It's about living: An Essay of Lessons from my Cancer experience

It’s about Living

By Deborah Davis

An Essay of Lessons from my Cancer Experience

It's not about survival. It's about life. Cancer makes you think about your life and what you're going to do with it.

Hi! My name is Debbie Davis, and I have just returned from a year and a half spent battling cancer. This is my story, infiltrated with a few things I learned along the way.

All of us should know that every month we should each check ourselves for changes. Get together with your spouse to check the places you can't see. You’re looking for changes. That's why you only do this once a month. If you do it more often, you may not see the changes. You aren't just looking for lumps. Look for a rash, a swollen place, and a new mole, dimpling of the skin, anything different from last month. Not just a lump. I know. I didn't have a lump.

When I did my monthly self-exam in January 1999, I discovered that my right breast was a bit swollen. I waited a week and checked again. It was worse. So, I called my doctor's office and they said they might get to me in March. I took the appointment and hung up the phone. I hadn't even released it when I said, "No, that's not good enough." I called back and was put through to the breast care center at Bethesda. They made an appointment for the following day.

The doctor at the Breast Care Center took a look and said, "this might be just an infection, but it might be something more serious." He gave me antibiotics and a referral for a mammogram and a sonogram for two weeks. I was scheduled for a mohs surgery to remove basal cell carcinoma on my face, for that time, so I bumped the mammogram two more weeks.  By the time I went for the imaging studies, I was swollen to nearly twice as big as the other side and in terrible pain. We went from mammogram to sonogram to biopsy in a period of less than three hours. The pathologist was in the operating room with us. While the final results wouldn't be confirmed until over the weekend, we knew it was cancer.

Many women avoid mammograms because they think they might be painful. You can take my word for it that it is not nearly as painful as cancer. There are those that say it is similar to being clamped between two irons, which have been kept in the freezer. I think it is closer to lying on a garage floor in the middle of winter and being squished by the car. In any event, while not a comfortable study, it is a relatively pain free and pretty accurate study which is crucial to early detection. 

Every woman over 40 should have a baseline and follow-up every three years.  But, keep in mind, it doesn't really detect everything ... it doesn't usually detect inflammatory cancers. In my case, it did show abnormalities, which led us to the sonogram, which showed a "suspicious thickening of dermal tissue." It was the core needle biopsy and incisional biopsy that gave us a confirmation of malignant cells in the breast tissue, in the lymph nodes, and in the dermal-lymphatic tissue.  That is what led us to a definitive diagnosis of inflammatory breast cancer.

Biopsies are done by "shave," which is where they cut just a wee bit into the skin, "punch," which is where they take a little cookie cutter through all layers of the skin, "standard needle," which is just a tiny needle to extract some fluid; "core needle," which is a long hollow tube they shove deep into your body to extract tissue; "incisional," which is where they actually cut open your body to extract a piece of tumor. There is also "stereotactic," where they suspend a body part through an opening to allow gravity to extend it, and then insert a set of needle probes to stabilize it and give ultrasound direction for a needle biopsy. This is commonly used on a very small tumor which is highly suspect.

My immediate response was to say, "Okay God, you have cancer. Oh, and if you're going to take me home from this convert my husband before you do." You see; being a Christian has been a sustaining force for me throughout this whole ordeal. I immediately felt as if I was being hugged. I have referred to this feeling as being wrapped in angel's wings. It has helped me through many difficult days.  My friends have commented that God obviously found it easier to heal my cancer, than to convert my husband.

The doctor set up an appointment with the whole team from Bethesda for Tuesday, March 9^th. I told the doctor that, "by then, I will know." When he asked, "Know what?" I told him, "All there is to know." I went from his office to the medical library there at Bethesda, and from that library to the NIH library, and from there,  home to the internet. You see I am an infomaniac. I take comfort from knowledge. I believe knowledge is power. In an uncertain time in my life, it was critical that I learn everything I could.

My illness is inflammatory breast cancer. That probably doesn't mean a whole lot more to you now that it did to me then. But, I became educated in a hurry. Here's some of what I learned.

You may have heard that one in eight women will get breast cancer. That is over the span of a lifetime. So, the odds go against you, as you get older. Note that one in 1000 men will also get breast cancer. This is about 1300 per year. Of these, nearly one-third will die because they didn't recognize the symptoms and seek help fast enough. Men are less likely to go to the doctor, and are really less likely to suggest they have a breast problem. More likely, they will claim a strained muscle in the chest. I get these stats from the American Cancer Society and the National Cancer Institute.

Only about 5% of breast cancer patients are under age 40. But, it does happen. But out of those who do develop a breast cancer, less than one in 20 will develop an inflammatory carcinoma. This is important. The recovery rate for a non-inflammatory breast cancer is greater than 97% these days. Most women who get breast cancer detect it early and get treatment, and never have to deal with it again.

Some will get it again and it is important to note that a recurrence of breast cancer is still breast cancer. This is true, even if it is found in the lungs, the liver, the bones or the brain. I hear many stories of people, who had breast cancer years ago, but now have lung cancer - perhaps for some that is true, but it is far more likely that it is a recurrence or metastasis of breast cancer. A biopsy will determine the type of cancer, and the type of cancer is critical in the treatment of cancer. There are specific chemicals, which work better against certain types of malignancies.

A so-called "normal" cancer forms in layer upon layer of cells creating a small knot or lump, which feels something like a raw pea. However, it takes thousands of these cells to get large enough to feel. Doubling time becomes a critical factor.

If the doctors can determine the doubling time of the cancer, they know how quickly they have to act. Doubling time is the time is takes for the cells to double in number. Inflammatory has an incredibly high doubling time. Most breast cancers have a relatively low doubling time, which is why, usually, a patient can take time to consider all the options. Early detection buys time for treatment. A mammogram can detect calcifications, which indicate a greater potential for malignant cells. It can also indicate a lump too small to be felt. A mammogram can detect a mass that is literally no larger than the head of a pin. And early detection is the key.

Unfortunately for me, inflammatory carcinoma does not grow in a knot. It grows in sheets with little tentacles on the edges always searching for more places to adhere. As a result, it is usually not discovered until its insidious presence is well integrated into the lymph system. The lymph system runs throughout the body. It is alongside the circulatory system even into the skin tissue. So, when you hear of cancer in the lymph system, you know its potential is devastating.

Breast cancer is usually one of two forms - ductal or lobular. The most common kind of breast cancer, and the most easily treated is ductal carcinoma in situ (DCIS). This means cancer completely encapsulated inside a mammary duct. It is easily removed with little further involvement. It often presents accompanied by a cyst and is removed in the process of removing the cyst and discovered in pathology.

Lobular cancers present between the ducts and are not as often in situ because lobes are a broader expanse in which to develop than ducts. This simply means that lobular may not be as easily discovered on self-exam as ductal. Ergo, you have the importance of mammograms. An invasive carcinoma is one that has gone beyond the boundaries of in situ.

My cancer is an infiltrating invasive ductal carcinoma with dermal and lymphatic involvement. Fancy name isn't it? That

means that my cancer started in the ducts, but by its nature was beyond the walls of the ducts as if they didn't exist and looking for other places to live. It liked my lymph system, and found a home there. This brought it into the skin tissue (which you may recall is riddled with lymphatics) and into the lymph nodes under my arm. 

This brings us to staging. People often refer to their cancer by stages. The stages are I, II, III, and IV. Each stage is leveled by A, B, C, and D. Basically, if it is small and local, it is stage I. If it is larger (2-5 cms) then it is stage II. Over 5 cms (2 inches) is stage III – this can also mean local metastises (extra cancers nearby). Distant metastases are stage IV. The area of surrounding involvement and number of lymph nodes give the rating A-D.

Inflammatory breast cancer is an automatic rating ofIIIB because of its size and lymph node and adjacent organ involvement (skin). The really critical thing to learn about all of this is that the more lymph system involvement, the worse the prognosis. When I was diagnosed, I was told that only 5% of people diagnosed with my illness would live for two years. At NNMC, they also told me that I could get better treatment across the street at NIH/NCI. And they set up the appointment for the following week. The bottom line was that within two weeks of confirmed diagnosis, I had a catheter in my chest, and chemo in my bloodstream.

That, again, is different from the treatment for most breast cancers. Cancer can be treated in two methods - systemically, and locally. Each of these treatments has multiple venues. Systemic treatment includes such things as chemotherapy, hormone treatment and bone marrow transplants. Local treatments include radiation and surgery (including laser, gamma knife, and cryosurgery).

For most cancers, primary treatment is local, surgery. Depending on the nature of the cancer, that may be the end of the treatment. Further treatment may be advised. For breast cancer, if the cancer is an Estrogen feeder, hormonal treatment with tamoxifen (which keeps estrogen levels down to near zero) is often prescribed. The idea is to cut out the cancer as soon as possible and therefore try to prevent the spread of the disease. However, remember what I said about inflammatory cancers. By their nature, they have these little tendrils spreading and seeking new homes. So, if surgery is performed first, there is a substantive risk of leaving cancer in the system. The goal with neo-adjuvant (before surgery) chemotherapy is to cutoff those little fingers from invading other systems. Then, you have nice solid tumors you can readily remove. In my treatment course, I was involved in a protocol that used high dose chemotherapy before surgery and standard dosage afterwards.

With chemo, the concept is that cancer cells divide very quickly. So, you are basically given a poison that will kill fast growing cells. As a consequence, all the fast growing cells in your body die. This includes those in your hair roots; tear ducts, digestive system linings, fingernails, white blood cells, red blood cells, etc.  And so, your hair falls out, your eyes dry up, your stomach hurts, and you may lose your fingernails (at the least you get impairment ridges). You also become severely anemic and neutropenic (lacking in immunity defenses). It is not fun. It is critical that you take the anti-emetics (anti-nausea) drugs on schedule or you will find you can't catch up to them and are basically sick for days.

For my chemo, I would be three days on, three weeks off. So on Wednesday, Thursday, and Friday I would go to Bethesda and be filled with chemicals. I would even bring them home in an intravenous fanny pack. On Saturday, I would go back to be disconnected. In order to fight the neutropenia, I would spend the next week giving myself shots of Neupogen to push my bone marrow into making more blood cells. By Thursday afternoon, I would be unable to see well enough to read. I would have neuropathy symptoms (numbness and tingling in my hands and feet). These would last until about the following Tuesday. I would also get the general nausea, burning eyes, and sense of weakness.

I usually seemed to get sick on Friday and Sunday. Then, as all that would resolve, I would get bone pain from the Neupogen shots. That would last about a week. Usually, by the week before chemo, I would feel pretty good. But each time I felt a little worse, and it took a little longer to recover.

I cried hardest when I lost my hair. I'm not sure why that was such a significant issue for me. I understand for many people it is one of the most traumatic pieces. I think it is because it is an outward and visible sign of your illness. During those brief weeks of feeling well, I would almost forget how sick I was until I caught sight of myself in a mirror or window. Then it would hit me like a physical blow.

Now I have hair, and it is curly, which is a very new experience for me. And, although I had colored it for years, I don't think it was really this gray before. But hey! It's hair! It is critical for folks who are going to have chemo to deal with the hair issue in advance. I elected to wear wigs. I acquired my wig before I lost my hair. During the summer, I wore a hat with hair attached to the edges. This is another one of those incredibly personal decisions. Some folks are comfortable without hair. As much as I hated my wigs and hats, I would not go some places without them. But, I seldom wore them around the house.

My neo-adjuvant chemo cycles continued for seven cycles. Every two months, we would do complete body scans to check on the condition of the tumors. Then I got a six-week break from chemo to become healthy enough for surgery.

Right after my illness was discovered, I felt a mass on the other side. My doctors said that to biopsy it would not change the treatment cycle. And after two chemo cycles, the mass was gone. Nonetheless, I believed in my heart it was cancer. So, when I was scheduled for surgery, I requested a bilateral mastectomy. It took some extensive argument, and a lot of talking to this person and that person, but I got it. The post-operative pathology report indicated that there were necroses (dead cancer cells) in the other side so I felt somewhat vindicated for my push for removal.

The most important things to note about mastectomy are that it doesn't hurt as much as you think, and you must do your exercises everyday to recover. There are all kinds of issues detailed to prosthetics and reconstructive surgery, but I don't want to address them in detail. Suffice it to say that insurance covers both. With some insurance, it is a huge headache to get the required approvals and you may have to front the costs for prosthetics (about $600).

After the surgery, I had six weeks to recover and then started chemo again. The little peach fuzz I had grown fell out, but it wasn't as devastating this time. The side effects were pretty much the same, but this time I only had one day of injection and four weeks to recover.

During all these months of chemo, I learned some of the most important lessons of my life. I learned that my family was really there for me when I needed them. I learned that the Marine Corps really does take care of its own. I learned that Angel's wings would keep you warm even in the worst chills and fevers. I learned that no matter how sick you are, the sun comes up in the morning. And I learned that clean sheets always make you feel better. 

More than once, I was hospitalized because of infections. When you're on chemo, your body simply does not have the capacity to fight infections. So, when you get a little infection, it becomes a raging infection very quickly. What is usually just a cold becomes a critical sinus infection. A tiny mouth ulcer from breaking cells in the lining of the mouth becomes a huge infection. The tiniest damage to the catheter becomes a dangerous site infection that can cost you the catheter. Because your body' cannot fight infection, the slightest fever can indicate an infection and can lead to sepsis and death. More people actually die from side effects of treatment than of their illness these days. An amazing number of cancer patients die from dehydration or malnutrition. This is because it's hard to eat and drink when you fear everything coming up again. Just remember the worse flu you ever had. Now, multiply that times fifty. Now imagine it coming on schedule every few weeks. The good news is that when you want to eat, you can eat anything you want.

After I had finished chemo, I was given six weeks to regain my strength for a bone marrow transplant. That's not technically correct. I received what we term HDC/SCR. This is High-Dose Chemo with Stem Cell Replacement. You may have heard from folks who had bone marrow pulled from their hips? Well, with modem technology, they can pull from the blood stream the stem cells from which bone marrow regenerates. The process is actually very similar to a heart catheterization. They insert a large catheter into the femoral artery in the groin.

Then they insert a second one into the vein next to it. Then they extract the blood, remove the stem cells, and return the blood products. When all this is done, they pull out the catheter and put sandbags on your leg for two hours to stop the bleeding. Then they attach a really sticky bandage. Then you are off your feet overnight. The bandage stays on for several days. It is not pleasant. The products from this process are cleansed and reviewed under the microscope on a broad sampling basis to check for malignant cells. Then they are frozen with a preservative.

Months later it's time for the transplant. This transplant is termed autologous because you’re getting your own cells back. This is a good thing because there is no risk of rejection or graph versus host disease. 

Shortly after the extraction, I had my routine dermatology appointment. Remember, back at the beginning of this diagnosis, I had deferred my mammogram because of basal cell carcinoma? Well, it was time for my checkup. I wanted to get it while I was between chemos. I told the doc there was a mole on my leg that had a dark spot I wanted him to check. He thought it was nothing, but biopsied it anyway. It was malignant melanoma. We did surgery to remove the melanoma, and decided that was sufficient treatment for now, but we would watch it closely.

Melanoma is one of the fasted growing cancers, and rapidly becoming one of the more common. When I was a youngster growing up in California, we didn't give a lot of thought to sunscreen. We should have. Now I use a sunscreen in my moisturizer and if I'm in the sun, I'm pretty well covered. But, the damage is done. For me, the hardest thing about melanoma was that it came in the middle of this breast cancer treatment. I couldn't see how anything could grow through the chemo I was taking.

A tick had bitten me and it died. But remember what I said about knowing what kind of cancer you have? Well, melanoma and inflammatory carcinoma are very different critters. Still, it was one more detour on my path to good health.

For me, transplant time came in January 2000. I went into the hospital on a Tuesday. I received extremely high doses of chemo on Wednesday, Thursday, and Friday. Then we waited for my counts to drop; and drop they did. We watched my white blood cells go from thousands down to hundreds, down to tens, and to single digits. The red blood cell count wasn't far behind. So, when I was down to nearly just plasma, they poured the stem cells back into my blood stream. This went through the catheter in my chest.

The night before I was to receive the cells, I became very agitated. I felt like I was under some kind of attack. So, I wrote affirmations on paper and posted them all over my room. My favorite was "I can do all things through Him who strengthens me, and this treatment ain't nothing but a thing!" That became my motto for the difficult days ahead.

The stem cell replacement was cold, and it smelled funny. I became quite ill. It takes several days for the stem cells to find their homes in the bone marrow and get  back to work making new cells. At this point, you are so ill as to be in and out of consciousness for several days. There are about four days in there of which I have no memory. From what I've heard, that is probably best.

As counts start to rise, the hardest thing is to eat and drink enough. It takes bunches of fluids to make new blood cells. And it takes lots of calories to regain strength. However, when the entire lining of your entire digestive track is gone, and everything smells and tastes like chemo; food is not desirable. Once I was home, it was easier. But, they wouldn't let me out of the hospital until I consumed enough calories in one day to sustain me. I went back to that which had sustained me during chemo: buttered noodles and cherry Kool-Aid. I found (and this is a good hint to help others going through chemo) that anything cooked or made in metal tasted like metal. Actually, everything tastes like chemo, which is kind of like after you've been to the dentist, but about 100 times worse. Using metal only increased the metallic flavor. So, everything had to be cooked in glass. Also, it took a strong taste (like cherry Kool-Aid) to get past the chemo taste.

I was very blessed. I recovered quickly, and came home safely. My blood counts rose to normal levels for the first time since I had been in treatment. It took many, many months for the chemo taste and feeling to get out of my mouth and nose and eyes.

It may never be completely gone. But, the worst was over. The all-consuming weariness is the worst part of this recovery process. When I first went home after the transplant, I would sleep about 20 hours a day. I would get up and take a bath, then take a nap. I would go downstairs and rest, then eat and rest, then go upstairs and sleep. Sometimes, my family would come up to eat with me in my room. It took about three weeks before I had enough energy to walk to the mailbox at the end of my driveway, and that was only about 50 yards.

Six weeks after the transplant, they started me on Tamoxifen. The chemotherapy had thrown me into menopause. The tamoxifen would keep me there. Tamoxifen keeps the estrogen out of the body by enhancing enzymes which act as glue to the natural estrogen my body produces. But, instead of letting the estrodials flow through my bloodstream and into my body, they stick to the tamoxifen and get flushed away as waste. Side effects include mood swings, hot flashes, and weight gain. Everyone I know on Tamoxifen gained 20 pounds within six weeks.

Beginning in March, I started radiation therapy. Radiation therapy required daily treatment. That is to say a daily drive of over an hour to Bethesda for a twenty minute treatment.  The first couple of weeks weren't too bad, but about the fourth week, the blistering and peeling became quite severe. After six weeks, we had to take a break to let my skin recover a bit. Then, we finished with another ten days of electron therapy.

Radiation therapy patients refer to the treatment as "the gift that keeps on giving." For weeks, months, and even years after treatment, the radiation continues to burn tissue in your body. It is nasty stuff, but it does kill cancer cells.

I thought I would be able to return to my prior activity level soon after finishing treatment. However, I have since learned the fallacy of that thought. My reading tells me that it takes at least 150% of time in treatment to recover from treatment. I was in active treatment for about 15 months. That means for 22 months I will be in recovery. And it will never be the same.

It's not about survival. It's about life, and living each day knowing that there are a limited number of them. A young friend of mine (10 years) was recently told that after three years of treatment, there was nothing more they could do. Her illness was terminal. Her response was classic, "So is yours." She captured the most important aspect.

Shortly after my diagnosis, my son James asked if I was going to die. I told him, "Everyone dies. It's just a matter of when." When he responded that I would be healed, I asked him how. He told me, "God only heals in two ways: he'll either fix the body you have, or take you to heaven for a new one." This authorized me to be prepared for either perspective.

I once heard him tell someone I was "doing pretty good right now, but we never know when it might come back. After all, the goal is to keep it away until there is a better treatment." He's right. Inflammatory Breast Carcinoma has one of the highest recurrence rates of all cancers. It is right behind malignant melanoma. So, my risk is exceptionally high.

Every day, I give it back to God. In the dark of the night I frequently take it back again. And there are after effects I didn't expect. One day I panicked because I could not find a parking space. I felt really stupid about it. But, another woman who had been through my illness told me she had a panic attack at McDonald's because they had no apple pies one day. This helped. I felt a bit better.

I strongly agree with the study that reflects that people in support groups do better overall. And there are support groups for most every illness. There are also support groups for the caregivers and family members. That is important. In some ways, it is harder on the people who love you because there is so little they can actually do.

Cancer reminds you that you are not in complete control. That is a frightening thought, particularly for the overwhelming numbers of type "A" personalities in the world. But, sometimes, that reminder is a good thing. It helped me become more dependent on God, on my family, on others.

Check yourself monthly for changes. If something is suspicious, see a doctor. If your gut tells you to push for answers, don't give up until you are satisfied. If you do have a cancer, make an informed treatment choice. Get a second opinion.

Investigate for metastases prior to treatment. You are the leader of your treatment team. Also, find a support group. Be honest with yourself and your family. It' s okay to be scared, to be strong, to be confused, to be focused. Don't lie to your children, they will always think worse than it is. Let others help. They really want to and it makes them feel better. It makes you feel better, too. Exercise when you can, but rest when you must  Keep a list of little things for folks to do – let others wash the kitchen floor, pick up milk at the grocery, or bathe the dog.

If you know someone who has cancer, learn about it. Be able to listen to them, they may need to talk. But, don't push too hard, they may not want to talk. I found email to be a wonderful tool. I could receive sentiment and smiles from all kinds of folks, and keep them informed. My “Deb Reports” also served as a sort of journal. Journals are great tools. They let you express your thoughts and feelings and then go back to them and realize how far you have come. The nice thing about email was I could deal with it when I was up to it. There were days and weeks when I didn't want to talk to anyone. It just took too much energy. But with email, I felt I had a little bit of control about what to say and when.

More people die from heart disease than from any individual cancer. But, more people are being treated for cancer than ever before. The treatments are more and more successful every year. A diagnosis of cancer does not have to be a death sentence. But, it is a chance to look at life differently. Among women age 40 - 55, breast cancer is the leading cause of cancer deaths. Think about this: Every three minutes, another woman is diagnosed with breast cancer. Every 12 minutes, one dies from this disease. Also, 70% of those diagnosed have no indicators – no family history, etc.

The goal is to diagnose early and make an informed treatment decision. Then, you can find life beyond the question of survival.

These are some helpful web sites:

www.4llcancer.com - insights to new treatments and new clinical trials.

www.abreast.org - news articles and new information about breast cancer

www.acor.org - Association of Cancer Online Resources has a plethora of information and links. Also, this is the home site for many mailing lists for cancer issues.

www.breastcancer.net - information and more information and links and lists

www.cancer.org - The American Cancer Society web site.

www.cancerlinks.org - a listing of links, which will help acquire information

www.cancersupportivecare.com - hints and helps for patients and caregivers

www.cancersupportivecare.com-Informationforpatientsandcaregivers.This is

especially useful for new patients.

www.ibcresearch.org - information and support of inflammatory patients, dedicated to spreading the word about ibc.

www.ibcsupport.org - information and support of inflammatory patients, dedicated to supporting the patient and family members.

www.nci.nih.gov - The National Cancer Institute at the National Institute of Health web site is a tremendous resource for finding health care centers and clinical trials.

www.quackwatch.com - While alternative therapies abound and have been found very successful, there are those who will sell hope at a high price. Quackwatch is a great site to review all treatments and find out what is known about them.

www.thebreastcancersite.com - Information and donations by sponsors.

www.y-me.org - Information by patients and caregivers about patients and

caregIvers.

QUESTIONS FOR YOUR DOCTOR

Regardless of your choice to seek other medical opinions, there are some important aspects of your treatment with which you need to feel comfortable. You should expect to be informed of all the procedures, tests, and treatments that are planned for you, and the risks and benefits of each. You should also expect to be informed of all possible alternatives open to you, and the consequences of each alternative. Some questions you may have for your doctors:

1. Why do you recommend this treatment or procedure? What do you expect this treatment to do for me?

2. What are the possible risks of this treatment or procedure? How likely is it that I am at risk for certain side effects or negative reactions?

6. What are the symptoms that usually develop with my type of cancer diagnosis, and how are those treated? Is this treatment any different than that aimed at remission?

7. How will each of these options affect my quality of life? Will I be able to do the things I enjoy? Can I work, take care of my kids, go on vacation?