Month: March 2015

Day 29: Openness and the unknown.

Day 29: Openness and the unknown.

I have gotten a lot of amazing messages, mail and email for sharing my journey so bluntly. I have also had a lot of people ask why I am so open about this cancer journey of mine.

There are very few things you can control in this process. Writing is something I can. Not to mention, through this process of sharing I have heard from so many cancer warriors. The advice and camaraderie are critical – at a time when daily I face the unknown, it is so important to me to hear from those who have been there and those who are there with me going through this right now.

Writing has also unintentionally created prayer and positive energy warriors that I am ever so thankful for – when my positive energy cup starts to feel a little low, someone seems to always be there to help refill it.

Cancer is annoying and sneaky. I still don’t look or feel sick. Thing is, once I start treatment I certainly will. I suppose part of being open about it is trying to mentally get ahead of the physical changes we know are coming. Well, prepping myself more than anyone else. LOL. But even if I don’t lose my hair and am blessed with just needing radiation and get to skip Chemo… I am still losing my breasts… And although temporary they won’t be back for 8-12 months. I will certainly look different. 😬

The unknown is a challenge – especially for a someone who considers themselves a control freak… I’ve been lucky and not been sick much in my life. So heck, all this is unknown to me.

What can you do though? For me it seems I can either face it with fear or embrace it as an adventure. I’m choosing adventure.

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ ‪#‎killerleftboob‬ ‪#‎hawtrightboob‬ ‪#‎breastcancer‬

Day 28: DENIED… No PET Scan… Macy is off the hook….

Day 28: DENIED… No PET Scan… Macy is off the hook….

So, insurance denied the PET Scan, which the doctors office told me is not that uncommon due to expense. So tomorrow morning I go in for a bone scan and CT of my abdomen, chest and pelvis. (Try not to let that green eye of envy show….) The Oncologist really wants to make sure we know what and where and that we do our due diligence. But patience is running out… feels like a ticking time bomb is living in ‪#‎killerleftboob‬… and I don’t like it… not one bit.

So I guess tomorrow I get injected with some radioactive isotopes, which have to hang out in my body for 3 hours, but while we are waiting for them to do their thing… which would be bind to my bones, I will be getting the CTs. I really am ready to get moving after these tests though. We are done right? I mean… they are finally out of tests right??  We will see if I am glowing tomorrow night from all the radiation.

In other news, we have decided to sell the house in Snohomish, we are going to try this “For Sale by Owner” thing, if anyone out there has any experience or advice, feel free to weigh in…

Thing is… Cancer is not cheap, let it never be said that I have cheap taste in anything….  So looking at paying a realtor points (which are well earned and well deserved… don’t get me wrong) vs. paying for Chemotherapy… well… I am leaning towards paying for the Chemo… I know I know… I really know how to party!

This also means that Rick will be looking for a place to rent up North, since his work down here is finishing up and he will be working in the Seattle area for awhile. So…. if you know of any fabulous rental opportunities in the Seattle, Bellevue, Renton, Bothell area be sure to let us know.

No pH update today.. I forgot. 20mg of Melatonin is a serious amount of Melatonin! Hope my body adjusts to this…. holy heck!

Oh and good news! I still like the haircut today. Lisa was a real trooper… she had no idea we would basically be spending 5 hours in the salon… (Did I forget to mention that?) I do keep reaching for my hair to pull it out of my jacket, etc. Good thing is that if I really miss it, I can pull it out of the baggy I have stored in…

And hey – I love you guys. You are all amazing. Your love, positive energy, prayers, humor and support keep my spirits high. Seriously. I appreciate you.

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ #killerleftboob ‪#‎hawtrightboob‬ ‪#‎breastcancer‬

Day 26: Embracing the day and setting expectations

Day 26: Embracing the day and setting expectations

So when talking with the surgeon he was saying to plan to be out of the office for a week but after that I should be back in the swing of things with most my activities. Now, I find this hard to believe with the amount of tissue basically being “amputated” from my body – so I did a little research. Most post mastectomy write-ups say to prepare for 6-8 weeks of healing before anything near normal activity.

Now my mom (Sandy) is the opposite extreme, she is planning for a hospital bed to be delivered and 12 weeks of recovery. (Yes she is reading this and she knows I am talking about her.)

So somewhere between superhuman amazon queen and helpless as a church mouse is where I expect to find myself. One thing for certain, I will be going crazy after about 7 days… just sayin’.

Now this whole drainage tube thing and measuring of fluid is the part I am most stuck on right now. I am not getting past the “EW” factor on that… nope. Just not. I will have to get past it, I realize this, but it just might not happen until I am forced to face it. I imagine that after 3 surgeries a year and a half from now I will be a pro at it!

The weather is simply beautiful right now. It was nice to sit in the quiet, listen to the wind work its way through the tree tops and the squirrels and sapsuckers converse. It was probably the most active I have been in well… 26 days. It was also great to get in a little rifle training. I love target shooting, it requires focus, discipline, self control on everything from your position to your breathing. My cluster was within 6.25” at 300 yards with a bulls-eye… yeah… that is something to write home about.

All this reminds me how important staying active and being in nature is to mental outlook and energy level. 

Today is a work from home day and a day to do something with some sweet potatoes as part of my lunch plan for the week next week. I discovered some curried cashews that are great, other than per all my reading raw would be better than roasted, and sprouted better yet. I need to figure out how to season some sprouted cashews – I have a feeling spice is going to matter a lot in my new food adventures! May need to go shopping with Namita or Vish and get a lesson on spices!!

pH 7.5 today. That is actually impressively better for just a day. 

Make it a beautiful one guys!

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ ‪#‎killerleftboob‬ ‪#‎hawtrightboob‬ ‪#‎breastcancer‬

Day 25: East vs. West, a small success and a funny

Day 25: East vs. West, a small success and a funny

Met with the surgeon yesterday. I got the impression that he did not care for Naturopathic treatments. I have seen a Naturopath most my life, since I had a stroke at age 25 actually. But that is a different story. One of the things I always find interesting about Western medicine is “ranges” on blood workups. For example, my Vit D is 27.3, the surgeons office recommended I take 2000IU daily, the Oncologist bumped it to 10,000. The Surgeon made a comment… “Well “normal is 30” – what did they bump you up to? 50,000?” The range for normal is 30-80. The Oncologist wants to see my Vit D at 60-80. Apparently Vit D is critical to immune strength – which I will be needing over the next few months.

The surgeon mentioned that MRI’s tend to exaggerate tumor size. So I did a little web research (whatever did we do before the inTARwebs?), seems that about 30% of the time MRI exaggerates by .66 cm when contrast is used. Mine have apparently increased in size by 3cm and 3.6cm. He did say that based on size alone this would put me at Stage 2 without knowing for sure whether it is in the lymph nodes or elsewhere. He wants to wait until after we get the PET Scan results to decide on whether we will do surgery first or chemotherapy first.

We should hear Monday on pre-authorization and hope to get the PET Scan done early in the week so hopefully we can get moving on getting rid of it. I am a data person, so I love getting all the data, but at some point you start to feel like… seriously? have we not analyzed the crud out of it yet?  Of course, the peace of mind or reality sammich a PET Scan will offer will make it worth the wait.

We also talked about what to expect post surgery. In a word… EW. So so so much EW.

Ok so some wins… in my search for food stuffs that are alkaline and realizing that most my normal foods are now off the menu I am starting to find new options. So… successes:

  • Thank you Shannon, I found some instant Cafix and it is actually alkalizing to boot! Mixing with a half of a Starbucks Via in hopes that people will still like me as I transition off the coffee and to the teas
  • Unsweetened Coconut Milk is pretty good. It is not like milk nor is it like cream and the flavor is not too strong of coconut, it is mildly alkalizing and so far it compliments my organic vanilla tea (thank you Suzanne) beautifully.
  • Quinoa is going to be one of my new go-to foods. Made a chai spiced quinoa porridge with chia seeds, cinnamon, vanilla, nutmeg, ginger and coconut milk. Added dried fig, dried apricot, slivered almonds and dried dates with a smidge of 100% organic maple syrup and liked it very much. Very filling and doesn’t take much.

My pH was 6.5 this morning. Goal to get it above 7.

Oh and the funny. The Surgeon wanted to do another breast exam to see if he could identify the borders of the tumors… (yeah yeah…). Anyway, I said to him: “You know, just last night I told Rick that the next man that touched my #killerleftboob was gonna punched in the throat.” He looks at Rick, awkward pause, Rick says, “I didn’t touch it… so your up.” No, I didn’t punch him… may have fantasized a little… it hurts people… oi!

As all’y’all have figured out by now… I cope with bad jokes and humor.

#strongerthancancer #embracingtheadventure #killerleftboob #hawtrightboob #breastcancer

Day 24: But it isn’t supposed to be aggressive?

Macy Dog PET Scan WhatDay 24: But it isn’t supposed to be aggressive?

Met with an oncologist yesterday, I should say “interviewed.” I feel pretty lucky that really the only question mark has been the plastics member of the team, but I have time to find that person.

Great news, this guy says he has zero cases of relapses from his early stage breast cancer patients. YAY! He also coordinates with a naturopath and Chinese medicine. The goal being to support your immune system and have it engaged in the fight.

Bad news, my tumors are significantly bigger on the MRI as compared to the reports from the mammogram and ultrasound. They were 1.3cm and 3cm and now they are showing as 5.6 and 4.3. I have had the same radiologist for all reports and the oncologist will be giving him a call to see what his thoughts are on why. There is still swelling and there is a large hematoma noted on the MRI as well. According to the Oncologist there are a few things to note, 1) this should not be aggressive per pathology due to the low nuclear grade and HER2 results. 2) If they truly are that size we may want to consider neoadjuvant (before surgery) chemotherapy to reduce tumor size and make sure that the borders are easier to identify for the surgeon.

The Oncologist also said that tumors around 1cm have about a 10% chance of metastasizing where as tumors around 5cm have about 50% of metastasizing. So… guess who is getting a PET scan ordered?  I will tell you, a good good friend of mine wished and prayed for me to have one, having been through this she said she just prayed for me to know. With this tumor size, he wants to make sure it is not in the chest wall or anywhere else before surgery. We are still hoping this will just be considered “locally advanced.”

He bumped my vitamin D to 10,000 IU daily and wants me taking 20mg of Melatonin which left me feeling like a hungover sailer this morning (apologies to all you sailors out there). He also wants me to avoid Soy products due to estrogen and this being ER+. Food is gonna get complicated… and now I do need to be serious about kicking coffee and sugar out of my diet. *sigh* Cruelest thing yet…. Green tea is not countering melatonin hangover.

I see the surgeon today. I talked through surgery with the Oncologist and he supported removing both for the reasons I laid out as I understand them. I keep telling the doctors, tell me if this is BS, I am doing my own research and if I am speaking an internet BS story correct me…. but this is what we know is true: 10% of breast cancer is this type of breast cancer, at least 20% of this type of cancer is bilateral, this type of cancer does not show up on mammogram, *might* as it advances show up on ultrasound, and truthfully can even be missed with MRI. So, although my ‪#‎hawtrightbreast‬ came back via MRI as cancer free, it did have some fibroids or something in there … and face it… bottom line is that yearly I would be having exams that would not really tell me if I had cancer until it had advanced enough to be a tumor like now on ‪#‎killerleftboob‬

We also talked about hair loss, he said that unfortunately breast cancer chemotherapy drugs tend to cause hair loss, even though it is different with everyone I should be prepared. So…. I cancelled the appointment for hair color and instead will be scheduling to have it cut. If it doesn’t fall out – GREAT – it will grow out again, its just hair. If it does, I will have a good amount to start with when it comes to having a wig made with my own hair. 

So.. we will see what the surgeon thinks when we see him in a few hours. If we do chemo first I am probably 6-10 weeks out before surgery, if the surgeon is confident, we do surgery within the next few weeks.

Oh… and I memed my dog in the image above…

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ #killerleftboob ‪#‎hawtrightboob‬ ‪#‎breastcancer‬

Day 23: Evaluating options

Day 23: Evaluating options

Had a friend stop in the office yesterday to share their Cancer story and remind me to research options and opinions when it comes to treatment. He has a very compelling story and long story short, he gave me his oncologists cell phone number and I am seeing him at 3 today.

This Cancer process is interesting because it is both abysmally slow and wicked fast. Slow in the data getting to you and fast in the appointments and tests and feeling like you have time to analyze the data as it makes it way to you.

Along the way I have had reminders to seek second opinions – but radiology and pathology and data driven, thankfully, so not much opinion in those disciplines. But now we are talking treatment and goodness…, how that does vary and doctors all have different thoughts. Gyno/General says just take out ‪#‎killerleftboob‬, surgeon says may as well take ‪#‎hawtrightboob‬ too… And the guy today? Story is he prefers no surgery unless we can’t get rid of it through other methods. I’ll find out for sure what his story is this afternoon.

This will “probably” be decision weekend. Or, to put it another way, *If* no more tests are ordered, *then* it’s decision time, *else* go through more tests and evaluate more data

I see the surgeon again tomorrow.

I feel so popular… All these people wanting to see me.

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ #killerleftboob #hawtrightboob ‪#‎breastcancer‬

Day 21: I am doing a lot of future speak and succession planning.

Day 21: I am doing a lot of future speak and succession planning.

Cashmere Love 2 Brother Loves CashmereFirst I have to say thanks to some amazing people! My mother-in-law Joyce sent me another super fantabulous cashmere hat (modeled below by myself and my brother). Clint liked how soft the cashmere was. I was afraid I wouldn’t get the hat back!

Rock star Jolene sent me “Cooking at Harmony Hill, Recipes for Hope and Healing.” Mom and I are very excited to check out the recipes and I need to take mom and sis for field trip to Harmony Hill.

Amazing friend, fellow warrior and survivor Vanessa sent me “A Breast Cancer Alphabet” which looks like an amazing book! I can’t wait to read it!

My awesome bother and sister brought fresh flowers. Thanks Clint and Jennifer! And mom is getting us ready – she is definitely our project manager!

So much positive energy and love!

So as you guys know – I stay busy in the community and of course when we hear the word Cancer we think awful things. Some of us think this way from personal experience – some because of what we have read – and some is just us processing the information and looking through our own looking glass of our personal coping mechanisms. I spend a good amount of time on succession planning and in fact I told a friend my life is a long series of if-then-else statements right now because I don’t have all the data. For example: *If* MRI shows right boob is clear of cancer *then* I have a decision to make *else* decision is made for me. Pretty much everything in my life is like that right now.

Had a long conversation with a wonderful collaborator as we were looking at future projects and they were concerned with pain and me needing months away to recover. Reality is that I am going to be in pain for about the next year and a half. If I am lucky we are talking just three surgeries over the course of the year-year and a half. *If* Cancer in sentinel lymph nodes *then* more surgery *else* celebrate.

My personal value is derived from my work ethic and working in the community to help strengthen our community. I know I will be in the hospital post surgery but once I am out of that initial surgical fog I have to be busy or I will be climbing the walls.

I don’t know if this is a “small town” thing but businesses and community partners have just been amazing. Everyone has been supportive and accommodating. I am just blown away.

Super cool thing? Yesterday actually felt like a good productive day! No doctor appointment interruptions. Looking forward to another one of those today!

‪#‎strongerthancancer‬ ‪#‎embracingtheadventure‬ ‪#‎killerleftboob‬ ‪#‎hawtrightboob‬ ‪#‎breastcancer‬