Sugar Magnolia

[jez]

Lovin' that hair.

I go between growing my hair long and pretty much shaving it off. It really is much easier to take care of curly hair when it's short.

[Phoenix520]

Yes indeed, you do!

[sugar magnolia]

My oldest daughter in Brazil. I had not seen hers before I got mine cut.

[Tiredretiredlawyer]

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.

Great idea, MN!

[Tiredretiredlawyer]

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?

My MRI sounded like a symphony! Lots of clicks, grinds, ba-booms, and odd melodies. I envisioned the concertgoers in reclining chairs like at movie theaters with color displays on the ceiling.

[Tiredretiredlawyer]

Sug- You and your daughter look more like twins than my twin and I!

[Slim Cognito]

[June bug]

And to TRL: You and your daughter do look like twins!!

[sugar magnolia]

Gahhh...I found out yesterday that my chemo treatments will take 6+ hours. At least 7 hours the first treatment. I can't imagine sitting in the same place for 6 hours at the time, and I have no clue what the chemo room set up looks like. Every chair in the room when my son had chemo had a tv/tablet but I'll be at a different hospital. My friend who had chemo at the hospital I'll be at said they had one tv for the whole room, but her treatments were 6 years ago. The nurse who called didn't really have much information about the chemo room so she wasn't much help. I have a tablet but not a laptop (yet) so at least I'll be able to screw around online, maybe watch some tv if I can figure out how to get xfinity to work on it. They claim it can be done but I've never tried it. My arm is still incredibly sore from having the port put in, but I can't take the Tramadol they gave me for the pain so Aleve and Tylenol it is! I think I make it worse while I'm sleeping since both sides are sore and I flop back and forth from side to side all night. It will eventually go away but for right now it's very uncomfortable. Ice packs help.

For those of you who have been through this, what do you recommend I put in my "chemo bag" for treatment sessions? Any tips to make the time go faster? Something you wish you'd known ahead of time? Any other advice you can think of?

[tek]

Some notes from ms.tek:

First and foremost: Get into a community on breastcancer.org, you should be able to join a community that started at about the same time you did. ms.tek is still friends with some in her cohort over a decade later. She says this is one of the most important things to do.

Download a book or movie or two, so you don't have to rely on streaming

Bring a USB battery pack, just in case your tablet gets thirsty doing streaming/movies/etc.

The xfinity app should be fine, you'll need your xfinity login credentials to set it up. But again, this relies on streaming.

Many people just sleep through it, depends on the pre-meds and your psyche.

Going to pee is a pain, you have to take the infusion pump and a nurse with you.

Bring socks and a blanket. With covid, they may not have these to share.

Bring light snacks. The chemo room may have some, but best to have something you like.

If the chemo room only has one TV, be prepared for it to be in Fox. Bring good earbuds, and if the TV is on Fox when you arrive choose a chair where you can't easily see the it.

[northland10]

Sugar -

My MRI sounded like a symphony! Lots of clicks, grinds, ba-booms, and odd melodies. I envisioned the concertgoers in reclining chairs like at movie theaters with color displays on the ceiling.

John Cage

[Fiascoist]

Yep, when I was taking three drugs, it was between 6 and 7 hours. Takes a long time to drip that poison in. (And then to go back the next day for the neulasta shot, so lots of driving. I lived about 45 minutes away from the clinic. And is an absolute necessity, unless you want to spend the next 10 days hovering over a toilet bowl.)
I agree bathroom runs were a little difficult but not unmanageable.
Absolutely agree to blanket and socks. The room was never warm enough.
I tried taking work once but my mind never could focus long enough to get anything done. I describe myself as not being able to sit well and was initially panicked at the thought of being trapped in a chair for that long of a period of time and I am certainly not a contemplative person.
But that never happened. I did become more contemplative and mellow, would watch the drugs and do imagery of how I was striking back.
I did some sodoku because my mind was focused on the here and now. That room was a whole separate reality for me and I felt at peace there. EVERYONE there was fighting the same battle, there was nothing to explain to anyone, like people in like situations. I found that comforting.
No TV, don't think I could have handled it. TV was the outside world, one I was not a part of during those hours. (Side note: a friend who is a fantastic interior designer was hired to redo the naugahyde room, as I call it, at the local clinic, and asked me how many tv's. I said nope, nada, none. They are jarring and with the number of people in the room, no way will everyone see what they want causing stress levels to increase. And news, OMG, what a disaster for everyone. I can just see the volume wars, AAARRRRGGGHHH!
The actual chemo day was the easiest day of the entire treatment, (radiation is too busy and crazy, in and out, next, very stressful and surgery, too much energy around).
Finally, timing. Had my chemo on Wednesday. Would walk out feeling the same as I walked in. Thursday, neulasta shot. Friday would start okay but the effect of the drugs would hit about 3 pm. And my staff would find me on the floor behind my desk in a restless kinda sleep. So, then would come my lost weekend. Chemo brain isn't all bad. At least I don't remember the details of those weekends but I would still feed the horses, take care of garden, etc. just a lot slower. Then by Monday, I would start to rebound... a little. The flagging energy and the muddled brain happen slowly so it isn't a ninja moment of "my brain isn't workin" just a slow, leisurely descent into muddledom. And back to work I would go. (After I was done with chemo, I could look at notes and have no recollection of what had happened. I was living in the here and now, absolutely no past, but could plan for the future, as long as it was written down and someone checking on it).
One more point. Everytime before chemo starts, blood work and weighing (hated that, I Gained 30 pounds in that time and got to see the gain every chemo session when I got on the scale. That sucked big time! Steroids will do that.!) After the doctor reviews your test results, then, and only then, do you get chemo that day. If they don't like the numbers, no chemo. Come back next week. That was the one day I ended up in tears because of my disappointment. No one had told me that could happen. So be aware that it can.
Again, I am happy to chat or just listen if you ever need someone. We, who have gone through this, are always willing to lend a supportive arm, whether in reality or figuratively. Take care.

[Tiredretiredlawyer]

N10- That John Cage number was awfully close to what I heard. Mine was more Wagnerlike.

[sugar magnolia]

At the prompting of the lovely Mrs Tek, I tried signing up on the cancer society board for my specific combo of drugs, only to find out that not only did it fuck up my registration so I'm locked out from the only name I'm willing to use, but my drug combination is only 2 months old. Eleven whole posts in the whole topic. Looks like I'll just have to wait until Monday to find out how it's going to affect me.

[AndyinPA]

I've been MIA for almost a week, but best wishes, Sugar. It's a tough road, but there are lots of people to make it better. And it sounds like you have lots of lots of peple to make it better. I'm glad your MRI went so well.

[chancery]

For those of you who have been through this, what do you recommend I put in my "chemo bag" for treatment sessions? Any tips to make the time go faster? Something you wish you'd known ahead of time? Any other advice you can think of?

Not based on specific experience with chemo, just hospitals in general: considering taking headphones and earplugs in case there's a TV or other unwelcome distractions that you can't turn off.

Best of luck, Sugar!

[Phoenix520]

I took my mom to her chemo sessions every Tuesday, 20 years ago. She always took a book. Other women knitted or did crosswords. I’d take Sudoku if it was me. Mostly she enjoyed chatting when she could, with the other women and the staff.

Do take earbuds. Do you like self-hypnosis or meditation apps? Those are good if you’re able to focus. Singing bowls are soothing. Check out Nick Hansinger on YouTube. He was a professional musician; I find his compositions beautiful. Plus, he’s a wonderful human being.


Have you ever read Orson Scott Card’s Alvin Maker series? Alvin is a 7th Son with an affinity for nature. When he’s crushed by a stone water wheel and spends weeks in bed, in his mind he journeys to an injured organ or bone, visualizing its healthy state, and instructing his body to knit bones, close holes, etc., as it knows how to do. He imagines the healing in the minutest detail, from repairing a damaged cell to increasing red blood cells at the site to the matrix of bone marrow and blood vessels. I do that now with injuries. While I can’t say that I heal better or faster, it does pass the time when I’m not mobile, and it’s relaxing, inspiring, and interesting. It’s led me to explore anatomy.

Sugar, sweets, you will be just fine in the chemo room. I bet you end up helping others more than they help you.

[LM K]

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.

I have super curly hair. I usually wear it long, but I did cut it off and went super short once. I can give you tips for hair products if you want. It can make a difference.

It's amazing how tied women's hair is to identity. That's not a bad thing. I can only imagine what chemo hair loss would feel like.

Cancer touches every part of self.

[sugar magnolia]

Oddly enough, I'm not bothered by my hair falling out. I cut it off so I wouldn't have to clean looooong strands out of the shower drain. It's now about 1/4" long so it will just wash down the drain without clogging everything up. And I won't wake up to clumps on the pillow either. I love hats of all kinds, the weirder the better, and being bald will give me a chance to wear some of them. My big head plus all the hair I did have made it hard to find hats that fit. Being bald will make that easier. I already know my straw Satchmo fedora finally fits!

(My theory of hair is that I don't care what mine looks like, I can't see it anyway. It has spent the last 10 years in a bun on the back of my head so I already looked half bald from the front.)

[Dr. Caligari]

Sugar, sweets, you will be just fine in the chemo room. I bet you end up helping others more than they help you.

I'm sure she will.

[LM K]

Audio books can be a good way to immerse yourself in something while you do chemo.

Do you knit or crochet? The rhythm of fiber arts can be soothing for some.

[sugar magnolia]

Audio books can be a good way to immerse yourself in something while you do chemo.

Do you knit or crochet? The rhythm of fiber arts can be soothing for some.

My knitting is already in my go bag. Maybe I'll finally finish that scarf I started forever ago. I also have a pile of half square triangles for a very complicated quilt that I intend on laying out and pinning together. The squares are only 5" square but there are a couple hundred of them. Dark to light, light to medium, dark to very dark means lots of counting and total accuracy to make the pattern. I also have a denim jacket that I'm doing some slow stitching and sashiko on. That should keep me entertained at least for a while. Bought a laptop yesterday that converts to a tablet. Can't wait to play with it today. Headphones are on my list for today. We also have Amazon Prime, which I think will let me watch movies and read books? I have it for the free shipping so I've never looked into what else it has. Our xfinity says you can watch cable online too, so I'll get that figured out and be able to watch all the murder shows on ID. Or I might just sleep.

[Maybenaut]

Audio books can be a good way to immerse yourself in something while you do chemo.

Do you knit or crochet? The rhythm of fiber arts can be soothing for some.

My knitting is already in my go bag. Maybe I'll finally finish that scarf I started forever ago. I also have a pile of half square triangles for a very complicated quilt that I intend on laying out and pinning together. The squares are only 5" square but there are a couple hundred of them. Dark to light, light to medium, dark to very dark means lots of counting and total accuracy to make the pattern. I also have a denim jacket that I'm doing some slow stitching and sashiko on. That should keep me entertained at least for a while. Bought a laptop yesterday that converts to a tablet. Can't wait to play with it today. Headphones are on my list for today. We also have Amazon Prime, which I think will let me watch movies and read books? I have it for the free shipping so I've never looked into what else it has. Our xfinity says you can watch cable online too, so I'll get that figured out and be able to watch all the murder shows on ID. Or I might just sleep.

Amazon Prime has some fabulous original programming. The Marvelous Mrs. Maizel, Bosch, and Sneaky Pete, to name but a few.

[sugar magnolia]

Audio books can be a good way to immerse yourself in something while you do chemo.

Do you knit or crochet? The rhythm of fiber arts can be soothing for some.

My knitting is already in my go bag. Maybe I'll finally finish that scarf I started forever ago. I also have a pile of half square triangles for a very complicated quilt that I intend on laying out and pinning together. The squares are only 5" square but there are a couple hundred of them. Dark to light, light to medium, dark to very dark means lots of counting and total accuracy to make the pattern. I also have a denim jacket that I'm doing some slow stitching and sashiko on. That should keep me entertained at least for a while. Bought a laptop yesterday that converts to a tablet. Can't wait to play with it today. Headphones are on my list for today. We also have Amazon Prime, which I think will let me watch movies and read books? I have it for the free shipping so I've never looked into what else it has. Our xfinity says you can watch cable online too, so I'll get that figured out and be able to watch all the murder shows on ID. Or I might just sleep.

Amazon Prime has some fabulous original programming. The Marvelous Mrs. Maizel, Bosch, and Sneaky Pete, to name but a few.

Is the new season of The MMM out yet? I binge watched the whole series last year and would gladly do that again.

[Maybenaut]

Is the new season of The MMM out yet? I binge watched the whole series last year and would gladly do that again.

I don’t think it’s out yet. Goliath is another really good Amazon Prime show.