A little lotion and a lot of hope

Now that we’re finally getting some sunshine in Western Washington, I’ve been reaching for the suntan lotion more frequently.

Slathering it on, especially for the first time each summer, always reminds me of winter in Ohio when I was 13 years old.

It was then, on January 25th, that I learned I had cancer. I lived in Central Ohio where winter weather was usually less than pleasant. Combine that with the numerous trips I would soon be making to Children’s Hospital hematology/oncology clinic, and that winter was truly grim.

One of the things that kept me going was the hope that I’d be well enough to join my family on our annual Spring Break vacation to Sanibel Island, Florida. I loved Sanibel – we had visited the island every year for five years in a row.

Best known for the amazing array of sea shells that wash up on its Gulf Coast beaches, Sanibel boasted other treasures, too. Along the shore we would watch for dolphins or hike to the old lighthouse that was an island landmark. And driving through the island’s wildlife refuge, we looked for exotic birds as well as alligators sunning on the banks of the inland waterways.

Our Sanibel vacation was scheduled for end of March. Before that date some of my most intense courses of cancer treatment were scheduled. During February, my first full month of treatment, I visited the cancer clinic three times a week for chemotherapy. For three weeks in March, I went to another hospital in town to receive daily radiation therapy.

The chemo in February made me feel pretty awful. For most of the day, I just lay on the couch sleeping or watching TV. My only breaks from reality happened during trips to the bathroom. It was there that my mom stashed the suntan lotion under the sink.

Whenever I was in the bathroom, I’d pull out one of the bottles, unscrew the top, take a deep whiff and pretend I was lying in the sun on Sanibel. I’d also rub some lotion on my hands so I could continue to smell it, and dream, once I was back on the couch.

My long-ago visits to smell the lotion have made it into family lore – including my current family of three children and husband. My kids think it’s pretty funny that mom used to hang out in the bathroom just so she could sniff suntan lotion.

Yet for me those little pick-me-up trips – and my visions of Florida sunshine – helped get me through those grueling first months of treatment. And, I’m happy to report, I did get to go on that vacation to Sanibel Island.

What about you? Do you have a memory that you go back to, helping you through the tough times?

How to make the most out of every patient visit

Editors Note: We met with Susan Covey and Pam Clay, Certified Medical Assistants who serve as Clinical Staff at the Providence Regional Cancer System Clinic in Lacey, WA to ask them, “How can patients make the most out of their visit?” Here are their top 6 …

1. Bring a list of your medications. See “I take one blue pill and three pink pills twice a day.”
2. Write your questions down. We find that it’s helpful for our patients and their support partners to keep a journal beginning the day they leave their last visit to the day of your next one.
3. Bring a support partner. It’s not only helpful to have a second set of ears listening to your care team’s instructions; it’s also beneficial to have a second person’s questions while the doctor is present.
4. Let us know if you’ve been to another doctor, or had tests done somewhere else. This information helps us to ensure the treatment plan we are creating for you is the most appropriate and complete.
5. Be a good patient. This means, don’t be afraid to give us the full picture.
   - Tell your doctor everything you tell your nurse. Often patients will share openly with their care team up until the point they see their doctor. Not wanting to look like they are “complaining to their doctor” they stop sharing and simply answer the doctor’s questions, painting an incomplete picture of their treatment.
   - Don’t ignore your side-effects! Every day we make more progress managing the side-effects that cancer treatment often brings … but we can’t address them if you don’t tell us about them. See “Cancer and pain: It’s okay to ask for help.”
6. Be yourself. We think our patients and those who support them are some of the bravest people we know … but we also know that you are feeling scared, confused, frustrated … the list goes on. When you come to see us don’t be afraid to tell us how you really feel. We’re here to help.

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Life After Cancer: 31 Years and Counting

I’m a long-time survivor of cancer. I was diagnosed with childhood leukemia in 1980, when I was 13. No age is a good age to learn you have cancer, but 13 seemed particularly rough. Fitting in? No chance after losing my hair, missing three months of school, and choking down more pills a day than all my grandparents combined.

Years later I learned I was actually lucky to get my kind of cancer when I was a teenager. At the time, standard treatment for ALL (acute lymphoblastic leukemia) involved very high doses of radiation to the brain. For younger kids, whose brains were still developing, this could lead to learning disabilities and difficulties at school. Other serious problems could occur, too, including brain tumors caused by the radiation therapy and certain chemotherapy drugs.

I was very fortunate to avoid learning disabilities. And so far I’ve been spared other medical late effects of treatment. But even now I still worry that something could go wrong.

One way I’ve coped with these lingering fears is to work in the healthcare field. As an English major, healthcare communications made career sense. At work I’ve written articles, brochures, booklets and Websites about cancer. I’ve interviewed doctors, scientists, nurses, social workers and patients. And along the way, I’ve learned about the medical side of cancer as well as the many ways it can infiltrate your life – physically, emotionally, financially – you name it.

When a co-worker at Providence St. Peter Hospital created this blog, I wanted to figure out a meaningful way to contribute. I plan to write about issues I’ve dealt with as a cancer survivor. Many of these topics have already been expertly addressed in the blog. But hopefully something I write will resonate with someone, and make a small difference in the way he or she copes with their own cancer experience.

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The Pathologist’s role in cancer diagnosis and care

Pathologists are physicians who specialize in diagnosing and characterizing disease through scientific analysis of a patient’s organs, tissue, blood and body fluids.

A pathologist is responsible for a person’s initial cancer diagnosis including:

• Exactly what type it is
• What its particular features are (contained in the pathology report)
• What the prognosis is

Pathologists also manage hospitals and private laboratories. Occasionally we do autopsies but most pathologists are not forensic pathologists, like those portrayed on television shows such as CSI.

The life changing diagnosis of cancer usually starts with symptoms that a primary care provider suspects may be cancer, such as a lump or tumor, weight loss, severe fatigue, blood in the stool, changed blood test results, etc. A biopsy of the tumor is taken by a surgeon or radiologist and sent to the pathologist who analyzes it and decides (through a series of scientific tests) what it is.

Understanding your pathology report
The pathology report contains several things:

• The overall diagnosis (e.g., breast carcinoma, infiltrating ductal type)
• Descriptions of all features including:
    * Subtype
    * Degree of spread
    * Invasion of tumor into blood or lymphatic vessels
    * Growth rate
    * Grade or how much the tumor resembles its normal tissue of origin, stage, etc.

These detailed reports are written primarily for other doctors (which is why pathologists are sometimes called the Doctor’s Doctor). However, our group of CellNetix pathologists are happy to take calls from patients to help them understand the reports. In fact, I highly recommend patients ask their primary healthcare provider for a copy of their pathology report.

Every line item in that report is critical for your personalized treatment plan. In fact, more than 70 percent of the decisions made about your health care involve pathology and your lab report. Source. Knowing the details of the diagnosis helps when talking to other healthcare providers, family and friends and when searching the internet for information.

CellNetix office phone numbers:

• Aberdeen 360.537.0562
• Centralia 360.827.6800
• Olympia 360.493.7330
• Seattle 206.386.2676

Scientifically speaking, what is cancer?

A tumor (swelling) is caused by uncontrolled growth of cells starting in a particular organ in the body. Almost all tumors arise from a single cell that has lost growth control and makes a colony or clone of cells that are initially identical.

There are two main categories of tumors: Benign and malignant. Benign tumors are less aggressive, usually don’t invade into tissues that are not their normal residence and don’t metastasize or spread to distant tissues or organs through the vascular systems (lymphatic and blood vessels). Malignant tumors are defined by their ability to invade and metastasize causing significant illness and death. They usually need treatment to remove or destroy them.

Cancer is a general, sometimes imprecise term for a malignant tumor. There are hundreds of different kinds of cancers, and each is a distinctive disease. Malignant tumors are characterized and classified by the location in the body where they start:

• Carcinomas are tumors of epithelium (more below)
• Sarcomas are tumors of supporting tissues (bone, connective tissue, fat, blood vessels, etc.)
• Leukemias are tumors of blood cells
• Lymphomas are tumors of lymph node or blood cells
• Central nervous system tumors originate in the brain.

Carcinomas are the most common tumors in adults (e.g., breast, colon, prostate, lung cancers), and start in the organs that are mostly made up of epithelial cells. These are cells of specialized function that define the organ (for example carcinomas of the skin are malignant tumors arising in the epithelium of the skin, or the epidermis – the covering that is the main functional part of the skin).

Cancers usually arise spontaneously or sporadically (“out of the blue”), but rarely an increased cancer risk can be inherited. The cause of most cancers is unknown, but some are caused by viruses (cervical cancer, liver carcinoma, and a few others). It is thought that exposure to certain chemicals, or excessive radiation can cause cancer, but in only a few instances are the exact causes understood (e.g. smoking is clearly a major cause of lung cancer and increases the risk for many other cancers).

Editor's Note: If you receive a diagnosis of cancer continue to talk with your doctor until what you are hearing makes sense to you. Don't be afraid to ask as many questions as you need to, regardless of how long it takes. Understanding your personal diagnosis is a powerful tool in your survivorship journey.

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