Fogbow

Take good care of your port. The steamy south is known for its weird pathogens. Septicemia is not fun.

ETA

I have no experience with cancer. This is all very scary. I'm wishing you lots of family and friends who hook you up with love, patience and understanding. ❤

Soon the cancer "humor" will kick in.

For example, ms.tek calls her port a "headphone jack"

Met with the surgeon and oncologist today so we have a plan! Chemo every 3 weeks for 18 weeks and then surgery. Port goes in on Friday and first chemo is Oct 11. He doesn't foresee any additional chemo after the surgery except possibly the pill kind. He's putting me on some protocol that was literally approved 2 weeks ago but he sounded very positive. My whole team of doctors have been fabulous and I have great confidence in them. Forever indebted to Bart and Debbie for getting the ball rolling and smoothing the way, and Gail for sharing the fabulous Baker with me. They're even scheduling the treatments around Aidan's wedding.

It's a slow road, but taking each day at a time works. Best wishes, always thinking of you.

Oh man, that sounds like good news ... tentatively ...

Great News, Sugar! And you have a positive attitude, which is so important.

Onward and upward thoughts!

Our younger daughter wore her port for a long time after chemo just in case it was needed. Finally had it removed after a few years in remission. She is still doing just fine.

Best wishes for a great outcome Sugar!

Positive news.

You got this.

Great to hear there is a plan and that it also prioritizes Aiden's wedding.

That’s great, Sugar! Kick its ass!!

Just thinking about you Sugar and wishing you eventual health and happiness. In the meantime wishing you strength and as few side effects as possible.

Good news on chemo first, then surgery. Remember treatment can change on a dime and that isn't necessarily bad news, just the nature of the beast.

Plan sounds good, team is ready, and we know you're great - cancer doesn't stand a chance!

and

And so it begins....
Six scans and pre-op stuff today then surgery to place the port tomorrow. This is when we find out if it's spread any further than the lymph nodes they've already biopsied. Fingers crossed. The treatment plan may/will change if they find anything new.

I got all my hair cut off yesterday. Like, ALL of it. 16" of curls lying on the floor looked so weird. I already knew I couldn't donate it to Locks of Love because it has grey in it. Not a lot, but what is there is pure white and even curlier than my regular hair and they won't take it The 2" left on the top of my head looks like a poodle. 99.9% of the time I kept it up in a bun or ponytail, and the combination of pulling it back and just the weight of my hair kept it relatively straight looking so I had no idea how curly it actually is. My husband keeps telling me how cute it is, but I'm not sure if he's doing that because he actually likes it or if he's doing it to reassure me. Either way, I'll take it. The alternative to getting it whacked off yesterday was dealing with it falling out within a month (my doc says that's one of the first side effects from the particular meds I'll be on) and then having to dig it out of the shower drain and off my pillow. My friends say that was one of the things that made them the saddest. Seeing clumps of hair everywhere. Not going to deal with that. The good news is that, while chatting with the girl at Supercuts (hell no to paying $60 for basically a shaved head) I got some good leads on a couple of people who may be able to do hair and make-up, and possibly a photographer, for Aidan's wedding.

Filled out the reams of paperwork at the oncologist's office the other day and was very surprised and happy to see that one of the questions was whether I'm claustrophobic or not. A resounding "YES" to that one. I'm assuming it's for future MRI scans or something, but it made me happy to know I won't have to go through all the rigamarole involved with getting Xanax or something if they do have to do an MRI. Genetic testing (for BrCa?) in Nov. The company is in Memphis so they have it set up where there is an office at the cancer center and you basically do a tele-health meeting over the computer with the genetics counselor and then spit in a tube. Three weeks later they email you the results. I think that's pretty cool.

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.

So anyway, good thoughts for clean bone scans, CTs, Echos, EKGs, X-rays and whatever else it is that I have scheduled today. Appt with my endocrinologist next Friday to find out if those meds have to change. I won't be too disappointed if they do because those steroids taste terrible.

Sending lots of healing energy your way!

Sugar -- FWIW on MRIs and claustrophobia.

I had a couple of MRIs a few years ago, and since I am also claustrophobic, I went to the trouble to get a prescription for the recommended sedative, blah blah blah.

Got to the lab and discovered that instead of the six foot long tube I had been expecting, the new MRI scanners are only about four feet long and open at both ends. Much larger diameter than what I expected too. In the end, nothing that would have triggered my claustrophobia. If I'm lucky enough to need another MRI in my life, I won't bother with the sedative.

So my recommendation: Sometime when you're in the neighborhood, ask to stop by and see the scanner beforehand and add that info to your prep.

Excelsior.

I really liked the bald look. Even had to renew my driver's license while bald and never changed after my hair came back. Quite a few people told me I rocked bald. Went to court while bald (initially requested permission to appear with a hat which the County okayed but felt stupid with it on, so just went about with my life bald). Bald is great for windy days on boat trips but a new riding helmet was required. What sucked was losing my eyelashes. Those sucker are really important for keeping dust out.
Oh, last piece of advice, always take a person to any appointment. Chemo brain and just the stress(even before chemo) will play havoc on your memory and/or ability to comprehend what you are hearing. One of my doctors said he figured the patient only retained about 30%of what they heard. And I never had any medical professional ever not want someone else there. So take one or two with you always.
P. S. I always felt safe in the chemo room. Better there than almost anyplace else because there I was actively doing something, attacking the cancer, rather than just passively watching others do something. If one can enjoy something about cancer, I did enjoy my quiet time there.

The alternative to getting it whacked off yesterday was dealing with it falling out within a month (my doc says that's one of the first side effects from the particular meds I'll be on) and then having to dig it out of the shower drain and off my pillow. My friends say that was one of the things that made them the saddest. Seeing clumps of hair everywhere.

This is what happened to ms.tek in Cancer Round 1, resulting in a trip to Walmart to get a hair clipper and my very emotional stint as a barber.

You (and hubs) are in for a ride, but I know you'll make it through

I had an MRI after the stroke. All my fears, internal chatter, bad tapes, etc disappeared for about 6 weeks after the stroke, it was quiet in there, so I wasn’t thinking claustrophobia. To my surprise, one of the dads from sprout’s school was the MRI supervisor. He wasnt there when I went for mine but he’d told them to take good care of me. They did.

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?

I always took someone to appointments with me too. I was too overwhelmed to hear everything the doctors said or heard what I wanted to hear (not what was actually said). I bought a very pretty notebook just for this and gave it to whoever was at the appointment with me. It was so helpful to have this to refer back to. I also kept important papers in there (appointment reminders, instructions for tests or surgery).

Damn.

I don't know what to say.