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