Body Image; maybe TMI

I've been pretty ill for the past few days and so haven't posted. Earlier today, however, I was thinking about how most, if not all, of this blog has been devoted to feelings, appointments, test results etc. It does not address one of my worst fears, upon learning that I have breast cancer, and that is: "What will I look like after I have the mastectomies?"

I spent some time on the internet looking up images of women who had mastectomies. I didn't come up with a whole lot, but what I saw was encouraging enough; not too bad looking. Where there had once been breasts, there were neat crescent moon shaped scars. Some were not so pretty, but I thought I had a pretty good idea of what I might look like post-surgery. I don't think I ever thought much about "Oh, without my breasts I'm not going to be "me" anymore!" or "My big boobs were the only thing balancing out my big tummy." It wasn't like that. I'm not sure how to describe it, but...maybe my thinking was more clinical. Removing my breasts was the best way to ensure that I could beat this thing...this cancer. Okay...let's get it done, eh?

Post-surgery...to be honest, I hardly remember a thing that first week. It was longer, yet, before I had the courage to check out my new chest. To begin with, I was all stapled and bandaged up. I felt like I had a tight bandage wrapped all the way around my chest. A couple of weeks later, when I was able to take my first real shower post-op, that's when I actually looked and understood what had happened. I used to have rather...chubbly underarms. My left one still is; they only removed 17 nodes from that one. The right, however, is now quite concave in appearance because they removed 39 nodes there. I also have a slight indentation just below my right collar bone, and next to the sternum, where they removed some nodes from behind my chest wall. My surgeon removed all of the breast tissue from both sides, but there was still some fat left over on my sides and so that...it still sticks out a bit. I'm thinking that maybe that might come in handy during reconstruction, if I do decide to go that route. Plus, when stapling the incisions, the skin flaps didn't line up properly, and so there is a lot of puckering and areas of seemingly random swelling. I guess the scar tissue I had on my breasts from before (bunny scratches and scars) got in the way of properly closing the incisions. Oh well. Each incision starts at my sternum, and ends just at the edge of my underarm. I've been pretty swollen up the last couple of days, due to being ill and in bed for most of the time, I'm sure, but I expect that to all go down soon. Oh yea. I also have a 3" diagonal scar at my left front shoulder through which my port was implanted. My entire surgical area is still numb, as is the bottom side of my left upper arm. My surgeon said feeling may or may not return to these areas. In order to get at the lymph nodes, he had to sever a lot of nerves. Every now and then, I feel twinges and "pings" as the nerves try to heal themselves. It's not terribly comfortable, really, but it's all part of the process.

Body image...no biggie. I think it's actually kind of nice that I no longer have to wear a bra :-) I wear camis, chemises, tank tops...anything that's non-binding. Because of the extensive lymph node removal, I run a 10% chance of ending up with lymphedema, or swelling in my arms and hands caused by my body's inability to move fluids through the lymphatic system. I've heard that lymphedema isn't much fun. So...I cannot wear any clothes that bind, no jewelry; I cannot carry my purse on my right arm, or have my blood pressure taken on that arm. I'm glad that I can still type and knit, though :-) Now I just have to lose some of this tummy to match my new and much more trim chest size *smile. Blessings!

Not a Bad Day at All :-)

My day started at about 5:00 or so, when I got up and made David breakfast, his lunch (the usual PB & J), and a pot of coffee. Okay, so the breakfast was Cream of Wheat, but it made David happy which in turn made me happy. After David left for work, I took my meds and then went online to check my usual places; facebook and my on-line support group. Spent some nice time with the kids...hugs and cuddles with Chelsea and she read me a series of thoughts she'd written down (very creative!). Ben stopped to see me long enough to let me know he was heading for the woods (okay, be safe, have fun, be good). Becca showed me a cartoon she's been working on for quite a while, and then she let me read a story that she started writing last year. It's really a good story and I can't wait to see what happens next. It's a mystery, involving an abandoned house, a locked door at the top of some steps, and a silver key. By 8:30 or so, I was getting tired and so I laid down to rest. That's when the phone rang, and it was my wonderful oldest son calling from Orlando! He was calling to check on how I was doing, feeling etc. He wanted to know if I glowed in the dark. I had to laugh at that, seeing as how David once had me believing that I would glow in the dark following a test I had involving radioactivity. I told Robert, "No, the chemo isn't radioactive, it's just poison." We had a good laugh over that "just poison" and then went on to have a really great visit...15 to 20 minutes, I think :-) It was cut shorter than I would have hoped (dang, my call waiting), but as always, before I hung up I told him that I love him, and he said he loves me too. I'm sitting here smiling. Afterwards, I took a nap for a few hours. I was just so danged tired.

My oldest brother (who, by the way, says that Hair is vastly over-rated hahaha) is up for the weekend, and so we had a family work crew getting the garage and yard winterized. Thank you, Mom, Mike, David, Ben, and Steve! The garage scares me and so I generally stay out of there. It's supposed to be "Ben's Domain" in as far as keeping it clean etc., but...anyways. The Boat and wheeler are in the back yard, the van is parked at the side of the garage where it will stay for the winter, the car is in the driveway and there's even room in the garage now, if we need to move it in there. The fabric part of the screen house is put away, the tents, etc. All that is left to do, is to put away the garden gnomes...I think.

It's very often difficult to accept help, especially when you want so badly to reciprocate in some way but for one reason or another, are unsure or unable to. We thank God daily for the blessings of family, friends, and faith. Today really wasn't a bad day at all. I was tired and feeling a bit fragile...but really...'I will lift mine eyes to the Lord' ^^^Thank You!^^^ Blessings!

Holy Cow!

My hair is already starting to fall out! Not clumps, yet, but when I run my fingers through my hair, I come away with 4 - 8 hairs each time. I knew it was going to happen within a week, or two...but shocked that it's already started a little more than 24 hours after my first treatment. The good thing? It means the drugs are doing their job...killing off the most rapidly growing cells...especially the bad cells. Wow. Blessings!

Happy Friday!

It's Friday, and I've had all but one of my appointments for the week. Good grief...every day this week to one or another! (I'm sitting here laughing about it :-) )

Monday I saw my surgeon in Two Harbors, and that went well. Serumen had decreased by 50% from the previous week. I see him again next Monday and there's every possibility that it will be for the last time. Tuesday I was in Duluth for a MUGA scan (Multiple Gated Acquisition Scan) which measures the strength/health of the left ventricle. Because one of my chemo drugs (Adriamycin) can be toxic to the heart muscle and lead to heart failure, my oncologist wanted to make sure that my heart was strong enough to withstand treatment. I'm not sure what the numbers scale is all about, but I needed to have a score of 50 and ended up with a 67. I guess I passed, eh? :-) That test was no biggie. They withdrew some blood, mixed it with a radioactive medium of some sort, then reinjected that and did the scan. It was similar to the bone scan I'd already had. Wednesday I went to see my PA because of the severe pain I was experiencing in my right shoulder and through my right chest area. I wanted to make sure that whatever was causing the pain would not delay my chemo. It turns out that I have bursitis. Okay, that's manageable. I can, however, only take tylenol for that pain.

Yesterday I had my first chemo. Needless to say, I got very little sleep Wednesday night. I was really scared and so when I dressed for the big day, I dressed with purpose. Basic jeans, a white spaghetti strap tank to make access to my port easier, and then my Grandma Woelfel's red blouse. I figured that way I would have Grandma with me physically, even though I knew she was there in spirit. The last thing I chose was the Prayer Shawl that the local Prayer Shawl ministry had made for me. I wore it on the way to and from my appointment, and even used it as a blanket while I was receiving treatment. It was made with love and prayers...and I feel great comfort when wearing it.

The first thing that happened, is that I had tubing connected to my implanted power port. The external connection looked like a button with a very slender and short needle attached to the bottom middle of it. I barely felt the poke. It was taped down and then I had blood work done (red blood and iron counts are down/very low. Red blood count was 10 and Iron should be between 49 - 150, and mine is 19 so I guess I'm anemic. Oh well. Iron supplements and Cream of Wheat here I come. *smile). After that, David and I met with my Infusion Nurse whose name was Deanna...Dee for short. Gotta love that! Family friends happened to be in the oncology office at the same time that we were, so after a short visit with them, I was taken in to get started with treatment.

The chairs were comfortable...recliners, actually :-) The first thing that happened, was someone took my lunch order. Egg salad, apple sauce, cookies and water. After that, an anti-nausea drug was administered through my port. Next came the Adriamycin, which was a "push." Dee pushed the drug into my port manually, because it needed to go in at a specific rate. The thingy she used looked like a cross between a giant syringe and a turkey baster. After two syringes of that drug were administered, the second chemo drug was hooked up on a pole and to my port. That's when I got tired and took a nap, covered up with my prayer shawl.

Afterwards, I felt pretty good; a little woozy, but not bad. I was expecting to get sick but that hasn't happened yet. I'm not counting any chickens. When we got home, we went to the pharmacy where I had 3 anti-nausea prescriptions waiting. One I take every 6 hours as needed, another is twice a day, and still another is once a day for 2 days. Grsh! It's a lot to remember...for me, at least. The final thing I have to do this week is get my Neulasta shot and that will be at 3:30 today. This shot is going to force my bone marrow to produce more white blood cells (leukocytes) to help fight off infections. Oh yea...I also got a flu shot yesterday. My very first :-) It makes me feel good and less worried about catching the flu. As far as the Neulasta shot goes, I am hoping for the best as far as side effects. I've heard some people have absolutely no trouble, and I've heard that some people experience great pain for a few days. Wait and see. With God's grace, I am hoping for the best. My next chemo is scheduled for October 22. It's a wonderful day, isn't it? Definitely a Happy Friday. Blessings!

Getting Ready

for a busy week. I suspect I'm getting pleurisy, but not sure. Whatever is causing the pain in my right chest (an 8 on a scale of 1 - 10) needs to be taken care of ASAP. I don't want anything to interfere with my treatments this week. I am praying very hard for healing. I'm looking forward to the "doing" as opposed to waiting. I'm looking forward to the "knowing;" knowing how I am going to react and respond to chemo...the side effects etc., and knowing how I am going to react to the Neulasta shots that I will be receiving the day following chemo. I have heard that the staff in the Infusion Center (the actual place where chemo is administered) are amazingly kind and supportive. One of the nurses at the Vet's Home where David works, actually used to work there. We had a really great conversation about what I can expect etc., such as how things will actually be hooked up to my Power Port. The more you know the less you have to fear, right?

We had a family meeting today, to make sure the kids had all of the information they needed, to answer any questions they had, to address their fears, and to hopefully re-establish a sense of order in the family. Kirstin seemed "cool" with everything. Chelsea wanted to know how long I would have to have chemo, Ben needed his boundaries more clearly defined, and Becca needed to know that I'm not planning on dying. That is her big fear at this point. David told her that he's afraid of that, too, and that it was okay for her to be afraid; that it was normal. I assured Becca that everyone I've heard of that has had my type and stage of cancer, has survived for many years afterwards. We also impressed upon them the need to do their chores, and to do them properly; a clean house is a healthy house, and that once I start chemo, I will be especially vulnerable to contagion...that I will get sick a lot easier than I do right now. We also talked about the effect this all has had on David so that the kids realized that All of us are in the same boat, and share many if not all of the same fears, concerns, dreams, and hopes. It's good to get everything out and the kids are all old enough to understand most of what we had to say.

In other, happy, and non-cancer news? Last Friday was our kids' Homecoming. Chelsea attended with her friend, and Kirstin went with Steve. These photos make me happy:

Blessings!

A Blustery Day and Magic

My kids had a book, when they were little, with such a title or at least one similar, and from what I've seen of today, it is indeed a blustery day. Once again, it's windy, wet, and kind of cool. It seems that just as the autumn leaves reach a state of great beauty, the winds kick up and blow all of the changing leaves to the ground. It's sad, in a way, until you realize that there are still more beautiful leaves clinging to the trees, even though you know that these, too, will one day either be blown away with great force, or fall gently to the ground. Interesting how things kind of overlap, give and take, ebb and flow. While the last trees are shedding the last of their autum finery, nature continues to change in other ways. The days get colder, and the first frosts cover the fallen leaves. Okay, they cover everything and if you happen to be running a little bit late for work, you end up being later still because you have to scrape your car's windshield. But still, there's beauty in the frost. We have to be a little more careful when we walk, or drive, or do anything outside, and we probably have to turn our house thermostats up a bit to accomodate the cold; it's just something we do. Before you know it, the first snow arrives...that magical, amazing, first snow. The kind that sends school children running to the windows of their classrooms so they can gaze in awe at the tumbling, blowing, first real sign of winter. And if they're lucky enough, there might be just enough snow on the ground before recess to go out and make snow angels. Even if there's not enough snow on the ground, someone will invariably still try to make a snow angel, or a mud-snow angel. An adult may very well scold such a child for getting so dirty because many adults, unlike children, have forgotten how to believe; how to see the magic in the world around them. I'm generalizing here, but I believe that adults tend to see the dangers and hazards, while children tend to see the fun and the beauty. I think that much like personal opinions and values, the truth lies somewhere in between or is a combination of both. There is magic in the world, but there are also lessons to be learned.

"To everything there is a season, and a time for every purpose under heaven."

Much like very dear friends of mine, I think I realize, now, that I've had a beautiful and magical life. I've been blessed with amazing family and friends, with faith, and great love. I have definitely learned much along the way. It may sound strange, but in a very real way my cancer is a blessing. Through having it I have received the gifts of kindness, caring, and prayers from people (countless numbers that I don't even know) across the country. Just like my friends believe, I know that this is my season, and that this is my time and for this purpose. God's will be done. Blessings!

October 1, Day's End

There are 28 minutes left of today...October 1, which is my parents' 51st wedding anniversary. It was exactly one year ago today, that my dad was last in the home he shared with my mom for nearly as many years. Today was also the day that I saw my oncologist, a Dr. Baker. I learned a lot from him, including a definitive stage of my cancer: IIIC. Because my cancer is IIIC (5 year survival rate of something like 30%), my chemo treatment is going to be very aggressive and will start next Thursday, October 8. I will go every 2 weeks for chemo for 8 weeks. The day after each treatment, I need to get a shot that will increase white blood cell production by my bone marrow. I am soooo hoping that I will be able to get that shot at our local clinic rather than drive all the way back down to Duluth to get it and then drive home again. Once the initial chemo cycle is complete, "they" will decide whether or not I need to have chemo every 1, 2, or 3 weeks. I can expect to be bald by Halloween, and to be having chemo for the rest of the year and into 2010. I'm so glad I have enough hats that I can wear a different one for every day of the week :-)

Each chemo treatment, after the initial one at least, will take between 3 - 4 hours and will be administered through a port I had surgically implanted just above my left collar bone when I had my double mastectomy. The guitar pick shaped port has a catheter that is threaded into one of the veins leading to my heart in order to provide for the most effective and efficient distribution of the chemo drugs which are AC...not quite sure what they stand for, but I'll find out. Providing chemo through this port will eliminate the need to use an IV every time which is a good thing.

There's the technical stuff. Emotionally and personally...I'm kind of on one of those low parts of the roller coaster. Reality of the seriousness of this disease...my disease has set in. I try really hard to stay positive, especially for the kids, but in my heart of hearts, I sometimes worry that I won't be around to see Becca grow up, to see my girls happily married, to hold my first grandchild. It's kind of hard to push those feelings and thoughts to the back of my mind where they belong. Oddly enough, I was much better at dealing with everything that went along with learning about and dealing with my kids issues...Ben's autism and adhd, Kirstin and Becca's asthma, Kirstin's surgery, Chelsea's anxiety and autoimmune disease. It was a lot easier, I think, (and maybe I'm just seeing the past through rose colored glasses; I don't know) to live those days one at a time, or even one moment at a time that it is to deal with my own disease. I wonder why? Am I being selfish? I don't know and right now, I'm so tired, I really can't put any more effort into thinking about it. Good night, everyone, and Happy October 2...in 13 minutes. Blessings!

Good Morning October

So...maybe it's not really a "good" morning, but it's better than last night...or was that this morning? Once again, I ended up crying my eyes out...feeling guilty that I'm being such a burden to my family, being sick, causing great financial hardship (not just with my medical bills, but with getting behind on other bills). I didn't sleep much, or well. Becca wanted to be woken up at 4:00 and I promised her that I would make sure of that. I didn't fall asleep until after 3:00, and didn't wake up until 6:00. I saw Chelsea long enough to give her hugs, admire her "nerd" outfit, and tell her to have a good day; same with Kirstin and Becca. (It's Homecoming week at school, and today is Nerd Day.) I feel guilty because I know how much stress David is under, and I'm just making it worse. Logically I know there's nothing I can do about it. Logically I know I'm a lot like my mom; type A personality + worry wart. I'm the wife and mom. I'm the one who's supposed to be able to fix things. I'm not the one who's supposed to need fixing. I'm not the one who's supposed to rely on other people. I'm the one other people are supposed to be able to rely on. I'm having a hard time wrapping my mind around the fact that it's okay to need other people, to ask and receive help, to not have to feel that I have to be "strong." I don't know how long I cried for...seemed like hours again. But my dearest husband said some things...he said a lot of things that made me feel better, including assuming partial responsibility for some of the areas in which I feel like I've totally failed. He said that I am the glue that holds our family together (very sweet). He said, again, that we need to "fight this thing;" this rollercoaster ride was just getting started, and it was normal and expected to have bad days as well as good days.

I guess the only thing I am certain of right now, is that today is a new day and we have to take it one hour at a time, or even one second at a time. We'll get through it and move into tomorrow. It will be interesting to see what the oncologist says today. I'll post more later on that. Blessings!