Tina and I have been doing ALL the doctors appointments together. In many cases this means sitting with waiting women and walking past others. I swear there are times I feel like an alien in a strange land. “Who let the MAN, into the ‘Breast Center’”
I have noted that sometimes the man comes to the appointment, then there is a hug and heee’s outta there!!…. off to get a coffee and copy of Sports Illustrated to clear any of the trace estrogen.
But me.. I stay. I need data.. I do not do well in an information vacuum.
They are polite, but its like on Sesame Street “Which one of these does not belong” … you know the tune. I see it in their eyes…
For one biopsy the nurse “snuck” me in the back way so I would not run into women changing etc. (Good idea)
At the Virgina Mason Breast Center I hope most of these women are just there to get normal diagnostics that will lead to a call saying “Your tests came back negative, see you next year.” Me, I am with my wife because we are defining the future after a diagnosis of cancer There is soo much to learn and as we found between Virgina Mason and Seattle Cancer Care Alliance, different ideas of what makes a good outcome. And now at SCCA.. I am pretty sure most of us men and women waiting are sharing some part of a common journey.
I take in data and I process it, this is how I maintain sanity when life tries to take my choices.. I want… no need to know everything about Tina’s diagnosis and the plans. Not to counter the doctors but to understand and sometimes ask questions for me, for her and a couple of times to double-check the thinking. Medicine is a lot about stats being applied to individuals the more data points you have the better you can fit that stats. We are all different.. but there is collected data that tells us what treatments work best and offer the best risk to reward ratio.
- What kind of tissue has cancer?
- How big?
- How aggressive?
- Are there nodes that are now involved?
This guides the milestones in the treatment, which surgery, what can be saved, what has to go. How much chemo.. radiation etc.
So to understand and remain sane… I walk the halls of SCCA Women’s Center with Tina.. And I stay in the room, often to the surprise of the nurses and doctors and always at Tina’s choice. I feel no need to dash off for a coffee and a quick scan of Popular Mechanics. It’s clear that from the repeated reminders that “It’s Ok to go. most men don’t want to be here” that.. I don’t fit that mold.. good.. I like not fitting that mold.
For me to be a partner and a lover to my woman I need to be curious about what makes her tick and comfortable with her processes. I guess all those years buying pads and tampons was training me for this. I never understood why some men won’t do this, unless they want to make a pass at the check-out girl. Its part of her life, you should help. Be a man and do it right.. Don’t just grab a box and hope.. stand there and make sure you get the ones she asked for just like you were picking out a new piece of golf gear or a tool… That is not always easy.. I have gotten that look in the super market too.. “Why is he staring at the tampons?” Because I am a real man
This week again, I knew I made the right choice. I don’t think either of us was ready for the amount of pain a cramp triggered from a biopsy of the uterus could create.. so I was glad I was there to rub her stomach and hold her hand.
Frankly, this is a big giant, often scary journey and Frodo needs her Samwise… or is it the other way around.
I haven’t written for a while. Been busy doing life.. working, dealing with family stuff.. watching important TV shows.
There is a point now where this is all just so integrated into life, its is part of normal. We joke, we laugh.. we get bored we get cranky.
This is probably a three act play.. with bad pacing…
Act I – Diagnosis and discovery – Frodo takes the Ring on the Road…
Act II – Really isn’t watching a castle full of secondary characters getting stormed a bit boring? Ok we pretty much know what is going on and waiting for surgery and beyond.
Act III – Kicking its butt.. change and change and fatigue and more… with a final dip in the surgery pool for reconstruction… The Ring goes in the Volcano and all is good.
We did the ultrasound of the girl parts today.. still looks like a fibroid, just a bit larger.. Tina asks.. “do they grow”.. I said “of course it started from zero. ” But the person doing the scan who as very respectful and talked about what he as doing just enough.. kept calling it a fibroid,, not “the mass” etc. So I hope that means it is what we all think.. an annoyance…
But today my emotion going to the test was annoyance.. Not doing my job, gotta drive into the city (gee I am channeling my dad) .. not planning on learning anything new.. but it has to be done.
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”
Not sure if it came up yet. We have been busy.. often actually living life vs cramming cancer knowledge.
I noted Tina said it had always been the plan to move to Seattle Cancer Care Alliance. I think we knew that it was likely. But I will say after that first day when reality caught with some overly optimistic written notes on the MRI at Virgina Mason we liked the people working with us. When it comes to the people and the diagnostics, they were top-notch. And Tina grew attached to the VM team and it felt like a break-up when we did decide to move.. I am sure she will tell you more about that.
Lets close out some Nit Picks with VM (small rant alert):
Yes.. I ran into some odd issues with parking… (It’s nice to make the small important when sooo much that is giant is happening to you daily) The last time we were there I lost my ticket. So I walked over to the booth and asked what we could do. “Lost Ticket.. $20″ was the answer. Clearly no options were being offered.. [This is a theme at VM.. MORE ON THAT LATER] I was so ready to be out of there, partly because I had a small cold and voluntarily was wearing a paper mask , though I saw no one else doing it. And because all the tests and lack of sleep…. I was just plain PO’d at life for that afternoon. So I go to the car and resolve that $20 for 3.5 hours of parking is a small ransom to get me home fast with my wife who had spent two and a half hours alone, in prep for the PET scan.
(BTW.. for those hanging on every word The PET scan was as normal as one could hope for someone with a breast full of cancer. No indications of any spread outside the breast at all. YEAH!!!! That means everything to us. They want us to check out something lower down.. but pretty sure it was there last summer and already diagnosed benign.. and we have been told.. that is not where it would go next SO WOW! JACKPOT Cancer is still local to one Boob!!! )
Back to the parking RANT….So I want out.. and $20 is fine. Except now I am in the car at the gate.and I hand him a $20. Out comes a clip board “Can you fill out this form” WTF!! Why not ask that when we walked up.. not when we want OUT NOW.. and people are behind us. OMG bad business process…It may seem small but parking payments and rules at VM annoy me.. who is pocketing all this skim? I am not filling out the BLANKING Form.. I am taking my wife home! I am out of here.
Back to Medicine
VM Rocks in getting you into tests, getting the results fast (sometimes too fast) and they nailed the diagnosis. In a little over 2 weeks.. We had a pile of images, biopsy data etc. that frankly.. is the opposite of some parts of the industrialized and socialized world. Even Seattle Cancer Care Alliance was impressed with the speed and the amount of data we brought them for first day. So kudos to VM. Outside of those in charge or protecting the parking profits.. Every single other person was fantastic. I am sure to this very day.. VM was completely capable of saving Tina’s life from this pending threat of stage 3A breast cancer.
The VM team had pretty clearly steered us to a classic mastectomy, that with the one node became a modified radical mastectomy.They literally were making the preservation of any part of the breast sound like an annoying thing no one would want. We were told it would get in the way of using the prosthetics to leave any of the breast skin etc. Much better to remove it all and leave a classic several inch scar where her breast had been. Then after a year you can start the several month process of reconstruction. Tina says.. they were making decisions FOR her.. and options she should have had were not being offered on equal footing.
Why do I love SCCA so much:
- $4 Maximum Parking with in-out privileges for patients!! (and the you self stamp your ticket in the lobby.. No taking of a medical history)
- Screening of people for colds etc. I was asked about my recently ended cold and asked to put on the mask.. They are protecting those who come there to be helped and may have compromised immune systems ACTIVELY DOING IT. So “the husband” walked around the place all day with a PINK face mask.. and glad to do it.
The exam room was very nice, but a bit small. The cafeteria in the main building was TINY.. not the massive pseudo Denny’s at VM. But I didn’t care.
Why do I love SCCA.. after they all examined Tina and worked through 2 weeks of diagnostic tests, our surgeon walked in and began to outline something called a “Skin Saving Mastectomy“ She said because Tina is still young that doing [what VM planned] a full mastectomy and later implants would mean she had at least one replacement coming. They are planning for Tina to be with me for 20+ more years… So there will be a UW plastic surgeon in there for the first surgery.. helping set up the process that will allow him to rebuild her breast.. from her own breast skin and fatty tissue from her body in the end after the cancer is gone. It will be just a few months more to a reconstructed natural tissue breast vs an implant. It that will be alive and natural and not need replacement in 10 years..
OMG!! they not only are out to kill the cancer, with the stats to prove then can…. they are planing to make my wife as whole as possible for her next 20-30 years!! I could cry..
VM was clearly looking at treating the cancer and the 5 years survival target .. Good diagnostics, skilled doctors.. just a different view of medicine and what makes a good outcome.. IMHO.. But I really thank them and am pretty sure for an earlier stage cancer.. they have some great things to offer women. Some that only they offer. But for Tina.. SCCA is treating her, not just the cancer.
It as a good week on our cancer journey.. $4 parking , clear body scans and a plan to put back most of what the cancer will take. Yes, it was a good week at our house.
Our first day with the cancer team at Virginia Mason, I could have sworn they said something about “free parking” while we were in this process. Of course this means nothing on the large scale of things but still like on a Monopoly board, who doesn’t like free parking? So today nuclear medicine validates with the “Patient Discount” when I ask about it, she says that’s the only stamp then have. But Cancer Center downstairs probably has the free parking stamp.
Ok, maybe that’s what I forgot. We have to stop there for free parking. Down we go and over to the front desk, near the peaceful water wall….and tell them we are in for a bone scan and were looking for a free parking stamp.
“Whose Your Doctor?” the sddenly officious woman asks while the others behind the desk watch in silence.
My wife names her Oncologist and Surgeon. I am never playing poker with this woman! No change in expression.. either she doesn’t know the doctors names or she has been well trained to avoid all tells in any situation.
“Who did your biopsy?”
What? I think… how many more and more personal questions do we need to answer for free parking. Doesn’t HIPAA prevent pulling a full medical history for a parking stamp? I was about ready to tell Tina to whip out the boob and show Mrs. Officious the cancer lump. “Hey lady we didn’t walk up from the flower show to scam you for free parking” would have been my next retort.. except…
Tina names another doctor and the woman grudginly stamps the card. Letting us know this is not how it is suppose to be. God forbid someone who is channeling thousands of dollars in business your way, get free parking.
ok.. its just parking.. it doesn’t matter that much.. but… I guess it is worth quizzing your cancer patients to prevent too many freebies.
Sigh.. that is a small rant.
How Are You Today?
It’s a toss-away phrase. Friends and co-workers say it. Grocery clerks say it. Your favorite barista says it while taking your order for the brown gold that wakes you up each morning.
I actually never had a good answer….
“Fine”… Am I fine? Is that a sincere answer? Was it a sincere question? Often I come up with little quips that have real info in it. “Glad it’s Friday” “Keeping busy!” “I’ll know after the coffee” Sooo true.
Of course these days we are getting the other “How are you doing?” from people who we have shared the news with. It comes with the touch of empathy that is sincere, but makes me want to answer “We’re doing OK.”
What if I answered all of them with THE TRUTH?
“My wife has cancer, I am trying to keep up with my promises to people in my life and work enough hours to get my projects done before the FINAL deadline and earn money And there are three white rabbits living in my backyard.”
The grocery clerk stands frozen…now they don’t know how to respond.
Better to say “ Glad I am heading home” and that also is the truth.
How are we today? For now better than expected. Virginia Mason is like a part-time job we work together. I am learning I would be very happy working with my wife all day. I like being with her, even when she was in “The Loud Donut” She gives me peace… Odd she is preparing to battle cancer and she gives me peace, but she does… We feed off each other in a good way.
How are we today? There has been laughing and crying and anger and busy and life and preparing to demand that life continue.
How are we today? We are focusing on “The Now” Today and Monday are more tests. One cancerous node, opens the gateway to a full body bone scan and a PET scan. First reaction was scary. That is looking for cancer that has moved to someplace where it can do real harm! Then we come to the realization. That ”the cancer is where the cancer is” we can’t change that today. And many times it can move without using the lymph nodes. So we are learning more and lucky to have this new data source. The cancer is what the cancer is, and more data gives us power to change what will be, it lets us choose the level of medicine needed to kick this thing’s butt.
How are we today? Saturday is date night at the school auction and then a room at the Marriot with a whirlpool tub! Ooo La La!
How are we today? We are in love and fighting this war together. We are good.
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.
So, Tina had an unexpected reaction to the first MRI attempt. A panic attack. Well if you have never been in one of these things. Imagine a nightmare where a large donut is eating you. Then your alarm clock goes off for 20 minutes and you can’t move to turn it off. Oh and its louder than a live Led Zepplin concert. First time I was out in the lobby.
Second time, after a Zanix pill (usually reserved for flying etc.) and with me now in the room. She got through it. Trust me if they tried to put an MRI in Gitmo, the President would assure us it was never used on prisoners. 20 minutes of the loudest noises every half second or so and I might tell them where I buried Jimmy Hoffa…..
At first it sounds like the world’s best alarm clock, screeching screeching screeching every second or less. I am sitting there at the end holding and stroking her ankle.. the part that is sticking out of the donut. Then I realize.. my head is bobbing back and forth. OMG!! its just like Steve Martin in “The Jerk”, I have found the a rhythm that moves my white fat man soul!!. Pathetic…
Then I look down.. at the side of the big white donut… Some perverse marketing team named it “Symphony” ya right. They should copyright the first three minutes of this thing’s noise corner the world wide alarm clock business… Yet… every pass it makes the harmonic of the noise shifts. Ironically around 12 minutes there is a pass, that I swear could be the base harmony for a Phillip Glass symphony… I can see it now. Benoroya Hall, the Seattle Symphony and the big white donut on stage.. doing “Ode to Loud Tech” by Phillip Glass.
The other thing. The dark mood lighting like on TV in”House” is not there. Its not dark with dim blue floor lights. It’s lit like an ER exam room.. Whats up with that?
This is where my brain goes for 2o minutes, while I hold Tina’s leg to let her know I am with her, as the machine searches inside her breast for info we really need to move forward. That and I was also watching her breathing to make sure she wasn’t stressing out..
Ladies.. that is what a man thinks while sitting next to the MRI.. much more fun to write about .. after being told “The Donut” saw no problems in the adjacent lymph nodes..
Tomorrow its several hours with “the team”.. starting with The Surgeon… more reality…
This is my first post.
Its the day after the MRI. This is real. [insert profanity here]
I love Tina so much. I can’t imagine a better mate, friend, mother, lover. I understand the motivation for people to shout “This is not Fair!” Problem is waiting for fair, trying to manufacture fair destroys lives. I am not waiting. We are working the process. We are working with the team a Virgina Mason in Seattle. And when they have an opening we will consult with Seattle Cancer Care Alliance just to make sure we have the best in the area from both places offering input.. VM has great ratings and I thank the Lord we still have the options for care where Friday your wife is diagnosed with cancer, Monday she has an MRI and blood drawn and Wednesday we have back to back meetings with the team.
See.. I am doing it. I manage Marketing projects for Microsoft as a contingent staffer. I have for several years. I like the work and I like my current team and I can’t imagine a more understanding team. This is my second year long contract them. And I started the first year where they had just met me and I had to take most of my first week off after we learned of Tina’s dad’s murder. How did I manage to find such human managers? As a said, I can calm myself by retreating into the project manager. We do this, than this, we make the milestones and it will complete successfully. I get my projects done. This is a project where I can only do everything right, than we assess fate and Gods’ contribution.
Yup. I beleive in God. I am not mad at “him”… Yet. It may come.. I am very much into science and astronomy and string theory etc. I see art and eligance and I see chaos in the universe and it is beautiful. God is not some old bearded guy or even a goddess in green. It is the life force that brought everything into place, I do think God interacts… but I also thing like a good parent we are allowed to choose to be our best in good and bad. We are to help others, something between killing them with kindness and ignoring that we are different and all have needs. Religion is our attempt to humanize someone too different to understand.
So I am a project manager and I believe in the “Big Picture” [Reference the movie "Creator"]
Back to Tina.. In her first post. She wrote “I am not strong.” Don’t believe that for a minute. She feels deeply. She broke into tears during the Budweiser Super Bowl ad where the Bud clydesdale rediscovers the owner who rescued it as a pony. And she had a panic attack half way through her MRI, so a sat holding her leg for the second attempt and she flew through. She feels, she feels for people and she feels what affects her. But then she goes on, she is a mom and a wife and someone at work people know they can trust. She is strong and she does it while feeling deeply.
I too have been sucking down info. Info informs choice, choice is power. So much info… Where is my choices?.. where is the power? I don’t know. I hate not knowing…
What do I know.. I want my wife with my for the next 30-40 years. I love her oh so much because of who she is.. Wife, Lover, Mother.. Friend.
Today is my day to really start feeling. There is nothing to manage.. Nothing to plan for.. we wait.