Monthly Archives: February 2013
I’m working on a longer post about Tuesday, but for those of you following my blog daily, I’ll just give you a quick update.
We met with the team at Seattle Cancer Care Alliance on Tuesday, and long story short, I’m moving my surgery and all of my care to them. That was always the plan, but it’s nice to have it be official, with a new surgery date scheduled, and a new treatment plan.
I have to say that SCCA was visibly impressed with how fast Virginia Mason moved to get my tests complete, and my results back. I couldn’t have gotten on the schedule so quickly at SCCA without the diligence and get-it-done work ethic of the team at Virginia Mason. They are champs in my book – I just like SCCA’s outcome, stats and approach a whole lot better. Plus SCCA met together to talk about my case BEFORE they came in to talk to ME. Way better method, in my opinion.
More later.
Love you guys!
I survived the 12+ hour fast and the PET scan.
The professionals who work in nuclear medicine at Viginia Mason are really wonderful, compassionate people. When my name was called, I was taken to a room with a large, comfortable (though still obviously medical) recliner. I was shown where the bathroom was (which was timely, as I’d been drinking water since midnight), then I was seated in the chair, and a warm blanket put over me. My technician asked me some preliminary questions to make sure he had the right patient, then quizzed me about how I did on the low-carb diet. Then he explained the procedure. First we tested my blood sugar. Then we put in my IV, which went pretty well, I think because I’d been drinking water all day, so I was definitely well hydrated. I don’t know how it is for you, but I know that my veins are more willing to come out for an IV or a blood draw if I’m not dehydrated, which makes it easier for both me and the person with the needle.
Once we had the IV in place, it was time to talk about the barium sulfate vanilla smoothie. I had to drink two. The first half of bottle one wasn’t so bad. But after the first half of the first bottle, you’re kind of over it. I had 10 minutes to get down one bottle and one half of the second one. I did it, with about 6 minutes to spare, but UGH. Then I felt kind of bloated, like I’d had a huge soda, but without enjoying it much on the way down. About 90 minutes later I would have to down the last half of the second bottle, and I was to learn that the flavor does not improve when it becomes less cold. But still, not as yucky as I expected.
Next was the radioactive injection. Again, not cold as I expected. My technician said I had to remain quietly where I was for the 90+ minutes I would have to wait for the barium and the injection to do their thing. He returned about an hour or so later so that I could take my anti-anxiety medication. He left again for 15 minutes and returned to tell me it was time for the barium smoothie. He told me that after I finished that I should use the bathroom once again, as they need to do the scan with an empty bladder. You don’t have to tell me twice to use the bathroom. I’d been waiting for 20 minutes to get out of that chair to do exactly that.
When he came back again in a few minutes, we went across the hall to the scanning room. He must have gotten a chuckle out of me, as I was worried about every little detail. He said I could put my things on the counter, I worried about making the counter unsanitary. I asked him about the rivits on my pull-on jeans. He said we’d deal with that. I asked about my ring, he said as long as my hands were outside of the scanner (my arms would be flung over my head during the scan) it should be fine. I took the ring off, beause as I say, I’m a worrier.
He had me lay down on the scanning table, and I said “Oooh, stars!” They have these teeny, tiny winking lights that seem to be part of the blue ceiling tiles.
Once I was positioned correctly on the table, he put a wedge under my knees, covered me with yet another warm blanket, and told me to push my pants down to my mid-thigh, which should make them clear of the scanner. As I’m a worrier, I moved them to my knees. I was covered with a blanket, so I didn’t feel weird about that. I got yet another warm blanket, and we started the scan. He lined up the scanner using some kind of a laser scope (he did tell me to keep my eyes closed), then he scanned my head for two minutes, then I went all the way through the scanning tube and came out the other side. Then we started the 23 minute PET scan cycle. I wasn’t able to remain completely still, my arms kept slipping little by little off the pillow, and I flexed my fingers a little to keep them from completely falling asleep. Despite the fidgeting, I was able to get through the whole scan without a heart palpitation or the feeling that I was going to have an anxiety attack. Thank heaven for anti-anxiety medication!
The technician told me to wait a few minutes while he checked the scan. I was expecting that, because my bone scan was the same. They want to make sure they have good images before they release you. First you pray that the images are good, so you don’t have to go through it again. Then you start praying they only see the cancer where you expect it to be, and no where else.
The technician came back and said I was done – hooray! Now I can get food!
My low-carb diet ends in one minute. The Husband reminded me at quarter to that I had 15 minutes left to eat. I told him I didn’t want to eat anymore, I was so full of cheese, pepperoni, and nuts. Now I’m hungry again, and I already brushed my teeth. Damn.
Now the 12 hour (really it’s more like 14-15 hours) fast begins, in preparation for my PET scan. I dose up on whatever the tracer is – glucose, I guess, since I’ve been avoiding sugars all weekend – at the 12-hour mark, then wait another two hours before I can be scanned and get out of there.
I’ve been worried all afternoon and evening that I would forget myself and carb out, which would really suck so close to the finish line. Bread, chocolate, red licorice (yes, I know it’s not real licorice, so what? I’m hungry!)
All I can have between now and then until after the scan is water and medications. Goody. At least I get to keep my anti-anxiety pills. Better offer one to The Husband. Oh, wait, he’s driving.
Sorry honey, snarky-cranky-wife alert.
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.
Today is the first day of my PET scan diet. Low carbs. I’ve eaten almonds, the egg and canadian bacon out of one of The Husband’s breakfast sandwiches, cheese, and now I’m eating spinach with tuna salad. Still I feel so powerfully hungry. It’s beyond hungry. It’s like a black hole in my stomach, where everything gets sucked in, and it still feels empty. So empty it HURTS. I keep trying to fill the space with water. Maybe I’ll try hot tea. Sometimes that helps expand the food in my stomach, so that less feels like more. Or maybe that’s only if the food is carbohydrate.
Oh my goodness, this is so hard. How will I ever get through the PET scan without chewing on someone’s face? Maybe they can sedate me through the whole process, then have a large pizza ready for me when I wake up?
Got up before 7am with The Child. I can’t eat anything I normally do, and no cream in my coffee, but I’m not going to complain about that right now. Coffee or any sort of caffeine/decaffeinated beverage was off the list in the literature I was reading on line last week. But Virginia Mason changed the rules recently, luckily for me. I don’t know if the research changed nationally, or if Virginia Mason just gave in, because Seattle is coffee town, and there was no way to get it completely out of their patients blood stream with only a two day detox. Heck, my pee is probably as much caffeinated as radioactive right now.
Black coffee isn’t that bad. I’m drinking Starbuck’s® Verona roast, which is my favorite, and which I happened to have in the house at the moment.
Now what to do about breakfast. I can’t take the easy way out, and go with my usual bread and cheese breakfast. I’m keeping the hunger pangs away with a few almonds so far. I need to go to the grocery store for eggs. I’m thinking veggie-cheese omlette. For some reason milk is not allowed, but cheese is. Go figure. This might be a fun experiment.
Oh, if you ever need to have a bone scan, and the technicians taking your information ask you “Have you had any surgeries in the past year that involved your bones?” don’t forget to mention oral surgeries. After my scan was complete, the technician came back and asked if I’d had any dental work. I said that I had a tooth pulled recently. He wanted to know when. About a month or so ago, I replied. Was it on the left? Yes, I said. Was it an upper, he asked. Yes, it was, I said. I see that here, he said. Okay.
That gave me a hint that probably my bone scan would be alright, if the most glaring thing was my pulled tooth and jaw that must have been obviously in bone remodeling mode. That’s why the radioactive stuff they give you works for scanning your bones. Your bones recognize it, and say oh goody, more building material! They hold onto it, and any recently broken or injured bones, including your jaw, must light up the scanner like crazy.
I’m so grateful that was ALL that lit up my bone scan.
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.
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.
The Husband and I are sitting in the cafeteria between my radioactive injection and my bone scan. They have you wait two hours between the injection and the scan so you have a chance to drink as much water as you can stand, and flush out the injection from your soft tissues. If you don’t, all they see is an outline of your whole body, and they can’t see your bones at all. No other dietary restrictions are necessary, thank heaven, or I’d be in trouble, because I ate a bag of pop chips and then had a coffee and a sundried-tomato-basil bagel with TWO mini tubs of cream cheese. Tomorrow I begin the prep diet for the PET/CT scan. Today is my last day before Monday afternoon when I may indulge in bagels, and coffee with cream and sugar. So of course I’m giving myself a free pass (well, I always do, but now I am open about it) to eat bagels, pizza, and drink beer. Because I won’t be able to do that again until Monday afternoon.
It’s pretty easy to “be good” today, I’ve put away 60 ounces of water, and peed three times. I’ve started another 33.9 ounce bottle of water, so I feel like I’m making good progress, pee-wise. We’ve got another hour to go (oops, have to go again!). I’ve still got a little headache, and I’m a little jittery.