Saturday, February 28, 2009
During treatment I think it helps to have a job or something (kids, animals) to keep you going. But I believe that once treatment has ended, people should have 3 months of paid leave to heal and get their strength back. Think we could find money for this? No, neither do I.
Thursday found Vic and I celebrating granddaughter McKenzie's 8th birthday. Seems just like yesterday that she popped out into the world and wrapped her dad around her little finger. McK is still a treat and the drama queen. When she climbed into the booth where Vic and I were waiting at the restaurant, she says dramatically, "Oh, Grandma! You have hair! It looks so pretty!" I guess I forget the physical changes that have been going on since I see what isn't there. I should focus on what IS there. . . .and give thanks. I'll have to figure out how to give thanks for the facial hair that seems to be growing a little to fast.
McKenzie's 5 year old sister, Courtney, had her first school performance this same night. She was so cute singing and doing sign language to the songs. Courtney also had the pleasure of introducing one of the songs her classmates were going to sing and she was so scared. Her grandparents were beaming with pride.
Eyelashes are starting coming back in a bit. They are still stubby and not long enough for mascara, but heck, I'm now thinking mascara is over-rated! What is strange is that the amount of eyelashes are not equal on any of the four quadrants or even close in equality. The left top lid has quite a bit of lashes. Some of the lashes are curly, like a pigs tail and some are growing down. Those are a pain. . .I try to push them up with my finger or use my eye lash curler to get them out of the way. It still amazes me how the body has changed and continues to change after chemo and radiation.
I am happy to announce that the dark tan under my arm pit is now starting to peel! I don't remember reading that this would happen, but just checked the web and, sure enough, it does! "Normal" looking skin is showing and I am so thankful to have one part of that area become less disfiguring. I meet with the Radiation Oncology next week and will have to give him a hard time about it. I'm thankful that the sore underneath the breast has finally healed.
Vic (finally) met with the surgeon for his Schwannoma. The doctor couldn't feel the tumor despite some very hard pressing on Vic, left the exam room to consult with the radiologist and review the MRI again. Surgeon estimates that the tumor is 1.5 x 1.8 x 1.8cm. Surgery will be in April.
Cousin Kim - I'm still trying to figure out a way to answer your questions that you posted in the comments a post or two ago. Haven't forgotten.
I don't know how to say it any other way - but thank you so much for everyone's continued support and prayers. They mean so very much to Vic and me!!
Sunday, February 22, 2009
In 2007, with low platelets, she rode 1,000 miles on her Harley-Davidson motorcycle with Amazon Heart Thunder (motorcycle adventures for breast cancer survivors). If you haven't read her blog, click on the "low platelets" link and read the entries before and after. . . you get the gist of the spirit of this woman.
We lost another TNBC sister - CalGal - Thursday night. A few months ago, we lost Alaska Deb and Fancy. All with triple negative breast cancer.
This whole blogging thing has changed the look and feel of cancer. Breast cancer isn't something whispered about as it was in the 1940s and 1950s. We can now read about how others dealt with their diagnosis and treatment - validate our fears and find a new way of dealing with a chemo side effect. Blogging allows others around the word to support you and give words of encouragement when the road looks dark.
I had never met Tracy but did learn about her thoughts, feelings and her spirit through her blog. She was a real person, not some fake, phony person on MySpace. Her words helped me get through the treatment journey. I found humor where some might not have found humor having cancer. Tracy sure could!
Read the memory comments people left about Tracy. Will anyone say such great things about you when it is your time to leave this earth and the earthly body? And I'm not speaking to just women with breast cancer. If not, then do something about your life!
While I have not (yet) met Sharon, Kathy, Sue, Patti, Caryn, Christina, Sheri, Lauren, Gina and a whole host of other ladies, you have all touched my life as you shared your journey through breast cancer treatment and the life beyond with me in your words. You all are in my thoughts and prayers as you go through testing, waiting for results, chemo, waiting to feel better, implant fills, and more waiting.
With over 4800 hits on my blog, it makes me wonder how many other TNBC women are reading my blog. Won't you send a comment, or your blog website address, or join as a follower? Otherwise, I have to think that maybe I've clicked on the pages 4500 times and don't remember it!
Wishing you many blessings today and tomorrow and the rest of your life.
Wednesday, February 18, 2009
We hate this disease!
Introduction from the blog of a courageous and spirited TNBC woman - Tracy Pleva Hill
Please keep her family in your prayers.
My name is Tracy Pleva Hill and I was diagnosed with Stage IIb, triple negative breast cancer at the age of 32 in 2000. Ten months after completing chemotherapy in early 2001, I discovered that my disease had progressed to Stage IV. I have since spent seven years being infused with chemotherapeutics to manage my disease.
I have a beloved, beleaguered, adored husband who valiantly remains my most insistent supporter despite all the challenges and hardship breast cancer has brought us. (“In sickness and in health” – who saw this coming?) I also have an nine-year-old son who has never known me as anyone but a person living with cancer. So, I love my husband, raise my son, work full-time and run my home. Only, there is always the cancer.
I have a hard time remembering what I was like before breast cancer horned in on my unremarkable but happy life. It shapes me in unfamiliar ways. Living with Stage IV (advanced) breast cancer elevates the game. It means knowing that your cancer is never going to leave you and that you are going to be on some form of medication for as long as your body can withstand it or until the cancer overwhelms it.I intend to make this f-ing disease work for every little bit it tries to take from me.
Monday, February 16, 2009
His elbow has given him pain off and on over the past 5 years. Cortisone shots and physical therapy have not cured it, only helped alleviate the pain for a little while. Next step was surgery for him. So, me in my brighter moment said, "Hey honey, why don't you try acupuncture? I have a recommendation for a acupuncturist from one of the ladies at work". What I really meant was, "Hey honey! Why don't you go have acupuncture first and tell me how bad it hurts. THEN, I'll decide if I want to go myself." I'm such a loving wife.
Actually, Vic isn't bother by needles but I am. I can get the pass-out feeling just thinking about it. The port flush this past Thursday hurt like the dickens and, yes, I had to sit afterwards because the room was turning a little white. I had the usual chest discomfort and ended up with some bruising around the port area. We figured out that during chemo, I was never bothered by the needle going into the chest because they had me so gorped up on meds that made me sleepy and calm.
It was good to see the oncology nurses and give them a big hugs. One asked me when I was going to have my port out, which I answered, "As soon as I get up the nerve to do so. Dr. W. wants to take it out in her office and I can't get over the idea that I won't be anesthetized and that I knife will be close to my ear cutting my skin." I'm so dramatic. Nurse MaryAnn told me that it was real easy . . they would numb like they do for the port flush, open up the skin at the same surgical site and do two snips to remove it. I'm assuming she meant that the two snips are to whatever is holding the port in place. Whatever, it's still opening up my skin and me being aware. Vic wonders how they close the hole in the artery that has the tubing in it. I don't want to know. . let him keep wondering.
Fatigue/tiredness is lessening, which I'm so grateful. I want to get out walking on part of my lunch hour to help with the fatigue, but the toenails and toes are saying otherwise. I am going to lose one toenail for sure and possibly 3 others.
I've tried a variety of shoes just for the office to find one that is less uncomfortable. Heels or slight heels are out, as well as any pointy shoe. What feels good is to wear my clogs to work. Then take them off and run around the office in my socks. Not very professional, for sure.
The radiated skin is giving me a little trouble. It is still pink sunburned color, itchy and has itchy bumps on the top of the breast and chest. I have a sore underneath the breast that I've put different salves and ointments on to heal, but no luck. Putting on a bra is rather uncomfortable. The skin on the side and part of the arm pit is brown. My first tan in a long time! Woo hoo!!
We had a nice dinner last night for my grandson's 15th birthday. It's hard to believe that our sweet little boy talks with a deeper voice and is one year from driving. Where has the time gone? He still smirks at my bald head, so teenager of him.
Looks like Seattle will have some sunshine this week. My goal is to get out in it for a bit on my lunch . . and even try to do some walking - burning toes and all. I so want to get on with getting healthy and consistent in diet and exercise.
Hope all is well with you and that you are finding many gratitude moments.
Saturday, February 7, 2009
I have vacillated on stopping the blog now that treatment is over. I've decided that I will keep it up for awhile, but probably won't write as often. There is much more to this journey-that-no-one-wants-to-be-on than just treatment. There is the "life after" or is that "afterlife"?
This week has been a fatigued and fog week. Ecstatic that the treatment is over, but dang it all, couldn't I just bounce back and be me on Wednesday? Fatigue isn't as bad as the chemo fatigue, but it is here. Usually it comes around in the afternoon and I slink home to my recliner until bedtime. Yesterday, I was having "grey outs" in the morning. Got it? Grey outs instead of black outs? The brain is grey, I couldn't remember and . . .okay never mind.
I so0000 thought I was past the chemo fog part. Is this what is happening? It's been a long time since I've had my "normal" brain it's hard to know.
Me with foggy brain and fatigue story:
I had stayed in my work clothes until bedtime one night this week. Not a big thing but it was out of my normal routine . . and hopefully this tidbit helps you understand the rest of the story. I put on my nightgown, but stayed in my slacks while I straightened the bed and fluffed the pillows. No Mom, I still don't make my bed in the morning.
I brushed my teeth, removed the makeup and did some other things at that end of the house which is away from the bedroom. I came back into the bedroom and started looking for my night gown. Now Vic has a terrible habit of moving my stuff off the bed and placing them wherever. Yes, Mom, if I would put my things away when I'm done using them, I wouldn't have to search for them.
I looked on the dresser, his usual place where he puts my items. Not there. I looked between the bedspread and blanket, blanket and sheet, and between the sheet and bed. Maybe I accidentally covered it up while straightening the bed. Nope not there. I started down the hallway to the kitchen, where Vic was, to ask him if he touched my nightgown. As I was walking, I looked down and happened to see that I was wearing my nightgown! I didn't remember or comprehend that I had put it on.
At least it was a good laugh and fodder for the blog.
This Thursday is port flush day. It has to be flushed once a month with saline solution until it is removed. When will it be removed? I don't know right now. I'd like to keep it at least for the first MRI or PET/CAT scan where contrast die is required as the port can be used for this. Since the first time that the port was accessed, I get this pain down my breast. It lasts for a little while and then goes away. It is simply weird. The nurses don't know why it happens. Guess I'll have to ask the surgeon whenever I see her.
The first week in March, I will see the Radiation Oncologist. At the end of March will be another port flush. At that time, they will do blood tests and I will get those results when I meet with the new Oncologist the first week of April.
So every month, there is some contact with the cancer treating medical profession. How can someone forget about cancer and get on with their life with these reminders? Let alone the fatigue and chemo fog reminders.
Oh, well, life continues and the mysteries remain. Each of us in this journey-that-no-one-wants-to-be-on know that we just keep putting one foot in front of the other and keep moving forward to dance with NED.
Vic meets with the surgeon for his Schwannoma at the end of February. It will be nice to finally find out what the next steps are for this little tumor.
Many blessings to you!
Tuesday, February 3, 2009
Monday, February 2, 2009
Cancer has become a way of life at our house and work places. Our lives have evolved around it for 8 months. . . . three seasons. We couldn't make plans for short-term activities – forget about long-term! Juggling the doctor appointments, treatment times, and levels of energy sometimes made everyday life out of kilter. Would I have enough energy to go to the grocery store after work? Will I have taste buds so we could enjoy dinner out? Etc., etc., etc.
Some people don’t understand that though tomorrow is the last day of treatment, cancer will be with us for the next few years. My chance of recurrence is low since I completed chemotherapy and radiation. Recurrence of my type of cancer (triple negative) has a higher percentage of recurrence in the first 2 years. After 5 years, I am safe( r ) than those women who have hormone-fueled tumors.
Am I going to focus on this? No, I won’t. But one can’t help but have it in the back of the mind.
I have done all that has been asked of me medically. Now it is up to me to make some changes to my life to better the odds.
Radiation went well today. Still pinked out. One of the radiation therapists won’t be there tomorrow, and she gave me a big hug after treatment today. She said it was a pleasure to have such a happy, pleasant and smiling patient. Isn’t that sweet?
I am sooooo looking forward to ringing that bell with Vic. Even though he didn’t have the chemo or radiation, this has been his journey too. Don’t know what the bell is? Tomorrow you will!