comfortable wearing one and everyone in my life would know it wasn't my real hair anyway. Besides, what if I found a really cute wig and didn't like my own hair as much after it grew back? That would just be sad.

I learned that I wasn't going to be able to wear just any cute hat I happened to like. Hats not designed specifically to cover hair loss don't usually give full coverage of the hairline. I also learned that I have a fairly big head when I had to return a couple hats I ordered online that turned out to be too tight.

I had good luck with hats from "Just in Time" Soft Hats

and "buffs" from planetbuff.com although I've never watched "Survivor."

 It helped to have a daughter who knits

and a sweet, generous friend who shops.

At first I didn't like Rick to see me with my head uncovered and I wore something on my head all the time at home. After awhile I became less self conscious and as the weather got warmer, I was just more comfortable going "topless" at home. My head never became completely smooth and shiny-bald, although my poor pink scalp was and is still visible under the thin white stubble.

After my first chemo treatment, I got to thinking about those Penguin Cold Caps and the big frozen gel mitts and boots I wore during the Taxotere infusion to try to prevent nerve damage to my hands and feet. The idea behind all three was that the cold would cause the blood vessels to constrict and reduce the amount of the chemo drug that would flow to that area. My hair was already gone, but I thought, "What if I could reduce the risk of permanent hair loss by cooling my scalp myself somehow?" I knew I couldn't come up with anything nearly as effective as the cold caps, but I've always said that "something is better than nothing," and I figured that it couldn't hurt to try "something."

So before my next three treatments, I soaked and froze all five of the "Turbie Twists" I already owned. I have them in pink, purple, green and white and I took them all frozen in plastic bags in a small ice chest to the treatment center. After the Cytoxan was run into my veins and before the nurse started the Taxotere, Rick handed me one of the frozen terry cloth hair turbans, which had just thawed enough that I could arrange it on my head and fasten it. I covered it with a puffy pink shower cap, put a towel around my shoulders to catch the drips, and had Rick set the timer on his phone. Each time the timer went off, my long-suffering husband took out another frozen Turbie Twist for me, put away the thawed one, and reset his timer. I'm sure I looked ridiculous and the nurses seemed pretty amused. I have no idea if this really accomplished anything, but it made me feel like I was doing something and it didn't cost me a dime.

Now I am four weeks past my last chemo treatment and the pathetic looking white stubble is slowly starting to fill in. I'm trying to help it along by using CVS drugstore's brand of topical minoxidil (Rogaine) for women. I bought a one month supply after reading that most oncologists considered it safe even if they couldn't say for certain that it worked. I also bought a two month supply of over-the-counter biotin supplements for the same reason. There is only anecdotal evidence that it helps hair growth, but it shouldn't do any harm. It's also supposed to be good for the skin and if so, it might help during radiation treatments.

I hope that by the time I go to meet my newborn granddaughter in Iowa in October I'll have at least as much hair as she does.

And the Award for Best Husband in a Supporting Role Goes to...

"For better or for worse, in sickness and in health..." That was forty-one years ago. In those early days I didn't like him to see me without make-up. Now he knows what I look like without make-up or HAIR and from what I can tell, it hasn't diminished his love for me a bit.
 

Two clueless kids blessed on our way in 1972

"Dear, will you pose with me while I still have hair?" 2013

I am incredibly blessed and so very thankful to have had the love and support of my amazing husband throughout this breast cancer experience as I've gone through surgery and chemotherapy.  I know I can count on him to see me through radiation treatments and five years worth of "anti-hormone" therapy, which could turn out to be the most challenging experience yet.

He has done more cooking, cleaning, laundry and grocery shopping in the last few months than he's ever done in his life, and he's done it well and without complaining. During chemo, while I've been vulnerable to infection and illness due to low white blood cells, he's taken sole responsibility for tasks like cleaning the cat's litter box.

Yep, he cleans up after my faithful feline companion too.

He's been gracious as attention has been showered on me from friends and extended family while he quietly kept my world running as smoothly as possible. He used his hair clippers to buzz my thinning hair down to stubble when I asked him to and I think he was more emotional about that than I was. He has patiently humored me as I've asked him to take pictures of me for this blog and then asked him to retake them until my vanity was satisfied.

He's accompanied me to each doctor's appointment where there was an expectation of learning new information or having to make a decision. He made sure that during each chemo treatment I could watch a fun, lighthearted movie of my choice as a distraction while the dreaded stuff flowed into my veins. He was my hands when my own hands were stuck inside large clumsy frozen gel mitts.

Catching up on his work, while I watch a movie during a chemo infusion

He has consistently, but patiently encouraged me to go out for a daily walk with him and the dogs, sometimes walking all three dogs himself, while I tagged along slowly, feeling too weak to handle even one of them.

 They adore him almost as much as I do, even when he isn't doling out treats.

As I've gone through chemotherapy and worked full-time through most of it, a lot of you have told me, "I don't know how you do it." 

Well, now you know.

Tips I Hope You Never Need and I Never Need Again

I am thankful that my experience with chemotherapy was much better than it might have been and I attribute that to the grace of God in answering the many prayers made on my behalf by people I know and love.

There were also some practical things I did that may have helped and I want to record those here while I remember them, in case the information might help anyone else someday or if I ever need it again myself.

I had read some advice from an experienced chemo patient on www.breastcancer.org to try to get outdoors and walk each day. That was already part of Rick's and my daily routine with our three dogs and the four of them motivated and encouraged me to keep it up. If I had been on my own, I probably would have concluded that I was just too tired and weak to get out the front door most days. Some days, that's all I decided to do, get out the door, with the idea that I could turn around and come home if I needed to, although I never did. On the hard days, Rick held all the leashes when I felt I was no match for even one dog's energy level. But on most days, I managed to walk my loveable mutt, Gypsy, for the full hilly mile. The exercise, the fresh air, and just getting outdoors did me a world of good and improved my sense of well being.

Believe it or not these three did help Rick  motivate me to get some exercise by walking

I drank lots and lots of water, especially in the first 72 hours after each treatment, to help flush the chemo drugs out of my system and minimize the impact of the drug, Cytoxan, on my bladder.

I took ginger capsules twice a day in the first few days after each chemo treatment, to help with the mild nausea I experienced in spite of the very effective anti-nausea medication I had received by IV.

I found that my digestive system couldn't handle high fiber foods during chemo, so when I needed fiber I used "Miralax," which is pretty gentle, or a store brand knockoff.

One of the side effects of the chemo drug, Taxotere, that concerned me the most was peripheral nerve damage. If I had suffered even temporary nerve damage to my hands, it could have prevented me from working, but there was also the potential for permanent nerve damage to my hands and feet. I did everything I could to try to prevent that. During my infusions with Taxotere, I wore big frozen gel mitts on my hands and frozen gel slippers on my feet. The nurses at the treatment center kept those in the freezer for any patients that wanted to use them. I never saw anyone else use them, but I wore them for each treatment. Of course it was pretty miserable to freeze my hands and feet for ninety minutes at a time, but I think it made a difference. I never experienced much tingling or pain in my hands or feet and also didn't have any damage to my nails. The idea is that the cold constricts the blood vessels and reduces the amount of the drug that flows into those areas. There wasn't any concern that my cancer might spread to my hands or feet, so there was no medical reason not to try this.

My 3rd treatment, before putting the frozen mittens on.

I took other steps to try to prevent nerve damage, especially after I experienced miserable sharp, stabbing nerve pain from my first treatment. I took several supplements, all of which were either recommended or approved by my oncologist.

He prescribed "Metanx," a prescription form of high dose B-complex vitamins. This turned out to be very expensive, so I rationed those pills and just took them for one week after each treatment. I took over-the- counter B12 and B6 during the other two weeks of each chemo cycle.

My oncologist also recommended taking Alpha-Lopoic Acid, an antioxidant, to help prevent nerve damage.

For the first week after each treatment, I took a powdered form of L-Glutamine, 1 TBSP twice a day dissolved in juice or lemonade. L-Glutamine is an amino acid that may help prevent nerve damage and mucositis (inflammation of the mucous membranes of the digestive tract including the mouth) from chemotherapy.

I also rinsed my mouth several times a day with a solution of 1/4 tsp. baking powder and 1/4 tsp. salt dissolved in 1/2 C water for the first week after each treatment. I used Biotene brand mouthwash and toothpaste and extra-soft toothbrushes for my whole twelve weeks in the chemo zone. Thankfully I never developed any mouth sores.

I took a store brand version of the over-the-counter antihistamine, Claritin for a week after each treatment. This was to help prevent the severe bone pain that many patients suffer as a side effect of the Neulasta injection that is given the day after chemo to help stimulate the bone marrow to produce white blood cells. I don't think they know why Claritin helps with this, but the nurses at the treatment center recommended it and it is widely recommended on cancer and chemo related websites. It doesn't work for everyone and I don't know for sure if it is the reason I experienced very little bone pain, but I don't think it hurt.

My oncologist recommended taking vitamin D3 and calcium citrate during chemo and long term to help my bone density, which chemo compromises. There is evidence that vitamin D also may help prevent recurrence of breast cancer.

Women my age don't normally need supplemental iron, but chemo causes anemia, so I began taking a multivitamin with iron.

I will continue taking some of these supplements until I've recovered from the effects of the chemo and I may  take D3 and Alpha Lipoic Acid for the rest of my life.  I've been careful to get my oncologist's OK before I started taking anything I read about and I try to do my research on credible medical websites like www.breastcancer.org, www.chemocare.org, Memorial Sloan- Kettering Cancer Center, www.mayoclinic.org and others.

In Case You Ever Need to Know or I Ever Need to Remember

This post may be TMI for a lot of my readers, but while the experience of my twelve weeks in the chemo zone is fresh in my mind, I wanted to write about the answers to a question several people have asked me in one form or another: "How did chemo make you feel?"

Maybe someday my answers to this question will help someone else have some idea what to expect. It's not out of the question that I may go through chemotherapy again myself someday and may be glad I documented some of this experience.

Of course, no two patients' experiences with chemotherapy are alike. There are many chemo drugs and regimens and different people react differently to different drugs. Some side effects are common to almost all chemo drugs and others vary from one drug to the next.

Most chemotherapy involves a combination of at least two drugs. I was treated with Cytoxan and Taxotere. Cytoxan is particularly irritating to the bladder. Taxotere can cause peripheral neuropathy (nerve damage to the hands and feet that can be permanent) and is just generally hard on the nerves.

I received steroids and antihistamines by IV prior to each chemo infusion. With each treatment, the steroids kept the side effects at bay for about 48-72 hours, although from the beginning I felt odd and had the sensation that my skin was crawling. Once the steroids wore off, I felt my worst for the next two or three days. My first and last treatments hit me much harder than my second and third, but in different ways. By about two weeks after each treatment I was beginning to feel almost normal again.

So how did chemo make me feel? What were my side effects? Well, a lot of the things you hear about.

Fatigue that grew cumulatively worse with each treatment. I wanted to sleep all the time, but often had trouble sleeping at night. This was worse with my fourth treatment, which zapped my energy so completely that I spent the following weekend in bed.

Mental fogginess that made it hard to concentrate and think clearly.

Trouble focusing my eyes on small details and small print, more than I'm used to with my "over-fifty" eyes.

Ringing, roaring and pulsing in my ears.
 
A mild sore throat, irritating cough, dry mouth and heart burn.

Bladder pain, caused by Cytoxan, but I've had far worse from UTI's before chemo.

Mild nausea. Thankfully I didn't experience debilitating nausea. I received strong anti-nausea medication by IV with each chemo treatment and it worked well for me, but I felt queasy much of the time and had an aversion to many foods that I normally like. Most foods just tasted odd or like nothing at all. I have been a coffee drinker all my adult life, but couldn't stomach coffee during chemo. I also had no appetite for anything sweet.

Lower GI symptoms. These gave me new empathy and respect for people who live with chronic conditions like Celiac disease, Crohns disease and IBS. During chemo I experienced the worst stomach and intestinal pain and cramping of my life along with the kind of unpredictable lower GI symptoms that make you hesitate to go out for long or to get far from a bathroom. These symptoms were cumulative and were worse with my last treatment.

Mild bone and joint pain. Some patients experience worse pain than I did from Taxotere and/or from the Neulasta injection that is given the day after chemo to bring the white blood cell count back up.

Hair loss. This began right on schedule about two weeks after my first infusion. Like many chemo patients, I didn't want to let this phase drag on while I shed clumps of hair everywhere, so I had Rick buzz my head down to stubble.

Nerve pain. After my first treatment, the worst side effect I experienced was sharp, shooting, stabbing pains all over: in my head, throat, neck, jaw, back, stomach, side, legs. I probably should have called my oncologist, but I assumed this was just part of the chemo experience. At my next appointment before my second chemo treatment, he concluded that I had worse than average nerve pain from the Taxotere and he prescribed a high dose B-complex vitamin supplement that is more easily absorbed than over-the-counter vitamin B supplements. Although I experienced some nerve pain after my next three chemo treatments, it was much milder and less frequent.

In my next post, I'll share some tips that helped me cope with and prevent some of the side effects of chemo.

During my time in the chemo zone, I often felt like a shadow of myself. If you are a Harry Potter fan, you might say I felt like I had suffered a dementor attack. If you are a Lord of the Rings fan, you might say I felt like Frodo after he had worn the ring too long. Obviously I am a fan of both and I am happily starting to feel more like myself. 

Calling It Quits

Last Thursday I had my fourth chemo treatment. It wasn't until afterward, and before the side effects hit hard, that I began to think about the fact that from the start, my oncologist recommended "four to six treatments, six if you can tolerate the first four." I like and respect my oncologist, but as I began to think about that, I questioned whether it was best to have six treatments just because I could tolerate them. 

One of the websites my oncologist had recommended was www.breastcancer.org and I have gained a lot of helpful information from their articles and by communicating with other breast cancer patients on their discussion boards. I've learned that there are many types of breast cancer and many variations of diagnosis. When I first learned that my biopsy had shown a malignancy last January, a few people asked me if my tumor was DCIS. I had no idea what that meant, but the answer turned out to be no. It was a little more serious than that. 

Now, after my user name, my signature line on the discussion boards includes:
Dx 1/2/2013, IDC, 3cm, Stage IIa, Grade 2, 0/2 nodes, ER+/PR+, HER2-

I don't expect that to mean much to most readers of this blog, but it means a lot to breast cancer patients looking to share information with others who have a similar diagnosis. There are two bits of information in that line that make me comfortable stopping with four chemo treatments and made me doubt that any possible benefits of two more would outweigh the risks and side effects:

I had no lymph node involvement and my cancer was not "triple negative." 

Either of these details would have made chemotherapy a more critical piece of my overall treatment plan. I have no doubt that having chemo was a good decision, given the size, stage and grade of my tumor, but based on my own research and sharing of information with other patients, I'm also convinced that four treatments were enough.  Given the particulars of my diagnosis, the next two phases of my treatment plan, radiation and hormone therapy (make that "anti-hormone" therapy,) are every bit as important, if not more so, than chemotherapy. 

I didn't feel comfortable delaying radiation therapy any longer to have two more chemo treatments. Radiation is critical after a lumpectomy and it shouldn't be delayed any longer than necessary.

I told Rick that he was my witness that I had reached this decision before the pre-chemo steriods wore off and the side effects from last Thursday's treatment hit, because this fourth treatment has hit me faster and harder than any of the previous ones. I called my medical oncologist's office yesterday and told his nurse about my decision. She spoke with him and called back to tell me that he was fine with it and gave me a referral to a radiation oncologist. He will continue to follow me after radiation and through "anti-hormone" therapy.

It will take some time to recover from the side effects of my chemotherapy, but I'm thankful that I've been able to tolerate it as well as I have. In a future post I'll share some tips that have helped me get through it. I don't expect radiation or hormone therapy to be much fun either, but I'm glad to be headed out of the chemo zone and grateful to have multiple treatment options.  

I've learned a lot so far on this journey and I think it's important to learn as much as possible and make the wisest decisions I can. But one thing I had already learned from life before breast cancer is that when it comes right down to it, I'm really not in control of all that much. That's where faith comes in. God has been in control all along and will continue to be. I know that He is good even if some things He allows in my life seem far from it.

My fourth chemo treatment