As you may have seen, I have a buzzed head now! The hair that’s left is maybe 1/16th of an inch long… just enough to catch on every hat that I put on. Kevin thinks I should just take a razor to my head and shave it clean. But I’m pretty sure I would cut myself, so I’m not going that route! Just for fun I experimented with a piece of duct tape, and what do you know… it pulls off the rest of the hair. I only tried it in one little spot, so I still have stubble all over my head. I’m waffling on whether I should go for it, all over, with the duct tape, lol!
You’ve already met Steven, my brown wig. Well, now Steven has competition! Teresa gave me a Joy outfit and wig for Christmas. If you have seen the Pixar movie Inside Out then you know who Joy is. She is bubbly, joyful, wears a bright yellow dress and has a mop of blue hair. Her picture is at the bottom of this post. Finally yesterday I took pics of me with Steven and with Joy. I’ve got to admit, I think I still like bald Janet best!
In other news – I worked almost a full day on Friday, then was exhausted the rest of the evening. Whether it was because I had worked so long, or because evenings are just not as good for me, I don’t know. But I really, really took it easy yesterday. Watched a lot of TV and napped mostly. I am achy around my shoulders, neck, back – this happened at about the same time two weeks ago too, and is likely a side-effect of the Neulasta. Evening fatigue has been almost overwhelming the last two nights and I’ve gone to bed by 8pm both nights. Also I am constipated (probably a side effect of the Ondansetron and the Dexamethasone). If you see me on Facebook at 4 a.m. it’s probably because I’m sitting on the throne hoping to poop. (TMI?) BUT I’d still rather be constipated than have diarrhea! And I know that during the last chemo cycle the constipation peaked right around now and eased as the next week went by. The happy news is that I feel good in the mornings (like now), and I anticipate that from now until next treatment I will start feeling better and better.
So here’s a picture of Joy… and even though I don’t look exactly like her when I wear her wig, I put this Pixar picture of Joy as my background on my laptop because that spirit of Joy and Delight makes me happy!
01/04/2019 … 3:30 a.m. – Kevin is sound asleep in the guest room, because I’m a restless sleeper for the first week after each treatment. Charlie is snoring in his crate here in our bedroom. Rosie, who normally is sleeping on Kevin’s side of the bed when Kevin decamps, is pacing. And then she barfs.
(At least she barfed on the hardwood floor and not on the bed).
I could wake up Kevin and ask him to take care of it, but I’m already awake and Rosie’s barf isn’t triggering any barf response from me. I get out the paper towels and the 409 and clean it up. Put on my shoes, warm coat, warm hat, and let her out back. It’s not crazy cold out… maybe 40 degrees, so I sit on the bench on our patio for a few minutes while Rosie does her thing.
Life goes on. Rosie still barfs once in a while. She’s not putting that skill on pause while I go through treatment. This is the great AHA! that comes to me as I sit in the quiet of the patio. Life goes on. And somehow that pleases me.
I knew it was coming… and it did. Today I could pluck out small chunks of my hair without any effort or pain. The hair lasted longer than I expected, but today was the day. I went to my appointment with the genetics counselor this afternoon, and then came home and told Kevin today was the day to shave it off. “Are you okay with that?” I asked… trying to be sensitive to his feelings. “Sure.” he says. (tough guy)
So this afternoon I sat as he buzzed my head. First he had a little fun and tried to make it Mohawk-ish…
And then he went ahead and buzzed it all over. He suggested I take a real razor blade to it, to make a smooth shiny head and not a buzz, but I am pretty sure I would cut myself, and injury is to be avoided during chemo. So I’ll just let the fuzz fall out from here on out. Here are my beauty shots. I’m rather enjoying the look!
Yesterday I went for my second round of chemo. I go once every 2 weeks for the first 4 rounds. I thought it might be a little quieter there yesterday since it was the day before a holiday. But it was extra busy as they worked in some of the patients due for treatment on 1/1.
First I had a blood draw to check my counts. I love my port… no sticking needles in my arm for this blood draw… they just attached the butterfly looking thing (Huber Safety Needle) to my port and draw the blood through it. The infusion nurses do the blood draw in the infusion lounge, and then leave the Huber attached to me for the upcoming chemo infusion. After the blood was drawn and sent to the lab then we sat in the auxiliary waiting area for the appointment with the oncologist. Dr. Jones was out yesterday and I got to see a nurse practioner, Coleen. She was great… and running waaaay behind. That was fine, I didn’t have anyplace to go, and Kevin and I had books to while away the time.
The MA got my vital signs, and Beth, the RN who works with clinical trial patients, came into the exam room and just talked, asking questions about how things went in the last two weeks, and giving advice for the heartburn, etc. She is super friendly and would probably have stayed and talked for an hour if Coleen hadn’t come in!
Side note: Have I mentioned that I got a JURY DUTY notification in the mail last week?!! I haven’t been called for jury duty in years… so of course it comes at time that is rather inconvenient. I took the notice along with me yesterday and Beth was johnny-on-the-spot at getting a doctor’s excuse written up and printed out for Coleen to sign and for me to send in to get excused. She says it happens all the time.
Coleen said my labs looked great. My neutrophil count is actually slightly higher than my baseline from mid-December… because of the Neulasta! All my counts (red blood cells, white blood cells, and platelets) were within a normal range – which meant that it was okay to proceed with the chemo part of my visit.
So Coleen accompanied me back to the infusion lounge and actually pointed at a reclined and said “why don’t you sit there” – which was very nice of her… and it was the same spot I was in two weeks ago! This time I made use of the small TV next to the recliner and had the Oregon vs Michigan State football game on. The infusion was the same process as last time. It started with pre-chemo meds to help me deal with the chemo… a Benadryl pill, IV Dexamethasone (steroid that helps with inflammatory response and nausea), IV Ondansetron (anti-nausea that tells your brain you aren’t nauseous – AKA Zofran), and IV Emend (anti-nausea). That takes up to an hour, and makes me kind of sleepy. Then I received the chemo meds… Adriamycin and Cytoxan. That takes up to an hour.
The Adriamycin is administered by hand – my nurse has a big syringe of it (100cc syringe I think – it’s about an inch in diameter and 7 inches long) and the med is red. I mentioned before that it makes you pee pink for a few times… well after Karin had slowly administered the Adriamycin, flushed the line, and started the Cytoxan drip, I went to the bathroom with my friendly IV pole, and I already had pink pee! I was surprised that the color went through my system so fast!
I had planned to read while I reclined, but I watched the football game, ate my mini-lunch … I brought along a cheese sandwich and yogurt, and picked out some hearty fig newtons from the snack cart as well. And the highlight of the day was getting to see the therapy dog, Sybyl, again. Last time I was there it was Sybyl’s first visit to NorthStar. This time it was her second visit… I guess we are on the same schedule! I didn’t read, and I didn’t sleep.
Kevin came with me for the blood draw and the visit with the nurse practitioner, saw me settled in for my infusion, then left to do his own stuff – turns out that he fed the dogs, went for a 2 mile walk, and started making a batch of bread. I texted him when I thought it would be about 20 minutes more and he timed his return perfectly. He drove me home and I went to bed and slept for a few hours, got up for an hour, then slept until supper was ready. Kevin made a rosemary chicken in the sous vide, pasta with a garlic cream sauce, and carrots, for our supper – and I didn’t have any problem eating! He takes such good care of me.
Then I went to bed, and slept fairly well until about 4 a.m…. It’s 5:30 a.m. now. I’ve been up since 4, but I figure I can nap all day if I want. But I’ll probably watch the Rose Bowl, since Teresa is there! Maybe I’ll see her, right? Y’all can watch for her too… she’s the one with purple lipstick.
It’s been a while since I posted. I’ve been busy! I went to my parents’ home on Christmas Day and stayed until yesterday – lots of family time! I got to spend time with both daughters, as well as meet my first great niece… 2-week-old Madeline Grace (a wonderfully bright-eyed baby who listened intently while I imparted all my wisdom to her). By evening each day I was usually wearing out, but I did pretty well through the day, and stopped taking any nausea medicine midweek.
Here are some things I didn’t expect with this chemo: I feel normal, and have felt normal since about Christmas, other than a little fatigue at the end of the day. My taste has almost fully returned to normal – I thought that once I lost it, it would be gone for the duration. I haven’t lost my hair yet. My fingernails are still growing. I also expected that as my red blood cell count dropped (which I assume it has done, but don’t know for sure) that I would get cold more easily. Still, these are all things that perhaps with each treatment will “bounce back” less and less. But for now I am enjoying some normalcy.
Yesterday I flew home to Yakima from SeaTac. I hear your horrified intake of breath… but be reassured… I was very careful about avoiding germs! After going through security, I sanitized my hands. I bought a bottle of water and hot breakfast sandwich at one of the restaurants there, sanitized my hands, and ate my food. I didn’t sit in the chairs crammed together at the C2C gate, but sat across the concourse from the gate well away from people, and wore my N95 mask. And when my flight was called for boarding I waited until the last to board. And again, I wore my N95 mask on the plane for the 25 minute flight.
Germs were the least of my concern on THAT flight! It was very bumpy to start, less bumpy midway for a few minutes, and then was the roughest landing I have every experienced! There was a cross wind on our landing and the plane was tilting and gyrating as it got closer and closer to the ground. I think it landed on one wheel, bounced up, bounced down, bounced up, and FINALLY steadied itself to a regular landing. I can’t say for sure because my eyes were closed. (Teresa, you would have hated this flight)
Tomorrow is my second chemo session. So today I shall celebrate and appreciate my good health and a beautiful sunny day.
The stockings are hung by the chimney with care… but what do you know, Santa has already been there! (Santa came during the day today and filled our stockings – how out of the norm!) We aren’t following all our Christmas traditions this year, and it’s feeling a little strange. I’m not playing with the brass at the Christmas Eve service tonight. AND we’re going to open our presents tonight! The tradition, when the girls were home, was for them to get to open one present on Christmas Eve and it was usually pajamas. Then on Christmas morning we would open stockings, eat traditional breakfast, clean up from breakfast, get dressed, and THEN open presents. But since the “girls” aren’t here, and we’ll have a bit of a time crunch tomorrow morning, we decided to open present tonight, after our traditional homemade pizza supper (at least that’s staying the same). I told Kevin it was a slippery slope that we started down, once the girls left for college and we started watching TV while eating supper. Now it’s come to this!
Tomorrow morning, after we open our stockings and eat our traditional Swedish Egg Cake, Kevin will drive me to Ellensburg to meet up with my brother and sister-in-law. They are driving from Ritzville to the west side tomorrow and they are giving me a ride to Mom and Dad’s (see you tomorrow Mom and Dad!). I’ll spend the week with them. Suzanne lives nearby in Tacoma so I will get to see her, and Teresa is flying down from Alaska on Thursday, so I’ll get to see her too! I expect that I will get to meet my new great niece while there – HOORAY! Kevin will keep the home fires burning here in Yakima. Our dogs are not good house guests, so it’s better that they stay home with him.
So this doesn’t have much to do with cancer – but it does. I am still a normal mom, wife, human. I might be switching things up a little bit, but I cherish traditions (old and new), and I’m still going to do the stuff that has meaning for me. And sometimes that helps me forget that I’m in the middle of chemo. Sometimes I can be just regular ol’ me… and that’s nice.
Addendum: Now that we’ve opened presents – Kevin got me several awesome pairs of earrings from my favorite jewelry designer and friend from Boise, Lisa’s Creations ( https://lisas-creations-jewelry.myshopify.com/ ), and I got him a fabulous Nordic baking cookbook – And Now that the mail has arrived, with presents of 3 beautiful hand-knit hats, and pecans, from my sister in Texas, and Now that we’ve eaten our Christmas Eve pizza…. I’ll add some pictures! Happy Christmas to all of you!
My Grandma Callahan would take her first sip of coffee, or her first bite of a meal, and comment with satisfaction “mmm, good.” Especially in the last few months I found myself doing that sometimes too. In anticipation of losing some of my pleasure in flavor I was more aware of flavors and smells… spending just an extra moment to savor the flavor.
Well, I knew it was coming, and it has started… My tastebuds just aren’t as sensitive. Kevin made pumpkin bread the day before yesterday and the bite of fresh warm pumpkin bread didn’t taste like anything. It’s sad, but not unexpected. Oh, and here’s a detail of chemo that is super annoying… my spit is thick, so my mouth feels kind of slimy. To combat the slime what seems to feel good is hot tea… it feels like it washes away the layer of slime. And what tastes good still is salty, cold stuff, like cottage cheese… And citrus flavor is still good… the lime in the guacamole in the tacos last night came through so well. Texture and temperature are what seem to be almost as important as taste now. Cool, or relatively hot, not room temperature, seems best. Smooth textures (yogurt, cottage cheese), or easily crispy (like saltines). Crunchy warm toast with melted salty butter is good. NOT trail mix – wrong temperature, wrong texture. It all so strange…
I’ve eaten a turkey sandwich for lunch almost every day and it still tastes good. There’s enough salt in the turkey, and the texture of the bread, and the coolness of the turkey and mayo all work. I ate half an apple with my sandwich for lunch today and that was good… juicy, some flavor, cool. But it will be trial and error – and potential frustration for my poor chef.
The good (?) news is that sweets just don’t tempt me at all. Maybe I will try ice cream (because of texture and temperature) but it would be sad if the flavor is gone. Mmm… sudden thought… orange sherbet! I’ll have to put that on the grocery list!
I guess we should have titled this post More Adventures in Chemo Side-Effects. PS: We ate pizza for supper tonight and it was good. PPS: I got stuff done today… check out the picture below!
Sleep has been weird – I’ll go into detail on that some other time. But I woke up at 5:30 this morning, and waited about 15 minutes before getting up. My stomach was signaling hunger. I’m told that one of the ways to avoid nausea is to eat more frequent small meals – keeping a little something in the stomach – and since it had been about 10 hours since my previous meal I decided to get up and eat.
Kevin has been sleeping in the spare bedroom. My sleep is restless, and he is a light sleeper, so it’s just working out better that way. I miss him a lot some nights. This is going to be a long 20 weeks. So when I got up this morning, I let the dogs out and chose Raisin Bran for breakfast. Seems I’m leaning more toward the chemo side-effect of constipation rather than the chemo side-effect of diarrhea (suits me just fine… I hate diarrhea). I also took one of my anti-nausea meds (Ondansetron) just to ward off any of THAT nastiness.
I showered, lotioned up, and dressed in normal clothes (jeans, t-shirt, sneakers). I like to feel normal, and dressing normally makes me feel more normal. I even put on a little eye-makeup! Then I sat on the couch in the living room and did computer-y stuff… Facebook, email, blog. Kevin got up after a while and had some cereal for breakfast. We read the newspaper, chatted, normal stuff. My project today is to really clear and clean off the kitchen counter that is our drop zone (y’all have a drop zone, right??), and then to put up all the Christmas cards we’ve been receiving. So I did some clearing, while Kevin worked on his project. Let me tell you about HIS project…
It has NOTHING to do with cancer or chemo. It’s got to do with beer brewing. Kevin brews beer. He started with a kit batch about 5 years ago and it has blossomed from there! He collects and/or builds beer-brewing stuff like a fly-fisherman does flies… except beer-brewing stuff is bigger. He even built a nice big fermentation cabinet that is out in the garage. Anyway, he’s been having trouble keeping the fermentation tank warm enough for the beer to ferment in his timeline. So he got this idea of how to keep it warm. It involves a sous vide, tubing, straps with tubing holders (sewn on my sewing machine), and nylon cords. It’s complicated (in my mind anyway) and quite a project, but he’s so creative to figure out a way to run warm water around his tank at a constant temperature. Here’s a picture of his invention (the sous vide isn’t attached in this picture, and I think it will look different than this when he’s done)
Now that it’s late afternoon on this normal day, this is what has happened. I ate cottage cheese and blueberries for my mid-morning stomach-settler snack. I talked on the phone with my dear SIL, Kathy. I got sucked in to Facebook. I made reservations to come back to Yakima on the Saturday after Christmas… (I’ll be spending Christmas with my parents in Des Moines, WA). I ate half a turkey sandwich and applesauce for lunch. I took a nap… after I took a picture of Kevin’s invention. The counter is not yet cleared and cleaned, but it’s closer. I am learning to let things happen as they happen.
I know I’m doing some jumping back and forth on my story, but pretend it’s one of those annoying movies with lots of flashbacks. Today’s story happened the day before yesterday (12/20), and I would have posted it yesterday, but I needed a few pictures to go with it.
I have been feeling pretty decent in the mornings, and have worked from home half a day Weds, Thurs, and Friday. And then around noon I just seem to poop out. So I eat a little lunch, and nap a little, and see how it goes from there.
Thursday, at noon I was tired, but Kevin asked if I’d like to go get pizza at Westside Pizza (2 slices and a soda for only $5… for seniors). That sounded okay. After eating my 1 slice of pizza and giving the other slice to Kevin (because that’s how we roll), we went to a place here in Yakima that supports cancer patients, Wellness House. I had gotten their information from the NorthStar social worker.
Wellness House has support groups and such, but what I was interested in were their free wigs. They have, essentially, a wig lending library. I am told that my hair will fall out, so I figured it might be a good idea to have a wig for “dress-up” occasions. But I also was hoping I’d find one that was some fun color, like blue, or red… why be normal??? The young woman who greeted us as we entered referred us to Eunice, who would be the best at helping with wigs. Eunice, a long time volunteer there, took us to the wig room, which unfortunately, only had normal hair colors. Oh, sometimes they get colorful wigs, but mostly just standard colors. That was a disappointment. To me the standard colors looked so… grandmotherly (please grandmother friends of mine, do not be offended!). The first wig I tried on was too blonde. The next was too dark. The third was dark brown with a few gray hairs here and there…. probably as close to my own coloring as they had. And it was pretty short hair compared to most of the wigs. I didn’t want some crazy long thing. So I settled for it. After all, it’s free. Turns out that it’s a man’s wig!! Here’s another thing I learned about wigs on this day… they have names! The one I got is a “Steven” (even though it doesn’t look a bit like my brother-in-law). Here are some pictures:
Somewhat disappointed with that wig expedition, we decided to go to Yakima Beauty Supply here in town. The social worker at NorthStar had also given me a certificate for $100 toward a wig at this beauty supply shop. The young woman there, was kind, but definitely not the person in charge, and seemed a bit confused about what was available. First of all their supply on hand was low, they are expecting more wigs in a week or two. BUT they did have some colorful wigs! Okay, Seahawks colors… and, sorry my Seahawks friends, not really what I wanted. By now I was thinking dark blue, or red and black, COLOR! The girl showed me their catalog of styles and told me that the catalog is out of date, so I should look online. I sat in the store and scrolled through a wig website online on my phone. Kevin is so patient. I noted a few wig names, and colors, and she said she will look into possibly ordering one for me and call me. If I don’t hear from her I figure I can go back in a few weeks to see what’s new.
I ended the day with a boring, darkish brown, man’s wig (my new friend, Steven). And the hope for something more colorful to come. AND I was definitely all tuckered out.
After the surgery the news was good – the margins around the tumor were clean and the sentinel nodes were clean. But the size of the mass (about 3.5cm) and the high grade of the cancer meant the surgeon was passing me on to oncology and that it was very likely that I would need to do chemotherapy.
There was an interlude of almost 3 weeks between that news (Oct 25) and when my appointment with oncology was actually made. Wise advice from someone who’s been through it… if you know a referral should have been sent, but you don’t hear from the receiving office, double check on both ends. Turns out the surgeon’s office had faxed the referral, but the fax hadn’t gone through and they hadn’t noticed.
I finally met my oncologist, Vicky Jones MD (I liked her immediately) – on Nov. 19 – one month out from my mastectomy. She was very thorough in explaining where her thought process was going with my cancer. She started from square one, and drew it all out on the exam table paper – which I took home with me.
One thing was keeping her from flat out scheduling chemo… At the time of the core biopsy (back in early October) the cancer cells that were biopsied were triple negative = no hormone receptors. At the time of the mastectomy (10/19) there was cancer found outside of the ducts, but it was not tested for hormone receptors. Dr. Jones wanted to know if those cells were the same or different. IF the cells found outside of the ducts had hormone receptors then she might want to do a chemo/hormone therapy combo treatment. IF there were hormone receptors and they were very enthusiastically active, then there would be a slight chance of doing JUST hormone therapy alone. So she put in a stat order for pathology to be done on the cancer cells found outside of the ducts. She also mentioned that I might be a candidate for a particular clinical trial.
This was the week of Thanksgiving. The week after Thanksgiving I was scheduled to work in Seattle… do I stay or do I go. I went. No word from anyone on Monday. I made a pathetic call to Dr. Jones nurse, Joyce (who I also think is wonderful) on 11/27 requesting possible results. Finally on 11/28 I connected with Joyce, and made an appointment to meet with Dr. Jones on the 30th to “put it all together”. Back to Yakima.
11/30 – NOW, I thought, NOW I’ll get a chemo start date! Nope. Still not that straightforward. First I met with the social worker, Melissa, who talked about my FMLA paperwork. Then I met with Dr. Jones – yes, all triple negative. no – no hormone therapy for me (I was not surprised). She mapped out the chemo plan, and offered me the opportunity to participate in this clinical trial (Here’s a preview on the ubiquitous table paper…I’ll explain it later).
It seemed like a pretty straightforward trial and I was ready to sign up right away if that was going to move things along… but no… the rules are that you have to take the paperwork home with you and really think about it. Can’t sign the papers on the same day you are presented with them. It’s the rule. But I met Beth, the clinical trials coordinator and she explained the trial and the paperwork in great length.
At the end of this appointment I had 6 vials of blood drawn, and had orders/referrals sent to VMM for a MUGA scan, and to Dr. Wooten to schedule a port placement. This was a Friday, Beth would call me Monday or Tuesday to schedule a time to sign the clinical trial paperwork.
I swear… after having things move SO fast at the beginning of my diagnosis, this was sheer agony waiting. It was hard to know when to be pushy and when to be patient. More in part 2…