Chemo Starting September 2018
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Y'all sound like you're making super progress! I'm so envious of the hair growth...I only have little hairs at most about .75 inch long. I think they're either white or blond...at any rate, they aren't dark enough to cover up a thing. I'm thinking of just ditching the head covers when I go back to work, except when I'm outside because of the cold. It's a little because I think our society pushes us all to cover up (literally) unpleasant things, to only show the easy, successful side of life. And I've known an awful lot of folks in my life who had obvious disabilities. If they can't cover theirs up, why should I? There's some solidarity in deciding just to ditch the hat and be who I am. But I'm not sure I'm really that brave. It always bothers me at first for people to see me without a hat....Until after they have seen me. Then I never put on a hat for their presence again.
Here's hoping things go ok at work. I've had a hell of a time just getting through HRs paperwork. They have been incredibly confusing about what forms they want me to fill out, and even when I do submit them, they're mad because I haven't been quick enough. I have explained that I'm not quick at anything because of the side effects of chemo, but they change the subject or start to threaten me with all the bad things that could happen to me if I didn't turn the forms in. Sigh.
Yesterday I couldn't remember the name of my much beloved uncle. That's typical for the kind of word loss I'm having...it's really kind of scary. I'm praying my words keep coming to me while I'm working!
Hang in there!
Fairchild
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Fairchild - That reminds me of this email I need to respond to about my leave. It is such a hassle.
Beeline - Sorry you are going through this pain as well. I hope it'll be easier for you. And having to wear wig/hat during summer sounds horrendous! When I went to the gym with a thin beanie it was still hot, but thankfully towards the end I became the only one left so I could yank it off to let my head cool off! Would you be able to fill in using something like Toppix?
Finally a week after UMX I can lie down on my left side. Still some pain getting out of bed but much better overall. I suppose recovery from surgery is better than chemo in that everyday you get better with no next infusion to worry about.
Interestingly my left brow has started coming back in, even though not all of the original has fallen out. Eyelashes though have seen no progress. Did people lose eyebrows or eyelashes from AC? I wonder if I'll get to keep mine during it.
When I'm outside and my scalp gets cold, I get this weird pins and needles feeling on the back of my scalp. It's as if my pores are contracting and running into the stubbles now coming out. Also Iheard some hair can become ingrown as they come back out. I hope not!
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You ladies who are growing hair on Taxol, that's amazing to me. It didn't finish the job on my chicken pluck head, but it did seal the deal on my eye lashes and nose hair. And there's certainly no new growth anywhere. Winterish here (sort of… high of 61 today), so beanies are no problem. It's actually been helpful at work. I work in a government building that has no heat right now. Old converted concrete barracks that holds the cold so my office is about 58 degrees. I'll skip my smarta** remarks about government efficiencies.
Sue, I'd love to see the new eyebrows if you're up for sharing!
Beeline, I'm so so sorry you're experiencing Taxol pain. Breaks my heart! I hope they've been generous with the pain meds. Oxycodone 10mg allowed me to sleep after my last infusion. How many do you have left?
Fairchild, I feel the same about going topless. There was a woman at a Christmas church event with no hair, and she was all smiles and seemed to be full of joy with her husband. I was envious in my beanie that resembled a Russian Snow Queen. I prefer no top, but I do it to avoid making other people uncomfortable (including my boys when in public). And sorry HR is being difficult. Most people have no idea what it's like. My immediate supervisor will ask me how I'm doing and then dash for the door if I answer truthfully.
Brink, happy to hear that you are healing from your UMX. My lashes didn't fall out until Taxol, and I still have about 50% of my brows. Hoping that's the end of the loss, but who knows.
To all of you who have commented on my mets revelation, thank you. I've yet to break down, but I also haven't told my mother. I think they will coincide. I had a bone scan yesterday and hope to hear something Monday; same day as the tumor board. I'm assuming (with every hopeful bone in my body) that any other spots have been killed by chemo. I have my initial consult with RO on the 10th. And my PCP said the latest echo was normal, so back to training. Let's get this party started! Of course, every little back pain scares the beJesus out of me, but I think I'll get used to that. NED = now enjoy denial. Although, I will have to get more serious about lifestyle. For a few days, I craved a drink and I didn't tell myself no. Going forward, alcohol and sugar, two of my favorite things, will be cut significantly. Ugh.
Off to bed. My little one is graduating from boot camp tomorrow. One week away with the Naval Sea Cadet Corps. Can't wait!!!
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Fairchild - Philosophiclaly, I agree with you about not covering up what isn’t perfect. But it’s cold even in my office! I just seem to lose so much heat through my head. I don’t think I’m going to be able to tolerate not having something on my head until warmer weather rolls around. And I have word finding issues, too. Sometimes a word that is close but not right just interferes, too.
Brink - I’m glad you are starting to heal from the UMX. It really should get better every day. As for hair, I’d heard that hair follicles can get blocked (which I guess would lead to ingrown hairs). I’ve not had a problems with pins and needles sensations, but every time I bathe, I take a baby washcloth (because it’s softer) and scrub my head with the shampoo. I figure that will slough off any still-shedding skin.
Piksie - Brr! Your office sounds even colder than mine. My husband has encouraged me to go out bald and if we get a warm day we might. I think of you often, and about you trying to find a way to tell your mom. I’m cutting waaaaay back on alcohol and sugar, too, which are also favorites of mine. Please let us know what you hear on Monday - I’ll be sending good thoughts your way. And congrats to your boot camp graduate
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We September sisters could write a thesis on the relative advantages of summer and winter for baldness. It's been so hot here that I've been going topless almost full time, just packing a little bamboo cap in case aircon is too cold. It is sooo liberating, but people do look, and that makes it also a bit emotionally tiring.
Here is a demonstration of my lack of selfie skills, so I can show you the eyebrows. This is V.1 - they get a touch up in a few weeks. I am a little bit excited. I did check with my MO whether there were any "timing considerations" I should allow for, and she said it was fine. By the way, it does hurt a bit. This was taken late evening, so my Taxol puffy bags under the eyes are shown to full advantage.
Also sharing my 5yo grand daughter's 'lego nanna'.
Piksie, I really feel for you breaking hard news to your Mum. I hope you can at least do it in person so she can see you are just you, and you can have a hug. She will be feeling so protective of you, I'm sure. I wonder if naval cadets come back from camp as smelly as I remember boy scouts doing. Horrible having a waiting weekend as well! We have had to be so grown up through all this!! (You've done very well at it, I must say).
Wanderweg and Fairchild, I'm having word issues and slow-brain as well. Very frustrating! I'm counting on improvement or I don't think I can continue doing the work I do. And Fairchild, you may be reassured by my (not so) flowing locks. The hairs are growing, but very white and fine. I'm due in the office on Monday as well, and agonizing over what to wear or not, on my head.
Beeline I do hope the pain settles. I have some, and it's interfering with my sleep, but nothing like what you're having.
Couple of nice things - one of the young ministers and his wife brought a huge batch of chicken curry for us this morning, and stayed to chat and pray. So nice of them. I haven't been getting to church as I had a very persistent cough for many weeks, and I was nervous about infection, but that was a bit lonely and isolating. And my husband and I went to the movies like normal people this evening. Just lovely.
It's now 1am, so I'll have another try at sleeping....
Good night and sweet dreams, all.
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I so appreciate everyone's support! I think it's funny that my unadorned head is NEVER cold! I've always had a tendency to be hot rather than cold, which I blamed on my excess pounds. But my head has remarkably little fat on it, so that isn't the reason it's hot all the time- Maybe now it's the Femara.
Sue from Sydney, thanks for the visual on hair growth! You have a bit more than I do…at least, I don't think mine would show up at all in a picture. It is very much that white/blond color though. The funny thing is that it's 2 lengths…about 2 mm in most places, with much longer hairs scattered throughout. I'm assuming the longer ones are the hairs that never fell out. Anyway, I have to say you are rocking a really good look there! I wish I had me some of those eyebrows, and I love your grand daughter's construction skills!
Piksie, I'm so sorry you are going through the weekend wait. I hope your boys give you plenty of distraction, although I know it doesn't make the situation go away. I'm praying that this spot is just as dead as a door-nail.
You and Sue reminded me of how smelly my son was when he was a boy. Thank God they civilize as they get older! He is 27 now, and working as an attorney in DC (and the government shut-down will affect him if it goes on…). There was nary a whiff from him when he was home at Christmas!
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Sue - Love the Lego nana! And the eyebrows look great, although I am too pain averse for that. I'm glad you got the visit from the minister and his wife (and the curry!) and got to get out with your husband. Those things make a difference.
Fairchild - Oh my god, there's nothing quite like the funk of a young adolescent boy! Mine was the house always filled with my son's friends, and sometimes it would get pretty ripe!
My husband and I went for a long walk on the greenway today and I decided to go bald. There were a few times that the wind was almost too cold for my bare head, but it felt empowering not to cover up. People glanced at me, but just smiled and said hello. My peach fuzz has darkened, so now I can actually see that hair is coming in.
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Thanks everyone for the encouragement on starting my new job topless (love putting it that way though sounds like something else entirely!) and for all the pictures! I am definitely leaning in that direction. I’ve also booked myself in for eyebrows, Sue! I think I just won’t bother to tell my onc who I only see once every 3 weeks anyway and actually have only seen his young registrars since AC finished.
Piksie, the waiting is just the worst. I am sending all the peace and comfort I have to get you through it. And yes to all who cited alcohol and sugar as favourite things... sigh. I eat quite well and am running again but have always had a sweet tooth and quite like a drink. Still struggling over how much to cut back / where that happy medium is.
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well that’s exciting, beeline. Should give you a real lift. Are your blood counts pretty good? Mine have been, which made me more comfortable with it
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Sue - I've always been nervous about doing eyebrow tattoo, worrying about what if they make a mistake. But your eyebrows look great! And the LEGO nana is hilarious.
Found this link to the BC forum I attended last Oct at Dana farber. They talked about patient experiences, after treatment psychological health, recent research etc. Hope it's helpful to everyone.
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Ladies – want to hear something funny? I've been single for eight years and have dabbled in online dating a few times over the years. I recently created a profile on one and was very honest about my current position, stating that I'm window shopping while going through chemo. Surprisingly, there has been a significant response. I think it's weird…. So I checked it Friday and had a very nice message from a man who gave enough information that I could look him up online, and he's legit. We've hit it off well enough online that I'm going on a blind date today! Bald! (He's also bald; it's been the subject of many jokes.) This feels really weird!
As for the boys, my little one graduated from Navy League Cadet Corps boot camp yesterday. Comparable to to the Scouts, but run by the Navy in a military fashion. He's so excited about it! As for smells, we've made a rule that no one takes shoes off in the car. If they do, my car smells like feet for days.
Wanderweg, beautiful! How nice to have a hairline.
Sue, love the eyebrows! Beeline, can't wait to see yours. I'm afraid to do anything permanent. What if I don't like the shape? (I'm sure yours will be lovely!)
Chemo brain incident: A colleague named Greg had just been in my office when I wrote back to Bill the first time, and I called him Greg. What a trooper to let me off the hook!!!
Have a great day!
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Piksie - how fantastic and brave of you! I hope he’s nice and it’s low stress and fun. Funny that you already have hairstyles in common 😀 Love the pic of you and your son. Congrats to him! Though I must admit all this talk about smells makes me glad I have girls!
Sue and everyone on the eyebrow front — it is not the kind of thing I would normally do AT ALL, but when I read your post I knew it would be the thing that makes me feel better about this next stage and going bald! I hope it doesn’t go horribly wrong.Your pic makes me think they’ll be great! Safety-wise, I have blood work earlier in the week and will pull the plug if my counts come back iffy.
Good luck to everyone going back to work this week. I have a reprieve of one more. T#5 this afternoon, and then tomorrow morning we get on an early ferry to spend 4 days at the top of the South Island. My daughters have never been on the ferry and are very excited I’m hoping the weather holds and I have the energy to do fun stuff — but in any case we’ve rented a tiny place near the beach so I can rest and send my husband off with the kids if need be.
Take care everyone xx
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Piksie! How wonderful! I did a fair amount of online dating myself during the 8 years I was single after my divorce but chemo adds a whole new wrinkle. I applaud you putting yourself out there and hope you have a great time today.
beeline - I really am longing for a trip to the beach, and am glad to hear you're getting away. We have a trip planned in Late February and I'm counting the days!
I ran into the daughter (age 10) of a friend today while I was wearing a scarf. She hugged me and said, "I didn't recognize you!" I said, "I know, right - because of no hair?" It struck me that at first I was so self-conscious about looking like a cancer patient and now it's just who I am at the moment and even seems funny at times.
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Well.... it was a little awkward.... My nose was running. I will never again take nose hair for granted! Not sure there will be a second date, but it was nice.
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Piksie - Ah well, first dates are often awkward under the best of circumstances. Glad it was nice enough. And just today I was wiping my nose for the nine millionth time and I said to my husband, “I never thought I’d be saying I miss nose hair!”
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mmmm. Who knew how much we loved our nose hairs. Piksie if he does call back, maybe he’s a keeper:-
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Hi ladies, just checking in. I have been busy since coming home from New Mexico, now my dad is here visiting until Wednesday. While in Santa Fe, they had a snow storm. My husband and I decided to leave for home anyway. Well, 54 miles driving in a snow storm later, we were stuck on the road right in front of a major freeway entrance, so we had to turn back and booked another room at the same hotel. We spent 3 hours driving a total of 108 miles and on top of that putting our and kids lives in danger, that is something we will never do again!
Tigerlily - congrats on ringing the bell! It’s a good feeling that you know you are done!
Wanderweg - my hair is growing now. My eye brows are a bit thinner than before but they are still here. I find myself wearing wig or beanie less at home.
Piksie - Please do keep us inform when you find out tomorrow.
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Piksie - No matter the outcome, glad to hear you could go out!
JNKK - That sounds dangerous! I suppose all the more you’d avoid road trips now... These days I do find myself more careful when it comes to crossing the street etc. I catch myself thinking “if I get hit by a car, people would be like, she went through all this chemo, but oh well.”
After reading all the boy smell comments, I became so curious I asked my sister who always had nothing but praise for her 2 boys. Turns out yup, same for them too. In fact one of them asked for deodorant for Christmas! When she mentioned this to a friend, her friend’s son had also asked for the same thing! Wow, this is like a whole new world for me... I’m thankful for my daughter too.
Being worried about ingrown hair, I asked DH to take a closeup picture of my scalp. We did find some hair that came out as small rings. Knowing I’ll lose my hair again during AC this isn’t as urgent an issue for me, but I’ll definitely take time to scrub off dead skin during shower. Thanks wanderweg!
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Wanderweg - I have been taking biotin forever now and now taking collagen. I think all of these are helping with hair growing.
Sending my love and good thoughts to all of you ladies. I am thinking of you.
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Good morning - Piksie, I think it is fantastic that you went on the date no matter the outcome. I did online dating off and on for about 10 years before I met my husband. He likes to complain about how awful it was during his year or less on it. I keep silent, but it was always hard and awkward under the best of circumstances. I sometimes recall the flaming chicken fingers, being stood up, red underwear guy, coffee filter guy, and some of the other stories I lived to tell and now I can laugh. I hope you keep at it, you are my hero in so many ways!
JNKK - glad you're safe. Sue - your eyebrows look FANTASTIC. And all who posted, I can see hair! Which is the big thing.
I left the house without toppik yesterday. I am still thin if you look up top or catch in the light, but overall am very pleased. Still cannot wear a hat without it being a disaster the rest of the day. It was 15 degrees this morning so that stunk. Yet, that is my complaint right now and I know it is a small one.
Day 4 post rads. Energy is ok, brain fog comes and goes. My feet and knees ache. Awaiting a shipment of "joint juice" via Amazon that some say helps. Fingers crossed.
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JNKK - Glad to see you back, although the ride home in the snow sounds scary. I used biotin all through my chemo (with my MO's blessing), but I'll look into collagen.
Brink - In spite of the ripeness of boys, I still had a blast raising them. I think there's a little less drama, so there are tradeoffs.
Tigerlily - Good grief, your hair looks great! And oh my gosh, I have a set of those online dating stories, too. I met some great guys, but then there was the one who argued with me through dinner then ordered himself some dessert to go, the one who told one story after another about evil women, the one who asked resentfully if I needed "beer goggles" to be with him when I mentioned having a glass of wine with dinner, the one who wanted to spend every single day with me right off the bat, and the one who showed up at the fancy restaurant he'd chosen in shorts and sneakers. And then the date where the minute it ended I texted my sister, "Fuck, fuck, fuck. I'm NEVER dating again!" Good times!
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Wanderweg, you are making me laugh so hard! I just remembered the guy who wore five fingers "shoes" to the fancy restaurant he selected. They were the only shoes he said we wore, which made no sense as we live in MASSACHUSETTS! I wish I'd had a group like this one when I was online dating!
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Tigerlily - There probably needs to be a site for women involved in online dating, just to share the funny awful stories! Thank goodness there were some great dates to balance out the bad. (My very best wasn't from a dating site, but it was still on-line: back when I was blogging, a fellow blogger - who I never met in person - set me up with a man she knew. He and I "met" through email and then he took me to Puerto Rico for 5 days.)
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wanderweg - I agree. I must say boys are more straightforward and easier to understand too. I feel my 4 yo daughter is already too complicated for my husband to understand!
Tigerlily318 - You look wonderful! Do you feel the cold-cap helped at all?
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I think my worst/funniest story is the guy who showed up for happy hour TOTALLY stoned. Could hardly speak. And the one who was visibly angry that I wasn't willing to plan our future together during our first (and only) date.
Wanderweg, hope you enjoyed the trip to Puerto Rico! I think I'd be up for that at the moment.... someone just take me away from all this nonsense!
So my scan wasn't awesome. It identified "increased uptake in T6 vertebral body" which is the one identified in the chest Xray. Also "focal uptake in left posterior ninth rib", "focal activity is noted in the spinous process of C3 vertebral body", and "minimal activity seen left posterior seventh rib".
I spoke to Onc nurse yesterday and I have an appointment in two hours to get more details. Looks like we're adding Ibrance to my treatment plan, and possibly additional radiation on any live spots. If a biopsy is done, it will be a rib. TBD. Ibrance is oral chemotherapy that is taken daily for three weeks, then one week off. I believe I'll take it until side effects are significant or it becomes ineffective. (the nurse's mother has been taking it for three years.) I think bi-weekly blood draws and quarterly scans are my new norm.
Tigerlily, I LOVE your hair! I have had that haircut in the past and loved it, so at the moment, my goal is pixie and that's where it will stay. Ibrance comes with hair thinning, so long locks are probably off the table. That's IF my hair grows back. Fuck cancer!!!
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Wow Piksie. That’s a crock of shit that you don’t need. Well done with getting onto the management plan, but I’m sorry you have to factor in extra complications. Have you been given any advice about maintaining your bone strength, if that may be affected?
It’s hard adjusting to the feeling of lack of control in our lives, though that was only ever an illusion anyway. Praying a day of blessings for you today (maybe an invitation to Puerto Rico).
Lo
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Well, shit, Piksie. I hate that you got those results. Seems like I've seen the Ibrance commercial a lot lately - I hope it does its job with you. New normals can really suck.
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I’m sorry Piksie for the scan result. Please let us know how your appointment went, when you can. I’ve been thinking about you all day.
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Hi girls. I had a good meeting with MO. We are going forward assuming bone mets without biopsy. The biopsy would be invasive and painful, and would likely provide no new information and wouldn't change the treatment course even if it did. I will continue with radiation; consult and sim planning on Thursday. I'm back on Zoladex and Arimidex as of 1/16, and will add Ibrance and Zometa (for bone strength) after radiation.
I got more info on the echo I did after the ER visit. Ejection Fraction on baseline echo in Sept was 73. Last week's echo was 74. Normal is 55-75, so all good. My elevated Troponin level of 29 is unexplained, so I have a referral to a cardio-oncologist. He seemed excited about that. "I know someone who's going to LOVE you!"
I got the green light to do as much physical activity as I can stand. That will vary through radiation, and I don't know yet how I'll react to Ibrance/Zometa. But I was really afraid he'd tell me to take it easy, and the only thing I have to give up at the moment is grapefruit!
I left there with enough information to have a good conversation with Mom, so I swung by her house and was able to spend about two hours with her before getting the boys. So although it could definitely be better… today wasn't terrible.
-Sheri
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Hi Piksie - I do believe your ER visit was meant to be so you can identify the spots as soon as possible to get the best treatment to kill them off!!! I know someone with bone mets who went into NED after only a few months of treatment! Good to hear you had a good talk with your mom.
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