Dear Family and Friends,

Busy week as I keep expecting (hoping) to somehow accomplish as much as I did prior to my diagnosis and treatment. Although it has been three months since I completed chemotherapy and two weeks since radiation ended, I still do not feel 100%. I tire quickly, by mid-afternoon I have little stamina to multi-task and evenings find me once again napping on my favorite chair in front of the family room television. What I’m doing in an attempt to increase my energy level these days includes planning ahead so I am certain to have nutritious food and snacks throughout the day, taking vitamins, exercising 30 minutes most mornings and continuing to discover my purpose. As the authors of “Repacking Your Bags: Lighten Your Load for the Rest of your Life” demonstrate, “Often it takes a crisis for people to discover (or rediscover) their purpose.” I think it’s safe to say that we’ve been through a crisis in 2009 – one that we’ve emerged from a little bruised but not beaten by a long shot. Bruises heal and living a life of purpose has become very important to me as I go through these days. I’ve written about that in the previous two posts that you can read here and here.

David and I met with one of my oncologists this week for a follow-up visit. He commented on the fact that many women experience depression after chemotherapy and radiation. I am well aware that the post-chemotherapy and radiation period can be a whole new adjustment phase as the patient moves toward “survivorship.” Looking back, however, it all seems to have happened so quickly (granted when you’re in throes of it all, time crawls)! The oncologist asked how I was doing and I replied, “I’m still sick.” What I really wanted to say is, “You don’t understand. This isn’t me. Certainly not the “me” I remember pre-cancer!” Prior to the cancer diagnosis I had lots of energy. I slept less than any of our children. I was up every morning very early and done jogging by 6am only to work 10-12 hours days followed by evening activities. I’m asking myself now, “Is this ‘depression’ sapping my energy on a daily basis or is what I’m experiencing just ‘normal’ post-treatment fatigue?’

Certainly if depression is indeed the culprit here, there are most assuredly many things that could contribute to a depressed state (not the least of which is the diagnosis and subsequent treatment). I am depressed about several things including the threat to our health care options. Let’s look at this realistically. I’m 57 years old. Would the new proposed health care system value me at this age enough to allow $20,000 in chemotherapy treatments, an additional $15,000 for an unexpected three-day hospitalization and yet another $65,000 for 33 days of radiation (this is a guess because I haven’t received a hint of a bill for the radiation yet)? Had I been diagnosed with this cancer a few years down the road under a new health program would the powers that be tell me that I had to have a mastectomy with no option for a lumpectomy with radiation? Yeah – I’m depressed about what’s threatening to control my health care options and that of all women who follow behind me after receiving a diagnosis as I did. Statistics show one in eight will experience a diagnosis of breast cancer. Will they have the same options that I had – the option to make a choice – or will their options be mandated for them? I recently read some commentary on “ObamaCare” and the solution was, “Don’t get sick.”

How about work – am I depressed about that? I’m a nurse practitioner and administrator at a demanding oncology office caring for cancer patients and finding it difficult to contemplate keeping our doors open should the existing health care system continue to cut our reimbursements. I am well aware that there have been some “bad” oncologists out there – I know them, you know them. All they’re interested in is the return on their own personal investment and not on providing quality care for cancer victims. They’ve been scamming the system for years and I am all for the government stepping in and putting a stop to their unethical behavior but please don’t punish the rest of us for the few scammers. On the other hand, does the governor of Michigan fully understand that the latest tax initiatives she’s implementing means that cancer offices like ours would be paying Michigan tax on our chemotherapy medications (the life line for cancer patients… like me…like her if she’s unfortunate enough to be among the one in eight statistic)? That little tax initiative alone can and more than likely will close most oncology offices. So, yeah at times I’m depressed about work.

Home – no, I’m not depressed at all with my life at home. Our kids are healthy, caring and productive young adults who still seem to enjoy being with us. My husband never ceases to amaze me as he maintains his positive attitude regardless of the never ending struggles to provide optimum health care in Michigan.

Despite all this, I’m still considering the real reason behind my continued fatigue. I’ve come to the conclusion that it must take the body weeks and even months to heal. This phase I’m going through now is my body healing – healing from the cancer, the chemicals and the constant assault from external forces on internal problems. I’ve concluded that I must stop pushing myself to get through it and assume I’ll know when it’s over. As they say, “This too shall pass.”

Anyway, it’s now morning – a time when I have the greatest amount of energy so I’m paying bills, doing the laundry and reading about Aromatase Inhibitors (I just started mine a week ago).

Prayers and thoughts are with you.

Love,

Veronica

Dear Family and Friends,

What is catching my attention lately are the numerous articles on being considerate and kind not only to the patients we care for but as well as to each other. In addition to current articles, Dr. Bernie Siegal and others wrote about this in the 70’s & 80’s as well. Bernie would tell fellow physicians to “knock before entering a patient’s room” and to “address a patient by their family name” (although difficult these days when we try to maintain patient privacy issues in a waiting room or public chemotherapy suite and still comply with HIPAA guidelines).

Personally, I try to maintain my own habit of civility which I view as contributing to my being of moral fiber but I realize I am human. That said, I came up short here at the office yesterday and I find myself disappointed in me with what is more than likely perceived as lack of kindness or consideration to others. I see myself as a kind person (probably if we were honest we all see ourselves as kind – the reality though isn’t how we view ourselves but how others see us and therein lies the potential sting), until I realize that I am being otherwise. As Chuck Swindoll says, “No one is so important that he or she is above kindness. That aspect of leadership takes courage and confidence.” Courageous leadership demonstrated daily whether you’re a busy physician that doesn’t barge right into an exam room or an administrator or the President of the United States. I need to continue to examine my own daily behavior and make course corrections now and then.

Last week one of our doctors shared a story with us at a board meeting. This physician was concerned because a patient was so angry that it took three weeks to be started on an oral chemotherapy. Upon hearing of the delay, the doctor marched right up to the nurse that appeared to have been the cause of the delay. The nurse proceeded to share the full story of how the patient could have had a $450 a month out-of-pocket expense for the chemotherapy pills. The delay was caused by the behind the scenes ‘work’ necessary to get coverage so the patient had zero expense. Our office was able to offer this to our patient through the diligent work of our Patient Financial Assistant (most oncology offices don’t have a full time staff member assigned to help patients get coverage – we’re pleased to add this service to the list of other unique services we offer those who come our way).

Was that patient a little too quick to place blame? More than likely the anger on the patient’s part arose out of fear and trepidation with a scary diagnosis and an unknown future not to mention if you view chemotherapy as your lifeline any delay will fill you with angst. Definitely justified and probably avoidable with a simple explanation and feedback throughout the period of time it took to procure the benefit of no out-of-pocket expense. Always room to improve and this was a good lesson in viewing something that makes sense to us through the eyes of someone who finds it senseless.

Aren’t we all just a little too quick to react negatively? Shouldn’t we put ourselves in the other’s shoes and view the situation from their perspective? We talk about how we are in the information technology era (knowledge is POWER) however are we still missing some basic manners and behavior that is guided by dignity, civility, and humility. I know I need a regular reminder.

Thoughts and prayers to you.

Love,

Veronica

Dear Family and Friends,

I’m reflecting today on a video I recently had the privilege of watching. It is of a young lady in Vancouver who had terminal cancer (she was 37 years old and had been vigilantly fighting cancer for four years - unfortunately she did succumb to it in early July this year). In March of 2009, Rachel was to speak to a group of 40 women at her church. She ended up speaking to over 600 in a venue that could accommodate that many attendees. Rachel said, "Cancer does not define me. Neither does being a wife or a mother. All these things are part of who I am but they do not define me. What defines me is my relationship... with Jesus." She makes four points in the talk: Know God. Know Yourself. Know the Gospel. Know your Purpose. You can spend 55 minutes and watch it here if you're interested or go here to read the written transcript.

A friend read my last blog entry and commented that this video reminded her of my own message. I’m not sharing this video with you because I think I too am dying from this cancer today. I don’t. I share this with you because I believe our messages are very similar. My message and that of the video is: know yourself ~ know your purpose. Rachel, however, was also able to voice the meaning of God in her life and the importance of reading and studying the Bible.

There is little I can add to this heart-wrenching story. Nor can I possibly add to this message other than to share it with you and to say how I’ve learned throughout my 57 years the importance of serving others and doing so with joy.

Thoughts and prayers are with you.

Love,

Veronica

Dear Family and Friends,

I’m writing this entry from Minnesota. Most of you already know that I was born and raised in the Hopkins/Minnetonka area. I’ve returned for the first time since my diagnosis to visit family and arrived in Minneapolis via Northwest / Delta early Friday evening. The flight itself was very pleasant and uneventful.

I had a window seat and was able to spend nearly two hours reading a book I’ve been looking forward to reading for several weeks. I wanted to take some time this morning to capture my thoughts while they are still fresh in my mind, so pardon if this entry comes across as if I’m not quite able to verbalize what’s rattling around in my head.

Recently the Wall Street Journal published an article on an experimental group therapy program out of Memorial Sloan-Kettering Cancer Center in New York. The 8-week program, known as meaning-centered psychotherapy, helps patients with Stage 3 or 4 cancers overcome their biggest challenge which the psychiatrist who developed the programs says is to live in the space between their diagnosis and eventual death. The theory behind this therapy is based on the work of Viktor Frankl, an Austrian psychiatrist, who survived Auschwitz and lived to write about his experiences. Dr. Frankl’s conclusion, after surviving Auschwitz and losing several family members including his wife, was that even in the most painful and dehumanized situations, life has potential meaning and therefore even suffering is meaningful.

This article immediately caught my attention because this type of therapy is so similar to the type of ‘treatment’ I practice with my own patients and one we discussed in our book, “ Coping with Cancer.” In our book we ask the reader to think through and if possible “journal” the following:

• “What do I believe to be my life mission?”
• “Why do I value these activities?”
• “What are my most important daily purposes? Why?”
• “What do I need in order to continue or begin to accomplish my activities?”
• “Can I realistically continue to meet these daily activities?”
• “If I could change one thing about my life before my illness, what would it be? Why?”
• “If I could change one thing about my life after my acute illness, what would it be?”

As I rested in my chair last night with the soothing background of white noise around me, I read again Viktor Frankl’s book, “ Man’s Search for Meaning.” He knew of suffering certainly at a level far beyond my own experience but similar to some of you who are in the midst of struggling with an invasive cancer or caring for a family member who just can’t seem to get a break from one bad scan or test after another.

The book said to me – keep talking to patients about their meaning in life in their day to day events. I can’t tell you how often in my work I connect with a young patient who struggles with “mothering” as she traverses treatment after treatment. Some of these young women continue trying to balance work and mothering and are challenged with what has to give as they add cancer treatments to their list of “things to do”. I simply advise each of them that they now need to be the mother they want to be and ask each what does that look like for them. There is so much more I could write on this but not today. I want to write about being with my family for the first time since I too started down the cancer path.

I was greeted at the Minneapolis airport by my sister, Janet, who immediately drove me to meet more family at the hotel. Janet, a sister that is always there for me – believing in me, helping me through the years and now my unending supporter. My family of five sisters and a brother, my mother, nieces, nephews and more haven’t seen me since my breast cancer diagnosis. I look terrible with my short, short hair, no eye lashes, pale skin and my 10-pound weight gain (although now closer to 5 pounds since I started the calorie counter on-line program).

A moment in time struck me as the most heart-wrenching last night when my eldest sister, Barbara, said, “Ronnie, I can’t believe you had to go through this cancer. I don’t understand it. Why? It doesn’t make sense to me. I sometimes just cry about it.”

So, all this time there I was in Michigan living the daily experience of learning about my diagnosis, surgery, going through chemotherapy and its aftermath, walking that long walk into the radiation treatment day after day for 33 days, only to learn that I didn’t cry alone. My sister cried too. Nothing could have been said this weekend that has impacted me in such a way and that meant more to me than mere words can articulate. I will remember it forever.

More time with my family today and then back to Michigan tomorrow.

Thoughts and prayers are with you.

Love,

Veronica

Last week of radiation

Dear Family and Friends,

The last week of radiation treatment begins tomorrow. Five more days and another milestone completed!

Linda colored my hair again on Saturday. I have about a quarter of an inch all over my scalp. I’m considering going to work without a scarf tomorrow. I spent all day Saturday without a baseball cap or a scarf and felt okay. I’ll see how I feel tomorrow. If I can work up the courage to go without a wig, scarf or hat to work this week it will mean I went 10 ½ weeks from the end of my last chemotherapy (quite bald) to having enough hair to comfortably go “public.” Total time from complete hair loss to what I consider “publicly presentable” may be 18 weeks altogether. When I put it into weeks like that I feel that it wasn’t too bad.

I have been able to walk/jog every morning this week except one. I’m up to two miles in 30 minutes. I have a ways to go to get back to my previous endurance level but at least my routine is returning. I am continuing with the use of the website calorie counter and trying to follow a diet heavy on vegetables, moderate on protein and fruit and low on breads and other carbohydrates. Really, the calorie counter is a misnomer – I primarily use it as a food tracker so that I can return to being cognizant of what I’m eating. For the last four months or so, I have just eaten for the sake of trying to rid myself of the ever-present nausea. That, unfortunately, led to a nearly ten pound weight gain which is a lot of weight on my not quite 5’3” frame. I no longer have the nausea however the one chronic complaint that still lingers is the constant fatigue. Food rarely helps (even comfort foods do little to improve my energy).

We’ve initiated a new program at the office (Cancer Care Associates) to enhance our initial pre-chemotherapy teaching visit. The first priority is to meet each patient before the day of their first chemotherapy. There are times when this is not feasible but for the most part, we are able to ensure that it happens. We do this because so many of the patients (including myself) felt totally overwhelmed on the first day of treatment.

Patients expressed concern that they have a hard time understanding and remembering all the post-chemotherapy directions given while sitting in the chemotherapy chair waiting for the first treatment. Nothing like a compassionate nurse trying so hard to make us comfortable so that we can absorb all the new information; and yet the visual we have chair-side is a table overflowing with needles (long ones too!), fluid bags (clear and colored), tape, gauze, blood lab reports and teaching material. It was overwhelming for me and I’ve worked in oncology for 25 years. I can’t imagine how it is for someone who has no oncology or medical experience.

The new program offers not only a chance for patients to learn about their chemotherapy treatment in a quiet office with no distractions but also provides a visit with a financial counselor to review the out-of-pocket expenses each patient might have for treatment as well as any other requirements the patient must adhere to with the insurance carrier. I was halfway through my chemotherapy treatment program before I realized how much my out of pocket expenses would be. Chemotherapy is expensive (mine was approximately $4000 per treatment not including the doctor visits, blood labs, and the unexpected three day hospitalization) and I wanted to know how much it would cost our family. I wasn’t going to refuse treatment because of the cost but I wanted to know so we could plan as much as possible. It is my hope that our patients find this program to be positive and beneficial as they start their own journey.

Anne heads back to Macomb, Illinois this week for her second year as a Graduate Assistant and Assistant Soccer Coach at Western Illinois University. She’s been so helpful this summer and it’s been so much fun having her home. I will miss her terribly. When the kids were young I was well aware that the “days were long but the years speed by quickly.” It wasn’t until the house was quiet (and clean) that I saw just how quickly those precious years really did go by.

My thoughts and prayers are with you.

Love,

Veronica

Dear Family and Friends,

Today is the start of the last eight days of radiation treatment as well as the switch from full breast radiation treatment to what is referred to as the ‘boost’, where the radiation rays are directed only where the cancer was removed. My breast is red, sore and sometimes itches but the doctor says it looks “good”. I’m extremely tired by afternoon.

I had another blood test yesterday and all my numbers are within the normal range. This is the second consecutive time blood levels are within normal limits since surgery in February.

My hair is a little longer everyday but my eye lashes have all but disappeared and my eye brows have thinned considerably. I couldn’t be more surprised by this happening so late after my last chemotherapy treatment which was 8 weeks ago.

All in all I’m looking forward to the end of my trips to the hospital for radiation treatments and a return of energy and hair!

Love,

Veronica

Dear Family and Friends,

I’m in the home stretch of radiation treatment with just two more weeks to go. I haven’t worn a wig in ten days and it feels great. I wear a scarf at work but soon I’ll ‘retire’ that too. I seem to have forgotten over the last decade that I’ve been a blond how dark my hair really is. I’m really a brunette and now it’s mixed with gray.

Yesterday was the conference for Nurse Practitioners that I mentioned in an earlier blog. This was the first lecture I’ve given since my diagnosis. I tried to attend a dinner the night before but fatigue hit hard late afternoon and I just couldn’t make the trip downtown to the Westin Book Cadillac in Detroit. I had plenty of energy the morning of the lecture and I was fortunate that they scheduled me early to give the talk. Surrounded by fellow nurse practitioners was particularly comforting – most either worked with patients in medical crisis like cancer or were touched by cancer themselves. It felt so ‘normal’ to be teaching again.

Thinking about teaching reminds me that I wanted to share an article in the Wall Street Journal titled, ‘A New View, After Diagnosis’ http://online.wsj.com/article/SB20001424052970203547904574276434196118914.html. The article describes a study involving a new group therapy based on Viktor E. Frankl’s work which is best described in his book: Man’s Search for Meaning. I absolutely agree with this and I’m pleased someone is studying it. I’ve offered groups like this in the past (long before this study) as well as helped patients in individual therapy answer some of the same questions. If you’re interested in learning more about this topic see pages 30 & 31 in our book: Coping with Cancer: A Patient Pocket Book. I may start another group like this in the fall – it’s only eight sessions and just like the article describes, patients seem to find courage to face the adversities inherent in the treatment of cancer.

My thoughts and prayers are with you.

Love,

Veronica