Tina as you know is a trooper. I have only been the support team.
In order to help us get all aspects of our married life back to normal over the coming months, next week this man goes and gets sniped.
Any kind of pill is candy for cancer and it turns out that her new therapy while blocking estrogen in the breast tissue can act as a fertility enhancer.
So.. after a bit of delay.. I found in Seattle one of the world leaders in pain reduced versions of the procedures like this for the chicken man!
Snip Snip.. Oh boy….
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…
Its been quite a while since I have written here. I think part of my coping system is to normalize as much as possible when there isn’t some kind of decision or change coming.
Once we hit chemo and Tina was doing well with it. I just integrated it into the schedule. Monday Work, Tuesday Work, Wednesday Work, Thursday Chemo and Italian Sub at SCCA cafeteria Yumm!, Friday work. Weekend.. be mostly unproductive [Repeat].
I am close to caught up with work and we have a bit of a break from routine with the two week chemo pause. I want to have the discussion of what is the benefit of the next 5 treatments vs the long-term risk. I had painful planters warts that I thought were calluses this last spring and for a few weeks walking more than a hundred yards would become very painful. Once I realized they were warts and used the Freeze stuff. They were easy to treat and go away. But now I worry about Tina’s hand and feet and the real live affect of pain and numbness.
Walks in Paris and London, Exploring Yellowstone and Manhattan all the things I would like to get back on to to-do list for the coming years. Then there are hands, for beading, writing and knitting. The things that bring joy and relaxing to Tina. I worry that in a rush to just get it done… Or throw the book at stray cancer cells that might not even exist.. will have costs that are pretty high.
So as this round has brought on increasing pain and affects I have been falling out of the routine more and back into worry and crisis. As Tina mentioned I have have more nights of poor sleep.
Understand we love our current oncologist. The moment she walked in I saw it, she was a Geek.. that is compliment… I read her bio before we chose her and meeting her I got that vibe of someone who is immersed in her field of expertise and cares about getting it right and learning more for the patient. Not just BEING RIGHT.. Geeks know their stuff BUT are constantly learning and adapting to new info. Geeks take knowledge and turn it into a living art no matter the subject.
So I want to have the conversation about value vs. risk this week when we go back in to start the last five infusions of TAXOL. but once I frame the conversation.. I totally trust the Geek magic and her passion for this medicine to make the final call.
This is one of those things that you really don’t notice much, until it’s part of your life. If you take even an hour to study what is going on around cancer and the medicine, the vast majority of people are kicking its butt and surviving. The average 5 year survival rate is over 60% across ALL CANCERS. Lung being one of the worst but, breast is 90%+ and prostate is at 100%. There are some really bad cancers and stage IV is always a fight.. but people are winning those fights too.
However, anytime a lazy TV writer even on shows we love that usually have great writing like “Suits” on USA. [This may be the best show on TV right now.*] The plot device for killing off-screen characters with pathos is to have them die with cancer. Really people?.. Those of us out here fighting the beast are winning. But you wouldn’t know it from the mass casualties of fictitious off-screen wives, brothers etc. who just die from cancer to create a moment of pain to show how the characters can feel.
I have to say when I hear “My BLANK is dying of cancer” then see a hug to create emotion between two characters, its starting to piss me off.
So you have a tough character with a hard emotional shell, like a Harvey Spector (Suits) you need to show some emotion, really is it cancer, death or nothing? Get creative people surprise us!!
Yes, I want to get through one season of one drama or even ”a very special” episode of a sit-com.. without the LAZY ASS writers killing someone with cancer.
*If you haven’t watched Suits (USA Network), get on-line, rent the DVDs, whatever and start with season one and watch. This show has the best cast chemistry and writing IMHO since West Wing but is a lot more fun with some real solid emotional moments.
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.
Tina has seen her surgeon and is healing well. We have one more surgical drain to get out today. Soon showers without plastic and tape will happen and Tina is looking forward to that.
It has been a harder recovery than expected… because Tina does not do well on pain meds and there has been some muscle spasms… So we have had pain, dizzyness.. nausea etc.
We have pills and a patch for all this.. but it is a balancing act… We are improving.. it feels like this could be the week thinks start to get more normal.
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…
7:55 am UW Surgery Reception
Tina, Terrie (sister) and I sitting talking about hair and being hungry. I will be live updating today on this post.
8:25 into surgery prep
Very “Grey’s Anantomy” back here.
9:00 am Surgery Prep
IV and agree to donate tissue for research. For half a zanex she’s pretty silly right now
9:25 Surgery Prep
Dr came in and marked the right boob which is the right boob to operate on. Tina dozing.
10:00am Surgery Waiting room
Tina got the first happy juice.. Now giggling…:) Terrie and I have moved to the waiting room Tina has been moved to surgery. They have promised periodic updates during the next 3-4 hours.
(I see people are reading today.. go ahead and submit comments if you want I will read them to her or she will read them when she gets out of surgery. You do that by clicking on the title for this blog entry and then on that page you can leave comments)
11:ooam Surgery Waiting Room
Got the first update call. Anesthesia and first incision went well. May be the only update from OR until she is out. Its a very straight forward procedure.
12:45pm Surgery Waiting Room
Got a new update call.. everything is going fine. Almost done DR will be down soon to give us the summary.
1:15 Surgery Waiting room
Just met with her lead surgeon. She is starting a 1-2 hour waking up process. But she is out, no indication of spread past the original diagnosis so in the new reality.. really good news.
6:00Pm From Home..
All is good I am home with our daughter.. Tina’s sister is with her and says she is getting better since I had to leave at 5pm. Even before I left while groggy and having nasia she was complaning about the loud chatter boxes in the next curtain.[which is a good sign :) ] they must have had 3-4 visitors behind the corner… Yammmer Yammmer Obama, Yammer Yammer multiple orgams, yammmer yammmer New tattoo on his head.. on and on it was like four 9 year old girls but it was adults. I nearly wanted to puke too…
We are tired.. and surley and happy to have completed this key milestone in kicking cancer’s butt.
Signing off have my daughter to entertain….
Ken – The HAPPY Husband..
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.