Monday, June 20, 2011

Going Out In Public

I have found myself very reluctant to go out in public in the past week or so. I've thought about this in the last day or so and I think I know why.

The neurosurgeon shaved my head last week - to even out my hair - so I'm back to wearing hats.

I also wear a compression sleeve on my left arm.

Then, there's unicorn boob (chest tumor) that sticks out about 1 to 1.5 inches near the center of my chest - it sticks out father than the TRAM flap.

And, then, there's the diarrhea that seems worse in the morning. As I type, my fingers are a bit shaky.

Finally, I have been preoccupied since Friday about skin mets - I think that the areas that aren't healing have cancer cells in them preventing growth. So, I've been doing a little research trying to figure out what I can do post WBR (whole brain radiation) to get that under control as I want the wounds to heal.

I am really sick and tired of wounds. I have two of them right now.

For some reason, the compression wrap seems to bring the most questions from strangers. With my friends and colleagues, I just have to say, "I'm wearing this so that I can decrease the lyphedema". But with strangers, it invites more questions about why I have lymphedema. On Friday, the clerk at Freddies then went on to tell about her cancer scare and how she's got to go in for a biopsy soon - it wasn't breast, but another organ. I don't want to talk about or comfort someone else right now. I'm too preoccupied about what's going to have to happen next.

My dad has told me twice not to worry too much into the future - just get through this week's surgery and the WBR beginning next week. But I sorta feel like I need to look up options so I can bring them to Dr. K on Wednesday. I want to be prepared for the next leg.

I am so preoccupied that I haven't felt like working on mosaics or the blogger analysis. I am also worried about getting another infection on the chest tumor site after surgery - I am to shower with Hibiclens Wed evening and Thurs morning, but I can't shower because of the wound in my armpit. So, I need to talk to a nurse about how to adequately clean (because while I showered the night before the April 1 surgery - or that morning, I only did it once and I don't recall really using that stuff very much, so I'm afraid that's why I ended up with such a huge infection afterwards). The chest tumor also bleeds when I change the dressing, so I'm worried about needing a transfusion.

So, I guess I'm full of anxiety and worry. I will call the surgeon today about making sure they are prepared for a transfusion. I will call the admitting nurse about showering with Hibiclens. I need to call Disability and see what is going on with my claim, I need to change an appointment and preregister for the surgery.

Once I make all these phone calls, I hope I can settle down and do something more positive and productive.

Oh, one thing I found about the skin mets - I will probably have to do a taxane. I found a bulletin board where someone posted a Japanese study that included a drug that I've not heard of but is an estrogen blocker with paclitaxel. I think there were only four treatments of the latter and 120 days of pills with the former (called toremedine, I think), but in the case they treated, the skin mets disappeared and stayed away from the woman for two years as of the writing of the article.

Writing about it all helps. I don't mind visitors coming to visit me at home. I just don't feel like going out in public and talking to complete strangers about what's going on with me. Maybe once unicorn boob is removed, I'll feel more up to doing something outside the home.

5 comments:

j said...

Yep. Let it all out. Put it out there as much (or as little) as you want. People's good intentions, blah blah blah, can still pave a pretty good path to hell! It all -- the drugs, the wounds, the healing, the not healing, the surgery, the radiation, the unicorns -- seems a bit MUCH. Daunting. I dealt with a fraction of what you're going through and there were loads of times I just didn't feel like being a "good sport" about the well-intended remarks. (The woman who told me "Aren't you lucky to be on medical leave! I bet you're getting a lot of publishing done!") Thanks for letting me/us know what you're going through. I mean that. YOur insight and information (and your unique take on things!) is such a gift to the rest of us/me. But I would not want it to be a gift that comes at the expense of your own health and well-being. xoxoxo jeanne

Judy said...

Dee, This is Billy's sister, Judy. I saw him post on FB and had to come read your blog. I hope you don't mind. I've got to tell you worry & anxiety is not helping you heal. You have to be positive! Worrying is not going to get you anywhere, but leading to stress, anxiety & wearing yourself out. My husband, Scott, is cured of Multiple Myeloma, incurable bone marrow cancer, which struck him in 1997. He is a miracle, everyone else diagnosed then is no longer alive, but he is alive & doing great! He went through chemo, full body radiation & a bone marrow transplant, but his weapons were: denial that this was going to take him, a super positive upbeat attitude, and the grace of God. Be positive, sweetie, be positive! I remember all the "well-intentioned" remarks, people telling Scott about their uncle dying of cancer. Very frustrating, he had to constantly stop them and say, "I can't hear that right now". People don't mean to be cruel, their just trying to connect with you and that's the only way they know how. Take the positive energy (they're trying to show) and use it for your own healing. Judy

Dee said...

Hi Jeanne,
Thank you so much. Yes, that's exactly right. I don't really feel like being a good sport about it all. I feel much better now that I let it all out and then started making my phone calls, especially to the doctors and the nurse - waiting for them to call back - so that everyone i prepared for the surgery on Thursday. In other words, I'm taking care of the things I can control - feeling productive - so the anxiety and worry are going by the wayside. It helps that I got almost 7 hours of sleep last night, including a 4-hour stretch.

Judy, I usually do have a positive attitude. I would suggest you read more of my blog as I do think I am entitled to bitching now and then. In particular, I'd like you to read a post called "Faith" from a couple of weeks ago. I don't think cancer is going to get me any time soon. However, the next few weeks will be trying. This will be my 4th surgery in less than three months and will be similar to the April 1 surgery that knocked me out for several weeks due to draining wounds - loss of blood and anemia. My acupuncturist tells me that if I feel something, I should let it out. My blog helps me do that. Then I can go back to being my positive self. I appreciate your support, though, and hearing your husband's story. I believe a positive attitude helps, but it doesn't mean that you're always positive. The strategy your husband used - "I can't hear that right now" is probably one that I need to use more often. Thanks for reading the blog - I don't mind at all.

laurie said...

it's amazing how much writing can help. and you do have a lot on your plate. and i can totally relate to avoiding public/social situations because you don't feel like dealing with other folks' stuff. just do what you need to do to take care of yourself. xo

Octavia Shadows said...
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