Working the Process
Just a note:
I saw my new doctor. Don’t like him as well as my old.. but his does offer options and I am sure is a good doctor.. just very terse and business like.
Got an EKG.. need to get blood work-up to watch for other problems.. BUT everything looks fine.
I was having palpitations.. something I have had off and on over the last 8 years.. but pretty frequent over the previous few days.
We talked about options… ended up with a basic prescription for Valium for 30 pills. So far I have taken two, once each of the first evenings. That seems to have done the job.. got me down to a better baseline and everything seems better.
At some point the day of the radiation planning.. Something in my brain shifted.
I have in general been really good a dealing with crisis and stress. I have even had praise from managers of my ability to think on my feet and stay calm. Well last Monday after we got back from the planning session, I had a crash. I have had these before.. typically a few hours when a section of the process has ended and things feel more normal. Then I would blow out the pressure and just sit.. feeling like my skin was tight and general unease.. Then I would get better and move on.
Last Monday it lasted all day. I could not bring myself to return the computer for work.. I just sat and stared at the TV.. not multi-tasking etc.. Just trying to get lost for a bit.
Tuesday was better but I could still feel the edge..
Sunday… at the end of the Seahawks game there was some good ol’ game tension as they tried to come back from being 21 points down and win in overtime. Which they did. Problem was, I was still wired for about 2-3 hours after that..
Now Monday.. going back to work which seems to be pretty well in hand.. I am really wired.. my skin crawls and I am having a hard time staying focused..
It is my assessment… that I have developed some kind of PTSD reaction to normal stress and it just puts me in overdrive, like a dimmer switch has become an on/off switch with no in between.
I maybe FAT, and need to lose weight.. but have been pretty lucky health wise.. with low cholesterol and blood pressure that stays at the high end of normal. This week the BP is also up.
I am looking at things I know that help me.. keeping my hydration up and getting back on the treadmill for half-hour or longer walks will help some. But this time I know I am out of my norm and can feel it chewing on me… So I am getting help..
It will be fine.. but knowing one’s limits is key to surviving a year + of intense care for someone you love… I am hitting some kind of limit. So off to the Doctor I go…
Notes about me: I have been able to go back to work and sit in my little cluttered office and interact with my team. My one frustration is that in a week we move to a new building and “the powers that be” who plan space and decide the value of staff are dead set on breaking up teams. My office will be in a room of small cubicles and in a different building from my manager and team. I suspect the one benefit is I will be working from home more and can be near Tina, because the cube rooms are terrible for productivity and there really is no value to me driving to Redmond to be in a different building vs just working over the net.
Yesterday was Tina’s first Chemo day. Lots of stuff going on.
First of all we have asked SCCA for a new medical oncologist. Over the last few days we had a severe personality conflict. Tina and I are intelligent people who get value and avoid stress by understanding what’s going on. I also manage processes and often do projects where I broker communication. Our oncologist seems TO US annoyed, if not a bit threatened, when we ask questions, or wanted to understand the value in repeating a very painful biopsy that was done just four weeks prior. In the end we were right, there was no need for the test, but to the very end the oncologist was dedicated to justifying the original request, even though the gyno oncologist when asked, quickly confirmed our suspicions that the painful test was not needed twice.
At one point when the Oncologist could not answer what the value of doing the same painful biopsy was, the oncologist pulled the “And where did you get your advanced medical degree” card. Really.. that is the best you have after 10 years in Med school etc? I pulled the “I am a professional project manager and work at creating clear communication between project stake holders all the time” card. Education doesn’t intimidate me…
I may not be a trained car mechanic, but when my mechanic wants to flush my transmission twice in a month, I am smart enough to question this call. SCCA’s patient relations rep Connie was a star in helping us get the right answer to our question, keeping Tina from being bullied into a painful unneeded procedure and now helping us find an oncologist that is a better match for us.
Getting Lucky in Chemo
In case you don’t know Chemo drugs are designed to target cells that are actively reproducing at a faster rates. Given Tina’s tumor grew to a freeking 12 cm in less than year, I am sure our cancer fits that profile. [assuming there are any cancer cells left, remember we are lucky in that this is a proactive after a very successful tumor removal] Unfortunately for the patient, hair follicles, finger nails, blood cells and the entire lining of your GI tract from mouth to “exit port” also fit the bill. This is why you lose your hair, need immune treatements and tend to have digestive issues. Chemo is cumulative so this week’s relatively easy reactions may get worse.. and we are pretty sure her hair head’s hair has few days before it goes. Though for some reason armpit hair isn’t affected.. sigh… Also digestion and waste clearing goes down hill.. it will recover… but still who wants to have flu-like symptoms for several weeks.
For all the anticipatory stress and Hollywood images of cancer patients getting chemo, it was a much more pleasant process then talking with our Medical Oncologist. The port Tina had installed made the infusion of a half-dozen different drugs so much easier than an IV. SCCA clearly has this down to an art and our nurse for the 3 hour process was both professional and pleasant.
There was about an hour of just infusing anti-nausea meds before we got to the main feature. Then the first drug Doxorubicon comes in three large RED ominous syringes that need to be infused over 5 minutes each.
“Mr Bond.. when the third plunger has fallen, your days will end..”
It reminded me of an episode of Alias or James Bond. “Mr Bond.. when the third plunger has fallen, your days will end..” [insert deep maniacal laughter here-- BTW my 9 year daughter does a very disconcerting villain laugh.. I hope this does not foreshadow a future career in tax collections or something]. The infusion machine does both syringes and IV bags automatically so the nurse can manager many infusion bays at the same time. To make the RED syringes more ominous.. every time the nurse comes in to change out the syringe .. she puts on a disposable safety gown.. to protect her from exposure.. Ok I feel lots better now… maybe not
Tina took a full anxiety pill near the start of this.. Better than a Tequila Sunrise for loosening her up. She is in the bed, I am in the recliner next to her… Lots of time to talk and hold hands.. and she did get very flirty and cute.. In general it was a pretty good date for two parents of a 9-year-old doing cancer treatments. We even got a little titillating in the talk and also worked out the expectations for physical affection during our tour of cancer treatments and boob reconstruction. I can safely say that under less medically intense times.. this date was going to end up with us having all sorts of fun.. We settled for and enjoyed a burger at a local bar with some beer /cider and some pleasant affection at home that culminated with our 9-year-old shouting from her room “I can hear you smooching!” mood over… ok not really.. we moved it to the next room SMOOCH!
In reality we had been doing some re-courting and re-bonding in the months before the cancer was found.. and this process has only increased that.. but with less sex..
And a good Puck
Ok it was a fun title.. but it refers to the fact that I trained Tina on the new grinder and espresso machine and one of the signs of a good espresso batch is the grounds in the porta-filter fall out as a single solid puck. I got one last night.. the filter looked like it has been washed.. so I had a good date.. some smooching and a good puck.. what more could you ask for?
Not so fast!! This is Chemo…
Tina after over doing her first post chemo dinner and coffee party.. did have about an hour of nausea and tears.. partly because she was so giddy after an easy session and some beer it was just a big ol’ slap in the face to remind her.. this is chemo.. [but honestly onion rings, a cheeseburger, beer, bread pudding and two coffees would have made her ill without chemo].. so its humus, crackers and cucumbers today..
But she has one drug that is a mood relaxer and nausea preventer so she was only sad and sick for about an hour.. and pretty cute and chatty afterwards until bed time.
Monday and Tuesday AM it looked like we were going to glide into an easy recovery….
That may be why Tuesday was crash day for me. Late Monday night I hit a wall of stress after we did her first shower. Surgery drains, newly uncovered stiches, plastic to keep things dry etc. Once we finished the stress of not “breaking” Tina hit me and then some. Pretty sure I am releasing stress I felt very little as I managed the last few days.
I slept hard.. and then Tuesday morning was mentally exhausted.
Tuesday AM Tina was up and doing chores.. I told her not to….
Then something got pulled there was sudden pain and the last two days have been tougher.. Periodic pain spasms etc. I seem to remember my triple wisdom teeth extraction was like this… it got better for 4 days then I had 1-2 days where it was really bad.
She is healing and we are in communication with the DRs… but right now pain management seems to be #1. Her surgeon thinks it may be that she didn’t keep ahead of the pain.. from what I see.. pain hits. creates stress .. creates more pain… Lesson of the day.. when you get a body part cut off.. its ok to take pain meds for a few days and not worry that you don’t really need them..
Thursday AM.. I am getting a bit better sleep but needing to use ZZZZQuil tabs to get down the last three nights..
I totally checked out from work…the last two days (which I hate… but I was mentally useless for intelligent work) watching email for emergencies etc. but I thought we were on track for an easy recovery week one…. not so much..
Michaela is sleeping on the couch to be close to mom.. and has been doing a good job letting me know if Tina needs something.. What good kid.. but I worry she is stressed and not willing to talk about it.
At some point we might get her some time with a consoler ….just to make sure.
Tomorrow we see Dr Javid who has been great this week.. even dealing with a problem where her resident didn’t return 3 calls in a row.. (she dealt with that pretty fast and it never happened again…)
And for those keeping score at home and who have bets pending with Vegas bookies… pathology game back…
- Tumor… 12 Centimeters (5 inches!) Sorry for those who bet on a more normal size…
- Single Mass… Good…
- Clean Edges Good…
- No skin or chest wall involvement.. good..
- 2 lymph nodes of the 24 removed affected good given the size…
That makes the final stage 3A which is where we were last week…. Sorry I have checked with Vegas and no one had all it all right.. so no jackpot winners this week..
Joking aside it was big hummer..that came from no where and was undetectable 10 months earlier by a DR doing a breast exam, and was even hard for them to spot on imaging when they were looking for it… Get your tests.. do your monthly exams etc.and get weird stuff looked at right away people!!!
That said it appears to be a lazy SOB of a cancer which is good..content to sit in one boob and get fat vs going out to explore.. so in general pretty good news.. Given SCCA’s stats on all stage 3 cancers.. I think we still have a very positive prognosis…
There were quick flashes of stress or sadness this week.. but I pushed pass them. I know we are going to be fine. But change is coming
Day before surgery and I woke stress level is through the roof. Wish I didn’t have so much important stuff to do at work, I would take the day off.
No clever quips today. No flashes of humor.
Tina’s sister is up for a few days. Love her and her family … really nice people that have had bad stuff happen to them over the last couple of years but they too just keep going.
Family that you can count on is gold.
Our daughter has been sick this week.. Cold and upset stomach. So I took over doing stuff, when the “Mama!” call came. Switched to paper towels in the bathroom. Trying to be careful to make sure Tina doesn’t get sick. Being sick would delay her surgery and we are so ready to move on and get that thing out of her.
We had our first visit to UW Surgical Center. What a nice building. Parking costs and system not as good as the SCCA, but better than Virgina Mason. (You knew a parking update was coming…)
We met with the reconstruction surgeon. Interesting twist… Tina is back to the type of mastectomy that Virgina Mason recommended.
After seeing Tina and her assessing her size and taking into consideration that she is scheduled for radiation, he has recommended not doing the skin sparing mastectomy.
- Less pain ongoing from the expander and fewer Dr visits to get the expander cared for
- Fewer complications
- easier surgery and faster recovery this week
- And will use skin from her “tummy tuck” that has not been compromised by radiation
- Easier to model and match with the other side for her
- He was specific that the “hang” of the breast that is seen standard necklines will be more natural
- Larger scars where the skin sparing would take everything though the removed nipple, this one will have long scars.. but they fade and will not be were most clothing (especially Tina’s style will how it. Out side of DRs there are only two of us that will ever see them.. I am fine and I like that her initial surgery will be easier to recover from.
We learned two new things.
- After all this is over.. some times the feeling in the rebuilt breast can return. This is different for everyone.. but interesting to note.
- Also if after her mastectomy if signs of arm swelling (Lymphedema) are detected, as part of the belly flesh transplant they can take a few lymphnodes too and improve the proper lymph draining from the arm. Cool
This may have been in Virgina Mason team’s initial thinking.. but it was not communicated as a recommendation / choice. we felt very much steared and not really hearing about options.. AND since we had read about them.. I think this added to some uncertanty that we were getting all our options. It might be that we know more now it or that there was just not as good of communication. In general communication and a feeling of involvement is where I think the SCCA team and affiliates seem to excel. Nipple sparing has never been an option for Tina… but we did touch on it this week in the discussion. Skin sparing and nipple sparing was never mentioned at VM so we could never really understand why it wasn’t being considered.
On the lighter side
Tina got an unexpect bonus at work.. So we we replaced the long dead and ratty family room sofa and rock hard futon with the first furniture we ever bought together outside of a new bed. Leather Sofa and Recliner all with power reclining.. mmmmmmm
This will be good for Tina as sleeping partly elevated is where she will want to be for the first few days.. so consider it a medical expense..
Also visiting family will find a night in the reclined ends of the sofa or the chair much nicer then what we had before.
Life keeps moving forward.. though one night as I went to sleep.. I did realize this is one of the most permanent things ever in our life, expecially in hers.
Marriage, kids, jobs, mortgages are commitments and it is possible to walk away from them.. and too often we see that… even when kids are involved. But this is not commitment.. it is enforced change.. We have had discussions about it and dealt straight on with the fears. I am not going anywhere.. but I also know that the coming year is going to be tough and build or test some character. Tina needs to be ok with what she is feeling as this happens and I need to make space for her to do that. Love.. it’s about times like this.. not just the lovely hormone frenzy that cements it all at the start and makes it fun along the way.
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.”
We were dropping off Girl Scout Cookies for The Husband’s favorite Aunt. She said something that I think I unconciously knew, but hadn’t completely considered. As hard as it is for me to go through the doctor’s appointments, the surgery, the chemotherapy, the radiation (all yet to come) and the physical manifestations of my cancer and it’s treatment – it is probably much, much harder on the people who must watch me go through it all, and knowing there is really nothing they can do.
Our daughter has been pretty quiet with us about the cancer, but I can see she’s worried. She had her first sleep-over on Saturday, and had really been looking forward to it. But about midnight, we got a call saying she wanted to come home. When my baby is crying and saying she wants to come home, I don’t ask questions, I get her home. However, I suspected it was more than just homesickness. Last night she confessed, she “wanted to see me one more time, just in case I ‘went’.” I asked her where I was going – Mexico, Paris, London? She says “You know?” then looks towards heaven before she makes a face like “dead”. I told her “I’m not going to die.” She says “Don’t say that word!” So clearly, she’s majorly worried about this, about the possiblity that I might die. No matter how much I try to reassure her, she worries about this, and mostly she worries alone. I hate this, seeing this fear steal her peace of mind, and there are just no words I can say to make the scared go away.
I’ve seen this show up elsewhere, in people’s discomfort in being around me. Much of the time, I just stop talking about myself and my cancer, or if I do, I feel a little guilty about dominating the conversation. I know other people are dealing with their own problems, which I’m sorry, they ARE just as important as I think mine are.
My boss is moving cross country, basically by herself. It’s the same job, and some of the same people, all of whom she likes – but her family is here. Who is an advocate for her there while I am out dealing with my shit? She is strong, she is capable, and she is a no-nonsense professional. She’s a big girl, and she can stick up for herself, and very often for me. She’s no weakling. But I still worry – who will be watching her back, who will be monitoring the little details, so she can go out an slay the dragons? All I’ve got is a little cancer in my breast, and I’ve got The Husband sharpening my swords and taking care of my amour so I can slay my beast. Who’s going to take care of my boss’s armour while I’m doing my own battle? She’d tell me not to worry about it, but I still do.
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.