Sugar Magnolia

[filly]

Oh Sugar

When my parents started going through complex medical difficulties I suggested they bring a small tape recorder to record what the doctor told them. They never had a doctor refuse to be recorded and it was very helpful to have that tape to refer back to. Back then it was a tape recorder but with a phone app that would be easy and a good idea.

[sugar magnolia]

As with all my son's appointments, I'm taping what the doc says and also taking someone with me for the appointments that give me information. No need for them to go with me just to sit in a waiting room while I get tests done and fill out paperwork though.

[p0rtia]

Sugar, the MRI was like a concert to me. I heard Pink Floyd licks, some Joe Satrianni, and to my utter delight, the chugging sound reminded me of The submarine in Thurber’s Secret Life of Walter Mitty (with Danny Kaye) (ta-POCKITA ta-POCKITA). Tell me what you hear, m’k?

FTR, the noise of the MRIs I had was annoyingly loud. If they played music, I didn't hear it. Just clicks and grinding.

[Phoenix520]

No one was playing the music. My stroked out brain heard it anyway.

[filly]

My first MRI the pounding was excruciating. After spending 2 1/2 years remodeling our home, the next MRI just sounded like...home.

I definitely recommend taking whatever sedative they offer you (you may have to ask). No points for submitting to unnecessary misery.

[Foggy]

I feel completely helpless, but only because I really am totally and completely helpless.

I don't understand anything about this at all. I have no experience with anything like this, thank god. I can't give any intelligent advice, or tell any relevant stories. I can't even stand around going "You go, girl, you can beat this thing, I have faith in you!" because in a very short time it would just be stupid. I have a sneaky suspicion that you may need less stupid in your life, not more.

So I am just going to say I love you and fight like a girl and I will read this thread and try to follow along.

[p0rtia]

No one was playing the music. My stroked out brain heard it anyway.

I got that. Just wanted to clarify for the record.

[p0rtia]

No one was playing the music. My stroked out brain heard it anyway.

I got that. Just wanted to clarify for the record. My sister had made a big deal about listening to music during her MRI (acoustic neuroma), so I thought that was the norm. She'd brought her headset. My techs didn't allow a headset.

[p0rtia]

I feel completely helpless, but only because I really am totally and completely helpless.

I don't understand anything about this at all. I have no experience with anything like this, thank god. I can't give any intelligent advice, or tell any relevant stories. I can't even stand around going "You go, girl, you can beat this thing, I have faith in you!" because in a very short time it would just be stupid. I have a sneaky suspicion that you may need less stupid in your life, not more.

So I am just going to say I love you and fight like a girl and I will read this thread and try to follow along.

Dear Foggy, this is no shame or lack of empathy/understand on you. Cancer, as with myriad serious health issues, opens a door you didn't know existed, and you thereby gain access to new thoughts and experiences. Happily, you find it populated by literally thousands of helpful people who got there before you, so you generally don't feel lonely. Everybody inside hopes you never do find that door.

[somerset]

And so it begins....



Because of the new law related to surprise billing, every time they call me about an appointment they tell me how much my co-pay is going to be for that visit. They also told me how much my total treatment is going to be until we hit our out-of-pocket. Not as horrifying as I thought it was going to be and we have most of it in the HSA account already. My only concern is when we start over with the deductible in Jan and I still have 2 more chemo rounds to go. Keytruda alone is in the $10,000/dose range. No idea what our last 2 payments will look like. If I even have the energy to worry about it at that point, I've decided to go the Scarlet O'hara route. I'll worry about it tomorrow.

I had similar thoughts when I started treatment. It was late October when I was first diagnosed, and I wanted to cram as much of the costs into the remainder of the year as I could. I was easily going to hit the out-of-pocket cap for the year, so I figured I might as well get as much billed on top of it as possible.

A side note and observation about medical costs in the US - The bill from Stanford Medical for surgery and hospital stay was over $175K. The amount paid by Blue Cross was $23K, which is apparently what the big insurance company is able to negotiate with the (somewhat) big healthcare provider. I still had some residual to pay afterwards (to meet the out-of-pocket cap), but Stanford worked with me to bill my HSA monthly while I increased the deductions accordingly.

[Fiascoist]

Great idea to tape the consults with the doctors even if someone goes with you. Wish I would have thought of that.
Following on costs, (2009) total treatment, chemo (6 sessions and the approximately 12 more chemo sessions of herceptin only), surgery (2 one for port placement and one for lumpectomy), 30 days radiation (long story on why not the normal 33), one hospital stay for having a crashed immune system (when they tell you to take your temperature and if it elevates, get to a er/doctor immediately, they mean it. It gets serious real quickly.)
Cost neighborhood of $250,000. Costs to me over a period of two calendar years around $20,000. The surgery was the cheapest part of the entire process.

[June bug]

Thanks for the updates, Sugar. And thanks to everyone who’s sharing experiences. Good stuff for all of us who are hangin’ in there with you, kiddo.

[Dr. Caligari]

Sugar,
You might want to ask your hospital if they can refer you to a support group. When my wife was being treated for her second cancer, she was referred to a support group of 6 women patients who met once a week with a counselor. They would then all go out together and get sloshed. It was very helpful for her, and the women remained friends for years after.

Another thing my wife found very helpful was reading Dr. Susan Love's The Breast Book, which is like a breast cancer 101 guide for a patient. And for your husband, I would recommend reading Brendan Halpin's book It Takes a Worried Man, a husband's diary of his wife's treatment.

[sugar magnolia]

Thanks everyone. ALL my scans and tests came back clean, so no metastasis beyond the already-identified lymph nodes. I have a dream team of medical providers, the hospital is wonderful, and my support system could hold up a large country. As of last count among my friends and people I know, there are close to 50 women who have trod this path, so I am in good company. The only surprise is how many of my friends have admonished me not to kill any medical personnel. I would never even consider doing that! Unless they need it.

[Sequoia32]

I'm so glad it hasn't spread any further than what you already know.

[Tiredretiredlawyer]

[Uninformed]

More positive news.

[Annrc]

[MN-Skeptic]

Hoping for only positive news through this whole process!

When you have so many people interested in your progress, I would suggest setting up a Caring Bridge account and regularly updating it.

[John Thomas8]

I've been in combat on multiple occasions. Going the hospital scares me more than any of those instances could.

[Phoenix520]

Only the best news for our Sugar.

[tek]

The White House is lit up pink in honor of National Breast Cancer Awareness Month.

[realist]

That's great news, Sugar.

[sugar magnolia]

Port placed. No issues with the pre-op tests (which I didn't even know they did) or the actual surgery. My arm feels like it's been hit by a train though. They forgot to tell me I can't use that arm for several days!!!! I have a whole stack of like 120 t-shirts I was planning on prepping during recovery the next couple of days for some commission quilts but that big plan is out the window now.

The ports are apparently either getting smaller or I have a different type than the ones I've seen recently. I don't think it's even as big as a nickle. As they were explaining about the steri-strips and when to take the bandages off and such, the doctor started telling me what to do if my bra strap irritated it, then stopped and just looked at me and then we laffed and laffed. He knows I don't wear a bra. And for the first time EVER the back of my hand is not sore from the IV. That may change, but for now I'm taking it as a good sign. One of the two IVs from yesterday blew a vein though, so I have a nice, pretty bruise and a big knot on the other arm. The anesthesiologist woke me up at one point to give me my daily steroids to "reduce my stress." Not sure how to have any less stress than falling asleep sitting up on a hospital gurney, but whatever. Just as an FYI, they taste just as bad through the IV as they do in pill form. From walk-in to walk-out time this morning was just under 4 hours.

Aidan is on her way over with Greek take-out. I'll play with the baby for a few minutes, eat lunch and then head back to bed. Nothing planned next week but a mani/pedi (it will be a year before I can do that again!! WAHHH!!!) and one short endo appointment to check blood work on Friday. The "real" journey starts the following week on Monday when I get my first chemo treatment.

My new 'do!

[bill_g]

You're rockin it Sug.