So yesterday, Friday, was for me a super terrific day. 24 hours post infusion #4, and I had no pain in my hands, no numbness in my feet, no all-over body aches or cramping, so I got a little cocky. I took out the recycling, did some laundry, and the topper, scrubbed the kitchen floor. Well, today we are starting off with two Aleve before breakfast. My hands and feet are numb, my joints ache, and while so far I don’t feel my usual all over fatigue, I can sense it coming, as all across the top of my shoulder blades we have the beginning of a deep-down muscle ache. And no, I don’t think it’s all from scrubbing the darn kitchen floor. Although the ache in my right bicep may be from that. I think I’m getting too old for this crap…
Today was my second infusion of the taxol. About 5 hours later, I feel HOT, and not in a good way. Hip joints ache, and I just feel yucky all over. And of course, I’m being an irritable, whiney bitch. Poor Ken. 🙁
Took some Aleve, then a little later it occurred to me that I hadn’t had but 10 grams of the glutamine today, so made a milkshake with another 10 grams, so hopefully that will help. Phooey.
Tomorrow will be better.
I am now without a doubt that my eyebrows are thinning, as are my eyelashes. The kid asked me a couple of nights ago if I had any eyebrows. We were having a bed time story, and she was sitting just to my right, so saw me in profile. I said yes, I still had my eyebrows, and looked at her so she could see them. After she was reassured, we continued with story time, and then I tucked her in for the night. I went to the mirror to reassure myself that night, and a couple of times a day since then. They are growing thin. I’m wondering if I should shave them off, or leave them be. Believe it or not, you can buy yourself a pair of stick on eyebrows – and I have. They are sitting right now with my false eyelashes. Honestly, I don’t know why I buy this stuff. I never got the hang of false eyelashes before, and most days of the week I don’t even bother with the makeup that I bought so boldly back in February. And when I do wear it, I’m as conservative as I always was, despite swearing that I would wear BOLD colors every day, to go with my BOLD ginormous earrings, which are still sitting in the jewelry box. Silly. I should have known I’d be too chicken to pull that off…
Of course, I think it would be hard to pull off bold eye makeup under no eyebrows, or maybe I’m making that up because I am a chicken.
Hair and appearance are important as you go through this experience. Actually, it’s important through the entire experience called Life, The Advanced Course. I hadn’t recognized this fact until yesterday. I sort of take my hair for granted, I really do. I let the roots grow out too long, the cut go stale, and I don’t spend adequate time caring about my hairs specific needs for the stage it happens to be in at any given time – pregnancy, age, being ill. It just sort of hangs around until I decide to spend the money to do something about it. I am being stingy about the cost of maintenance, as I have “more important” things to spend it on – right?
But my hair, just as much as my two boobs, are part of the view I have of me. I was sad about losing my right breast (poor Frownie), and I was freaked out about losing my hair. I revisit this fear every time I wash my hair now, noting any tenderness in my scalp, and when I wrap the towel around my head, I wonder “Is today the day it starts coming out in my hands?” and how will I react to that? I’ve started sobbing in the bathroom some mornings, as I tenderly pat my hair dry.
As some of you know, I’ve been considering cutting my hair short in preparation for the day, coming soon, when it will start to fall out in my hands. I have worried about how my regular hair designer will feel as she shampoos my hair in preparation for the cut – will it come out into HER hands? Will she be grossed out by me? I just couldn’t face it.
Boy, was I wrong.
I am a regular customer at the Moda Hair Café and Day Spa in Edmonds, WA. They always make me feel welcome and important, and they really do feel that your hair is important, at every phase and incarnation – including the one I find myself in right now. These men and women are true professionals, and artists. Making your hair look its best, caring for it, and giving their advice, taking into consideration your hair special needs, is their profession, and they take that very seriously. I should have known this, based on the entire salon moving into action, all hands on deck, when I had an unfortunate home hair coloring experience. Ladies and gentlemen of Moda, forgive my foolishness. I will never again take action against my hair without consulting your professional advice.
Let me tell you about my conversation yesterday with one of the co-owners, Jamie.
MODA is for Mother-Daughter, as Moda is co-owned my a mother-daughter team. Jamie is the daughter. I’m so grateful that it was Jamie herself who picked up the phone when I finally got the nerve to call. Not only did she spend 15 minutes with me on the phone, but I was in tears of gratefulness at one point, so much was I touched by what she had to say. She corrected my assumption (I’m ashamed of myself, Miss Jamie) about anyone feeling strange or uncomfortable about my situation. We are professionals here, she told me, making you and your hair look its best is what we do every day. About my regular artist, Emi, she said “Let me tell you about Emi. Emi is a natural artist.” She told me if I put myself in Emi’s hands, I could trust her to give me a flattering hair cut, best suited for what I am dealing with. She also told me they have many clients who have faced cancer, chemo, and losing their hair. That it’s just a short phase, and that we have to take care of the hair and the scalp underneath. She advised me on some options, and felt they would do well by me, in removing the residues from chemo that I keep feeling in my hair and on my scalp. She also told me that everyone’s experience with hair loss during chemo is different – some don’t lose a strand, some lose it in patches, etc. By the end of that call, Jamie had convinced me that no matter where I land in that spectrum of hair loss, I was in good hands at Moda. They can not only handle it, they will be able to offer their professional advice and support to me while I handle it. I love you, Miss Jamie, and I love Moda.
We also talked about how chemotherapy and hair loss is “just a short phase” and how my hair will be different when it starts to grow back. This means my hairs needs and how I care for it will change again. You can bet that I will be calling Moda when that time comes – I’m going to need their professional advice!
I couldn’t remember which drugs the medical oncologist recommended for me, so I’m listening to the recording of my appointment with SCCA from last week. The more I listen to her recommendation and why, the more I trust and like her.
I am a very, very lucky woman. I love my team at Seattle Cancer Care.
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.
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.
I have mentioned that the type of cancer I have doesn’t show up on a mammogram. It is even hard to find during a monthly self-exam, which I rarely do (shame on me!). The first indication that I had any trouble was the external appearance of my breast. There was a noticable bulge. Initially I thought it was just hormones. Then we thought it might be scar tissue. You know already how wrong we were. What you may not know is that shortly after we started this party, my normally inverted nipple started to change. I noticed it first, but I didn’t make the connection right away that it had to do with the tumor. I’ve always had inverted nipples, so I’m used to the looking a little weird compared to other women’s nipples. But the one on the right seemed to be positively gaping. It was The Husband’s comment that same morning that made the connection between the tumor, and the gaping nipple. He said “Are there bears living in that cave?” Which was funny, and kind of freaky at the same time, like so much else has been about this experience. I wondered – if I had noticed the bulge a month sooner, would my lymph node be invovled? What if my bone and PET scans show the cancer has by-passed the lymph nodes altogether (save the one) and moved into my bones, my liver, my blood? I didn’t notice the cavernous nipple when I noticed the bulge. Is this thing moving that fast?
Maybe it’s just that my breast has been signficantly mangled and mashed the past few weeks. I normally get twice the mangling every year, due to my fibroid-prone right breast. But for the past three weeks, it’s been a cycle of “mash. mangle. Repeat!” for poor frownie. Maybe she’s registering scorn by making a (even more) scary face at me.
Maybe if I just keep smiling back at her, she’ll see it’s really going to be alright.
Because it is.
Super powers, engage.