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

More Than What's Going On With Me

"There's more going on here than what's going on with me." 

My pastor has often exhorted our congregation to keep this perspective as we ponder how God may be at work in the difficult situations in our lives.

When I began writing about my breast cancer experience in this blog, part of my motivation was the hope that my experience might be of help to others some day. I could not have imagined how soon that might happen or how close to my heart it would be.

A beloved family member of mine, who is statistically too young to worry about breast health or breast cancer, was nevertheless, more aware and began doing occasional self exams after my diagnosis. She found a lump. Benign tumors called fibro-adenomas are common at her age and are harmless. That's not what it was.

She had a phyllodes tumor. Less than one percent of breast tumors are this type and when they do occur, it is usually in women more than twice her age. Phyllodes tumors can be malignant, benign, or borderline, but even when they are benign, they are not harmless. They are extremely invasive and have to be surgically removed as quickly after diagnosis as possible. They grow so fast that there can be measurable increase in size in just a couple weeks.

So this precious loved one of mine had a lumpectomy less than three months after I did. There was not much I could do to help, but at least I could give her some idea of what to expect and how to prepare. No one else in our extended family had been through this. And I could pray for her.

As it turns out, her surgical experience has been much harder than mine, because although her tumor was benign, her pathology report did not show clear margins. Because these tumors are so aggressive and can recur, she had to have a second surgery a week later, this one more invasive and resulting in a more painful recovery.  

Then she got the discouraging news that her second pathology report showed that one margin was still not completely clear. A consultation with another surgeon for a second opinion confirmed that this scenario with a need for three surgeries is not unusual with phyllodes tumors.  

So her ordeal is still not over. Oh, how I wish it was. We are hoping and praying that her third surgery can be less invasive and that her recovery will be quick and complete. She will need to be closely followed up for the next few years and maybe for life.

She is absolutely a trooper, brave and beautiful, and I'm so proud of her. She has faced this trial in her life with maturity, faith and courage. If God has used any part of my experience to help her, I'm more than happy to have gone through it.

More to Life Than Chemo

Yes, there is more to life than chemo. Sometimes going through chemo does start to seem like it's all about me and it's all about the chemo. But life goes on and life is good.

Since I entered the chemo zone:

We celebrated the resurrection of our Lord.

Several of my loved ones have had birthdays:
My daughter, Erika
My granddaughter, Emma
My nieces, Meagan and Melanie, my brother-in-law, Eddie, my sisters-in-law, Sabrina and Linda.
Although I haven't been able to celebrate with them in person, I've been reminded of the gift each of them is in my life and family.

Rick and I celebrated our 41st anniversary, after I woke up that morning and thanked God that I wasn't a widow. We had takeout from the neighborhood Chili's at home with our son, and thanked God that he was there to celebrate with us too. (See the previous post for that story)

And we rejoiced that we could now tell everyone how excited we are that our sixth grandchild is on the way! When our youngest daughter, Erika, was here after my surgery, she shared with us that she had just learned that she was pregnant. She and Darin were going to wait awhile to announce the news to the wider world and now they have. Erika's first sonogram confirmed that she was carrying a beautiful, growing, healthy baby, but it was too soon to tell if we are expecting our fifth granddaughter or our second grandson. Either way I am excitedly looking forward to being through with chemo and then radiation, so that God-willing I will be healthy enough to go to Iowa in October and help welcome that precious new bundle of joy!

Life Doesn't Stop for Chemo

I've been living in the chemo zone for two months now and this week I will have my fourth treatment. I thought I'd take the next few posts to talk about some of the other things that have been going on in my life and the life of my family.

The first is an incident that took place about nine days after my second treatment. It was Saturday and I was off from work. That day my mind was focused on our granddaughter, Emma, who was having her fifteenth birthday up in Dallas. I was remembering the day she was born, reflecting on the beautiful young lady she has become, wondering how the festivities with her friends and family were going, and wishing we could be there.

The next day would be my and Rick's 41st anniversary, so I had spent much of the day also reflecting on forty-one years of memories and feeling glad that last year we had celebrated by visiting and taking pictures at all of our old homes and haunts here in town.

Remembering our 40th anniversary last year

As late afternoon transitioned into early evening I was feeling pleased that I had mustered the energy to clean up the kitchen, do several loads of laundry and start dinner for Rick and our son, Paul, who had spent all day in the driveway working on Paul's truck.

Suddenly I became aware of shouting and commotion outside and stepped out into the open garage where I could  see that Rick and Paul were both under the truck in the driveway and there was a group of  teenaged neighbor boys standing wide-eyed in the yard. There was fear and confusion in the air and it made my blood run cold. I couldn't assess exactly what was happening, but there were no other adults in sight and all I knew was that we needed help quickly. I shouted to the boys, "Somebody please call 911!" and then ran into the house to find my phone to do exactly that myself.

I couldn't tell the poor dispatcher exactly what we needed. I wasn't sure if Rick and Paul were pinned, but I knew that if they could get out safely on their own they would have and that at the very least, the truck was unstable on the jack stands. The dispatcher sent a fire truck and ambulance and then wanted to keep me on the phone with him. I stepped back outside in time to tell him that my son was now out from under the truck and bleeding profusely from a deep gash in his forearm, but my husband was still under the truck. Paul was shouting directions to Rick and finally, Rick too, was out from under the truck. The dispatcher gave me instructions to wrap a towel as tightly as I could around Paul's arm and hold it above his heart then asked to speak to Rick to better assess the situation. The fire truck wasn't needed so they drove on past, but the ambulance arrived shortly and the paramedics took over and were just wonderful. 

Rick and Paul both had lots of cuts and bruises, one of Rick's fingers looked crushed and Paul's arm was absolutely gory and obviously needed immediate medical attention. Rick said he could drive Paul to the emergency room, but then admitted that he felt lightheaded. Mainly to placate me, they agreed to go in the ambulance to the ER. I stayed home because I was at a point in my chemo cycle when I was too high maintenance to be of any help.

Rick stayed in touch with me by phone from the ER. I called and emailed family, friends and church to ask for prayer. Once Rick was sure he would be up to driving home, he called some good friends  who came by the house and drove one of our vehicles to the hospital and left it parked in the ER parking lot. Rick's finger wasn't broken, but Paul's arm was gashed to the bone and required careful cleaning and stitching. They got home late that night. Paul was at high risk of infection and was on antibiotics for the next week. Thank God he didn't develop any infection and has full range of motion in his wrist and hand.

Later I got a better understanding of what had happened, although Rick or Paul could explain it much more accurately. They both spent moments under that truck that they thought might be their last on earth. The truck had slipped off the jack stands as they were trying to put the transmission back into it. The transmission had come down and cut into Paul's arm, pinning him. In fact, it was the transmission that kept the truck from coming all the way down on both of them. They got Paul free, but then Rick was pinned by one gloved finger. It was at that point that I came back outside, still on the phone with the 911 dispatcher.

Over the next few days, I went back and forth between thanking  God for sparing their lives and preventing more serious injury, and freaking out over thoughts of what could have happened. It may sound like a cliche to say that God was in control, but some cliches are simply true and God was truly in control that day. And even if it had turned out much worse, that still wouldn't have changed the fact that God was ultimately in control. 

As I thought about how helpless I had felt that day, it occurred to me that even if I had been in robust good  health, I would have been just as helpless. I told Rick that I was glad that at least I was home and was able to call for help. He said, "Well, you're on chemo. Where else would you have been?" And that was the point exactly. If I had been healthy and feeling good on that beautiful Saturday off from work,  I probably would not have been there.