Update: Nothing to Report

I just realized that I didn't update my last blog post.

I went to the Breast Health Center and had my annual Diagnostic Mammograms and the Ultrasound of the area my Gynecologist was concerned about. I passed both with flying colors. The U/S Tech did not find ANYTHING suspicious in the concerned area, just some thickened tissue, no fibroids, nodules, tumors, or anything noteworthy.

Of course this is what I figured. But I'm still glad to have it confirmed by the experts. I sure didn't want to wait two months, worrying and anxious. Let's see if my insurance company agrees with me, as it hasn't been quite a year between Mammograms.

Passed with Flying Colors :-D 

This Time of Year... Grant me Strength

October is almost upon us, which means it's also my Cancerversary. September/October are the months of checkups, tests, and scans. And since I hit the big 5-0 back in February, I have the honor of scheduling my first Colonoscopy. (Can I hear a whooop!) I would love to put it off another few years, but with my history, the doctors want it done now.

A few weeks ago I scheduled appointments with my two oncologists (same building, let's make a day of it!) The first was my Radiation Oncologist. She was STOKED about showing me a new diet plan she came up with for me. She had checked all my records, checked my blood tests, read the notes thoroughly, and printed out a several handfuls of pages explaining the new diet that WILL get the weight off. She guarantees. It's the Ketogenic diet, a.k.a. Very Low Carb diet. All of her papers came with research studies and footnotes. Honestly, I'm not sure how I feel about it. I know several people who lost weight on that type of diet and they look and FEEL great. I also know a few who got very sick while going through ketosis. (Basically, you are making your brain and your body run on fat instead of carbs.) I have a lot of research to do because I'm not a "jump in immediately" type of person. I did promise her I would "try" it for a month. ("Try" being the operative word.) Just not this month. Probably not next month. Or November or December. January sucks anyway so maybe I'll try it then LOL. I have a lot of food allergies to deal with, Hashimoto's to think about, food avoidances (like GMO's and pesticides and processed food) but the more I read, it doesn't sound like it should be a huge problem. We shall see. I'll definitely let you know if I try it.

Anyway, the rest of the appointment was awesome. Yeah, boob check. Everything felt fine. Lots of scar tissue at ground zero that causes some discomfort and misshaping, which she says could be released with a surgery (ugh!) or just wait to see when I lose all this weight, boobs might get smaller and it'll be less noticeable. (Plug for VLC diet, yeah?) Everything else checked out fine and I will have to see her one more time next year, and she will be able to formally "release me" from her care. Yay!

The next appointment was the Medical Oncologist, who was thrilled at my mental progress! Yeah, another boob check an hour after the first one (lots of action that day! LOL) and again, he felt nothing unusual or suspect. Blood tests came back good (except for a slightly low MPV -mean platelet volume- which could explain easy bruising, but nothing to worry about.) We talked a bit about LIFE and what's going on in all departments. He did end saying "Wow. You really had a hard time with Tamoxifen, didn't you?" YA THINK? Well, drugs weren't even brought up. So there's that.

My official yearly Mammo and Bone scan was scheduled for November 17th and I was good to go.

So a week and a half later I had another day of two-fer appointments. My General Practitioner for a referral to the Butt doctor for the Colonoscopy and an added request for an endoscopy to check my esophagus. I'm tried of having constant heartburn for the past 15 years. I'm afraid that my esophagus is taking the brunt, as I had difficulty swallowing some food several times when I was in Arizona earlier in August. I want to get this done at the same time. But I am definitely requesting they use a different scope for each end (:-P) I also mentioned my shoulder has been hurting for a couple months and was referred to Ortho. (yay! another Doctor!) I had some shoulder xrays that afternoon too. 

A few hours later I had my annual Gynie appointment (affectionately referred to as my "Vaginacologist" people who have watched the TV show "Raising Hope" will get it?) I won't go into some of the details (you're welcome) but she also did a breast exam. And she was concerned about an area in the left boob (non afflicted one) that felt suspicious. She had me feel it. But honestly, my boobs always feel lumpy and ropey, especially after the breast reduction. But this was way at the top of the boob, near the chest wall. It is a slightly harder spot but it's large, like the size of two finger widths, half a finger long. It can only be felt while lying down, which explains not feeling anything during shower self-exams. But it kinda disappears as I go from laying down to sitting up.

Honestly, I'm not worried. I had two oncologists check me the week before and didn't find anything. And this doctor, while I do like her and find her easy to talk to, is the same one who told me my 7 lb baby had turned to head-down position a week before I delivered her breech. Sooo... She contacted my Medical Oncologist and had him put in an order to move my mammo, and an Ultrasound if needed, up to: ASAP. Which turns out to be September 29th, in a few days.

My brain on anxiety.

I was trying to figure out the difference between worry and anxiety. I am not worried that this is breast cancer again, but I am highly anxious now until I can get that scan to prove me right. This past weekend was rough - despite a very nice "third date" Saturday afternoon ;-) That night, it hit me, the difference between worry and anxiety. Worry is in my head. It's logical. Do I have something to worry about? Not likely. So no worries. For me, anxiety is completely different and came out in the physical. My heart was beating in my throat (PVC's came back after a 10 month hiatus!) It was hard to take a deep breath. Sleeping was difficult. Loss of appetite... all of which makes me cranky and tired and shaky. Hopefully it wills subside after I get results from the mammo/ultrasound. 

I sure can use some good juju at this point. This October I was planning on celebrating on hitting that HUGE milestone for Cancer Survivors - The FIVE YEAR mark. I'm counting on it. 

Guest Post by Katherine Keys

Today I have a guest blogger! I would like to introduce you to Katherine Keys, a survivor of Pleural Mesothelioma. Many of you have heard of this type of cancer but did you know that it's one of the few cancers where we actually have an idea of what causes it? Knowing what causes it is both heartbreaking and helpful, and there are places out there that can help with compensation, if you know that your place of work knowingly put you at risk of contacting this disease. Well, I'll let Katherine take over.  For more information about this disease, please visit Mesothelioma.net.

Be on the lookout for an update from me also, I just had my annual oncology exam :-) 

Surviving Mesothelioma by Katherine Keys

Stories of survival are always inspiring. Stories of surviving one of the most aggressive and fatal types of cancer is simply awe-inspiring. Unfortunately not many people can be survivors of this terrible disease. It creeps up on its victims and often only makes itself known after it has reached advanced, incurable stages. Every once in a while, though, someone makes it and that helps others find the strength to fight.

What is Mesothelioma?

Mesothelioma is a type of cancer. It affects the lining of tissue that covers most organs in the body, called the mesothelium. Mesothelioma is a rare cancer, but the most common type is cancer of the mesothelium around the lungs. This is called pleural mesothelioma and the biggest risk factor for developing it is exposure to asbestos fibers.

Many people diagnosed with pleural mesothelioma worked in environments for years in which fibers of this mineral were inhaled through the air. Someone who lived with a person who worked around asbestos for years is also at risk. In many cases people struggling with this type of cancer were not told by employers that they were working in a contaminated environment. This has led to a number of mesothelioma lawsuits and settlements.

Pleural mesothelioma causes symptoms that may include difficulty breathing, a regular and painful cough, pain in the abdomen and under the rib cage, lumps under the skin on the chest, weight loss, and shortness of breath. Most diagnosed cases of pleural mesothelioma are fatal. Patients are usually given treatment options along with a life expectancy.

Why Can’t This Disease Be Cured?

There are a few reasons why most cases of mesothelioma cannot be cured. One is that this is a particularly aggressive type of cancer. It spreads rapidly, which makes it hard to stop. Another issue is that it usually develops after years of exposure to asbestos. The signs and symptoms may not be obvious or uncomfortable enough until the cancer is well advanced. Many people get a diagnosis only after the cancer has reached a late stage.

There are treatments for mesothelioma, which can help people live longer, and which in rare cases may cure the disease. These treatments include surgery to remove cancerous tissue or even an entire lung, chemotherapy and targeted radiation. These treatments have both drawbacks and benefits that must be considered.

Katherine’s Story of Triumph

The story of Katherine Keys is one that all people diagnosed with pleural mesothelioma should know about. When diagnosed with the disease she was given a maximum life expectancy of two years, which she decided to beat. Her treatment included the surgical removal of her right lung and mesothelium followed by radiation to target any cancer cells left behind after the surgery.

After regular checkups following her treatment, Katherine discovered that her cancer was in remission. She now only needs to be checked once a year, and although life with one less lung is more challenging, she fought and beat mesothelioma and is expected to live out the rest of her life cancer-free. Katherine shares her story with others to inspire and to give hope. Being resilient and positive are the keys to fighting, surviving, and living a great life after cancer.

Decisions Need to be Made

In less than a month I have my next 6 month checkup. 

It's been a little over 4 years since I was diagnosed with cancer. 
It's been 3 years since I finished Chemotherapy
It's been 2 years since I finished Herceptin
It's been 2 years since I had my port removed 
It's been almost a year since I stopped taking Tamoxifen
It's been 7 months since I had my ovaries removed 
It's been 6 months since I left my Doctors office in tears... 

Those six months have flown by. I was supposed to have made a decision by now. Have I? I'm pretty much avoiding the topic. Do I want to start taking Aromatase Inhibitors (AI) or, as my doctor would put it, do I want to die?

My goal is to live. Fully and consciously. In the present. Intentionally.  

 

It's one of those impossible decisions. I reacted badly to the Tamoxifen. You can read about it on THIS blog post. I have done a lot of research about the AI's. It seems that out of every person who says they can tolerate it, 9 more relay stories of horrible side effects, severe bone pain, depression, weight gain, high blood pressure, high cholesterol, the list goes on. What are the chances that I will be the "one" out of 10 who has no side effects, when I had major side effects from the Tamoxifen? 

The doctor says there are drugs to take for the side effects. Drugs for depression. Drugs for pain. Drugs for high cholesterol and high blood pressure. Drugs for Osteoporosis. All those drugs have side effects. When does it end? I don't want to be a walking pharmacy. I am Granola Girl... I avoid GMO's and pesticides. Why would I want to fill my body with chemicals upon chemicals? I did my time. I did Chemo. It's a horrible catch-22. 



I don't want to spend the next 4-5 years of my teenage daughter's life being in a brain fog and depressed, not being able to go for walks and bike rides, not being able to drive for more than 30 minutes. These are formative years. I am a single mother, for the most part. She lives with me 26 days out of 30. We have a great relationship, her and I. She still talks to me about everything. She still wants to do stuff with me. She still wants to just  hang out. When I was on Tamoxifen there were too many days I told her "not today... I'm too tired." Too many days I had to cut our walks short with a "my muscles are cramping up." Too many excuses to get out of living. 

I want to live for this. Deliberately.



I need to be conscious the next 4 years. I need to grow my business and/or find a new business to grow so I can support myself and plan for my future. I also have a dog to take care of now too. I have plans. I want to travel. I have masterpieces to create. I have people to help and love to give. I need a clear head and energy to live.

 

I have a lot of living to do still. I'm not done yet. I guess that deep down, I have already made my decision. I am just dreading meeting with my doctor again and telling him. How do you explain all this to someone who hasn't walked in your shoes? Who isn't living the life you want to live? Someone who only looks at numbers and statistics and drugs? 

There are times, days, when I want to shout and cry "It's not fucking fair!" For doing this to me. For making me choose a (maybe) longer life or fully living life. 

Fuck you Cancer. I hate you. 

Two and a half years ago...

Two and a half years ago... was the last time I wrote a post on this blog!

I have reasons, I swear. It seems like Life hit me in the head with a bag of lemons and knocked me out for awhile :-) My last post reported that it was my birthday... I was done with all my cancer treatments by January, my port was taken out in February, it was my birthday and I was getting my health back, and I felt very loved. Life was good. Then life started getting weird... you know that feeling you get when you know something is "off" but you can't pinpoint it? Or nobody will talk to you about it, but you know it's big? Yeah that. By July, divorce proceedings were started. I am not going into the gritty details, that's not important, but let's just say that the next 18 months of my life sucked big Sour Lemon Balls.

Never in my life did I imagine I would be divorced at age 48, after 25 years of marriage. Oh, the grieving process is real. I went through every single stage. I have never cried so much in my life, and I have never been so angry. But you know what?

I am a survivor. And I am strong.

I survived cancer. I survived divorce. I survived moving out of my home of ten years and setting up a new home with my daughter. I survived divorce lawyers. (Stress, anyone?) I survived with the help of my family, my friends, and my life coach. And art. Yes, it's true what they say. Art heals. So does writing/journaling, although I kept that all very private.

So here I am today. I am 49 and still trying to figure out who I am and what I want. Because 25 years with your other "half" only makes you a half person (and sometimes less...) When I think about my future, anxiety starts creeping in like a draft under the door. Sometimes I wonder if I have a future, and all kinds of macabre thoughts creep in. I won't go there now.

Today I had a checkup with my oncologist. The physical exam went well, no suspect lumps or bumps, or nodes. Last week I had my ovaries removed and he was surprised at how fast I was healing. Asked if I needed more Norco (pain pills) and I laughed. I took 3 out of 30. No, I don't need any more. He was thrilled at how good I felt the past few months, since I stopped taking the Tamoxifen. Here's the story...

Yes, it was my choice to stop taking the Tamoxifen... I had three years in and couldn't do it anymore. I felt like crap all the time. I woke up tired, got C to school, went back to sleep for 2 hours, dragged myself through the work day, only to crash again about 3:00, dragged my way through dinner, and sat on the couch all night because I didn't have the energy to do anything. I wanted to sleep all the time. I didn't feel like doing anything I loved... making art, sewing, reading, walking, living. My brain was in a fog all the time. I had a hard time thinking, focusing, remembering. I felt like a zombie, going through the motions of life. Depression is real, my friends. Didn't know I had it until I didn't have it anymore. A day came when I convinced myself that my daughter would be okay with her dad because he loves her and would take care of her. I didn't really care whether I lived or died.

Um, wait. what. the. f*ck. 

That day I decided to go off my meds, my Dr. had previously told me I could safely take a three week "vacation" without hurting myself. I stopped on a Monday. By the following Monday it was like a switch was flipped. I could see colors again. I could breathe again. I got six hours of sleep and didn't need a nap the entire day! I could form coherent thoughts and sentences. It was freaking amazing! I called my Dr. and made an appointment and told him I am NOT going to go back on Tamoxifen because it was killing me. He was not happy. But we compromised and decided I would get my ovaries removed to lessen the estrogen production in my body. Then we would talk about more meds. I waited until the end of summer because I had a few trips planned and didn't want to worry about lifting things, I just wanted to enjoy myself.

Which brings us back to today. My exam went really well, I passed with flying colors and I feel great. I left the cancer center with tears in my eyes, drove to a nearby empty parking lot and sobbed the Ugly Cry. Because he wants to put me BACK on meds. I don't get it. In one breath he tells me how happy he is to hear that I am feeling so good, and enjoying life, and I told him that for the first time ever I drove two days to North Carolina by myself because I COULD.

The next breath he is telling me the side effects of Arimidex (and a few I added from the website)
Tiredness, weakness. 
Increase in Cholesterol and blood pressure.
Increase in risk of blood clots and strokes.
Bone pain.
Joint pain.
Osteoporosis/bone thinning. 
Weight gain.
Sexual side effects like vag dryness and painful intercourse.  
Increase in hot flashes, flushing.
Blurred vision, chest pain, dizziness, headache, nervousness, shortness of breath...

The list goes on and on. An echoing in my head:  No. No. No. No. No. How can I do this? I finally, after THREE years, feel like I am alive again and able to enjoy my life again. And I'm supposed to willingly give it up again? This is not fair. This is SO not fair...

His words keep echoing through my brain. Probably because he repeated it 4 times during the 20 minute visit.

"Lisa, I have always been open and honest with you and I wouldn't tell you this if I didn't believe it 100%. I STRONGLY recommend that you to take this medicine. It is proven to greatly decrease your chances of recurrence and DYING OF BREAST CANCER." Yes, he said "dying".

Do I want to die? Of course not. I want to live. But I want to LIVE. I want to feel like I am alive while doing the living. I don't want to feel like I am dying while pretending to live. Sigh.

By the end of the appointment I asked "IF I took the medicine, how long would it take to notice side effects? And how long would it take to leave my system if the side effects were too severe?"

Then something happened that has NEVER happened to me before. He said "I don't have time today to discuss this with you. Seriously think about this and come back in six months." And the visit was over. I think I pissed him off. Because I didn't blindly follow instructions and do whatever he recommended? When have I EVER done that? 

I truly don't know what to do. I am so torn up about this, I just want to cry every time I think about it. I did some research tonight and am still processing. I will talk more about it next time. I would love to hear your experiences if you are taking an AI. Don't tell me what to do, just tell me what you're doing, okay? 

xoxo Lisa  

One year ago today...

Happy Birthday to me!

 One year ago today... it was my birthday. I celebrated by shaving my head while Mike was at work and Celia was in school. My hair had started to fall out by the handfuls and it was time to take control and let it go on MY terms. 

Since then, I've finished my rounds of chemotherapy. I finished my year of Herceptin. On February 1st, against my doctors "recommendation," I had my chemo-port removed. I celebrated my birthday in my own skin, sans devices and deadly chemicals and full of hope for my future. What a difference a year makes! It makes my brain spin a little bit thinking about it. 

This year was a happy. birthday. Celia made me breakfast in bed. We went out for a delicious lunch a'la Italiano. Lounged around and read my book and had some nappage. Spent a few hours making some art. Had the Pineapple upside down cake Mike and Celia made (from scratch) for dinner. Mike and Celia did the laundry (seriously) all by themselves. Celia made me a beautiful zentangle-y picture of a Manga-Mermaid. (Manga-Tangle? Zen-Mangale?) And I got a new purple bicycle :-D I felt loved indeed, by all the birthday wishes from my friends and family through emails, Facebook, and phone calls. It was a very special day. 

Still not much hair but more than a year ago!

Now, on to the health update! I have to say I've been doing pretty well with the sugar ban and healthy eating. I feel like I've seriously cut my sweet tooth. I don't crave it anymore. I can pass by the candy stash at the grocery checkout without hearing their little evil voices calling to me... There's a kit kat bar laying on a shelf in the breezeway (I have NO idea why) but I haven't felt the need to snogg it down. 

German Pancake Banana Pizza?

What I am doing instead... I am eating fruit with my breakfasts, applesauce or mashed bananas on my pancakes. Chia seeds in my oatmeal. Raisins and bananas in my cereal. Super fresh organic eggs from my mom's chickens. Since I work at home I can make my lunches. Normally two or three servings of vegetables with some fish or other lean protein, sometimes brown rice or whole wheat pasta.

Brown rice, turkey sausage, carrots, parsley

Dinners are always served with more veggies than carbs. If I must have dessert, it's a chia seed pudding (not as bad as it sounds!) or jarred peaches. I go to Whole Foods every week and get fresh Broccoli and Kale and Carrots and Greens. Last week I tried Chard (easier to eat than Kale) and this week I have a huge tub of spinach in the fridge. I learned that I shouldn't "drink" my greens very often because of Thyroid issues so I cook them, which is fine. I don't have a proper juicer anyway. I made a huge pot of vegetable soup: 

Zucchini, tomatoes, parsley, celery, green beans, garlic... yum!

I am learning how to cook for myself. I can still cook for my family, but my needs are being taken care of also. What a concept. This weekend I had birthday cake, but I insisted on a recipe from scratch. No box cakes. Mike said that it really wasn't hard at all. I've been making things like buttermilk pancakes from scratch too. No big deal. I want to ban all boxed food, but in reality I will keep a few organic type foods under the following condition: I can pronounce and recognize ALL the ingredients. (I've put so many things back on the shelf while grocery shopping using this rule!)

So, how is it going, you ask? I feel good about how I am eating, but I'm not feeling much different and despite my ban on all junk foods I have not lost an ounce of weight. Now, you may say that doesn't matter, it's how I feel that matters. Sure, to a point. But my main goal here is to lose weight. Because that's the key to my getting healthy and reducing risk of cancer recurrence. I am extremely frustrated but I'm going to just keep at it. 

(On a side note that may or may not be related, my thryoid levels were rechecked after 6 weeks of synthroid and they still weren't "optimum" so my dose has been increased. I'm hoping that controlling my hypothyroidism will help. The node on my thryroid was biopsied last week and came out negative for cancer. whew.) 

So.... my plans going forward. I'm reading a lot and still researching diet and health, coming up with my own conclusions based on a lot of people's opinions. One of my goals for the next few months is to up my exercise. It's still pretty cold here, but I can figure out ways to move inside the house. My other goal is to continue to cut down on simple carbs with high glycemic loads. I don't have diabetes and I don't want to get it, this seems like a healthier way to eat. 

We'll see. I'll check back in a few weeks and let you know how it's going. IF anything is going :-D 

2013-A Fresh Start

The beginning of the new year is always a time of reflection, thinking about the past year and everything that happened, and an offering of a fresh new start. I don't really do much to celebrate the new year (we stay in and watch movies, the countdown, then kiss and go to sleep!) I always start the year out feeling good (no hangovers!) and ready to move forward. 

2012 was a tough year, no doubt about it. I can say that physically, it was the worst year of my life. I was scared witless of chemotherapy. All my life I've had the thought that it was the worst thing anyone could ever do to their body. I never thought I'd be doing it. But I made it. I survived. The human body is amazingly beautiful and strong and resilient. And the human brain is amazingly forgetful, thank goodness. I kept journals, I can read about how bad I felt, but thankfully, those memories fade over time, so I don't dwell on them. My last Herceptin treatment is Wednesday then I'm free, but I'm scared too. I won't have anyone monitoring me every 3 weeks. I'll be on my own for months at a time. There are so many conflicting emotions running around my head that I can't quite put them into words yet.

But I won't let fear rule. That's a waste of time. And time is precious. If I've learned one thing this past year it's that time IS precious. We never know how much time we have left so we have to make each day count. I'm not going to go all mushy here... but... hug your loved ones extra tight, tell them you love them. Forgive someone.

What's in store for 2013? I am going to get my health back. I know that the universe laughs at plans and has ways of letting us know we are not in control of The Big Plan. But the little plan is to gain some semblance of control over my body again. Once my Herceptin Treatments are over, I can work on healing my heart. The biggest side effect is heart damage and each successive MUGA heart scan shows decreasing numbers, not in the danger zone, but decreasing nonetheless. Maybe that's why I'm so tired all the time? Anyway, my heart can start healing as my body sheds the last of the chemicals. 

I have to change my entire body chemistry, to prevent any new cancer cells from forming. Being practical here, not negative. I know the stats. HER2+ cancers are more aggressive than non HER2. Twenty years ago it was a death sentence. The cells I had were grade 3, fast growing, aggressive. There is some good news. ER+ cancers are the easiest to control with lifestyle changes. I'm already on estrogen suppressing drugs, the next best thing I can do for my survival is to lose weight. Fat cells store estrogen = bad. The more obese a woman is, the higher the chance of recurrence. Apparently cancer cells also like acidic environments and weakened immune systems. Both side effects of too much sugar. I have a sweet tooth, I'll even say I am addicted to sugar. But it's gotta go. My life depends on it. And of course I need to exercise. I need to get into a routine and make it a part of my day. No excuses. 

So that's what's on the agenda, health-wise, for 2013. Get to a healthy weight. Strengthen my heart and muscles. Put nutritious foods into my body, reject unhealthy foods. Getting some control back. My battle year may be over, but the war has just begun. I will continue to write about my next battles, my fight for health. It makes me feel more accountable for my choices and actions when I tell them out loud. Even if no one is listening. But if it helps just one person know they are not alone, it's worth it. 

Happy New Year everyone! I will keep you posted on everything going on and check in next week.

Health, Hair, Huh? (WTF did I do?)

Well, it's been long enough, hasn't it? No, not my hair, just the time since my last update :-D (trying to keep a sense of humor here, bear with me...)  

On the health front, things are going well when you think about what this time last year looked like. Exactly one year ago, I had two surgeries done with and had an egg beater inserted into my breast so I could start radiation two days before Christmas. I had cut my hair short already, in anticipation of what chemo would do to me. I was scared but I knew I wasn't alone and I was ready to fight like a girl.

Over the course of the year I've had three more surgeries - two failed attempts at placing a port and one that finally got it right. I've had six rounds of poisonous cell killing chemotherapy, with 20 rounds of Herceptin weekly during that time. And 12 rounds of Herceptin by itself since. On January 9th I go for my very last infusion of Herceptin. Then I'm done. 

But it's never really over is it? It will never be over. I will live the rest of my life "on call", being extra vigilant about every ache, pain, bump and lump. Waiting. 

It seems pretty stupid to be worrying about hair, doesn't it? 

Today I wanted to get my hair around my ears trimmed. I went to a cheap walk in place. The stylist asked if I wanted the rest of my hair evened out. I said sure. It was starting to look a little out of control. When she was done, my first reaction (in my head) was "What the &*$% did I just do???" She took about 4 months of growth off my head. Now I have short hair. REALLY short hair. Sure, it's styled and layered nicely. But my gosh, did I mention it's short? On purpose? I'm so sad for all the hair that got chopped off, it took me such a long time to get to the point I was at. Then I think... I'm such an idiot to worry about it. Look at everything I've been through. It's only hair. It'll keep growing. 

But I never wanted a boy cut... 

Here are some pictures, for entertainment only :-D 

Here is a "before" picture of my bad-ass mohawk look. It was actually taken about three weeks ago: 

 And my Happy Mohawk look. I actually had several inches there on top of my head.

The back was getting really thick and wavy. I had already gotten it trimmed around the neckline and around the ears already.

Okay, I'm well aware that I look like a huge dork with a mohawk. It just wasn't a good look for me. I was just kidding around with the camera. I usually blow dried it so I had more of a flat look. Too bad I don't have a picture of my normal style. I had a very deep side part and swept it toward the front. The top was thick and I had a fringy bang. 

This is what my hair looks like today. It's a smidge over an inch long... all over, including the back.

  Fine. It's short. I can't get it back. I can't do anything about it now. Regret will get me nowhere. I will learn to accept it and love it. It'll grow again. And it'll fit better under that blue wig I wanted for Christmas... 

It's only hair... 
It's only hair... 
It's only hair...  

The Color of October

What October looks like.

I love Autumn but October has become a hard month to get through. Everywhere I look, I see Pink. Don't get me wrong, Pink is good... it's the color of Breast Cancer Awareness, Education, Funding, Research, and Camaraderie. A reminder to get your mammogram. It's also a big fat reminder "You are now a permanent member of this group!" A fighter, a survivor. Not that I would ever forget. I think it's important to remember, it keeps fuel in the fire to do something about this Beast we call cancer. 

To mark my one year Cancerversary (has it been a year already?) I have decided to participate in the Making Strides Against Breast Cancer 5K Walk this Sunday at the Chicago Premium Outlet Mall. I am raising money for the American Cancer Society, who have been amazing in the services they offer to cancer patients of all kinds, not just breast cancer. I am the captain of a very small team... it'll be me and my daughter, and my sister and nephew. Here's a very short video about the importance of the event. I love the lady who says "normally I would say to look at my face" lol.

If you would like to make a last minute donation to Team Cousineau, please click on this special message from me:  KICK CANCERS ASS  Haha. I'm at 84% of my goal of $1000, which is way more than I ever dreamed I could raise and I want to thank everyone who has already donated. It means a lot to me. 

*******

This past week has been especially hard. One week ago I had to let my fur-baby go. She was 15 1/2 years old and had a good long life with her family who loved her so very much. She was truly the best dog in the world and loved us back just as much. While I knew the time was coming, the event was sudden and traumatic and heartbreaking. I wrote about it on my other blog HERE. My friend Janet made me a little tribute to Maddy, I still want to cry when I look at it but it also makes me smile thinking of her with butterfly wings. Oh, the squirrels she can catch if she just had wings! 

I'm still getting used to life without her... every once in awhile I get a rush of adrenaline and think "I forgot to let Maddy out!" or "I forgot to feed her!" Habits are hard to let go... I don't need to let her out first thing in the morning or last thing before bed. No more walks to the bus stop. No racing through the house like a maniac every morning. No more dog waiting for me in the hall when I open the bathroom door. I feel like there's a little hole in my heart and I miss her so much! 

Moving on before I start crying again... how about a hair update? Even though there's not much to update! My friend P says that it's growing...  I guess because I see it every day it's hard for me to tell. I can tell that it's thicker all over, it looks like a head full of hair finally. But the length just isn't  happening fast enough. I suspect that the Tamoxifen I have to take is slowing the hair growth. My nails (fingers and toes) are the same. My finger nails break to the quick and flake. My toenails are just ugly... 6 months ago when I finished chemo that last round did a number on them. They started detaching about half way down and some developed a ridge at that growth point. Six months later, they've grown about 1/8". If the hair on my head and my nails grew as fast as the hair on my legs, I'd be happier! Here are some pictures: 

I don't think the hair looks like it's meant to be that way... yet. But I'm getting there. I think I can confuse some people already. I was watching the Ellen Degeneres show this afternoon and noticed her hair was pretty short... on purpose! And it looks pretty too.

Ellen Degeneres

Maybe in another six months mine will grow that much and I can actually style it. Truthfully, it really doesn't bother me that much. It's easy to take care of and it's kinda like my badge of honor right now. I worked hard for this hair, right? It's hard to capture it with  pictures but in real life it looks much better... it also comes with confidence. 

And that's what beauty is all about, isn't it?

Faux-hawk, mohawk, NOhawk.

Hellooo! 
Another update from me, you can all rejoice now. Okay you can stop now.

It's been exactly 7 weeks since my last update. Shame on me. What's new? Some parts of me are thrilled, some parts are very frustrated. Like my head parts. I want to rip my hair out. If I had any to rip out, ha! Seriously, my hair is growing SO slow it's maddening and frustrating. And it's not just my hair, but my fingernails and toenails too. My fingernails are so short I can't grab stuff. They keep breaking off shorter and shorter. My hair doesn't look a whole lot different either, maybe a bit thicker but not in length. Oh sure, but the hair on my LEGS is growing. How fair is that?? 

Here it looks a little blonde. But not in real life.

That's all there is! 

It's been FIVE months since my last chemotherapy session and this is all I have to show for it. Harumph. I can't even get a decent faux-hawk going. I still look like a chemo patient - because nobody in their right mind would cut their hair this short of purpose! I seriously thought I'd have some styling options by now. I know, I know, it could be worse. But I haven't done a whole lot of complaining throughout my ordeal so I'm making up for it now :-) 

Other than that, I'm feeling... just OK. The surge of energy I had a few months ago has left me again. I am exhausted more often than not. Some days I just can't make it without having to close my eyes for a bit of a cat nap. I hate that I rely on caffeine to get me through the day. Because soon I may have to give it up. (At least some of it.) I don't think the fatigue is the result of the chemotherapy anymore. I think it's the result of the crappy nights of sleep I'm getting. Or I should say crappy sleep at night. I feel like I have a newborn again. It's called a broken hypothalamus and screwed up temperature regulator. Or maybe it's called Tamoxifin? Tam for short... my newborn baby. Wakes me up about 4-5 times a night. 

Here's the routine. I go to sleep, usually shivering cold. *I cover up in a thin cotton blanket and a fleece blanket. It takes about 3 minutes to warm up and stop shaking. Then I start sweating. I throw all the blankets off of me and sometimes lift my tank top to expose my midriff, and fan myself cool. After about 5 minutes it passes and I can cover myself with the thin cotton blanket and fall asleep. About an hour later I wake up shivering all over. Repeat from * about 5 times a night. Is it any wonder I'm exhausted? 

I also saw an endocrinologist about my chronic vitamin D deficiency. Actually I saw the Nurse Practitioner because the doctor is booked 4 months in advance. After sitting for an hour answering tons of medical and history questions (which, interestingly enough, were the SAME questions I spent hours filling out at home before the appointment!) she came up empty handed. She talked it over with the Dr. the next day and they decided to increase my Vitamin D intake to 50,000 IU twice a week. I'll have to go back and get retested mid November and another appointment with the Dr. in December. They did ask me if I had any history in my family of Celiac disease. Thinking maybe a malabsorption issue? They are going to test me for it in November. Which is frustrating as heck, because if there's something I can be doing about it, like going gluten-free, I don't want to wait till December to find out about it. I am feeling incredibly out of balance in terms of nutrition and diet.

I had to have another MUGA scan of my heart last week. To see if the Herceptin is damaging it at all. I always thought my baseline number was 66 but it turns out it was 56. After three months of Herceptin it was 68. And this last test it was 61. I know no one is worried about it because anything over 50 is normal, so the nice tech tells me. He couldn't actually tell me the number but he told me anyway without actually telling me. He was so cute. Except when he gasped while injecting radioactive material into my vein. I hate it when that happens.

Anyway, I'm shivering now so I need to bundle up and get some sleep. I shouldn't have had that 10 minute cat nap at 9:30 tonight....  I'll let you know when my hair actually starts growing and something interesting happens.

50 Shades of Grey Hair.

I've been getting some subtle (and not so subtle-you know who you are) hints that I need to update my blog. Well, I guess they're right. I see it's been awhile.


Life has been slowly getting back to normal. Whatever that means. I have a feeling that nothing is every really going to be normal again, but I'm finding my "new normal".  It has been 13 weeks and two days since the last chemo session. My body is thankful that it's over. I am thankful that my body handled it as well as it did. Every cycle I could feel it rebounding and healing on a daily basis. I have a much greater appreciation for the physical body, what an amazing machine it is! 


So, 13 weeks out... how goes it? Very well I think. I had a checkup last Monday with the oncologist and he mentioned 4 times how well I'm doing. Of all the side effects I was experiencing, I have very few remaining. The neuropathy remains in my toes on my right foot. They are just slightly numb. My feet get a bit numb when I walk for more than two miles. (Yes, did you hear that? When I was on vacation last month, I took some long walks. I had the energy to go for 2+ mile walks several times a week.) The surgery site (ground zero) is still pretty tender inside. And I still have night sweats and day sweats. Okay. Hot flashes. I just hate that word. The neuropathy should go away. The tenderness in the breast should subside. The hot flashes are here to stay. 


I started on Tamoxifen on Wednesday. I wasn't looking forward to this at all. I've heard horror stories about this drug in the past. And I don't want to hear any more. So if you're inclined to tell me how you reacted so badly, please don't. I need to take this medicine. Statistics show that women who partake in hormone treatment in addition to chemo/radiation double their chances for the cancer NOT coming back. I bet that could have been said a better way... but my brain function is probably the other thing that is still effected by the chemo. 


Focus Lisa. I feel like I have developed some sort of ADD. I have a hard time focusing on the task at hand. My brain is always going and going but it's hard to settle down and get something done from start to finish. I started making lists. Sometimes my brain gets so overwhelmed by all I have to do that it just wants to shut down and sleep. At times it's hard to get a thought out. Other times it feels manic and just wants to make friends.


Does anyone want a hair update? I haz hair! It's about 1/4" to 1/2" long. The front/hairline is growing a lot slower than the back and sides. It's not coming in curly but that's okay. I can't seem to get a decent picture of my head though. Most pictures you can't really see my hair, or there's a glaring bright reflection on my head which looks funny. I'll have to ask hubby to try to get a picture of my head. Wait, I just stuck my head in front of my laptop's photobooth camera. You can see me in all my unmade-up glory, lacking eyebrows and eye makeup and all. I look a little like my brother.  (It's weird. During chemo I started wearing makeup again and now I feel nekkid without it. Especially my eyebrows.)

I fear that I've seen the last of my blond tresses. Unless it comes from a bottle. Somebody described my hair as "salt and pepper" the other day. Yes, the only thing 50 shades of grey in my house is my hair! It's still in that awkward stage... too short to actually look like it was meant to be that short. But not quite that "bald-chemo" look either. I am highly recognizable for sure! 


It's funny, I was at the CHA (Craft and Hobby Association) Tradeshow last week. I took three workshops on Monday, walked the floor with my husband on Tuesday and went back Wednesday by myself to study the "make and takes", meet some vendors, and attend a few conferences. A lot of people recognized me from day to day. (I've always been a wallflower and blended into the woodwork.) I just smiled a lot. I met a fellow breast cancer survivor who approached me and we traded war stories. It was quite an experience. 


I'm glad to have my hair back though. It's hotter than Hades here in Chicago this summer. I haven't worn a scarf since vacation mid June. Hats are for shading from the sun. I'm not embarrassed the least bit. I even feel a little bad-ass. And I've only had positive reactions from people, bless them all. I've developed the habit of "petting my head" when I'm nervous and need calming down. You know how they say that stroking a dog or cat reduce blood pressure? So does petting my head. My blood pressure is excellent!


I'll talk to you all soon!

A Spoonful of Wisdom

I did it. I did something that was very difficult for me... Those first few baby steps that have opened the door and released my fears to the wind. I have proudly displayed my hair-challenged head to thousands of people. A cloudy day, I didn't need my hat and it was way too warm for a doo-rag. I went without. And tomorrow it will be easier.

I'm wondering... What did I fear? I didn't think people would laugh at me. Maybe I didn't want anyone to pity me? I don't like being the center of attention... I certainly don't think I'm ugly. Why did I insist on slipping that hat on every time I got out of the car and around other people? I still don't really know.

All I know is that I walked around a crowded tourist destination, which included a short hike along a lake and a nice lunch with my awesome kid, and the world didn't end. Kids didn't run screaming from me. As a matter of fact, a little boy named Benjamin introduced me to his newborn brother Alexander, as I was walking past his family. I engaged him in conversation for a few minutes, just wondering for a few seconds what his dad was thinking of the bald-ish chick his son was talking to.

An extraordinary amount of women looked me in the eye and smiled and said hello. Like they knew something.

I encouraged my daughter, who is into making stop motion movies with her American Girl doll, to take "Izzy" along so we could work on a photoshoot. She was embarrassed to be seen posing her doll and snapping photos of it in front of other people. What is wrong with this child? She's not embarrassed to hang out with a bald mom but doesn't want to be seen taking pictures of a doll? I tried to tell her that it doesn't matter what other people think. They'll most likely think she's cool for doing something like that. I said they would not laugh at her. But mostly to "not let your fears of what others 'might' think stop you from doing what you set out to do."

Then I thought... DUH!

Lesson learned.

We went to the beach later and I didn't wear my hat. And I'm not going to tomorrow either.

One week into the rest of my life

Hi everyone! I thought I would give an update as to how this LAST round of chemo went. I am thrilled to tell you that I got through it pretty well! As you know I was really worried because Round 5 was hellish, very painful, and mentally challenging. And knowing chemo is cumulative, I was very worried. But... all is well. Tuesday marks a week post-chemo and I'm feeling very tired, but good.

I was down on the couch Wednesday afternoon, Thursday and Friday, but they were more of a "take some Tylenol, snuggle in a blanket with the remote, and watch stupid TV and doze" types of days. No major pains, no fevers, few chills, and no descending mental darkness. For this I am grateful.

I've got the typical post chemo symptoms - ferret in the stomach, numb toes, dead taste buds, sore mouth, hot flashes... the next few days I know I will see GI issues and of course the fatigue and muscle aches. Some of my fingernails are separating a bit from the bed but it's nothing a little Formaldehyde-free nail polish from Whole Foods can't cure :-) But all those are tolerable. Because I know they will slowly subside and I don't have to put myself through it anymore.

I got a delicious night sleep Friday night, first time in about 3 months. I slept three hours, got up to pee, and slept another FIVE hours. Like, straight, no sweating or chilling, or bone aches, or anything. Just dreams. I felt so good on Saturday. I managed to shower and dress and take a trip to the grocery store (don't worry, with my little helper!) We came home and I napped a bit and then went cell phone shopping and out to Portillo's to dinner. It felt so good to get out of the house for a few hours like a normal person! I missed a family party on Saturday-I'm not sure I could have handled hours in a car and party food. But my family will forgive me, I know.

And it's only going to get better from here on out, isn't it?

Here we go again...

Tuesday (tomorrow) is my LAST chemotherapy treatment. I have a lot of emotions running through my head. I thought this day would never come. I'm excited to get this over with. I'm dreading feeling sick for the next weeks and the fatigue that comes with the healing of the cells that were killed. I'm excited to get some semblance of a life back. To feel good again. To go for walks and bike rides without hurting. I want to climb mountains this summer. Or at least big hills.

I do have to remind myself that I'm not quite done though. (Is a cancer survivor ever done?) The nurses will sing for me tomorrow. But I will see them Wednesday for my last Neulesta shot. And next Tuesday for another less invasive treatment. And the next Tuesday, and the next. Then every three weeks for this Herceptin treatment, until next January. So I will still have to go to the Cancer Center and get hooked up and all that. But this Herceptin treatment doesn't make me sick like the chemo. Doesn't make my bones and muscles hurt and doesn't kill the fast growing cells in my body. It'll be interesting to see what side effects it does have, by itself, without the nasty chemo. Good news is, I had a MUGA heart scan last Friday and my heart is still as healthy as it was when we started.

Best of all... is that my hair will grow back! I have a confession... I HATE being bald. I am sick and tired of wearing hats. Or scarves or head coverings. And it's not because of how I look bald. When I have makeup on (like eyebrows!) and earrings, I think I look okay. But for some reason I have not ventured in public as a bald chick. My head is COLD all the time. Even hanging around the house, it's cold. Except of course when it's HOT. It's one or the other. Never a comfortable in-between. I wear a hat or scarf. My head gets hot. I take the hat or scarf off. My head gets cold. My temperature regulator is broken. (I won't even talk about night time!)

If I could regulate my temperature and not have this issue, it wouldn't be bad at all. There are some definite advantages of being hairless: 

1. I can get ready in the morning in about 15 minutes and that includes showering and putting on makeup. 
2. Not having to blow dry my hair and making my scalp and dry and itchy. (No dry flaky scalp now!)
3. No one can blame me for clogging up the shower drain with hair! 
4. Save money on shampoo and conditioner (and frizz-ease, and other styling products)
5. It's impossible to have a bad hair day! 
6. I haven't had to shave my armpits in months! 
7. Or my legs! 
8. Or... well, we won't even go there!

That's all I can think of for now... if anyone has any other advantages, leave a comment.

I need to take my steroids before I turn out the light. I hate taking them. They wire my brain and cause insomnia. I can lay here with my eyes closed but my mind will be ticking and tomorrow I'll be tired and cranky. They will cause flushing and a red rash on my cheeks (like a sunburn that will flake and peel over the week.) They will cause water retention; a puffy moon face. They make me want to eat but the chemo will make me want to puke. But I'm a good girl. I take them because they're supposed to cut down on any allergic reactions to the chemo and help combat nausea and vomiting.

But this is the last time, right? I can do this.

The Truth.

This is not a post to invoke sympathy or pity. Positive thoughts, prayers and comments are always appreciated but I'm not writing this for that purpose. I just want, no, need to tell it like it is.

I'm having a hard time writing this... I don't want to be negative, but my goodness, how can I not be if I want to tell the truth? I don't want to sound like I'm whining and I don't want to appear weak. I know others who are going through tougher regimens. But I would be doing myself an injustice if I skipped this part and sugar coated it into the background. My goal is not to scare anyone, but to be truthful.

The Truth is... chemo sucks. No surprise there, right?

This round of chemo, round 5 out of 6, really kicked my ass this time. I knew the side effects were cumulative, but still... Last Tuesday was a normal day of infusion, but the night time began the nightmare. Severe lack of sleep despite sleep aids. Wednesday I completed some work and went to get my Neulesta shot but was so out of it. I told myself I'd take Thursday off. I packed a few orders and parked on the couch watching bad daytime TV and Lifetime Movies. My bones began to ache. My heart started fluttering. My stomach felt like it had a brick in it. My muscles ached and started spasming. Restless legs and body. My fingers and toes were numb but at the same time sharp little pinpricks would stab them. My head was dizzy and my balance was off. That lasted all day and into the night and I thought I might just die on Friday and Saturday. My brain didn't really care. I think I left the couch about 4 times to pee. I'm grateful MrC and LilC were home from school because I was scared to be alone. (They probably don't know this.) I couldn't function. I couldn't get up. I drifted in and out sleep all day, trying to get comfortable with my aching bones and muscles. Hat on, hat off. Hat on, hat off. Etc. I ran a slight fever those two days. Not enough to call the doctor, it was only the mid 99's and I was told to call when it's 100.5. But it still made me feel like crap.

MrC took care of everything, setting up play dates for LilC, driving her, making dinner, going grocery shopping, packing orders, etc. I just lay there and didn't care. That's the part that scared me the most. My brain wasn't functioning like normal. I had no energy to even think. I just wanted to cry. And slip into an oblivion where everything goes away...

Today is Sunday. I feel a bit better today. Walking across the house exhausts me but I'm awake and vertical. I even sat at my desk for a few hours and worked on some art work. I read and answered some emails. My stomach feels like the Ferrets are playing toss with bricks, but I was able to eat a sweet potato for lunch and a chicken breast and rice for dinner. And some ice cream to cool my mouth. My mouth feels like my taste buds are burned off. This I expected. But I didn't expect my mouth and the sink to fill with blood when I brushed my teeth with my Winnie-the-Pooh toddler toothbrush! I can feel more mouth sores forming as I write...

I'm scared.

I'm scared about what the next cycle will be like. Every cycle has been worse than the one before. Exponentially worse, not just a "little worse." I am 5 days past my infusion and I am already feeling anxiety about the next one. I don't want to do it. I find it hard to breathe when I think about it. I have to keep telling myself that it's my last one. That's the ONLY thing that calms me down a little bit. But then I think, what if it kills me? Wouldn't that suck?

I just want this to be over. I know that tomorrow I will feel a little better. (My rational brain is coming back.) And the next day will be better. And so on. In a week I'll start forgetting how bad I actually felt. (Isn't the brain amazing?) In two weeks I'll feel good, normal even. And I will do what I can to recover my strength and repair my cells so I'm in the best shape I can be for next time. And soon it will all be over and I can start living a normal life again. Although that's a misnomer because I have a feeling things will never be normal again.

But for now I'll deal with the guilt of "cancelling Easter" for LilC... not a chocolate bunny nor a colorful Easter egg was to be found here :-( I'm so sorry.