Waiting for Information
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…
I just got a phone call from the medical oncologists nurse to talk about the next stage of my treatment, chemotherapy. The plan is adrimyacin (I’m sure I haven’t spelled that right) and cytotoxin every two weeks, starting after I’ve recovered from the port placement. Oh, and there will be more imagining before that all happens, a CT scan and something called a mugga, which evaluates your heart and gives the doctor a baseline from which she may monitor any ill effects to your heart from the chemo. Oh, goody.
Now we wait for a call from the imaging scheduler.
So the bone scan injection was pretty non-traumatic. I had a student and her supervisor who each had a shot at inserting my IV so they could give me the sodium phosphate (or whatever it was). Natalia was the student, her supervising tech was Yuri, and they were both wonderful. Once the needle was inserted in my vein, Yuri gave me the injection before I even knew it. I was expecting the injection to be cold and said as much. Yuri said he’d warmed it with my blood, and my first thought was he was joking, but I knew he was serious. There is a little tube attached to the IV needle, and that collects a little of your blood, and I guess that’s what he used to warm the injection, then pushed it into my vein. Cool, huh?
Then The Husband and I had a couple of hours of sitting in the hospital cafeteria, me sucking down LOTS of water.
Back to Nuclear Medicine, time for the bone scan. After visiting the restroom yet one more time, the technician told me how the scan worked. I take off my jewelry and my glasses, lie down of the very narrow scan bed, have a wide padded strap around my arms, and a big rubber band around my feet. Then they slide you through a less oppressive looking white tube, less oppressive than the breast MRI anyway. They start with your head and move down. They also raise the tray up, so that it’s about an inch from your nose. I had my eyes closed, and wouldn’t have thought about it, but my tech happened to say “It will stop” which is when I opened my eyes and looked at how close the scanner was to my face. Yikes.
I had taken a half tablet of my anti-anxiety medication. About 5 minutes into the scan, I realized I should have taken a full tablet. My right shoulder, around my collar bone, started to sort of tingle. I am certain now that it was the beginning of an anxiety attack, but at the time I thought it must me the radioactive agent in my blood, and I was going to be enacting a scene from Alien, my radioactive blood and tissue leaping out towards the scanner.
After about 10 minutes the tech was able to unstrap my arms so that I could relax a little more. As the scanner continued, thank goodness it was mostly quiet, save for the scanning table tray sliding back under my arms. Every noise, every sensation, I was nervous, anxious.
Pretty soon, the technician said “10 seconds”. By the time he took the rubber band off my feet, I was rather nauseas. The technician helped me sit up, and after a moment I went to sit down while he consulted with the radiologist to learn whether or not our images were good, or if we needed to take more. I took the other half of my anti-anxiety medicine and sat down to wait. Praying to God that my bones were clear, and that the images we’d just taken would be enough. I felt rather sick to my stomach, and it felt like my bowels were about to let loose.
They didn’t thank goodness, but when the tech came back and told me we were done, I couldn’t get out of there fast enough. All my stiff-upper-lip cheerfulness was about spent, and I think the full effect of my anti-anxiety was starting to kick in. I almost walked out of nuclear medicine without The Husband. Not intentionally, but the Nuclear Medicine section of radiology is in rather a small space, and you’re past the waiting area and at the reception desk before you know it.
Managed to remember myself, and The Husband and I left the medical center. Back in the car, I burst into tears. I had been keeping hold of my fear and anxiety, and in the safety and relative privacy of our parked vehicle, with my husband, I could let it all out, let it go.
On the drive homeward, heading to a late lunch of fish and chips and beer for me (no carb diet starts Saturday!), the call comes from my current favorite person at Virginia Mason, Rita. My bone scan is clear! I’m so happy, I’m telling everyone at Red Lobster, emailing work, texting my sister, everyone.
It’s 11 hours later, and can you believe it, I’m still sucking down water. All of a sudden I can’t get enough.
Tomorrow is Saturday, and so begins my extreme Atkins diet. Then the PET scan on Monday, for which I will definitely need my anti-anxiety medication. I can’t look at IVs or needles, it’s true. But scans are apparently my true kryptonite.
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.
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…
Breast cancer doesn’t just happen to you. It happens to your whole family as soon as you tell them.
I found this out today, and I have been expecting it. My husband, who has been my rock and my calming voice, came to his break-down moment. It’s the waiting that is so hard right now. Waiting to hear what the doctors say about what they’ve found, what we do next. And the not knowing is getting to him, and to me. We can’t plan for what we don’t know, and when I don’t know, my first thought in my less positive moments is the worst-case-scenario. Every little ache and pain, every time I feel fall-down-tired, makes me wonder.
I started this post about 3 hours ago, and how much can change in such a short time.
I just got my results from the MRI. They confirmed the tumor we knew about, and they found another something they want to biopsy in the other breast. But the news I really latched onto was they found NO worrisome lymph nodes. I’m trying not to get too excited, but this makes me feel a whole lot more positive about my marathon appointment tomorrow.
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.
Today is the MRI, which I am very nervous about. Wednesday is the big day, the day I talk to my medical team. Two days ago I was terrified thinking about what they might say. Today, I’m excited to hear what they might say.
I have just as much chance of it being very good news, as very bad, right?
So yesterday afternoon thinking about my preliminary diagnosis, I was a bad-ass warrior. I was sassy, and I had a take no prisoners attitude.
Last night, not so much. Last night, I’m constantly on the verge of crying, if I’m not flat out doing so. It doesn’t help matters that there is a TON of information on the internet, and I am obsessively searching and reading about things that only serve to confuse me more. I can’t keep doing this. I have to be patient, wait for my MRI on Monday, then here what the team has to say on Wednesday. And what they could say terrifies me.
Again today, I am frequently on the verge of tears. However, occasionally, not as often as the emergent tears, there are pockets of calm. I exhale a sort of cleansing breath, and think “just wait and see what they say. Once we know exactly what we’re dealing with, we can attack it.” I go back and forth between completely freaking out – this tumor is huge! – and saying “It is going to be okay.” From what I can feel, this tumor is bigger than any stage III tumor description I have found on line. I kept thinking last night, it must of gone farther. But last night, talking to my husband in bed, it occurred to me, my tumor is also estrogen positive - it’s fed by estrogen. Maybe that’s why it grew to large, and so quickly. It’s possible. One of the things I noticed in all of my obsessing last night – every patient is different. You can’t go by what is a “textbook case” because human beings don’t come out of a textbook. There are endless variations, surprises, and just plain old funky genetics. Just now I’m remembering something a former co-worker used to say – don’t catastrophize. She meant don’t go worrying about things that haven’t happened, and may never happen. I have to keep that in my head. I don’t know yet what exactly I have. I shouldn’t create a story around it, especially when that story is not a happy one. I’m not cut out for long-term depression. I never have been. Even when things are darkest, something in my psyche won’t allow my spirits to stay down very long. I always pop back up. Granted, the last two years have been hard, and I am not the happy-go-lucky innocent I once was. Horror has come into my life, since my dad’s murder. The kind of horror you think only happens on crime TV. But you can’t just lay down in the road and quit living, can you? Not in the middle of Hell. Who wants to stop for lunch there?
As Churchill once said, If you’re in the middle of Hell, keep going.
That’s what I have to do. Keep going.