Monthly Archives: February 2013
I have mentioned that the type of cancer I have doesn’t show up on a mammogram. It is even hard to find during a monthly self-exam, which I rarely do (shame on me!). The first indication that I had any trouble was the external appearance of my breast. There was a noticable bulge. Initially I thought it was just hormones. Then we thought it might be scar tissue. You know already how wrong we were. What you may not know is that shortly after we started this party, my normally inverted nipple started to change. I noticed it first, but I didn’t make the connection right away that it had to do with the tumor. I’ve always had inverted nipples, so I’m used to the looking a little weird compared to other women’s nipples. But the one on the right seemed to be positively gaping. It was The Husband’s comment that same morning that made the connection between the tumor, and the gaping nipple. He said “Are there bears living in that cave?” Which was funny, and kind of freaky at the same time, like so much else has been about this experience. I wondered – if I had noticed the bulge a month sooner, would my lymph node be invovled? What if my bone and PET scans show the cancer has by-passed the lymph nodes altogether (save the one) and moved into my bones, my liver, my blood? I didn’t notice the cavernous nipple when I noticed the bulge. Is this thing moving that fast?
Maybe it’s just that my breast has been signficantly mangled and mashed the past few weeks. I normally get twice the mangling every year, due to my fibroid-prone right breast. But for the past three weeks, it’s been a cycle of “mash. mangle. Repeat!” for poor frownie. Maybe she’s registering scorn by making a (even more) scary face at me.
Maybe if I just keep smiling back at her, she’ll see it’s really going to be alright.
Because it is.
Super powers, engage.
This Friday is the bone scan. I’m expecting radioactive pee.
Next Monday is the PET/CT scan, for which I start an extreme version of Atkins on Saturday - low carb, high protein. No bread, no pasta, no fruit, and no sweets. Our weekend plans just took a hit. I can enjoy my steak, but no garlic-mashed potatos for me, and no WINE. WHAT??
So I did a little research on the internet. According to what I read, it’s a low-carb diet before the PET scan. And no caffeine (including decaffeinated beverages, as they have a little caffeine in them) for 24 hours before hand! And NO food for 6 hours before.
I know – don’t bitch. It’s a small price to pay to find out the truth. And I was just saying how everything compared to the BC itsefl is small stuff.
Send positive thoughts The Husband’s way. Mama’s going to be a whiny-cranky-bitch for a few hours.
I got the results from my double-whammy biopsy last week. The lump in my left breast is a benign fibroid. The lymph node next to my tumor in the right breast is cancer. I expected that, but I had hoped for a pleasant surprise. Damn.
My medical team wants to schedule a PET scan and a bone scan, which is fine by me (though a little scary) as it just gives us more data. More data is more ammo in my arsenal to win the war against this thing. As frightening as it is to possibly find out the cancer has spread, it’s better to know now than find out later.
I was just speaking to The Husband. He found a paper from 2005 that speaks about how about 1/3 of BC patients had NO lymph node involvement, and still had their cancer spread to other parts of their body. Since my lymph node is cancerous, I will be getting the extra tests that I probably wouldn’t have gotten if it had come back clean.
Therefore – the cancer in my lymph node is a gift, because now we’re going to look deeper. It’s going to be a pain in my ass – the surgery scheduler (I love her, by the way) told me that you have to eat certain things, and avoid certain things for 3 days prior to one of the tests, I forget which. She said something about carbs, so that can’t be bad. I love carbs.
The two tests can’t be done on the same day, so that’s a pain. It’s going to take more time away from work, and I was really looking forward to boring-normal-work days for a week. And I suspect it’s going to be scary going into those scanners. I’m glad I refilled my anti-anxiety presecription.
My surgery date remains the same, but no pre-operative lympho the day before. The type of surgery will be different. The scheduler (did I mention I love her?) said it would be one of two things, the only one I remember is “modified radical mastectomy” whereas the one I WAS going to have was a “simple mastectomy.” My scheduler commented at the time “doesn’t look simple to me” and now I’m thinking “aren’t all mastectomies radical?” Because it’s not my physical well-being I’m worried about. My biggest hurdle will be my emotional adjustment to my new physical appearance.
*Deep breath, and exhale*
Super powers, engage.
The ultrasound technician told me to avoid wearing deordorant for a few days after my lymph node biopsy. Well it’s been a few days, and I’m tired of smelling like BO on my right side, so I applied, carefully, deodorant to both underarms. BIG mistake. Now my right arm pit is all itchy-stingy-burny, ow, ow, OW!
I’ve known this for a long time, but it never fails to amaze me. If you freely share yourself, your life and experience with people, if you tell them what you’re dealing with, they ALWAYS come through for you in a BIG way. 100, nay, 1000 times more than you could ever imagine or expect.
I’ve had one negative response, and so many more uplifting, empowering, wonderful, loving responses, that the negative is overwhelmed and washed away.
There are so many of you out there fighting battles similar to mine, and you all tell me that you are not only surviving – you are thriving! I have a hunch that in my previous life I was merely “surviving”, that I had not even begun to live, really live, before my battle was begun. I choose to change my life, the way I live it, in order to keep moving forward.
I’ve had a fairly blessed and easy life. We weren’t flush with money growing up, our parents weren’t perfect, we didn’t have some of the things other kids had growing up, but we had the best thing. A dad who worked his ass off to keep a roof over our heads, clothes on our backs, and food on the table. He was a strict dad, but I knew he had my back when things were really tough. I wrecked his jeep, being where I shouldn’t have been, and I knew he would be furious with me. But as that jeep was rolling down our driveway and crashed into another vehicle (the jeep would be totaled and my dad loved that jeep), it was my daddy a screamed for, not my mom or anyone else.
When I wrecked my knee for the first time, it was my dad I wanted, because only daddy could fix this. The moms were there, my mom and our friend’s mom, all the kids (we were visiting, they had four kids, we had four kids). My dad and the other dad were out and about, doing guy stuff. This was before cell phones, so the moms called the paramedics to come pick me up. They took forever. They finally showed up, no lights, no sirens, at the same time as my dad. I was super pissed, and I couldn’t wait for my dad to cuss them out. My dad was a world-class cusser. He and the other dad drove me to the hospital, and my dad sat with me the whole time. Looking back, I realize now he was more scared than I was – but I knew I was fine, because he was there, and would kick someone’s ass if I wasn’t taken care of. And he was making me laugh with his corny jokes, such as “Just think how good it’s going to feel when it stops hurting.” He was right, it did. When my knee cap was put back into place, the rush of endorphins gave me a euphoric high, and it did immediately felt so much better. I was so relieved and grateful, I don’t know if it was to the doctor I was grateful, or my dad for being there. But he was always there, and I took it for granted. I’d love to be able to call my dad right now. I’d love to hear one of his corny jokes when I’m having another biopsy, or when I wake up after my surgery. Makes me even more grateful for my husband, who’s right there with the booby jokes when I need him to be, talking about mastectomy bras as naturally as he can talk about Super Bowl commercials. I love him for that (and for so many other things – he is truly a God-send).
I’ve been suspicious of the content of my own character for many years now - certain that if my character was really tried, I would fail. I have noticed something recently. This is perhaps the biggest trial I have ever undertaken, and I do not think my character will be found wanting. I truly believe that I have the same guts my dad had, the same fighting spirit that my sister has. I’m made of the same “right stuff” as both of them. I don’t know how that is, but it is.
It is pure grace, and I accept it as grace, and do not ask why.
Today we told our daughter what we’ve been dealing with. She was naturally very upset, as we all were when we found out. Once we explained things to her a bit, she was calmer, but I can still see the tears, the fear brimming on the surface. Kind of the way I feel some of the time. We’re lucky her dad is so calm. I wimped out, and made him start the conversation with her. I was there, of course. I just couldn’t start talking about it. It is important that she not see me afraid or crying. And I was sure that if I started, I’d break into tears,
Yesterday we had our first day of relative normalcy – back to a full day of work, and no doctor’s visit, yay! Wednesday was a marathon as you know, and so was Thursday. So a regular Friday was a welcome relief. I had my normal coffee run with my good friend C., who is like family. The admins who run our front desk were cheering for Boobs of Steel, and had already planned out who would cook what to bring to the house so The Husband and the Child would have hot meals while I’m in the hospital and recuperating. I didn’t get much done, partly due to being distracted (and reading too much on the internet again), partly due to everyone stopping by to talk. One of my colleagues was so NOT helpful in her comments. “My mother had breast cancer. I wish I had something positive to say” and looking at me as if I were on borrowed time. My doctor’s office called right then, or I might have said to her, “Take your gloom and doom away from me. I frankly don’t need it, and you are not being helpful with your “sympathy.”
I get it, cancer is a scary word. It’s hard to know what to say, or to know how to act. My advice? If you don’t have something genuinely positive to say, simply say I’m glad to see you and leave it at that. Because I’m not your mother/friend/Great Aunt Hilda. I’m me, and my tumor is like no one else’s, my cancer is like no one else’s. Please don’t make deductions about my survivability based on anyone else’s experience. And for goodness sake, do not pity me, or I will kick your ass.
We are back here at Virgina Mason.. Morning visit to Geneticist.. I will let Tina decide if she wants to share that.
If you read my last post you know we were pretty frustrated after Wednesday. Today we are back on track we are working with the final picture of the data and refining it a bit.
We have had added tests today related to the other breast and one the lymph nodes on the right. All but one are clear and that one is uncertain so we are doing a biopsy.
In this process, the doctors advise and bring the knowledge they paid so dearly for in time and money. But there are people from the ultrasound tech to our surgery scheduler that set the mood often. Amazing people who are positive and helpful along the way. Something in their mood, says “You’ll be alright”
It makes the 5 hours we have been on site, just a bit more bearable.
I still want them to fix what happened to us Tuesday and Wednesday for the future, but there is really a talent for bright compassion that should not be taken for granted here.
So we just met with the cancer team working with us at Virgina Mason. It may just be these people need some business process management and communication training. I am not questioning the team’s skill, nor their dedication to the patient. And they are trying hard to make the process transparent and open. We even got a big binder with our data and reading and all the direct contact info for the team. That impressed me.
But WTF just happened?
Day 5- We get a call less than 24 hours after the MRI. The quote was “No worrisome Lymph nodes” cool. That is means you cut it out, treat the area, watch and move on with much more regular monitoring.
Day 6 – 8:20 am we meet with the oncologyst who will be our long-term treatment manager post surgery. She seems great. We are talking no nodes, ultrasound says 30-40mm something mm, MRI says under 20mm. Hey the big donut to us was the better imaging, but they like to assume the bigger number. So we are at T2 tumor stage. We are talking about surgery to remove the tumor and preserve the breast.. All is good. Heck the mammogram was clear two weeks ago.. so this type or cancer is hard to spot.
8:50ish – Head pops in the door. “BTW since we didn’t ultrasound the nodes before, we just want to get some images tomorrow when you get the other breast biopsied. It doesn’t mean anything”
I’m emailing my manger about “good news” .. we are smiling.. we take it out.. small chance it might not need chemo.. this is great news.
SAME DAY, Just one hour later - 9 something AM after the first team meeting to review everything. Wham we meet the radiation oncologist — WTF just happened?.. within minutes “The team has decided a mastectomy is reccomend. Based on a further reading of the MRI and physical exam.. its looks to be closer to 8cm and there is a node that looks different but not clearly involved. So they will ultrasound it and then decide if its needs to be biopsied. So we are quiet and nodding and “ok.. good, yes uh ha.. that makes sense.. no we don’t have any questions” In my head I do..” WTF just happened!!!”
I am all for good bedside manner, helping the patient keep the stress down… but WTF just happened?
Putting on my project manager / tester hat and doing process review, this is my best guess…
Well meaning people without full data, were allowed to communicate with us BEFORE everyone had a clear picture and consensus of WTF is going on!! Bad business process! Not bad medicine. Just poorly managed communication. People need to understand the value of the phrase “We don’t know yet” or in the case of the MRI.. don’t call us until the specialist have looked at it. Talk to us in the meeting. OMG someone actually wrote 10mm on an evaluation of the MRI.. Thank god they didn’t tell us that. That’s T1..peice of cake!! We are a T3 strong medicince coming!! …it changed in less than a day and even less than an hour.
Because I do manage projects and I know that you need to run things in parallel we already have an appointment made last Monday to meet with Seattle Cancer Care Alliance for a few days from now. This is a move from what is clearly one of the best programs in the area, to one of the best programs in the nation, so probably the world. I already see they are running the process better. Its a longer appointment, and it starts with “The Resident” talking to us, a skilled doctor who will gather the info our lead oncologist took while also kicking off the process. But it is less likely to include assumptions and setting expectations. THEN the doctors meet and THEN we spend 3 hours with them. Already I see better communication process.
Given the size of the external presentation of the lump, given the nature of this kind of cancer ….there was no need to have called us with the preliminary read of the MRI.. I am sorry we have a “worrisome” node. It may not be clearly bad.. but its not “worry free” yet. And please don’t send in an oncologist who is talking breast preservation and T1-T2 size numbers when we are 3cm into T3. The Husband is pissed.
Frankly since we have two breasts on the same person to compare in the MRI and Mamograhm when I saw them, there were clear differences and in a sizeable way. I have no clue how the mamograhm got read as “Clear”… There was a big freeking shadow in ONE breast. It wasn’t small calcium spots… But it was not clear. Maybe the chart notes are bad, because they did send us for a biopsy off that mamograhm. And I have no clue how the MRI was noted as being under 2cm. It’s not round and unified.. but there is a large network of much denser tissue in one side.
It’s cancer and it’s breast cancer.. don’t let the generalist or one person reading the the image first call the patient when they already have a team appointment the next day. And the DRs should meet BEFORE any talk of “where we appear to be going happens”.. Broken process creates pain.. and sadly I think our Oncologist who we met with first is wonderful person and doctor to work with. But we don’t trust her communication anymore and that’s sad because a better process probably would have let her shine more.
My view is any good marketing person or sales person from a reputable company that wants to keep that reputation always knows you under-promise and over deliver. We got just the opposit in the last two days. What are they selling? trust and as much peace of mind as one can have.
WTF Just happened?
We have to deal with a mastectomy. And that will be hard for Tina. But I have already let her know that doesn’t change how I feel about her. Not only do I love her for more reasons than the boobs I am physically attracted to her and turned on by her for many other reasons and I have told her what those things are.. [ just not telling you ]
So, we move on… Where will we end up with the treatment? I honesty don’t know… Tina likes and trusts the radiation oncologist and the surgeon we met with. So this screw-up in communication isn’t a deal breaker and fences can be mended. We are just disapointed. So, as of yet are not changing our plans.. The second opinion was always scheduled and we will set a date for surgery with the surgeon we met today, Tina likes her. But, we are still gathering info for choices and choice is power.
Yikes, there is that word again – cancer. I’m waiting for my first appointment at the VM Cancer Center, and I’m nervous as hell. We check in, check out the “Café” (it’s just a coffee area), there is Wi-Fi everywhere, and it’s surprisingly bright and friendly. More friendly than my regular doctor’s office. Don’t get me wrong, I have an idea what goes down here. But it’s not as hospital-y as I thought. Not quite the spa, but it feels kind of okay here. I’ll keep you posted on how it goes after my first appointment.