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!

Fast Forward...

The months have flown by. Since radiation finished, I've been dealing with a residual skin problem as a result of the radiation. I was hoping it would disappear, but it has spread. The dermatologist took a biopsy last week and told me not to worry...it's not cancer, more likely something that can be easily treated. The first two medications he gave me didn't work, but last week he added a third and I'm noticing that there is less inflammation and no new spots. I'm crossing my fingers.

This past Monday night, I went to a meeting of SOS, a volunteer group of survivors, who meet with new survivors to talk about different issues such as fears, recurrence, relationships, etc. It was very uplifting, as I have been a little down in the past month from the skin issue and recurring fears. One of the messages of the meeting was to recognize that I am the top priority now and to take care of myself first before others. Of course, it's not realistic, but it's a message that I've heard a zillion times, but this time it stuck a little better. The other message I took home was to reach out for more help if you need it. It was calming to talk to others who have been through it and are surviving with the same feelings and emotions.

So...I decided to call Hopewell Cancer Center...they provide support services and have a breast cancer support group that meets twice a month. I'm looking forward to learning about their services next week. There is a sense of relief that I'm doing something to move forward. I never dreamed this would be so mentally debilitating. It doesn't make sense since the cancer is gone, but at the meeting the women said it can take a long time - 1 to 2 years until you really move forward with your life.

20 Treatments Down - 13 to Go!

I didn't realize it had been so long since I blogged last. I take that as a good sign that I'm thinking less and less about the cancer and more and more about the next phase of my life. Going from "Hold" to "Active" status.

The past two weeks have been uneventful except for missing one day of therapy because the machine broke. So now my last treatment will be December 17. The doctor said my skin is in much better shape than he anticipated. I'm having some breakdown under my breast but it's very small and very manageable.

David and Rachel came up for a great idea to help it heal - a boob jack to hold it up and a small fan to provide air to it!!! We tested the theory using a toilet paper roll, but after a little while, the weight of my saggy boob crushed it, but the concept is a good one! I'll wait to see this on the market next year.

Dare I Say I'm More Back to Myself Again?

These past couple of days have brought new clarity. I seem to be thinking less about the cancer and the treatment, and can focus a bit better. Not sure why unless it's that the treatment is on the way out rather than the way in, and there's hope that my life can move from "hold" status to "moving on" and getting on with life.

I cannot tell you what a great feeling it is to "feel" again. I'm happier and more content and laughing more and just feeling better about everything around me again. Sure, my breast is still pink and the treatments are a daily annoyance, but it'll be over in a few weeks and then it's just a matter of taking a pill everyday for five years. Certainly a MUCH more normal way to live.

And if God is good and my luck is positive, this will all be a major memory to look back on when I'm old and MORE gray than I am now. Happy Thanksgiving!

15 Down - 18 to Go!

Things continue to move along. Last Saturday, we celebrated a beautiful event with a very special friend, her family, and community, and it was life affirming. Not only did I see people I haven't seen in years, but the sense of love and family was awesome. It was a wonderful evening!

Today was the first day of radiation where someone was there for an emergency treatment. Turned out this young woman was experiencing bone metastises from breast cancer and in severe pain. The whole thing was depressing. A group of us sitting in a room and not being able to avoid hearing her tell her companion about her experience. It shakes you to the core, but makes you feel so lucky it's not you. However, it does remind you of your mortality for sure.

8 Down - 25 to Go!

Finished my 8th treatment today. The skin is looking very good, although its quite pink. The ALRA cream is keeping it from breaking down, which is very important. The big change this week is that the radiated breast has shrunk considerably. Probably something I'd notice more than a mere stranger seeing me fully dressed, but I do realize it, and it is kind of sad.

Over the weekend, I started feeling a little more tired than usual. Just not sleeping that great at night, but not being able to catch up during the day. When I left work today, after a difficult workload, to get treatment, I was just exhausted, but there were still things to do. So I'm going to make it my business to get to bed as early as I can and just relax a bit.

I can't stop focusing on the fact that I had cancer! I can't seem to get it out of my mind lately. I am really angry again. While I know all the good things about the type I had, it's just that I had it and it can always creep back. Yeah yeah...I know that I'll be vigilent and do all the things I need to in order to catch anything as early as possible, but I'm not so naive to think that I'll never be at risk again.

Ignore my blabbing...it's pity party day.

Nothing is as They Tell You

I believe that nothing is really as they tell you. It's really more of an average. For example, I didn't expect SEVEN tattoos. I get into my first day of daily treatment, and it turns out the one of the main tattoos on my bad breast is 3" off. EXCUSE ME? That's not a small difference. Anyway, I now have tattoo number 8. So I told my hubby that I had a special surprise for him last night when he came home from a business trip. I gave him a pen and told him to connect the dots. Not funny...but you gotta laugh it off, right?

Going back a little, after radiation day one, I go home and notice they put some tape over two of the tattoos at the base of the bad breast. I pulled it off because after the simulator, they left on some things they told me to take off at home. Well, I got issued a new "youknowwhat" on that one. Per the rad tech, "Didn't I tell you yesterday NOT to take those off? Now we have to do it again. Hrummph."

Everything up to the radiation therapy had been going very well. But I must say, I haven't been impressed with this part. I told the tech that my skin was already pink, and she says "Impossible, no one gets pink this early." So I start justifying myself, which is ridiculous, and say "I've got extremely fair skin and always burn quickly so never say never." She then gets a bit of an attitude and I tell her, "Listen, this may be old hat for you doing this everyday, but for me this is new. I may not remember everything you tell me, and not everyone fits the mold of what you think it should be like for them." She later apologized for being a jerk (jerk=terse in her dictionary).

I hope this radiation experience gets better...cause it sure isn't what I thought it would be, and I'm normally pretty easy going and witty. I see the radiologist on Monday and he and I are going to have a little discussion about all of this.