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.