Working the Process
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!
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.
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.