Starting chemo April 2023
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Heya all! Hope everyone is doing okay. I’m still alright although had some back pain today. I took Naproxen. No clue what it might be related to. And my hair is shedding a LOT. I am contemplating liberation of it just to be done with the shedding. It is so cool that my youngest kid has gotten to do a lot of work on the presidential visit. She helped set up the curtains where he will give speeches and got to see his hotel room today. It is something that she will remember forever. She is going to the airport to see him, but the rest of us are not this time. Just made some banana bread today and a no noodle zucchini lasagna. My kids are skeptical lol. I have been eating lots lately just to cover up the nasty taste is my mouth so that is a serious pitfall. So trying to make dinner a little healthier.
Anyways. I hope everyone is well ♥️
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What beautiful photos Bird! Thanks for sharing. The wildflowers are such a visual treat and you look fantastic! Enjoy your shopping excursion! Picking your own groceries sounds like heaven!
This is day 7 post chemo for me. I'm exhausted and a bit rough around the edges but better than I was over the weekend. I'm doing laundry and I feel like such an old person. Peripheral neuropathy continues so I make sure to bring my watch or phone to the basement with me in case I have any issues. It seems like just yesterday that I could take a basket of laundry from the basement to the second floor in one trip. Now I take a moment to rest half way up from the basement and then wait a bit before taking things up to the bedroom. The metallic taste is an annoyance but for sure easier to deal with than many of the other sides we've had. Floating frozen fruit in the water bottle helps and so do hard candies like lemon drops.
I was taking a nap yesterday evening and the vet called. At the same time, a well meaning neighbor who has been really kind knocked on my door. The dogs went ballistic and I couldn't hear the vet tech. When I opened the door in hopes of quieting my dogs, my neighbor let her dog run in and followed along behind her. She wasn't masked nor was I which had me a bit worried. Here's hoping Nulasta is working! I wasn't prepared for the vet phone call nor the visit and was feeling a bit overwhelmed. I have to find a polite way to tell people how much a text message would be appreciated before stopping by.
I think the vet tech said that they would get back to me later in the week but I really couldn't hear because of the turmoil in the house. I asked if a tech could stop by daily to check his vitals and attend to dressing changes. We'll see what they come back with. I'm hopeful that they can help.
Okay - enough procrastinating. Time to bring the towels upstairs!
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Good afternoon from the infusion center!
Bird- a nurse here told me today that I can take 2 Claritin for a week, the first week after the shot only. Really glad you aren’t having bad pain. I think my bone pain might be also due to one of the TCPH drugs- after doing some reading. Thanks for sharing the recipe & you look gorgeous! Your hair is still looking great! May I ask (or private message me) were you able to spare any part of your nipple with your surgery? This is a big part of my surgery so would appreciate any info/insights. Don’t want to be too nosey either- tho I think we are all beyond that!
Dogmom/Mouse: hope you all are doing well too! Day by day we are making progress & getting there.
Today should be my last day of TCHP. In 3 weeks, AC, 4 rounds. Had a bit of a glitch with the Dignicap machine so had to switch, leading to additional cooling time but not a big deal. With the cold capping, it’s 8:00-5:00 here anyway, but oddly goes fast. Hubby was here then my daughter came & is still here.
Cat
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Cat: I forgot that you had your infusion already! Congratulations on reaching the halfway point and the end of the TCHP! Hurrah hurrah! So, I didn’t keep any part of my nipple or areola. We had discussed it and the DCIS which was growing so fast (ki-67 was 60 percent and is harder to completely remove in surgery than an actual tumor) was growing right towards the nipple. My breast surgeon felt that it was best for the surgical margins to take the entire thing. He ended up being right because the surgery that took place 2 weeks after the MRI revealed that it was growing into the nipple and that the IDC tumor was buried in the same area. I have a recreated nipple there and will have an areola tattoo in phase 2 of my reconstruction. It doesn’t really bother me as I would likely not have had much sensation there anyways and cosmetically it looks fine. I am glad that a nurse has confirmed that my overdose on Claritin for a few days is okay 🤣. I kinda went rogue there.
NJ: Gosh I feel ya. Unscripted drop ins are actually the worst. I don’t like them when I am not sick. I am such an introvert that I really need to know what is going on and prepare myself to socialize, if that makes sense. I hope that the vet tech is saying that shouldn’t be an issue. That will remove a big stressor for you. And I feel ya on the stairs. Our bedroom is on the third floor so I have to do stairs to do anything. But the first few days after EC I was like the slowest mover on the stairs ever. I am awake all day again now though and doing longer walks so I am hopefully coming out the other end of my EC treatment.
Mouse: Hoping work is going okay and you are feeling well.
Okay. I’m gonna push off the sofa and walk the dog. I’ve been sleeping late, until almost 10 today. I need to take my daughter to the dentist tomorrow at 8:45 so that will be early for me. Ha. I hope y’all have a great day! I am hoping this warm and sunny thing lasts. Thinking of taking the kids to the zoo tomorrow even. I hate that summer is almost over (my kids go back in early August) and we haven’t done much of anything. Also arranging my husband and daughter’s trip to Vienna in early August to tend to her retainer. I am SO jealous but don’t want to fly a week after my EC treatment. I am planning to go to Vienna solo in early December to meet up with my find for our birthdays and go to the markets so am clinging to that.
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Good morning! It feels so strange not to be going to chemo today.
Bird: I seem to miss posts sometimes. I'm not sure why. I scan back several posts each day to make sure but then, boom! Another post I've missed. I'm so glad that your daughter was able to participate in the presidential visit and that she enjoyed it. It's also awesome that she did it solo. It's a statement about her confidence and coolness. 🕶️ When did they start summer break? Seems so unfair they don't have August off from school! Sorry that you aren't going to Vienna and glad that you have the December trip to look forward to. Mutual birthday celebrations and Christmas markets sound way more fun than orthodontist visits! You have a 29th anniversary trip coming up soon too! More to look forward to!
I slept through the night for the first time in a long time. What a treat! I noticed more shedding than usual yesterday and today. Each time I look down, there's hair on my tee shirt and I can't blame the dogs.
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Not sure if we mentioned it here. Bird and I talked about it when we last chatted. One of the side effects we noticed was base of skull soreness. Just adding it so that nobody goes into a panic if they notice it.
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Good morning! Heading off early to an ortho appointment to fix a broken attachment. So much fun and likely to cost a trillion dollars as the place here is doing us a favor since orthodontics were placed and paid for in Austria. All 3 kids needed braces and all 3 did orthodontics in at least 2 countries. So much fun.
NJ: The Nordics are different from the other parts of Europe that I have lived. Summer break usually starts here beginning of June and runs through first week or so of August. In Vienna and Brussels, the calendar was late August to late June. I think August is viewed as definitely the end of summer and June as prime summer with the best weather. I am pleasantly surprised that Cas actually loves work more than school and is thriving at the embassy job. She did an internship with preschoolers this last spring and loved that also. I’m the opposite. Love school, not so sure about work 🤣🤣.
And yay for good sleep! That is an awesome thing for sure. My shedding is out of control seriously. I’ve taken to wearing hats when cooking and handling food.Cat: Hoping you aren’t feeling too rough And that you are celebrating the halfway point when you can do so♥️
Taking down all of the stuff from the presidential visit today and moving on. Everyone breathing a sigh of relief today for sure. Visits are a huge thing and we have had two this summer.
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Bird: I hope the orthodontist visit is uneventful and inexpensive!
I can't remember if we moved our live chats to Mondays or if we're staying with Friday. Either is fine for me. I have a sinus CT this Monday so will need to leave early if we switch to Monday. I think I have a mid cycle blood draw to check lipase and amylase too but I haven't scheduled that. I'll have to remember to call this morning. Remembering. It's a thing.
I haven't been keeping up with Swedish Death Cleaning. Going to see if I can fill the bin before the truck comes through later this morning. I'm thinking targeted purging starting with old flip flops because I replaced all of them, unpopular/old dog toys, a tote in the garage marked yard sale and gift wrap that I'll never use because gift bags were invented. On your mark! Get set! Go! 🤣
Hope to chat with you all later.
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Hi. Just popping on to say I can’t get on tonight I’m out and about downtown. Exciting. Ha.
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Shall we switch to Monday and a little earlier in the day? Perhaps 10 or 11 am eastern? Not sure what the nap schedules are.
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Monday at 10 or so EST suits me fine. It is before the dinner and family rush. If that works with folks nap schedules of course.
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Good evening gals!
Bird: thanks so much for the detailed sharing on your nipple. This really helps me a lot & I am very glad you are pleased with the results. I’ve seen photos & I think the results look really good. You are right about not having much (if any) sensation there anyway. I see a plastic surgeon in ATL on Monday at 9:30 am (I can do a call at the 12:00 pm time slot but not before then) then another plastic surgeon at MDA on Wednesday.
Unscripted Visits: gals, you ARE my people! I’m 💯there with you on ALL of that! I, too, am introverted & don’t like a drop-in on the best of days! So today I “crashed” & have been feeling pretty puny, much as you described Dogmom- I’m winded going up my stairs today. I had pressure washers/window washers (same guys) come today as my daughter was also here. I got a call that flowers were coming in 30 minutes (so nice) but that took energy as the guys trucks had my driveway all blocked so I wanted to meet the delivery guy if needed. The flowers finally came 2 hours later. Lovely, but wore me out! Meanwhile, 2 friends surprised me & wanted to dropoff food as well. Same scenario with the trucks. My daughter rolled a cooler with ice down to my mailbox. I thanked them profusely & apologized for not being up for a visit. I know these gals really do understand though- one had breast cancer last year & the other, her mom & sister. I’m worn out!
Dogmom: did your fur baby have his surgery? Is it scheduled? I’m afraid to lose my typing if I move around too much on my phone & I just can’t get out of bed right now to find more appropriate devices for typing. In fact, I’m going to post what I’ve written so far!
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I don’t have any skull pain. Interestingly, I thought I was getting Nulusta but I’m actually getting a different one. “Thought” (ha ha) I’d remember the name but that’s just ridiculous! Total chemo brain happening here.
Bird: I missed as well the post about your daughter & the Presidential visit. That’s SO awesome & cool & a lifetime experience! Love your girl’s confidence! Hope all goes well with the ortho. I loved the Xmas market in Copenhagen- went a few years ago & loved it! Had a fabulous time in London before that. I’m hoping to go to Europe as soon as I can. My daughter & I were going to go this summer but we’ll get there!Dogmom: you are cracking me up with the bin-filling! I’m also trying to micro purge as well. Threw some totally empty paint pails in the bin- so old didn’t even have paint in them!
Mouse: hope you are feeling well & that your work is also going well.
CONFERENCE CALL:Tomorrow Friday 7/14: I’m available all day
Monday 7/17: I’m available from 12:00 pm on
Sending hugs
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Cat: I think you might have skipped a day there as we just did Friday 🤣🤣. I sent y’all a pic of the presidential visit. He was lovely and spent a lot of time chatting and Cas got his autograph (on a fruit roll up card with an eagle lol). Cas also made the news here as they showed a video of the meet and greet.
Monday call: I know NJ has some appointments, as do you. I can go as late as 9 my time. So, how is 2 pm EST? That might maximize the chances of having most of us there? I don’t know what time NJ’s CT is though and that is always an event.
Alternatively, Tuesday:I am free all day and happy to call anytime. My preference is for 10 or 11 EST if that is free. But can do it anytime until 2 pm EST.
I continue to have some intermittent skin stuff, right now I have what I think are mosquito bites in various areas that are bright red. I’ve photographed them and gotten info from my nurse. I am treating them with neosporin and watching for any signs of pain or infection. They look better today. Everything is open in the house and no screens so I am fair but game apparently.
Otherwise, I am amazed by how well I feel right now. I have a good amount of energy. Am sleeping well. I met Chris and a colleague downtown yesterday for coffee, then a drink and then Mexican food. We walked to and from the metro and all around and I wasn’t even tired. Crazy. And hair is regrowing a bit on my legs and other bits. Which is weird but okay. So we are planning to go away for a couple of nights this next weekend to take advantage of my current good health. Hopefully it lasts. As for my hair, the really heavy shedding has stopped for the moment. I am definitely balding all along my crown. But it still looks pretty normal with my big scarf headbands and since I love that look, I guess I will wait and see what happens. I don’t have pain, itching or sensitivity either. I’m on day 11 post infusion and day 12 is normally when the hair would fall out. So, we will see.
On another note, I really want to see the Barbie movie 🤣🤣.
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NJ: I hope you got some purging done and some answers on your pup situation! So, I will share that I absolutely positively hate wrapping gifts. Some folks love it, others like me think it is a form of mild torture. Santa went all eco here a few years ago and gives gifts in reusable cloth bags. It’s the best thing ever as it absolves me from all gift wrapping nonsense🤣. And then we just use the bags each year.
I bought a lovely yellow orchid yesterday. And here is a pic of the hot air balloons that we saw over the water on our evening walk. So cool! Have an amazing weekend ♥️♥️
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Good morning!
Bird: Here's a link to the Ikea $6 tulle curtains I mentioned. I got them for my canopy bed as a summer alternative and used them this year to cover my basement windows which don't have screens. I needed to vent the radon out of my basement. I've had them for at least 15 years. They're still in good shape. I wash them in the washing machine in a sweater bag. They still look new. Have to love Ikea!
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I hit enter before I was finished. Ooops!
Bird: Your flowers are lovely! The hot air balloons are beautiful too! We have a balloon festival in my town each summer. I went when I first moved here but the parking and traffic were crazy! Depending on the wind direction, I can watch from my deck. The airport is about 3 miles from here.
Cat: Apologies if you were on the call on Friday. I thought we may have switched it to Monday at noon but couldn't remember.
Mouse: I hope all is going well and that working isn't exhausting you. Sending good vibes your way!
Weekly chat: I have some appointments this Monday afternoon but no worries! I seem to manage to catch up with both of you. Please don't switch this week on my account. Mondays at 10 would be great. Not that I have anything going on the other 6 days of the week aside from Epsom salt baths and lots of naps.
Swedish Death Cleaning: I didn't manage to bring the wrapping paper up from the basement but I did fill the bin. Old flip flops and dog toys accounted for a couple of bags. You know you have too much of something when you have a specialized container for it. I'm thinking the wrapping paper storage container needs to go out with the recycling.
Sides: I had neck pain yesterday that was distracting enough that I called the doctor. Got a call back from the nurse who suggested Tylenol. And then last night I had back, arm and leg pain. I'm thinking 5 days isn't long enough for Claritin.
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Good morning!
I’m feeling much better this am & am up & about with steroid infused energy!Bird: well dang, I just went through all the photos since 7/4 and did not see Cas. Was the photo prior to then? I’m sure it’s my chemo brain, now in full tilt! (I “made” a cup of N’espresso this am without putting my cup under the device. Worse still, it was my second cup & my steroid pills were getting hit (fortunately in the container & are fine) by the coffee! I miss my brain.
GROUP CHAT: I can only chat between 12:00 pm-3:00 pm on Monday. I leave for MDAnderson & the airport around 3:00 pm on Monday. I’ll then be at MDA through Wed, then leave Friday 7/21 for Highlands NC.
Speaking of 7/21…. That’s the day “Barbie” opens. I think it’ll be fun to see as well. My daughter thinks it’s very ironic that it opens on my bday, I’m married to “Ken”, and of course there’s “PINK”! Top of mind for all of us!
Hope everyone has a wonderful Saturday.
Bird, I’m so glad & encouraged that you are feeling so well! Oh & I do think taking the Claritin (doing 2 first week only per the nurse’s ok) is helping w the leg pain. Much better. I also think the Metamucil is helping me a lot w other Sides.Cat
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meant to specify taking the Claritin at night seems to be helping more
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Cat - click on the letter rather than the bell icon. The letter should have private messages which is where the photos were posted.
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Cat: Yep, exactly as NJ says. I sent it as a private message. Just to avoid any possible weird political whatever from posting publicly. I am SO glad you are feeling better as well and that the Claritin and Metamucil are helping. Your chemo is so rough and you are rocking through it. Totally smiling at your Barbie sentiments. And your Nespresso misstep. I’m sorry my friend!
NJ: How cool to have a balloon festival in your city. I am obsessed with the balloon rides in Cappadocia, Turkey that you always see pictures of. I want to do that so badly. My husband is less interested. I am more interested in some slightly more adventurous travel lately, he, not so much. I mean, he will go if I plan it, but not his cup of tea. It’s fine. It might be something I do with a friend. Thanks for the curtain share! I’ll have to take a look at the IKEA to see if I can find some curtains for our balconies.
Hi Mouse! I hope you are continuing to feel well and that your return to work is going well. Do you think round 1 and 2 of AC had similar side effects for you?We had a really great night. We went to a Lebanese restaurant that was SO good! And then sat outside in the main cathedral square where a bunch of summer terraces have popped up and had a drink. The weather is perfect at the moment, but it is supposed to start raining tonight. Today, just some errands and a long walk.
Do y’all get random runny noses? It’s so annoying. I have most pockets stuffed with tissue because my nose will just randomly run.
Monday call: Ha. We might just skip this week as it sounds busy for most!
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Hi gals,
First, thanks for the reminder about the private messages and where to see them. I am obviously not good about checking those after getting through my typing/keyboard challenges OR keeping my phone from total tub submersion! I'll venture into the messages AFTER I'm done typing LOL.
So sounds like the plan is we will skip a call this week.
Bird: so glad that you are enjoying some outings and good weather. I have been up and down with this last treatment but the pattern is pretty consistent as before. Steroid induced activity then I pretty much crash at night and feel like a bowl of Jello. I'm also up around 3:00 am-5:00 am, feel tired but also jacked up. You all get it. It's a weird feeling but today is the last day (this round) oral steroids so hopefully my sleep will improve next day or so.
My nose is running CONSTANTLY! I have tissues literally everywhere!
NJ and Mouse: how are you each feeling?
Hope everyone has a good Sunday!
Cat
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Cat: Have a great week. I hope you feel lots better and keep us updated on what the docs say if you have a minute. Enjoy that steroid activity! They don’t give as many steroids here I don’t think. I do get them with my chemo infusions, but I am not given them to take before or after treatment. Anyways. I do suspect there is room for steroid dose reduction in your chemo regimen if the sleeplessness is bothersome and you ask the nurse.
I’ve been tired today. The walk has ended up essentially being lounge on the sofa. 🤣
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Good morning!
Weird night last night. The dogs woke me at 2am because there was a critter outside. I was thankful they didn't bark. I couldn't sleep after that and then phones and televisions started sounding tornado alerts around 4 am and that kept going for a while. It's going to be a sleepy Sunday.
Bird: Hey! You walked to the sofa. Give yourself credit!
Cat: Sorry that you're feeling like jello. You aren't alone. The last cycle of the first round of chemo was rough. I think our bodies just start screaming ENOUGH! as we get to the end of these chemo phases. I'll text in a bit and try to catch up with you on the phone today.
Mouse: Thinking of you and hoping you are feeling good. Still in awe of you going back to work!
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NJ: That sounds like a wild night indeed! I hope you got plenty of rest and that you are feeling well.
Boring day here for me. Quiet, that sounds better. All good really.
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Hello all! Still quiet here. Just sort of treading water right now. Hopefully everyone else is having a quiet week as well. Yesterday I was feeling really a bit down. I am just tired of being in a holding pattern. Plus, my dad who has has Alzheimer’s has worsened considerably. My mom is his caregiver and they both need a lot more help. We need to find a facility for him. I can’t leave right now to help and it is such a guilt inducing situation. My brother is in the states, but doesn’t seem interested in going there to help.
NJ: Hoping you got some answers on the sinus stuff. How is Bray doing? Any news from the tech? I am hoping you are also feeling well this week and are getting stuff done:)
Cat: I hope you are getting lots of good information in your doctor appointments. Will they do any imaging to see what your tumors are doing? I also hope you can save the nipple. It sounds like MD Anderson is the place to do so.Hey Mouse! I hope you are doing week and feeling okay. I think you have another treatment this week? The 2 week schedule makes it go by fast for sure. At least to other people.
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Good morning ladies!
Bird: It does feel somewhat stalled not going for chemo each week. I think we were busy dealing with the general exhaustion for the first week and now we have another week to wait before we make more progress. I'm sorry about your mom's situation and that you aren't in a position to help. Does your mom have a patient advocate and/or a social worker helping her find a place for your father? I'm around this morning if you want to vent.
Cat and Mouse: I hope all is going well. Keep us posted!
I called in to my care team last Friday because I had neck pain that started on Thursday. I noticed it mostly when I coughed and when I turned my head. It's on the same side as my port - left side - just above where the second incision was from the port surgery. A couple of hours after calling in, I got a call back from the nurse who suggested that perhaps I slept in an awkward position. She told me to take Tylenol. I said I was concerned that taking something might mask a fever but she told me not to worry about it. On Monday I went for the sinus CT scan and then over to the infusion center for interim blood work. My port wasn't being agreeable for the blood draw so the nurse had me cough a bunch and move my arms around. I mentioned the neck issue and that coughing made it hurt. I got a call yesterday from the nurse navigator who said she'd reach out to the doctor. It's now been 6 days since I reported the issue. Labs look different than during the previous rounds of chemo. WBC and RDW-SD are high, RBC, Platelets, Hemoglobin and Hematocrit are low. RBC morphology is abnormal. No idea if this is as expected.
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Just got a call from the oncologist's office. She'll see me this afternoon.
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NJ: I am so sorry that you are in such pain. And I am glad she is checking in with you. Let me know how it goes.
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Hi Ladies -
I'll give you a complete update. I've missed all of you and have been MIA since returning to work last Monday. I'll have to catch up on our thread a little later.
I made it through 2 days of work (not a great "re-entry." Developed a fever of 100.5, which as you all know is an important thing to watch for on chemo. This was accompanied by a headache, chills, sore throat. Sent my my oncologist to the ER (where there were large numbers of COVID patients waiting…I so did not want to be there). Admitted to the hospital for 3 days of antibiotics. Because of the headache, ER did a CAT scan. Even with having the life scanned out of me prior to surgery, there had been nothing for the head. There was a suspicious lesion in my brain (this cancer never does sleep). Following admission, had a brain MRI which confirmed metastatic lesions (5 of them) in different places in my brain. Had to come to acceptance of this pretty darned quick, and the 3 days turned into 6 in isolation. Good place to do a lot of soul searching and praying. Will be dropping the AC for now due to immune collapse (don't worry, this is not a common thing) and need to decompress my head (literally). I was discharged on Monday afternoon following consult with radiation oncology, and I will be getting high-intensity TrueBeam stereotactic brain surgery on Friday. Fitted on Wednesday for a special mask to hold my head in one place, as well as brain mapping and treatment after they coordinate with the physicist. Five treatments to the largest of the five tumors and then 3 treatments for the other four. I see my hem/onc tomorrow to discuss where the chemo will be headed next as well. I'm now clinically stage 4 IPLC instead of 3a. Not trying to get any further than that, trust me.
Overall, doing well, not in panic mode (thankfully, I don't seem to be wired that way…LOL). I'm not dead and don't intend on getting into that state any time soon, but at least I'm getting appropriate pain medications. I'll catch up on our thread to see how you are all doing. What a fab bunch of BC pals!!
Mouse
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