Just when you think you have control...

Just when you think you have developed some control over the events of your life, something happens to remind you how wrong you are.

My hair was growing. All summer if grew, fractions of inches per week. It was coming in, all over my head and thick. Before I went to Phoenix, I got a haircut. Mostly to trim things up, keep things even, etc. A couple of weeks ago, on a Wednesday I noticed a couple of flipped up ends. No big deal...hair is like that. When I got out of the shower the next morning, I had curls. Not a few. They were all over my head.

This is cancer's way of reminding me who is in charge.

If you haven't seen me with curles, here's a visual for you.

Brillo pad.

Poodle.

My mom's perm in the 80s.

As an adult, I have never had curly hair. My mom alledges I had curly hair as an infant but that remains to be proven. But today...I have curly hair. Gray and curly. Like a brillo pad. Or a poodle.

Mary looks at me and reassures me that the curls are going away...that the back is not as curly as it was...that I look beautiful.

The nurses I work with tell me my hair is great...or fantastic...or like some model from J.Jill. I just flipped through their catalog and saw no one who looked like me. Gray, curly hair is something our grandmothers have. Models and our friends do not.

With the approach of Halloween I guess I can approach this in two ways. It can be an opportunity to be something that I am not (a character, a costume) or something that I am. I guess it depends on whether you are a glass half full or half empty kind-of-person.

Each morning I check. Is it still curly? Then I remember that I am thankful to have hair. To be on this side of my cancer. To be able to worry about hair.

Then I rejoice.

A Grand Slideshow

The Dark Place

A couple of weeks ago I ran into a colleague at Children's who was diagnosed with breast cancer two years ago. We started talking. We were never close, just colleagues. Immediately we started comparing note: diagnosis, stage, treatment plans, surgeons and oncologists. It is amazing to me that when you meet another survivor, the talk quickly becomes the intimate details of your personal course with the disease. Kind of like women needing to share birth stories I guess. Or perhaps it is because an unspoken understanding exists. Whatever it is, we were standing in the professional staff lounge talking. She had just had her annual check and things were going well. She then asked me if I ever went to the Dark Place...that part of your mind that thinks about the other side of the statistics. You know, the 1% of women with my kind of cancer and treatment who still die from the disease...the Dark Place.

I had to admit to her that I traveled there from time to time but really tried to avoid thinking about that. Call it denial if you'd like but I am not planning to be that 1%. But what if I am. What if that sore spot on my chest is a metastasis? I had my 6-month visit with my oncologist last week. Here was pleased with how well I am doing. All labs and cancer markers (CA27-29) returned to normal and in the case of the cancer marker, dropping like it should. We discussed routine examinations, CT scans and the need for chest x-rays. He told me he isn't too sold on doing alot of routine diagnostics. When I asked him more about this, he (essentially) told me that early diagnosis of breast cancer complications doesn't really change much except that you start your treatment 'weller', before the cancer makes you too sick. I didn't find this very encouraging or comforting at all. What I heard him say is that if I experience a recurrence, there isn't much to be done about it. He also told me that most recurrences are diagnosed within the first two years after treatment.

I left the appointment with Zander feeling relieved that things are well for right now. By the time I got home, I was in the Dark Place pondering the question of how I should live my life knowing that I have a greater chance of dying young. I don't know that I have answered that question yet. I know that I need to keep myself living in the moment, doing my best work and giving my best self whenever possible. But there is so much more that I want to see and do in my life.

For a start, I went on a mini-adventure yesterday. I am in Phoenix right now, to attend the National League for Nursing's Education Summit. It begins on Wednesday but I have been here since Saturday. Yesterday I drove up into the mountains through Sedona and Flagstaff and on to the Grand Canyon. It was a long, and sometimes boring drive that I am so glad I decided to do! Standing at the edge of that canyon helped put me into perspective with the rest of the world. I am such a little part of all that is around us and came before. The natural beauty around us is incredible.

I felt so fortunate to stand there and take this all in. Taking time to just be and observe is not something that I do well or often. I am tooooooo busy for that. I am so glad that I took that time yesterday.

So how does the Grand Canyon tie into the Dark Place? On the drive down the mountain last evening listening to some good music and sipping some good coffee, I reflected on the day. It was an excellent adventure. I began to think about how fortunate I am.

Today I am healthy and have the means to enjoy some travel and new experiences. To do that and enjoy all that I have, I must stay in the light. Going into the Dark Place limits my vision. It interferes with my ability to see what is all around me. It limits my life experience.

I am sure that I will venture into the Dark Place again from time to time. I am hopeful that my visits are short and needless. I hope that I will have the ability to travel back into the light and all there is for me.

A ps on my excellent adventure. It was missing one essential element: Mary. To have her experience this place with me would have made things more interesting and exciting. I miss her.

Reflections on 3 Days

It's been quite a number of day since my initial breast cancer diagnosis. Some of those days were very difficult and painful. Others were easy physically but emotionally trying. The days that I spent working with the Breast Cancer 3-day were quite enlightening. An important transition occurred for me this past weekend. I am still not sure that I can quite articulate it but I am closer.

I made a transition from patient to survivor this weekend. Up until last week, I viewed myself as a woman with breast cancer. Being among thousands of women this past weekend helped me to rethink how I view myself...One of the questions asked over and over was "Why did you become involved?" When asked this, I started out by saying "I have it." But then I began to think more critically about this response. I was diagnosed, had bilateral mastectomies followed by chemo. I have been cleared by my surgeon and my oncologist. I don't HAVE it anymore, I HAD it. I am no longer a patient, or as some would like to think, a victim. I am a survivor. I got through it. I am done with treatment. I am back to school and work in the ED and soon, hockey. I am returning to my life as it was before I was diagnosed...or at least as much of my life as I can because I know that my life will never be the same again. Having lived through a cancer diagnosis and treatment permanently alters one's life and perspective.

Today I am a survivor of a disease that still kills thousands of women, and some men, each year. While it has not quite been six months since my diagnosis, I have undergone some incredible transformations. Seeing myself as a survivor is just one of them. Each day it seems as though I learn something else.

The 3-Day Walk

This past weekend was an incredible experience for me. I cannot yet, put my feelings into words. At this point, I will just share some photos...

Luck Revisited

When my cancer was diagnosed, well meaning people told me I was lucky because it was diagnosed early, that my lymph nodes were not involved, that I had health insurance. While their sentiments were true, and I know, well-intentioned, I did not feel lucky. What was lucky about being diagnosed with cancer? What was lucky about losing your breasts and undergoing chemotherapy?

Today, nearly six months after my diagnosis I am able to consider my luck in a different light. Yes. I was fortunate that I was diagnosed early, that my lymph nodes were not involved and that I had great health insurance. I was also fortunate to have a very supportive network of family and friends and I was very fortunate to have a relatively easy time though my chemo. What I am most fortunate to have is have had the opportunity to enjoy the summer and turn 49. I also have a different attitude toward returning to school this year. Typically I begin to dread the start of school. It means the end of sleeping late, reading fiction and wearing flip flops. This year it signifies that which is normal...being able to go to work.

I am also fortunate to be able to participate in the Breast Cancer 3-Day walk. The walk officially starts tomorrow and there are estimated to be 3,000 walkers. I have volunteered to be a part of the medical crew and am assigned to work in the main medical facility 'in camp'. Today I have a training session to attend and am very excited to do my part. Look for an update next week.

So back to luck. It's all in how you define it. And today, I feel lucky.

You've missed the boat...

The first Taste for the Cure is a wonderful memory. 19 guests, a beautiful summer evenings and lots of food and wine. The second cruise schedule for August 21 is FULL! So if you were thinking of coming, you've missed the boat...literally. If you RSVPed before today, you've got a spot.

Another Taste for the Cure

Here's another opportunity to join the fight against breast cancer. As many of you know, the Breast Cancer 3-Day walk is fast approaching. Another one of our friends has made the commitment to walk: Shelly Swenson. She needs to raise $2200 in pledges to participate and she needs your help... so due to popular demand:


Another Taste for the Cure!

Who: You and your guest(s).

What: Wine-tasting party.

Where: Aboard Mary and Mary's boat on the beautiful St. Croix River.

How: Bring your favorite bottle of wine to share and a $20 (suggested) donation. Appetizers and non-alcoholic beverages will be served. If you don't want to do the tasting part, just come along for the ride!

When: Tuesday, August 21 at 7 pm. We will return to the dock by 10 pm.

If you can't make it for this fun and relaxing evening, you can still contribute funds to Shelly by clicking: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=202293&lis=1&kntae202293=5EACAE5F978F4B7286199A78D874C5A4&supId=57913367

If you are intereseted in participating, please contact me at mackenburg@comcast.net or Shelly as soon as possible. The cruise is available to a limited number of guests. Be one of the cool kids and join us!

Taste for the Cure

Here's your opportunity to join the fight against breast cancer. As many of you know, the Breast Cancer 3-Day walk is fast approaching. One of our friends have made the commitment to walk: Noelle Olson. She needs to raise $2200 in pledges to participate and she needs your help...


Taste for the Cure!

Who: You and your guest(s).

What: Wine-tasting party.

Where: Aboard Mary and Mary's boat on the beautiful St. Croix River.

How: Bring your favorite bottle of wine to share and a $20 (suggested) donation. Appetizers and non-alcoholic beverages will be served. If you don't want to do the tasting part, just come along for the ride!

When: Sunday, August 5 at 7 pm. We will return to the dock by 10 pm.

If you can't make it for this fun and relaxing evening, you can still contribute funds to Noelle by clicking: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=202293&lis=1&kntae202293=FFC2FA8F52264292AA2E9A15FDA5C52F&supId=174202004

If you are intereseted in participating, please contact me at mackenburg@comcast.net or Noelle as soon as possible. The cruise is available to a limited number of guests. Be one of the cool kids and join us!

That which doesn't kill us makes us stronger...

Those words have become our mantra this week.

First, a cancer update. My hair is growing back (appears to be gray, just like it left) and I feel great. The fatigue is gone and I am able to work my shifts in the ED without too much chemo brain. I still doubt myself at times and double check my drug calculations but that's about it. Tamoxifen does have a few side effects. Most notable are the aches I feel and the hot flashes. The aches is bone pain and isn't enough to stop me from doing what I want but is enough that I feel it. In fact, yesterday I noticed that I didn't hurt and realized I had forgotten to take my drugs in the morning. I am also becoming an expert on hot flashes. I am having 2 kinds: flashes and flashettes. The flashettes happen many times per day. They are short episodes of "boy, I am really hot right now" and aren't too big of a deal. The flashes are not so good. These last longer and a more significant with feelings of nausea, light-headedness and profuse sweating (like change your clothes). Fortunately these only happen every couple of days or so. Taking prescribed medications regularly does help to reduce the side effects so I faithfully take my Tamoxifen hoping that the side effects will begin to subside.

Yesterday Mary and I had to make the very difficult decision to put our Great Dane, Olivia to sleep. About a month ago we noticed she just didn't seem like her usual self. We took her into the vet for the first time on June 21. From there we have had multiple vet visits, x-rays and CT scans, lab tests, and IV fluids. The diagnosis=diskospondylitis. This is an infection of the disks of the spinal column usually caused by a bacteria or a fungus. We spent the last 10 days of her life giving injected antibiotics as well as potent oral ones. She did not respond to them and we watched her grow increasing disabled. The last time she was able to walk on her own was July 5. Since that time she became increasingly paralyzed, incontinent of urine and stool and her back paws were cool to the touch during the past couple days. We took her in yesterday knowing what we were likely to have to do but hoping in our hearts that our trusted vet could suggest one last thing to try. Unfortunately, disease won and Livie went to sleep with her head in Mary's lap...her favorite human on the earth.

Mary and I often reflect on how lucky we are. We both have great jobs we like, a home we love and the ability to do pretty much as we want. We get to travel and enjoy our friends and family. But we have felt challenged this year. First the loss of Greta then my cancer and now Olivia. Losses. Certainly not on par with a death but challenges nonetheless. Sometimes I wonder if several "smaller" challenges are more difficult to manage than one big one. It feels like we have recovered from one and then are faced with another. Hence, our mantra for the week. That which doesn't kill us makes us stronger.

OK...we are strong enough for now!

The 3-Day Walk

The Breast Cancer 3-Day is coming up. Haven't heard of it? It is a 60 mile walk held over 3 days to raise funds for breast cancer research. It is sponsored by the Komen Foundation (the same foundation that sponsors the Race for the Cure) and is held in several cities across the country. The Twin Cities walk is being held August 24-26. I have signed up to participate as a medical volunteer this year...I wasn't sure I would be up to walking 60 miles by the end of August. My friend Shelly Swenson is walking and her team "Treasured Chests" will honor me on their t-shirts. Perhaps you would consider donating to Shelly in her efforts to raise $3000 for the cause. You can do this easily online by following this link:
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=202293&lis=1&kntae202293=00188B7D806E4C6DBE472D414A8E08E5&supId=57913367

Many thanks to everyone is their efforts to find a cure for this disease!

Back at Work

I've been back a work for a full week now, completing 5 full 8-hour shifts! I know that doesn't seem like a feat to most people but coming back from an illness, it is a big deal and I am proud of myself. I haven't been very productive in the evenings (I've been working day shifts thus far) but that's ok too. Who really cares if the folded laundry is sitting on the dining room table and dog toys are everywhere?

Returning to work has been an interesting experience. Somewhere in my mind, I thought I would just come back like nothing had happened. That wasn't the case. The first day I was greeted with a beautiful floral arrangement from some of my co-workers (THANK YOU Kellee, Donna, Masha, Marsha and Kristen!) and lost of people surprised to see that I looked so well. Like me, many people have the idea that people with cancer look awful and I guess I don't. I am still bald though and the stares and second looks continue.

Because of the nature of our work, I don't often work with the same group of people more than a day or two in a row. That means each time I come to work I am asked the same questions. Of course they start out with "How are you?" but what people really mean is "How ARE you?" Thankfully I am able to answer truthfully that I am doing very well. But I have to admit (this is hard to say without sounding snobby) it's getting old. Each time someone asks me that or wants to hear more about my treatment, status and prognosis (again, because they really care about the information) their questions bring everything back up for me. Returning to work was a turning point for me. Coming back to this place where I have a certain level of expertise and satisfaction allowed me to put an ending point on my cancer treatment. It was done~see...I'm better and I'm back to my usual self. But the questions push me backwards a bit. Just a bit each time but when you've worked in a place for 27 years, you know a lot of people!

I know this will decrease with each shift I am here. It has been a good week. I have been very happy to be back doing my job with my chemo brain dramatically improving. Perhaps I just had to start using my brain a bit more! And as always, the patients are delightful. Yesterday I had a very philosophical discussion with a 6-year-old girl who has leukemia. She was in for a twisted ankle and had just had a chemo run the day before. She still had her hair and we talked at length about why she had hair and I didn't. Enlightening.

And that is why I love my job.

Going back.

Today I get to do something that alot of people don't like to do...go to work. I am going back to work in the emergency department (ED). I haven't worked a shift since February 13, right before my mastectomies. That is a long time to be off and yet, seems like just yesterday in many ways.

Lots of women with cancer work throughout their treatment. Our friend Liz is a firefighter with Mary who did this. She moved to a "quiet" station, tried to avoid direct contact with sick people and rested when she could. Even my oncologist encouraged me to work during my chemo, and I did~at the college. But I couldn't do both. There was no way I could avoid direct contact with sick people as that is the very nature of our job in the ED during the winter months.

There have been some benefits to being away from the ED. Certainly the most obvious is being off during the busiest time of the year. But being away has given me the time I needed to recuperate and heal, to stop and rest when I needed to and to wallow in my self-pity without having to be nice to anyone else when I wanted to. But I think those days are behind me.

I have missed being in the ED. When you really think about work, it is an important place we go to socialize. We get a certain amount of esteem and hopefully, respect from our work. We feel a sense of satisfaction, challenge and reward for our work. Sure, some days are better than others and some days, I would rather not go but overall, I like my job and have missed it.

Today I also move from being the patient to being the health care provider. I am on the other side of the chart providing rather than seeking the medical care and advice. I'll be the one with the pen in my hand, listening and trying to figure out how to best help my patient. That frightens me. I worry about chemo brain. I worry about making math or medication errors. I worry about making the right or the best decisions for my patients. Today...I will double and triple check everything. I will doubt myself and everything I think I remember. Thankfully I am working with physicians that I trust and respect, who I know will not think less of me if my questions seem silly or dumb. They will help me.

Today...I am going back to work. Today I feel like a survivor. Cancer is becoming a thing in my past, something that I have dealt with. Of course I will think about it and worry about it and it will touch my life again but returning to work is helping with my that perspective. I am finally moving on. I am doing something normal...I am going to go to work.

Coming back.

I have finally confirmed what I had always thought was true...a weekend on the river will cure whatever is ailing you.

We spent the long weekend on a houseboat on the St. Croix. A HUGE rented houseboat with a group of wonderful women we are fortunate enough to call friends. We left the dock on Friday afternoon with plenty of food, beverages and high hopes for great weather. We were not disappointed! Ok...a bit of rain on Saturday but that just caused us to move from the table out on the front deck to the one inside.

But soon we were back out there, sitting around the table. The conversation didn't even stop. It just paused long enough to refill beverages and get settled again. By Saturday afternoon the sun was out and it was getting warmer. Sunday was an incredibly beautiful day. We had difficulty keeping up with moving our chairs to maximize sun exposure, reading, napping and chatting. We ate some wonderful meals (THANKS Pam!) and enjoyed some nice bonfires on the beach.

During the weekend I didn't nap...except for a short one on the beach. When we got home on Monday evening, I was beat and ready for bed early. But yesterday I was struck by something. I feel like my old self. In fact, as I thought more about the weekend, I felt more like my old self over the weekend too. Perhaps it was being in a place that I love, doing something that I love. Perhaps it was feeling the warmth of the sun on my skin. Perhaps it was being among a group of wonderful women. I am not sure what the reason for this feeling was and it is not important to me to figure it out. What is important to me is that I feel it.

At several points during the last few months, I wondered if I would every feel like myself again. I hoped so but was afraid there wasn't an old self to feel like. I worried that my cancer and its treatments would somehow alter me as well as my physical self. Who would I become as a cancer survivor? Would the assets of my personality be enhanced or would the deficits become more prominent? Much of this remains to be seen. What is clear right now is that I am slowly returning. The veil of cancer is lifting away and I feel as though I am coming back. And for the days of this past weekend, I forgot I had cancer. Oh sure, I had to put sunscreen on my bald head. Oh...and there was the debate in my head about whether you are topless if you take your shirt off and have no breasts, but aside from that...I forgot. I was just me. Who I am right now, enjoying myself. And it felt great!

Decoratively Bald

This week I got a new tatoo. Not a permanent one, a temporary henna tatoo on my head! Long before I was bald I found a website called Chemo Chicks (http://www.chemochicks.com/home.htm) where they sold different types of products for women going through chemo therapy. One thing they have are stencils for temporary head tatoos. I ordered one along with the henna kit. Finally this week I went to see my friend Chuck (my hair guy) and had one applied to my bald noogin.

The first step was to transfer to my head. Some eucalyptus oil first then the ink from the paper transferred to my head.

From there, Chuck used a small plastic applicator to trace the pattern with henna.

After that the henna stayed on for 6 hours. I was able to wash it off later in the evening and I was left with an iteresting and intricate pattern on my head. It should last a week or so and is a fun alternative to being bald!

It's over.

My chemo is done and it's time to feel better. That's what I think but apparently that is not what my body thinks. I was under the misguided assumption that I would finish my chemo and feel better and be done. Today is 8 days past my last treatment and I feel awful again. Thankfully Mary is home and let me sleep for hours.

I just finished talking to Lucy, one of my favorite Children's Hospitals and Clinics pharmacists. I wanted to know more about the pharmacology of my chemo drugs, doxorubicin in particular. That seems to be the one that has the most significant side effects. She kindly informed me that it takes 21-28 days after your last treatment for your body to completely clear the drug. Great. My last treatment was May 14. Some not so quick thinking (chemo brain) and I figure it will be mid-June before this drug clears my body completely. I am assuming that I will continue to feel crummy and tired until then. I am also assuming that it will take a while before my hair comes back in, although I am getting used to being bald and don't even see the stares of people any more!

Here's the other thing that is over~chemo night dinners. A nice tradition came out of my chemo schedule, dinner with Mom and Bob. I should be more clear. Mom and Bob came over each Monday afternoon that I had chemo and cooked dinner for Mary and I. Sometimes Pat and Mark would join us as well. It became something that I looked forward to...visiting with the two of them and a great "mom" dinner. This is a photo from my last chemo dinner: roast beef and mashed potatoes. What says Mom like mashed potatoes?

Another thing to check off.

I can check another thing off on my list for breast cancer care. Yep. I am done with chemo! I finished yesterday. My sister and my niece were there with me when Wayne pulled out my IV and announced to the room of patients getting chemo that "Mary is done with her chemotherapy!" It was wonderful to hear these words announced. I walked out of there with a spring in my step and a congratulatory coffee mug.



So...what is next? I haven't really thought too much about the next phase of my care. I was really trying to take it one step at a time. Right now, I have a month off from 'cancer care' with no appointments scheduled at all. Hopefully, I will recover easily from this last chemo and will see my hair start to come back in. I am returning to work on June 1 and for those of you who know how stubborn I am, you know I will be returning to work on June 1! I may still be bald, but hey...it's been said I have a nice head!



When I go back to the oncologist in June, I will be started on Tamoxifen. This medication comes in a daily pill that has been used for more than 20 years to treat patients with advanced breast cancer. It is now commonly used as an additional therapy following primary treatment for early stage breast cancer. It works by suppressing the production of estrogen-a hormone made by your ovaries which promotes the growth of cancer cells. Sometimes tamoxifen is called an "anti-estrogen" and helps prevent the original breast cancer from returning. Like any drug, there are positives and negatives to being on tamoxifen. Some women experience a lowering of their blood cholesterol levels and slower bone loss (osteoporosis). But...tamoxifen does have side effects (NCI, n.d.). In general, they are similar to the symptoms of menopause including hot flashes, headaches, fatigue, nausea/vomiting, vaginal dryness and/or itching, and skin rashes. Weight gain is another side effect (ACS, 2006). Tamoxifen also increases the risk of uterine and endometrial cancer In one study, women who took tamoxifen had more than twice the chance of endometrial cancer. Data from one large treatment study also found there is a small increase in the number of blood clots in women taking tamoxifen; and are at increased risk for developing cataracts, corneal scarring and retinal changes in the eyes. Tamoxifen has also been known to cause liver cancer in lab rats but this has not been documented in humans. It can cause liver toxicities in humans though and in one study was associated with gastrointestinal cancer (NCI, n.d.)



By my read, this is not a great drug to be on. The question becomes: Do the benefits of tamoxifen in treating breast cancer outweigh its risks? According to the National Cancer Institute (n.d.) the benefits of tamoxifen as a treatment for breast cancer are firmly established and far outweigh the potential risks. But I keep going back to this question: if I have to take a drug for the next 5 years that has so many side effects, why not just remove the problem-the ovaries. They are the organs that produce that estrogen that the tamoxifen is suppressing. From there I think, why not remove the uterus too...and any other useless organ that can just become a haven for cancer cells?



Of course I had to ask Zander, the oncologist this question. He said it was an option but the surgical risks may be greater than the benefits it I was able to tolerate the tamoxifen. Not getting the answer I wanted, "oh...great idea! Let's schedule you for surgery" I had to ask Chara, the oncology NP. While she gave me more information about tamoxifen and long-term use (more than 10 years), she essentially agreed with Zander. So we decided on a 1-year trial of tamoxifen. If I'm having problems with it, off to surgery I go. If not, stay the course.



So what else is store for me? Visits to the oncologists every 3 months. These will include blood draws for a blood tumor marker called CA27-29. This marker is found in the blood of most women with breast cancer. Typically it will remain at a stable level, somewhere less than 34. I will have it drawn and observed over time. An increase in the level of this marker can be a cue that my breast cancer has recurred or I have developed a cancer of the colon, stomach, kidney, lung, ovary, pancreas, uterus or liver (medicinenet.com, 2006). These cancers will also cause an increase in CA27-29. During my visits I will also have a chest x-ray or a chest CT scan to look for recurrence in the bones of the chest. That is one of the more common sites of breast cancer recurrence.



So much to look forward to! I will do it all. I want to be able to look back knowing that I took every step I could to treat my cancer and increase my chances for a long and health life. I've still got quite a few things to do. And tomorrow, we are going to look at a boat.


References


American Cancer Society [ACS] (2006). Hormone therapy. Retrieved May 15, 2007 from
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4X_Hormone_Therapy_5.asp?sitearea=

Medicinenet.com (n.d.) Definition of CA27-29. Retrieved May 15, 2007 from http://www.medterms.com/script/main/art.asp?articlekey=39199

National Cancer Institute [NCI] (n.d.) Fact sheet: Tamoxifen: Questions and answers. Retrieved May 15, 2007 from http://www.cancer.gov/cancertopics/factsheet/Therapy/tamoxifen

Pictures from the Race

I finished.

I finished the 5 K walk. Mary told me that if I had won the race, I would have gotten the cure. Oh well. I'll have to be satisfied with finishing my chemo tomorrow.

The race experience was incredible. I had no idea what kind of impact it would have on me. I can't put it all into words yet. I have lots of photos that I will post. I am exhausted tonight yet somehow very satisfied and content.

Race for the Cure

The Race for the Cure is just a couple of days away. According to the race website, they had 45,000 participants last year and this year are hoping for 60,000. I will be there with my family members, my friends, and my co-workers. I will be walking and hoping that I am able to finish the 5K route.

Today I stopped at Children's ED to visit. It is always so bittersweet to go there now. I am always met by such enthusiasm and always feel a bit sad that I am not a part of the team right now. I miss the people so much. I think you don't realize how important your work place is within your social network until it is not there. Certainly I've had contact with people I work with~lots of cards, phone calls and visits but going in there is different. Today was especially difficult and this will related to the Race for the Cure!

Children's Hospitals and Clinics of Minnesota (http://www.childrensmn.org/) has always been a strong supported of the Race for the Cure. This year there are more than 300 employees throughout the organization who will be participating. They will also have a booth at the associated health fair...stop by and tell them what a great place Children's is to work for because it is. But this year there is more. Karen A., one of the nurses in the ED designed and took orders for a special Race for the Cure t-shirt for our department. It is a stunning pink and white tie dyed t-shirt. The front of the shirt has the corporate logo displayed. The back is...well, beyond description.

I had heard that Karen had taken on this project but I had no idea of the magnitude. She took orders for 44 shirts and now that they have arrived, she has had requests for more. I would even like to order a few more! These are the shirts that my co-workers will be wearing on Sunday when they participate in the Race for the Cure. She called me yesterday to let me know the shirts were in. While I was there today, I picked up my shirt. I stood in our office and unrolled it and admired the front. It was really pretty. And then I looked at the back...

Amazingly, I did not cry. Until I got back into my car, that is! I cannot believe that Karen and the ED did this for me. I do not deserve this attention and support! I am just one of many thousands of women who have had to deal with this disease. And I am not even that nice at work sometimes! I get crabby and short-tempered. I forget to say thank you to the staff and sometimes take my co-workers for granted. Despite my significant shortcomings, they did this for me...because they care.

The lessons of this cancer diagnosis have been many. Today I add humility to that list. I am so fortunate to be able to work with such a caring and wonderful group of individuals. They are more than co-workers to me. They are a part of an ever-growing support network of concerned others. I am so thankful to them, for their support, encouragement and love.

On Sunday at the race, look for my co-workers. They are the ones who will be wearing these beautiful t-shirts. Karen will be running. If you see her, let her know how wonderful she is. In fact, if you see anyone wearing one of these terrific tees, let her/him know who wonderful she/he is!

And please, don't forget. Mary and my sister Pat have planned an open house lunch back at our place. We're hoping to be home from the MOA by 1 pm. Please stop by if you can. We would like to thank everyone for their kind support of me and my entire family throughout this past 4 months.

I am celebrating another thing...Monday, May 14 is my last chemo!

Mammograms

Someone I love needs a mammogram. She doesn't want to get one and I am having trouble understanding this. No woman looks forward to her mammogram. It doesn't usually come with presents or fanfare but it is something that we need to do. It is a part of routine health care for women. It is a necessary evil.

The first time I had one, I was a bit nervous. Someone told me it was like having your breast driven over with a truck. Great. But I was determined as someone I worked with had just been diagnosed with breast cancer through a routine mammogram. Into the x-ray room I went. There I met a very compassionate woman who described the procedure to me, talked me through it, told me when things were going to be "uncomfortable" and when it would be over. The entire thing took less than 15 minutes. Was it fun? No...but it was necessary. And each year since then I went in, never looking forward to the procedure with happy anticipation but always ready to face it. It was the mammogram on 1/30/07 which quite likely will give me many more years of life. Great wisdom out of painful experience~what a gift I have been given.

So...back to this woman. She's my age, intelligent, well-educated, capable and yet, she refuses to have a mammogram. In discussions with her I can't get an answer about what is so frightening to her. "I just don't want to do it" seems like such a lame response, particularly when people around her will be living healthy lives as a result of a simple x-ray. Perhaps she knows something she isn't sharing. Perhaps she has found a lump and is too scared to know the truth. I can almost understand that. By now everyone in her life has been on her to have the mammogram and perhaps that is the reason for her inability to make the appointment. I'll never be able to really understand.

What I do understand is how much I love this woman, how much she means to me in my life and how difficult it would be to lose her. Perhaps that is what she needs to hear.

I have chemo brain!

Chemo brain is a real side effect of chemotherapy. Researchers don't talk much about it because they don't typically do cognitive testing on patients before beginning chemo so there isn't anything to compare it with (ACS, 2004). Other sources describe memory loss and mood change as commonly reported side effects of chemotherapy. I attribute the mood changes to fatigue but apparently the direct neurotoxic effects of chemo agents (or the metabolites), and hormonal changes induced by the treatment may all play a role. Dose and dose timing, age, genetic factors, and the specific chemo agents may also influence the extent, duration, and the type of side effects each person will experience (Lymphomation.org, n.d.).

What chemo brain feels like to me is being in a fog, Not all of the time, but a good bit of it. Kind of like waking up from a nap a bit disoriented, only this feeling is very difficult to shake and move on. I am not quite myself and definitely not a sharp as I used to be. I have been forgetting little things and it is difficult for me to multi-task. Through in a bit of fatigue and I can't be trusted to remember anything important! Some cancer survivors have report they know it is just something that they need to deal with. As they move further into their chemo cycle, the fog is easier to lift and life gets a bit easier (Sievers, 2006). For now, it is hard to write legible sentences and hard to read anything more difficult than the comics. I have been trying to read a cold war spy novel but had to give up...there are too many characters to keep track of!

What is most difficult for me about this particular side effect is the way it is affecting me emotionally. What if it never goes away? What if I am never able to trust myself and my professional abilities again? Of course, time will tell and other survivors report that the problem gradually disappears.

Chemo #3 was this past Monday. Zander (the oncologist) told us that each round would be more difficult for me. He was right, again. This was the worst so far. I was sick by the time we got home and went right to bed. I was able to get up for dinner and visit with my family but it was short-lived. I was back to bed rather early. Most of the time since then I have been sleeping. I get up to let the puppy out, play with her a bit, try to eat something and I am back asleep. This is difficult for me. I am not a napper and I often equate napping with lazy. Since I am now napping, I am therefore, lazy and I don't like to think of myself that way. The weather is beautiful that I would like to be outside digging in the dirt but the thought of those tasks seems insurmountable to me right now. Chemo redefines the term 'fatigue'.

I did have a big outing today though! I went for a short visit to Children's ED. I really miss everyone there so much! It was very nice to be there, catch up on the gossip and see people. I am looking forward to returning to work on June 1. I hope that I will be able to handle the job, particularly given my chemo brain. Thankfully I work with a wonderfully, caring group of professionals.


References

American Cancer Society [ACS] (2004). Seeking solutions to chemo brain. Retrieved May 3, 2007 from http://www.cancer.org/docroot/NWS/content/NWS_2_1x_Seeking_Solutions_to_Chemo-Brain.asp

Lymphomation.org (n.d.). Chemo brain. Retrieved May 3, 2007 from http://www.lymphomation.org/side-effect-chemo-brain.htm

Seivers, L. (2006). The fog and fatigue of 'chemo brain'. Retrieved May 2, 2007 from http://www.npr.org/blogs/mycancer/2006/11/the_fog_and_fatigue_of_chemo_brain.html

Puppy Update

It's been a quiet week for me spent slowly starting to feel better after last week's chemo. For Piper, it's been an exciting and busy week spent mostly, growing. In the past 2 weeks, she's gained 6# and grown 3 inches. Now at 13 weeks of age, she is 30# and 19" at the shoulder. We're still working very hard on getting outside in time to go potty and making some progress. We have been attending puppy school and thus far, she's working on sit/stay and down/stay. She seems to have sit mastered pretty well. She also has learned how to dig holes and her big sister's have taught her all about eating deer (and other) poop outside. She even had the chance to play with some busy 5-year-olds!

The first photo is by master photographer, Annika Johnson!

We've had some progress with big sister Olivia. They have been caught on several occasions, playing together. This occurs mostly outside but that's ok. Progress is progress. And please, don't tell Olivia. What she doesn't know won't hurt her!

There were even caught sharing the little dog bed. At the rate Piper is growing, she won't fit much longer.

Tomorrow is chemo #3...yea! I will be 3/4 done. No pity party this time. I am ready to get going so I can be done. As has become a nice routine, Mom and Bob will come over tomorrow afternoon to make dinner for us. It is so wonderful to come home and not have to think about dinner. Thus far, it's been really good stuff too! Tomorrow will probably be no exception.



Here's one more cute puppy photo. This is something we are both really good at~taking naps!

Photos from the Tournament

Team Mack

Stickin' Around

Other photos from both Team Mack's and Stickin' Around's games can be viewed at: http://www.kodakgallery.com/BrowsePhotos.jsp?&collid=62450694206.717928067206.1177428052568&page=1

An overwhelming weekend.

It was an overwhelming weekend for me. The Stick It to Cancer Hockey Tournament began last Friday. There were 77 hockey teams registered for play that covered 3 full days. There were womens and girls teams of all ages and from various parts of the region. To many of the teams, this was simply an opportunity to play more hockey in an organized and well-run venue. To others though, this was an opportunity to play some hockey while benefiting a cause that touches the majority of us~cancer. On Friday afternoon I spent the afternoon monitoring the silent auction area. As a job, it was not tough. I sat on a chair and watched people look at the donations and encouraged them to make bids. I did the same thing on Saturday for another 4 hours. During these hours I had lots of time to observe people. Apparently I was feeling a bit more philosophical than normal as my observations seemed to extend beyond your typical 'people watching.' There are two things that seemed to emerge as themes for me.

First, everyone is nice to a bald lady. I am not wearing a wig and I don't like wearing hats...they pinch my head and since I look like a pirate wearing a scarf, I am left to be bald-headed. So there I sat, bald wearing a volunteer t-shirt and some good earrings. Most of the people that passed by made a point of saying hello, good morning or some other pleasantry. Other volunteers and vendors in the area came by frequently wondering if I wanted or needed anything. Many people stopped to ask how my treatments were going or how I was feeling. One man stopped to tell me about his daughters who were playing in the tournament and how he had a discussion with them about cancer and why their teams were playing in this particular tournament. He wanted them to know it was important to give of themselves. A couple of women whose teams were playing in the tournament stopped to introduce themselves to me as they recognized me from my blog.

Second, everyone has a cancer story and many, many people want to share it. I heard about sisters, mothers and grandmothers with breast cancer. I heard about prostate and colon cancer. Some of the stories were tragic ending in the death of very young, vital people. Others were hopeful and inspiring...like my team mate Judy's Mom who celebrates her 10-year victory over breast cancer! I met her and she looks wonderful! And Judy's partner Lisa, whose mother is a survivor also. No matter what the story, there seemed to be an underlying theme. Everyone is afraid of the big C. And rightly so. Recent studies report that 1 in 3 Americans will be affected with some type of cancer some time in their lives (sorry...no citation, something I heard on MPR). It's an intangible force that can't be challenged directly and carries tremendous morbidity and mortality. It is more than most people can comprehend for their own lives.

I came away from this experience with these two new awarenesses and have to find a way to use them in my life. Why aren't people nicer to those with hair? What is it about baldness that makes us go a bit further for someone? Is it because they are obviously sick; and therefore, more needy? Perhaps I need to be just a bit friendlier, more cordial and willing to chat with those around me. The other lesson relates to the fear of cancer we live with. I have always believed that it did no good to fear things that were out of our control. Afterall, there was little we could do to prevent certain things. While that may still be true, perhaps we do need to fear cancer a bit more. It does come calling with pain and heartbreak, destroying people in its wake. I know that I will never be the person that I once was. My life is, and will be different. I hope that I will be better but maybe this experience will make me more cynical and bitter than I was. While there is no magic prevention plan for cancer, maybe those healthy lifestyle issues we talk about really can help. They certainly can't hurt.

During this weekend, there were some tremendously personal gifts as well. There was a group of women who renamed their hockey team Team Mack and skated their hearts out for me. There was my team, Stickin' Around who also posted my picture and story on their bench and locker room and scored all of their goals for me. There were key chains and bracelet links with my name on it. There was a beautiful and touching gift basket from my Stickin' Around friends. There is not a way to thank everyone for the gifts I received, both the tangible and the intangible. I am overwhelmed and I am just one of many thousands of women who live and survive with breast cancer. But I am lucky. I have a network of love around me that is vast and endless.

During the night I woke with a fever. I didn't measure it with a thermometer as it may have been exceeded the level at which I am supposed to call the oncologist. The fever came with a bit of a sore throat and a headache...most likely a viral illness preying on my altered immune system. I took some Tylenol and went back to sleep. Today has not been a great day but I don't have a fever but I did not get to return to the hockey tournament to watch my teams' last games. Neither team won their tournament brackets. But they are all winners...and they are my friends...and I am blessed.

Tomorrow I will publish photos from the tournament. Please stay tuned.

4:08 am

I am a professional sleeper. At least I have been up until this diagnosis. Now, the wierdest stuff gets me up and my mind going. This morning it was the puppy that started it; however, she is now sound asleep in the middle of our bed and I am in the kitchen, awake.

So what is going on my head that is preventing sleep? One would think it would be life-altering and profound questions but it is just stupid stuff like...I forgot to order the groceries, there's laundry to be folded, did the Wild win? (no), Olivia bit the mailman, there are student papers to look at, did I set up the online quiz for them correctly?, there is a faculty meeting coming up...and oh yea...I am craving macaroni and cheese. Not any mac and cheese-I want the stuff in the blue box that we all ate when we were growing up. Since we don't have that around, I guess I can substitute a grilled cheese sandwich...but what is in that bread that has kept it edible for so long?

See what I mean? Nothing earth shattering, just life's little irritations.

So it is now well after 4 am and I am eating my grilled cheese sandwich (with milk), trying to get a bit of perspective on all of this. I am not up thinking about cancer. I am not worrying about if and when I am going to have a recurrence. That is progress. My cold, bald head assures me there are very powerful drugs circulating in my body that are preventing that recurrence from coming. I wonder if those drugs are also responsible for this sleepless night?

So I will finish my sandwich, double check that I posted the quiz for my students correctly and try to go back to sleep. The puppy will be awake soon...

I am not my hair.

Chemo 2 is over. It went well. The oncology nurse practitioner made some changes in my home meds and I am feeling better...as long as I don't eat much, I don't have nausea and so far, no vomiting. The biggest event is the loss of my hair...

On Monday morning when I was washing my hair, I noticed a weird kind of feeling on my scalp. I mentioned it to the NP and she told me this was the beginning of the end of it. By the time we were on the way home from chemo later that day, there were a few hairs coming out. By early evening, I was able to painlessly pull handfuls of hair out. It was time to shave it off. Why not, it was a beautiful evening and my family was there to witness it. Mary and I went out onto the deck and began.

It as been important to me to maintain a sense of humor throughout this process. Having your head shaved was no exception! Mary seemed to enjoy the experience as well...starting out by giving me a "bowl job" and then working up to a mohawk.

Yes, we throw gang signs here in Woodbury!

Mary also wanted to leave a few tufts for good measure but I knew someone would have to vacuum them up so I had her just do it all. We swept all of my hair (what little of it there actually was) off the deck into the wind for the birds and little animals. Perhaps they will use some of it for nesting materials.

I cried while Mary shaved my head. My Mom cried while Mary shaved my head but then decided I looked like the day I was born. My sister took photos for us. She didn't cry which I found a bit surprising. Here is an after photo of my Mom, my sister and I.

And yes, I do look like a cancer patient now. My head is cold and it feels weird. I wear a baseball hat with my pajamas. I am startling to see for the first time. My friend Betsy stopped by yesterday and was a bit startled but then said she quickly got used to it. Our friend Lorin stopped by yesterday afternoon to kiss my bald head. It's just weird.

But I am more than my hair...much more. Losing my hair is an outward sign of the fight I am waging. And hair grows back.

My friend Kellee sent me a song called "I Am Not My Hair" by India Arie. I don't know how to link it directly here so you can listen to it, but here are some of the lyrics:

I am not my hair, I am not this skin, I am the soul that lives within...

Does the way I wear my hair make me a better person? Does the way I wear my hair make me a better friend? Does the way I wear my hair determine my integrity?

Breast cancer and chemotherapy-Took away her crown and glory... She promised God if she was to survive, She would enjoy everyday of her life...Baldheaded like a full moon shining Singing out to the whole wide world like hey~I am not my hair, I am not this skin, I am not your expectations.

If you want to listen to this song (and the album...it's good!) go to iTunes.

Oh...woe is me.

I'm having myself a bit of a pity party tonight. It is the eve of my second chemo session and I have had a tremendously great weekend. The weather has been incredibly beautiful and I have felt great. No vomiting in several days and no need for naps the past couple. I was able to get outside dig in the dirt a bit and enjoy the spring. And now, oh...woe is me.

Tomorrow is my chemo #2. I got a call from the oncologist's nurse to let me know my blood counts were great and I was ready for the next treatment. Yippee. I get to go in there tomorrow for 5 hours, get stuck with needles and infused with medications that are going to make me feel horrible for days. What is so ironic about all of it is that no one is making me go. I am choosing to participate in my treatment plan freely. There is no penalty for not showing up and no contract to violate. If I didn't go the only person harmed is me. I can't imagine how I would deal with the guilt and shame I would feel if I have a recurrence knowing I didn't do everything I could possibly do.

So I will go.

On a brighter note, I got an email from my NP friend Kristin to say that she had passed her national acute care certification exam. Congratulations Kristin!! I am very happy for her and her success. I did not pass. I missed the passing grade by 9 points. I have known about this for 3 weeks but was toooooo ashamed of myself to tell anyone but my family and the closest of friends. It is the first thing that I can remember failing in my life. Kristin noted in her email that she downloaded some information about the test and found that the test administrators state that those who fail often have some mitigating life circumstance going on at the time of the test that contributes to their failure. I suppose cancer counts as a life circumstance which could interfere with my test-taking abilities. Nonetheless, I consider myself a bright and well-educated person who should (after being a nurse and an NP for this long) be able to pass a certification exam. I find this failure embarrassing regardless of the circumstances. And yes, I get to take it again. Oh, lucky me.

I will now return to my pity party, already in progress.

There is no escaping.

There is no escaping cancer in our society. Yesterday I got an email from a woman that I used to play hockey with. She had just been diagnosed with breast cancer herself. She is younger than I am. That makes 2 women we know who have been diagnosed since I have been. And that is only women we know...

You cannot pick up the paper, go to the grocery store or sign onto your computer without messages regarding cancer of some kind. New warnings, new studies or new products re-designed to increase our awareness and generate research funds. I recently received this in an email from our friend Kris. Apparently M&Ms are now available in a breast cancer awareness package. A check at the M&Ms corporate website finds that they are "Passionately Pink for the Cure." You can find their pink products and recipes at http://us.mms.com/us/news/promotions/komen/

Kitchen Aid has also gotten on board and invites you to "Cook for the Cure" with their line of pink appliances: http://kitchenaid.com/content.jsp?sectionId=457. I am not sure that I need a pink mixer but ok...I admire their attention to the cause. There is also this website called "Think Pink" offering everything adorned in pink ribbons that you can think of: http://thinkpink.homestead.com/Index.html. They even offer the plaid Better Homes and Gardens cookbook (you've all seen one of these...many of you probably own your own copy in red plaid) in pink.

Perhaps I am getting a bit tainted as my life has been filled with breast cancer since early February. If I am not reading about it or thinking about it, I am at an appointment related to it. More recently I have been napping as a result of it. But in the greater society, there is no escaping our attention to cancer in general.

Please don't misunderstand me. I am grateful that there has been the attention to breast cancer thus far. Because of the attention it has gotten, more is known about treatment giving me greater treatment options. That is all good. But if you are someone with cancer, short of closing your eyes and ears when you leave the house, there is no way to escape it for a moment.

About a week ago there was a letter to the editor in one of the local newspapers. It was from a woman who was a breast cancer survivor. I didn't think to clip the letter itself but I found her words interesting. Her point was that she had put her cancer into perspective within her life but society has created so much attention around cancer that she can not escape it. I suspect this will be true for me and all of us diagnosed in this time period. I know there will come a time in which I will truly be able to put this in my past but will the world around me allow it to remain there?

Progress

When we brought the puppy home a week ago, Olivia was insensed. She would get up and move away whenever the puppy came near her. She wasn't mean or aggressive in any way...just indignant perhaps because she once again, had to share her space with a new creature. Yesterday I found the two of them laying together on the dog bed in the sun. They weren't interacting but they were on the same bed. They may have even been touching. Now that is progress!

It has been 8 days since we brought Piper into the house. While Kaja warmed to her immediately, Olivia clearly has a different process and her progress has been slower and perhaps, more deliberate.

Observing the progress of my girls got me to thinking about my personal progress. Yesterday marked 2 months since I heard those words, "you've got breast cancer" for the first time. What is progress? We typically equate the term with positive and forward movement. Ok. I think I have achieved a degree of that. I no longer burst into tears when I talk about breast cancer and it is no longer the only topic discussed in our household. That's progress...right?

Many times in the past couple of months, I taken a few steps backwards. From that perspective, I have been able to take a different look at myself and my situation. That's progress too, isn't it? Even if it did involve a move backwards. And certainly, I am progressing in the treatment of my cancer. I survived my first chemo session and look forward to the next, if only to have it too, behind me.

So how do we measure progress? Sometimes in baby steps. Perhaps that is what I am seeing in Olivia and Piper. It is also what I am seeing in myself sometimes. I no longer am so shocked when I see my naked self in the mirror yet my body doesn't feel like mine yet. It still feels different and foreign and the scars are still horrific. I no longer burst into tears for no good reason yet still cry when I have an intimate conversation about my cancer with someone close to me.

I also think we can measure progress in backward steps. Some life experiences cause us to stop, back up and consider the bigger picture...that which is greater than ourself. Our relationships for instance. Without stopping and taking a step backwards for observation, how can we ever do the periodic reevaluation that is so necessary. At many points in the past two months, I have had to look at the relationships in my life. How have they been affected by my breast cancer? How is my partner...and what will our new relationship look like as a result of this diagnosis? What about my other relationships? From that perspective, we become better prepared to move forward once again. Chances are no relationship will be the same as it was before.

So I take a lesson from Olivia. Progress is growth and change. It is allowing ourselves exposure to new things or even, revisiting old things. Progress is a process. It can be difficult or painful. It may be tremendously rewarding. It is often slower that I would like but happens despite us. We could fight progress but that doesn't seem to make much sense to me.