Just When You Think Your Head is on Straight...

This week has been a rough one from an emotional point of view. I was thinking I was really settled about the breast cancer impact on my life, and then a woman my age in my community, with children who are the same age and friends of my children, dies of breast cancer. She and I were acquaintances. We would always say hello and make small talk when we bumped into each other, but her death threw me for a loop.

Combining that with other stressors, I started to sob last night...for two hours. I couldn't stop crying. Poor David did not know what to do to comfort me. My dogs climbed on my lap and licked my tears. I was inconsolable, and finally, the last drop fell, and I was totally drained, exhausted, and feeling like some of the pent-up angst that has been following me since my diagnosis last September was gone. Cathartic for sure, but also for sure to happen again.

I HATE this disease. It robs families and communities and steals your courage. It takes your free spirit away with the worry that this "beast" is lurking somewhere.

Climbing Over the Mountain

Last night, I went to the Hopewell Cancer Center Support Group after a brief hiatus, and noticed how very far I have come from an emotional perspective. There really is another side to the mountain, and I am seeing the world in a much happier and positive way.

Ten months ago, my world seemed pretty bleak, particularly, since I couldn't take my thoughts away from my mother's death, and wondering if that was going to be my demise from this beastly disease. I fretted that I was never going to see my daughters married or grandchildren or live to enjoy the retirement, we have carefully saved for. The future did not look very positive at the time.

Today, while I think about the cancer, it's not an every day, every hour focus of life. It happened. It was treated. It continues to be treated with Tamoxifen. It's the best it can be. Like I said in the last blog, I'm looking at it as a message to reevaluate my life and appreciate what is most important.

I have been so lucky - terrific and loving husband, wonderful daughters, adorable dogs, great friends, and life's comforts. I am blessed.

How Did I Get Breast Cancer?

I think all of us who have been diagnosed wonder what triggered it and when it started. They say that DCIS takes 5-10, 10-15 or 15-20 years to develop to the point where it can be diagnosed. That's a wide range of years and who knows which one is right, but I can pinpoint events during each of those time frames that may have created enough stress to affect my immune system enough to make it incapable of fighting the cancer cells.

Fifteen to twenty years ago, my mother had 2 strokes and died of recurrent metastatic breast cancer. She had been sick since I was 15 years old with a multitude of health issues, mostly centered around her circulatory system. My role changed from daughter to pseudo-caretaker. My mother really took her sick role seriously. She stopped working. She was afraid to do anything that may stress her. However, the stress was redirected to everyone else. My father, in turn, was not used to not having his wife do everything he wanted when we wanted it. It's like taking a stable table with four legs and moving the legs around so that it wasn't quite as stable, nor did it stand up as straight anymore. The outcome of living in that environment over a period of time resulted in an uncomfortable level of anxiety and some hypochondria based out of fear of becoming sick like my mother.

Twenty years ago, my children were also in elementary school. I was working in a job I wasn't crazy about, but it afforded me a schedule that would permit me to be home with my children whenever they were out of school.

Fifteen years ago, I found a job where I could work from home. I decided to go to graduate school full-time during that period, and while the children were a little older, my role as a mom was more important than ever. The children were the easiest part of my life at that time. The overload of school and the job caused my hair to fall out of my head in clumps, resulting in 6 months of cortisone treatments to my scalp to prevent further damage. Lessons learned: I reduced the school schedule and still graduated within the time frame I had orginally planned. I also went back to work in a structured environment where I could separate home and work responsibilities when the home job contract ended.

Ten to fifteen years ago, my daughters were getting ready for college. It was a tough financial hit, but not unexpected. It was during this time that I also experienced a bad business relationship that really stressed me out.

Five to ten years ago, I was in another job where the workload was totally overwhelming, and most of us in the department were treated badly. I was the first of 23 people who left that department over the next five years to find peaceful employment elsewhere.

Add it up, and any of these events could have thrown my body over the edge. Include a dash of family genetics, bad eating habits, and erratic exercise. Is it any wonder that I developed breast cancer? How many times do you have to get hit on the head to know that you have made bad choices?

Looking Back - 9 Months Later

Most of the past nine months has been a whir of activity, primarily focusing on breast cancer - diagnosis, treatment, side effects, and survivorship. Only now am I starting to see the forest through the trees, but there are certainly many lessons I have learned along the way.

My daughter commented recently that my point of view on what is important in life has definitely changed since my diagnosis. She is pleased to see that I am focusing less on work, and more on taking care of myself. That I am focusing less on taking care of everyone else, and treating myself better in the process. These are things that I have always strived for, but could never justify in the past. Why does a cancer diagnosis finally justify it? Why did I ever have to justify focusing on myself?

Here I am, the nurse, the caregiver, the family anchor, the daughter who looks after her ailing father taking care of his bills, his medications, and listening to his daily "organ" recital, the daughter-in-law, who worries as her aging deaf 95 year old father-in-law lives day-to-day in an assisted living facility, the wife who worries that her husband's 4 hour commute each day is too stressful, making him tired and unable to do the things he used to do, the mother who worries that her daughters, now in the work force, are spending way too much working and not enough time playing. How can I blame them, they learned from the best ;->.

My daughter also commented that my life history has been filled with little "bumps" that have made me stop for moment and take notice of my choices. So that while cancer is not something I would have ever wished for, it did make me stop, take notice, and make decisions to change the course of my life in a positive way. I have learned to take the lemons and make lemonade.

Back to the Breast Surgeon

After two bouts of antibiotics which helped to reduce the inflammation, heat, skin redness, and pain in the radiated breast, the symptoms are back. The radiation oncologist sent me back to the breast surgeon, whom I really trust. After careful review of the history and extensive palpation and questioning, she advised me to use "tincture of time" to let nature move forward to try to resolve the ongoing problem.

She wasn't blowing the situation off, but felt a very conservative approach is the way to go for now. Unless of course...I develop more inflammation and pain. Then, I'm to call her back.

I feel comfortable with this decision, because she took the time to review the situation, the past treatment, and synthesize it all to make a decision about the best way to move forward for the time being. Works for me!

Stay tuned...

Infection is Back Again...

So...now I'm 10 days out from the finishing the 2nd antibiotic, Cipro, which I was on for 10 days and the symptoms of breast infection are back again - itching, inflammation, and swelling under my armpit. It's getting REALLY old. The Radiation Oncologist wants me to go back to the breast surgeon. He is not convinced it is all from the radiation at this point. What we do know is that it is likely an infection since it has responded to the antibiotics. Here we go again...sigh

Finally...Some Answers

I'm finally turning the corner - emotionally that is. This week I have better direction on what is causing the radiation effects and an answer to the swelling in the my left neck which has gone on for two years. All are fixable...so much to be grateful for.

I've also decided to turn my focus away from the cancer and more on making my life even more meaningful than it is already.

Radiation After Effects

So it's now 5 months post-radiation treatment. If you recall, when the treatment ended at the end of December 2008, I experienced a folliculitis of the treated skin area that took nearly 2 months to resolve. The dermatologist tried 3 different approaches to resolve it, including a biopsy (just showed inflammation and nothing else), and finally it went away when all three medications (topical antibiotic, steroid cream, anti-fungal cream) were applied.

Fast forward to this week... My affected breast is very warm to the touch, still pink, and painful at the boost site area as well as under my armpit where it feels swollen at times, particularly in the morning when I swear I can feel the lymph nodes. The pain is becoming more constant, particularly after the breast has been touched. So I called the breast surgeon, whose nurse referred me back to the radiation oncologist, whose office arranged for a visit that day.

The radiation oncologist advised me that it was NOT cancer, but rather a hyperreaction to the radiation treatment which occurs in 1-2% of all people who receive radiation (aren't I the lucky one?). He recommended 2 courses of treatment -heavy steroids (8 weeks) which would provide optimal results or Motrin 800 mg three times a day for 3 weeks. I made no treatment decision at the time of the visit because I think the treatment is a bit harsh to start out the gate with, and will follow up with him again in August since he says there is no harm in waiting it out a bit longer.

The day after that visit, I received a call from the radiation oncologist, who had done a bit more research, and recommended that I should try a short course of antibiotics for 10 days to make sure that the inflammation is not bacterial in nature. He ordered a broad spectrum antibiotic. If it improves the situation, I'm to see him at his office. If not, I'll give him a call to advise.

Now...with my 20/20 hindsight, maybe I shouldn't have done the radiation, but then I wouldn't have done the full battle plan and would have more about the cancer returning. Too late now to speculate about what could have been.

Psychological Support

Last weekend, David and I participated in the Hopewell Cancer Center's Annual Fundraising Walk and Run. It was joyous to see my new Hopewell friends with their families and to see some of my old treatment buddies, now being active and looking healthy!

The Hopewell Center has really been a terrific place for me. It is a non-affiliated non-profit grass roots organization that provides supportive services to anyone with cancer. Services are all free of charge, and they rely entirely on donations. They recently purchased an old comfy home where their meetings take place and built a barn on the property for their spiritual classes in yoga.

Every other Monday night, they have a Breast Cancer Support Group. Last night, I went for the second time. The women change each visit, because it is a networking group, and attendance is not mandatory. It's so inspirational and freeing to talk about the cancer and learn from others' experiences, fears, etc. And it's not all cancer either...it's the fallout from the experience that is discussed as well. I highly recommend this type of activity for support.

Last Thursday, I also started weekly support group sessions at the Hopewell Center. This includes people in all stages of cancer with all types of cancer. Again, another opportunity to talk freely about cancer and never worry that someone will run away from you because you have that need. The reality is that none of us who have been through this want to burden others who have not with all the details, but sometimes there is a personal need to do just that. The weekly group is diverse, but we all connected. This will definitely be helpful for me.

If my Mom had not had breast cancer and died from it when we thought she was cured, I don't think I'd be so fixated...but it is what it is and I have to live my life with that knowledge. I feel certain that these groups will help me get over the psychological hump. How lucky I am to live in a community with so many fabulous resources!

Six Months Follow-Up

Today was six month post-cancer diagnosis visit to the oncologist. Since the radiation ended, I've been having swelling in my left armpit every morning. I realized, through all my reading, that pain in the breast after radiation was really quite normal, so those pains have not scared me. The oncologist was not concerned at all. She palpated my armpit and told me that my lymph nodes were NOT enlarged, and that it is really quite common to have axilla (armpit) pain after radiation.
My blood work came back normal in all areas, and she is pleased with how I'm doing with the Tamoxifen. My breast is still a little red and a little warm from the radiation, which she says is also common, and no, it is NOT IBC. That was a relief.

My next appointment is scheduled in 6 months, one week after my next mammogram. Lots to celebrate...all is going as good as it can get!