It seems strange to keep writing about "nothing" (at least nothing new), but I guess this is my new normal. I'm still kinda sleepy (and dopey), so not much writing, but I have a lot of pictures to share.
My chemo regimen is/was 4 AC's every 2 weeks and 12 TH's every week. So whether you are counting number of infusions or weeks, I'm over half done either way. Woo hoo!
This was the week I didn't have to see Dr. Shah--only the nurse. Unfortunately, my blood counts all dropped and they wanted to check/count them manually, so the time I saved by not seeing Dr. Shah was eaten up by waiting for lab counts! Numbers were:
Platelets: 88 thou/mcL Abs # neut: 1.9 thou/mcLWBC: 3.1 thou/mcLHemoglobin 9.8 gm/dL
My chemo buddy was Laura, who actually took a day off of work to chauffeur me around. We had a great time catching up over lunch and while waiting for my lab results. :)
She was an especially good sport since the Benadryl hit me pretty quickly and I actually fell asleep this time. :(
I seem to be developing a pattern whereby the Benadryl knocks me out during and shortly after chemo. I get home, manage to eat a little supper, then crash (nap) for a few hours. When I wake up, the Benadryl seems to have worn off and the steroids kick in. The last couple Thursdays, I've felt awesome all day. Here's hoping that holds for tomorrow as well!
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Last Friday I wore the wig in public for the first time--to a graduation party held at Zilber for the Fall and Spring grads.
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My friend Bailey got me the coolest print at a local art fair. The print, and others like it, are on the website ArteryInk.com.
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Mira did "Run the Bay"--a 5K fundraiser for our public school district. I'd hoped to run it with her, but I have been very short of breath and tired lately--my attempts at running have not been good. She did amazing (24:30) for not really running much since last fall.
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Travis won an award from the high school tonight--Outstanding Junior Math Student! He also got a pin for another year on the varsity Math Team.
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And Cara is on her way across the state now, to be home for the summer. Greg is a champ, as he left home at 6:30 this morning, drove to the Twin Cities, moved stuff for Cara, then packed the CRV to the top to move her home. I expect they'll be here sometime shortly before midnight.
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I haven't posted knitting pics for awhile. I've been too tired to knit much more than in the waiting room. I haven't made it to Night Knitting for a few weeks, but now that my job at Mt. Mary is done for the year, I have Tuesday mornings free to knit with that group.
Here's hitchhiker with 38 of 42 teeth:
And Travis' socks are almost done:
I'm ready to finish both of those projects and move onto something new.
I've also pulled out the sewing machine and am trying to find a decent pattern for a lightweight chemo hat/scarf/turban thing. I've pinned a few patterns and may try to play around with them.
And I'm caught up on Grey's Anatomy (through this season's finale) and we're on Season 3, episode 19 ("The Price") in Angel. It's going a bit slower, as my eyes get too tired and blurry to watch more than one episode a day.
Today was the third of the TH infusions. Kathlynn was my chemo buddy again and we had a yummy lunch (ok, we both ordered breakfast) at Simple Cafe before chemo. That was good so we had a chance to visit, since I just do not do well with Benadryl and so as soon as the meds kick in, I'm pretty spacey and out of it.
Counts were good. :) So good, in fact, that I don't have to see Dr. Shah next week (unless something strange happens)--just the nurses. I follow-up with Dr. Shah in two weeks.
Platelets: 115 thou/mcL (WOOT!)
Abs # neut: 3.3 thou/mcL
WBC: 4.4 thou/mcL
Hemoglobin 10.0 gm/dL
I still have the same weepy eyes, drippy nose, sore throat stuff. I'm hoping to get to Costco to pick up generic Allegra to try. Fingers crossed! I know that environmental/seasonal allergies have been really bad for a lot of people, so it could just be that, or it could be that exacerbated by the chemo.
New, fun side effect: chemo brain
I'd been warned about this one, but I thought I was doing pretty well. My desk is littered with post-it notes, but what seems to be the worse is when I'm interrupted while doing one task to do another. I completely forgot to send an email last week that I could have sworn I sent. Turns out I didn't even WRITE it (other than in my head). I'm also having trouble searching for exactly the words that I need. This is perhaps the scariest of the side-effects for me. I'm working on compensating (post-its and lists and emails to myself!) and being much more aware of the fact that I can't trust myself to remember anything.
And the exhaustion continues to build. I think the chemo timing is pretty good, as I get it on Wednesday, am good on Thursday (thank you, steroids!) and Friday, then very tired over the weekend, but by Monday am good during the day and just tired at night. Still, the every-week chemo seems to be kicking my butt a bit worse than the "nasty" stuff I had every two weeks. Exhaustion can lead to depression, and I was feeling a bit sorry for myself this past week. It has been rainy and cold in Milwaukee and that doesn't help, either. Amazing how a beautiful, sunny day like today helped. Spring flowers are blooming all over the place--even my lilac is almost there:
I'm just happy to be on my temporary steroid-induced power boost. I'll take it while it lasts!
I was a bit worried about how today's infusions would go, given what happened last time. I've also had nose bleeds all the last week, so I was afraid my platelets might be low, though I haven't had bruises or petechiae or any other signs of low platelets. But my labs were good!
Platelets: 118 thou/mcL (WOOT!)
Abs # neut: 4.0 thou/mcL
WBC: 5.1 thou/mcL
Hemoglobin 9.9
My friend Wendy was my chemo companion today. Wendy and I met through email and La Leche League MANY years ago and we've stayed in casual contact online, but I think the last time we spent any length of time together was the impetus for this article (unfortunately, they've stripped the photos from it). We had a nice lunch at Whole Foods and lots of time to catch up over knitting.
And the infusions went fine. They loaded me up with steroids and benadryl again, and I was sleepy (and probably loopy), but no cough or chills. Hooray!
Yesterday I had my final "embiggening" appointment at the plastic surgeon. My expanders are maxed out on both sides, and will stay in place through the remainder of chemo and through radiation. Radiation will likely cause all sorts of issues with my right side, including encapsulation (warning, link is NSFW--don't click unless you want to see an image of an encapsulated breast). The doctor said they can clean out the area if it becomes encapsulated, and inject fat to attempt to make it look more normal, but radiation messes up the skin and tissues so much that it won't be a perfect match. Other than that, he was very pleased with how the expanders are working and he said I was "very even." Of course, he then said, "you've gained weight, haven't you?" Then he said I won't see him again until I'm done with radiation, so about 5-6 months. He told me that would give me time to lose some weight. I would be offended, except that he's right. Between the time I found the lump and got the diagnosis of breast cancer, I lost 12 pounds. I kept it off through surgery and recovery. Since that time, I have gained those 12 back, plus 10 more. Twenty-two pounds. I've gone from running 3x a week, to running about once every 3 weeks. I'm now heavier than I've ever been other than when pregnant. I've moved into the "overweight" BMI category. And I'm eating, and craving lots of carbs. Hoping this summer will allow me to exercise more and to eat healthier. Cara has told me she'll help, as she will be home this summer.
After finishing radiation, my body needs to rest and heal for 6 months to see exactly what effect the radiation had before my permanent implants are put in. So that means I have these goofy breasts for a year, anyway. None of my pre-surgical bras fit, so I decided that instead of the ugly Target bras I'd been wearing, I'd treat myself to a couple pretty ones at Victoria's Secret (Yeah, I know--retail therapy. But it worked ;)).
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A couple other little things:
There's a line of "empathy cards" that has been making the rounds of Facebook and I found them amusing. Some are really spot-on, but others just don't apply to me. My friends have been amazing and really said the right things (unlike my plastic surgeon... ;)). I *do* think everything happens for a reason. I smile every time I hear or read "fuck cancer." But I do love the lemonade one.
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While it has been wonderful to have Selenia living with Mom and helping out, it has become apparent that Mom needs to have someone with her around the clock, and that Selenia cannot do that (she has a job and family in the area). So we are about to start the look for a full-time live-in aide for Mom. The social worker sent us a list of agencies, but if any of you have recommendations, we'd gladly take them!
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As I mentioned above, Cara will be home this summer. The lab she did research in last summer is closed as the professor is on sabbatical. She was hoping to get in to do research at the Medical College, but did not get that position. I am selfishly kinda happy that she'll be here, and we're working on some lab-related opportunities (likely unpaid) for her here.
Travis is in the middle of AP exams, having taken Chemistry and BC Calculus already. Tomorrow is Computer Science, and then he has English (language) next week. Poor guy, with his birthday sandwiched in the middle.
And Mira's keeping busy with soccer, Girls Who Code, Green Team, and the Middle School Musical (Joseph and the Amazing Technicolor Dreamcoat), which is this weekend. She had to get her purple/pink hair cut off for the performance. :(
Greg's busy wrapping up the semester (and school year) and I'm still job searching, while hoping I might be able to squeeze out some more time at my current job, though my contract ends June 30th. I have faith that something will work out.
Sorry--this will be a LONG one
Yesterday was the first round of 12 weekly infusions of Taxol and Herceptin (the Herceptin will continue for a full year; Taxol only the 12). Dr. Shah called it "baby chemo" in relation to the initial 4 rounds that I had (AC). After these rounds, I don't need the second day Neulasta shot, I don't need steroid pills, and I don't automatically take anti-nausea pills (only on an as-needed basis). One of the things that is a relatively common side-effect with the Taxol, however, is an allergic reaction to the preservative that it is mixed in. Therefore the pre-meds include Benadryl, Tagamet, and a steroid to attempt to ward off the allergic reaction. They also push the first (double or "loading" dose) slower than normal to watch for side-effects.
I was lucky to have two chemo companions yesterday! Kathrine was with me the whole 6+ hours:
And Kristi came for a few hours in the middle of the infusions:
My blood counts were "fine"--
Platelets: 77 thou/mcL
Abs # neut: 3.2 thou/mcL
WBC: 5.2 thou/mcL
Hemoglobin 10.9 (that's up)
I gained 4 more pounds <sigh>.
The Taxol infusion went well. I wasn't even all that sleepy with the Benadryl (Kathrine and Kristi may disagree, as I may have made no sense as we were playing "Would Your Rather?"). And then the 90 minute Herceptin infusion started. "No one" reacts to Herceptin, so I guess my body decided, as usual, to be difficult. When I had 20 minutes left, and my nurse had sent almost everyone home (since it was after 5:30), I started coughing. That's nothing major, since I've had this combo of the weepy eyes/runny nose/sore throat/cough thing for over 5 weeks now. But this was a dry, tickle kind of cough and I'd already drank three glasses of water and gotten a significant amount of saline in my port. And it was bad enough that I couldn't talk through it. Didn't seem (to me) like an allergic reaction, but my nurse knew it was. So she gave me another dose of Benadryl. Like magic, the cough stopped. But then I started shivering. And the shivering wouldn't stop. It was a full-body, feeling-like-I-do-when-I-get-a-low-grade fever, teeth-chattering shiver. They wrapped me in heated blankets, and gave me a dose of steroids, and it still didn't stop. Then my blood pressure spiked. So they gave me another dose of Benadryl (that's three, if you're counting) and the shivering finally slowed and my blood pressure returned almost to normal for me. Dr. Shah was in her street clothes, but hadn't left yet and she said NOT to finish the Herceptin dose this week. They pumped in more saline, and then let me head home, dopey and babbling as I was.
Kathrine was kind enough to hit the Culver's drive-thru on the way home so I could get food for everyone (by now it was after 7:00 pm). I ate and then completely crashed in bed. Greg said he came up at some point and poked me to make sure I was breathing because I was so out of it. I think I got some pretty good sleep, because I was up at 3:30 this morning (steroids, I think!) and could not fall back asleep. Let's hope the steroids keep it up through my work day. :)
That first green link on the chain was well-earned.
An interesting bonus--at least right now--is that I woke up without a sore throat or runny nose for the first time since this cold/allergy thing started. I'm thinking it must be an allergy that even the Zyrtec isn't touching. Not that I'm recommending taking Benadryl regularly or anything.
Some other cancer- and non-cancer related things since the last time I blogged:
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I had another enbiggening session with the plastic surgeon. :) My right breast is now maxed out and my left breast (the one that needed the surgical repair) is almost there--and will be next week. And this was a major "enbiggenment"! After going almost 4 months without breasts, I was bumping into things with them. Of course the fact that all feeling is gone from that part of my body doesn't help. My friend Dawn calls her reconstruction "shirt shelves," and I agree. I wanted "perky" and they are most definitely that.
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This Saturday Cara participated in Hamline University's Relay for Life. She raised $150 for the American Cancer Society, which (as I've written before) is an organization that uses the money for research and not just "awareness." One of the things that RFL does is sells luminarias, that can be decorated in honor or memory of a cancer patient/survivor/one who died. This is the one that Cara made for me, and it brought tears to my eyes:
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I want to mention our TV binge-watching choice. Starting in December, we'd watched all of the episodes of Buffy the Vampire Slayer and while we were watching it, we learned of the cross-over episodes with Angel. We watched one and were NOT impressed with Angel, so neither Greg nor I wanted to watch that series. But my friend Linnea said that we really should--and even tempted me by saying that my favorite character (Spike) comes back in Angel. So we started watching it. It's no Buffy, but I'm really enjoying it, too! Some of the characters (like Doyle and Gunn) are really good, and even Cordelia and Wesley have grown on me. We're almost as the end of the second season, so that will be our nightly TV for awhile. The only current TV I've been watching is Big Bang (lighthearted fun), Grey's Anatomy (and I STILL haven't seen last week's episode with the big spoiler that's been all over the news and Facebook--and the only reason I'm still watching it is that I've watched it from the beginning), and Call the Midwife (which might be the best show currently on TV, in my opinion).
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And that brings me to the job situation. Mt. Mary (tutoring) will end on May 11th. My contract at UWM will end June 30th (with the budget stuff, not sure if it can continue). I'm assigned to teach the "overflow" online section of PH101 this summer, but don't know if that will fill either. So I've been looking for jobs. I had a phone interview for a Public Health-y job last week. It's full-time, which is a little scary, since I'm tired working 25 hours a week. I have to believe that the right job will work out one way or another, since I've been fortunate so far!
Today was my fourth--and final--infusion of Adriamycin and Cytoxan (AC), which are supposed to be the nastiest of the chemos I will be getting. My dear friend Kathlynn (who, as a retired nurse has saved my sanity many times when I've called her with panicked medical questions) was my chemo buddy today. We knit, chatted, and even got in a few games of cribbage!
My labs were good:
Abs# Neut Calc 4.2 thou/mcL
Hemoglobin 10.3 gm/dL
Platelet Count 103 thou/mcL
White Blood Cells 6.4 thou/mcL
Dr. Shah said the killer cold I'm dealing with might actually be a form of allergies, since chemo messes up all sorts of stuff in the body and the way it responds to things. Since this will be my last Neulasta shot (tomorrow), I can stop the Claritin in a few days and switch to Zyrtec to see if it is more effective in getting my eyes and nose to stop running and therefore make the sore throat go away. I can't say enough about how effective the Claritin has been at keeping the Neulasta-induced bone pain at bay, though. Wow!
And I cannot put into words how happy I am that I was able to complete all four doses of AC at full strength and on time. A little cold/allergy gunk is nothing to complain about since I got those hard-hitting meds in and tolerated them quite well! It felt great to rip off that last purple link:
In two weeks, I will start the first of twelve weekly infusions of Taxol and Herceptin, which don't require Neulasta or steroids (and possibly not even Zofran, but losing that scares me!).
Other things that happened last week included an in-between visit to the Cancer Center for bloodwork on Wednesday to make sure my platelets didn't bottom out. (We were thrilled to see that they'd rebounded to 99K, as many of you saw me post on Facebook.)
I also attended the American Cancer Society's "Look Good, Feel Better" session last Monday. Volunteer makeup artists show women how to deal with the loss of head hair, eyebrows, eyelashes, etc. And cosmetic companies donate products, so I came home with a big makeup bag full of freebies, along with tips on how to apply makeup. Best of all, I met three women there who had wigs, and they talked me into getting one. If nothing else, I figured it would be a good idea to wear one when/if I get any job interviews. I won't hide the fact that I have breast cancer, but walking in with a scarf or a bald head kind of screams it, so I thought the wig might be wise. Here's some photos of me in my new "hair." It's a Raquel Welch wig (ooh la la!), which Greg said will go well with my fancy new breasts. :)
Other than the cold/allergy stuff, my only side-effect of note is the tiredness. I am (quite literally) in my pajamas by about 6:30 and in bed by 8:00 every night. I am lucky that I am able to just go with it and let my body rest when it needs it. I just keep thinking that timing is everything and I am so very glad that I finished Grad School before all this. There's no way I'd have been able to stay awake for everything school required. And I'm happy again for two jobs that I love, and work that I am able to leave at work at this point in my life. Life is good.
As promised, here's pics of my bald head after the dried henna was washed off.
I'm a little disappointed in how light it is, but I think that's because the skin on my head is not as thick and dead as on hands and feet (my usual henna locations). As comparison, look at Cara's foot:
I'm also sharing pics of the girls' hair. Cara said she WOULD shave her head for me, but wondered if I'd be okay with her just coloring it for me. So I bought a kit to bleach and color with purple, and she and Mira both did it last week. I *love* the colors!
The last week has been both nice and challenging. It was wonderful to have Cara home and she was so very helpful with everything--cooking, driving, entertaining, etc. But the combo of my cold and chemo has really knocked me on my butt. I am exhausted most of the time. I also am having vision problems. One of the side effects of several chemo drugs is swelling of the tear ducts, that results in excess tear production. I definitely have that! Add in sensitivity to light and general eye blurriness and it's really kind of unpleasant. I spend a lot of time resting my eyes, which (when exhausted) results in naps. Yesterday was one of those days. I've also had the steroids increased to counteract the drop in platelet counts, so my sleep is off.
Friday the kids and I went to the Art Museum. We were disappointed to find that all but the special exhibit was closed for renovation. But it took an hour to walk through the special exhibit and the supplementary exhibits (videos and images of the permanent collection), which ended up being a perfect amount of time for me to be out. All three of my kids have been fortunate enough to participate in Junior Art Docents, so we stop to visit their chosen pieces every time we're at the Art Museum. Trav's was the only one that was on display this time, though, so we had to take pics of the girls by the photos of their pieces. :)
Today I felt a little better. Cara left to get back to the Twin Cities at 9:00, so we were all up "early" to do Easter stuff. It's still fun to watch the kids do the egg hunt--even when they have found all the good spots from the last 13 years. :) I took a short bike ride with Mira & Trav this afternoon, and then ended up doing a bit of yard work. It felt good to dig in the dirt and smell the fertile soil. Bulbs are popping up all over the place and I think a little rain will bring some blossoms.
I've done a lot of cooking (and eating) this weekend, too. We did Easter dinner on Friday since Cara wouldn't be here today. But Mira got invited to a sleepover, and Travis to a guys' gaming night, and Greg had a meeting out of town, so Cara and I ate Easter dinner on Friday. It was good anyway (ham, Greg's mom's cheesy potatoes, butternut squash, asparagus, rolls). Today I made split pea soup with the ham bone to have for tomorrow's supper, along with ham salad with the rest of the ham. We baked S'mores bars and Cara made some awesome guacamole. The kids dyed Easter eggs on Saturday, so I made a batch of deviled eggs with bacon, jalapeños, cheese and wasabi. I made a Mediterranean bean dip for the Healthy Snack swap at work tomorrow. And we went out with Greg's parents for Cara's birthday last night. Lucky Liu's salt and pepper catfish was fantastic! I guess I'm still happy that I haven't lost my appetite!
I hope everyone had a wonderful Easter with family. That's the very best part!
Today was my third AC (Adriamycin & Cytoxan) infusion. I was afraid it might not happen, since I am still somewhat battling this awful cold. And it almost didn't happen--but not because of my cold. Dr. Shah looked at my blood tests and was happy with my white counts (4.5 thou/mcL; abs. neut. 2.5 thou/mcL) and my hemoglobin (11.0 gm/dL), but my platelets are low again (58 thou/mcL). They're so low that she hemmed and hawed about whether to decrease the chemo concentration (less effective) or delay this round (boo!). Finally, she decided that because I am handling everything else so well, and I have a history of low platelets, and am on the borderline for dangerous levels, she'd keep the same treatment and just add another day of dexamethasone (oh, yay--prolonged steroid munchies!). I have to be extra diligent about bleeding, bruising, bumping and if I have any of those, or unusual headaches, go straight to the ER. In addition, I have to go back next week to have my CBC checked to make sure the platelets haven't gone dangerously low. (The first round of chemo, I started at 107 and dropped to 34 at the one week mark, so starting at 58 could potentially drop me into the danger zone at one week.) The AC chemo is the "big guns" so I really want to be able to get all four treatments in at full strength. The next 12 rounds won't be quite as nasty and hopefully my body will tolerate them better. Since the biggest side-effect of this first set seems to be the blood counts, I'm hopeful that it won't be an issue (or at least not as big of an issue) when I move onto the TH (Taxol & Herceptin). I appreciate all high-platelet vibes sent my way.
Cara was my chemo companion today, so I got to show her off to the staff.
We played a little cribbage, and just like her brother did last time, she allowed me to win. We decided that my chemo-induced super power seems to be winning at cribbage, and thought that was a rather lame super power, except that with great power comes great responsibility, and this is a minor power, so minor responsibility. That's fine, too. :)
I'm getting a little braver about going bald in front of people. I got warm during chemo and took off my cap (although I certainly was not the only bald person in the chemo center, so I'm not sure that really counts). I also tried on a hat at H&M outside of the dressing room. And when my father-in-law was here for Grandparents' Day at Mira's school and commented about no one wanting to imitate his hairdo, I didn't even pause before whipping off my hat to show him that I saw his hairdo and raised the bar!
And tonight Cara's roommate Ellie came over, and she and Cara (with a little help from Mira) tattooed my head with henna. The henna has to stay on for hours (until it flakes off) and the final design will be lighter, but here's some pics from the henna application.
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In other "normal" news, I worked a 10 hour day yesterday for the first time since finishing Grad School. I was tired at the end of the day, but I did it! And I think I was at least mostly there brain power-wise.
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And we found a wonderful woman named Selenia who is going to be staying with Mom to help do the little things that Mom's not able to do on her own. We're all pretty excited about her moving in today.
