Chemo Starting September 2018
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Hey, ladies! A bunch has been happening. I went to the plastic surgeon on Monday and the seroma was back, but for some reason she couldn't draw the fluid out. Worse, the culture found an obscure bacteria. So we talked options. She's afraid if she does nothing the foob (fake boob) will get massively infected, she'll have to take the TEs out, and I won't be able to have implants at all. I don't follow all of that logic, but there it is.
So she wants me to have surgery on Tuesday next week. I'll be home for 2 weeks-- bummer! And I have to find a friend to drive me to the hospital at 5:30 in the morning. Sigh. This is when I hate being single! And i have to make plans for someone to take over my class for 2 weeks. The surgeon did say to expect to wake up with a drain on the L (infected) side, b/c with my history, she needs to plan for drainage.
Meanwhile I called my ONC to tell them about this developemtn. He seemed to think it was a reasonable plan. They also said, while on the phone with me, that they've discovered my anemia is caused by kidney disease. Apparently I have stage 3 kidney disease, but there's not much they can do about this because one of the major treatments is not possible when one has breast cancer. Bummer!
So I have a lot to do between now and Tuesday.....Meanwhile I hope you're all hanging in there and doing well!
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Fairchild - So sorry to hear that. So after they take out the TEs they’ll give you something to fight the bacteria? Is the kidney disease one of the SEs from chemo? I remember having my kidney function checked before surgery so I’m surprised they’re finding this now. Really hope it can resolve by itself...
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Brink, I'm already on massive antibiotics, but she's afraid once I finish them the infection will get worse quickly. I don't really know why I have kidney disease. It was found a couple of years ago, in an earlier stage, but has gotten worse since chemo. I think I read somewhere that chemo can make it worse. I have had high BP since I was in my 40s, and diabetes the last 10 years, but both diseases are really carefully controlled by my diet and medication....so getting kidney disease from uncontrolled HTN or diabetes doesn't make sense, you know? I suppose that may be something I never will know. The thing is just to pray it doesn't get worse......
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Sheri - I didn’t give anything to my team of nurses at radiation center. I thought about it, but I constantly have different nurses, it made it difficult for me to know who is going to be there on my last day.
Fairchild - I am so sorry to hear that you are having so much trouble. I hope they can at least figure something out for you in the meantime.
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Tigerlily - You're hair looks great - I can't believe how thick it is. But I am seriously considering keeping my hair short for a while, just because I'm loving the freedom of it.
Piksie - Yay, you! I am loving going topless. I wear a hat outside when it's cold, but other than that, never any more.
beeline - You're on your way - hope the rads go quickly!
Brink - Sorry the cupping isn't useful. It looks painful, so I'm glad to hear it's not!
Fairchild - Wow, that's an upsetting turn of events. I hope they get the infection under control and the surgery helps. I hate that you are having to go through that.
So, I'm accepting friend requests on FB, assuming it's you guys. I didn't do rads and just had four TC rounds, with different nurses each time. I never really got to know any of them. Plus, I was drugged up pretty good, so I wouldn't remember if I did!
Between my diagnosis and my BMX, we went to Aruba and made a vow on that trip that once I was done with active treatment we'd get back to the ocean. I'm still recouping financially, but not that my port is out we're keeping that vow and heading out Thursday morning for a few days in the Keys. I'm so looking forward to just breathing in the salt air and listening to the waves.
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I always loved getting a massage so now I’m trying to find whatever alternative I can get, but looks like there’s nothing like it...
BeingPositive - I already had neuropathy from my Taxols and now the AC is just making it slightly worse, so I’m not planning to ice for now. Hopefully it won’t get much worse, although I have been dropping some things.
Although I always had slight near-sightedness, I never needed to wear any glasses. Now that I’m on AC I could notice my vision getting a bit blurry beyond 10 feet. Which is a bummer. I’m go see an optometrist and hope this is not permanent because I’d hate to have to get used to glasses now so late in life.
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Brink, my already bad eyesight got much worse on AC and then worse again on Taxol, but has resolved back to normal badness as of about 1 month pfc. I had read that chemo can cause temporary changes much like pregnancy and you should wait a few months before changing prescription.
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Thanks for your empathy, ladies. I'm good with FB, but I honestly don't post on there much, especially about the cancer. One reason I like it here is that there is complete freedom to talk about the cancer, you know?! Anyway, I'm Leslie Robinson, and the same photo I'm posting here is on my Facebook page. I'm try to be on the watch for friend requests, except for Tuesday when I'll be at the hospital. I hope I'll be awake and alert pretty quickly out of the surgery, but my history with anesthesia isn't particularly good. I'll be so glad to get this part over with!!!
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beeline - Thank you! I really hope this is temporary. I do have a pair of glasses I made years ago that were a bit strong for me, but now when I wear them I can see better. I’ll stick with them for now and hope it doesn’t get worse. Did you eyesight get worse with each AC?
Fairchild - I sent you a friend request on FB. Let me know if you see it. We have a private messenger group now on FB and it’s quite convenient for chitchats.
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I'm jealous! I wish I had Facebook just to chat with you all!
For those of you on vacation, enjoy! You all deserve it.
My hair is growing but man its also growing a lot in my face. Peach fuzz galore !
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Sunocean - I also had so much facial hair! I ended up running my epilator across my face and it hurt! But it did the job and it hasn’t come back since.
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At my cancer center again for another ultrasound. Truth to be told, I hate coming here. I still remember the first time I came, I was screaming in my head - “why am I here? I don’t belong here! This has to be a mistake!!” Carol, enjoy your vacation! I am ready for one myself.
Sunocean - come join us on fb.
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Fairchild! OMG! I'm so sorry to hear what you're going through. I hope if you're having other symptoms of kidney disease, they're mild. Surgery on Tuesday is to remove TEs? I wish I was there. I'd drive you to the hospital.
I also sent you a FB request. You were like the 450th Leslie Robinson!Sunocean, join us on FB. You can create an account with an alias and no picture if you're concerned about privacy or crazy ex-lovers.
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Good morning, ladies. I am off to UCSD for an MRI on my spine. If my spinal cord is right down the middle, we zap T6 with one big zap. If it is off-center, I get five little zaps. Will also get a good look at C3 which was questionable.
Then 22/25 rads and radiation sim for the eight boosts, then off to work. Although, I’m strongly considering taking the day off.
Wish me luck! 🍀
Hope you all have a fantastic day.
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Sheri - So after today you just have 3 more rads and then you are done! Getting there!! Wishing you good results!
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Three more regular, eight boosts, then radiate T6. Not done yet, but making progress! Last one is either 3/15 or 3/21, depending on what the MRI shows.
That MRI machine is TINY!!!
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I'll be done with chemo at around the same time!
So I went to the optometrist today who said my prescription hasn't changed, thankfully. I'm just noticing the blurriness more because my body is probably tired from all the chemo.
She did mention why my MO wanted me to get regular eye exams, which is in case of the rare chance that BC metastasizes to the back of the eye. Apparently this can happen and regular eye exam can help detect that. I guess my MO didn't want me to worry and so didn't mention the possibility. But still I would like to know!
Edited to add: The optometrist also said in rare cases Tamoxifen can cause deposits in the retina so it would be good to take a picture before going on it and monitor. Feels good to talk to people familiar with BC in a non-hospital setting.
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Piksie, that sounds like a lot to cover in one day! I hope you decided not to go to work and the MRI results are what you want to see.
I should also finish on the 15th of March, one week before my birthday. Although I am officially signed up to do the clinical trial now and that starts in April, so I'm not really done done in the way I'd like to be.
Fairchild, I'm so sorry for everything you're going through! I hope you feel better post-antibiotics and surgery.
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My lovely friends and family are hosting a bonfire in April to celebrate the end of chemo and radiation for me to burn all things related. Most don't know of the mets, so the impression is that I'm done.
My question to you all: what would you burn?
P.S. Nothing on the MRI yet. Assuming Monday at my weekly RO consult.
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Oh, Piksie, there are so many things I would burn! The mastectomy bras and the darned drain holders the hospital gave me! The too small sports bras the plastic surgeon has me in to control the seromas. The endless paperwork from the hospital on my white cells and red cells and blood chemistries, etc. The head coverings, oh, how I would like to burn those! Have fun-- I think there's a lot of positive you can do at that party!
Thanks for your support, folks. I'm surprisingly anxious going into this surgery. It happened so fast, and I have barely gotten all plans in place, so I'm working this weekend again to get things taken care of. I was in a lot of pain after the mastectomy, so that's not a happy thought to have in my mind. And for some reason my bladder wouldn't wake up, so they couldn't send me home from the hospital. And I admit to worrying about whether she will botch the surgery in some way. I think at this point I may have used up all my courage! But I'm fortunate to have my friend's help getting to the hospital and my grown children's concern. What would we do without the folks we love!
You all sound like you've been making lots of progress. I'll be gone for a few days with this surgery. Oh, I think I'm friends with most of you on FB now, but I haven't been there much because of plans for the surgery. I'll be glad to have this over!
Wishing you well!
Leslie
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Fairchild...please keep us posted on how you do. I'm so sorry you're having all these complications. Wish we could be there to drive you and offer support! Praying that all will go well!
And Piksie, you as well with the zaps.
I was lucky with the gifts in that my rads happened over the holidays. I got a burst of energy and brought everyone cookies - we always do homemade cookies and while I did not give them as gifts this year, I made enough for the staff at the Cancer Center and for Christmas Day. I also brought in hats and trinkets for New Year's Eve. I didn't get something for my Chemo Nurse - we didn't really bond and she was gone for one of the sessions. I wanted to do something for the acupuncturist but couldn't decide on what - he mentioned something about his diet one day and so I thought cookies were out. That still bugs me. Not sure if it will coincide with Easter candy or spring flowers or something seasonal?
OMG re cupping! I tried it once and about 10 minutes in I called to my acupuncturist to get them the F off me! I was so claustrophobic!
I would burn all of the anti-nausea meds I didn't use, especially the Zofram - better than flushing it right? And all of the bras I bought that were horrendous before I finally found some that work - especially the ones with the billion hooks up the front. I met a woman from my yoga studio for tea last night...she had her first TC a couple of weeks ago and gave her a few of my caps, so they are going to good use.
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Fairchild - Praying that your surgery will go smoothly and without complications for once!!
I love the idea of burning all the nausea meds. I would burn all the cancer center free tote bags, pamphlets, notepads and pens.
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Fairchild hoping for a successful surgery. I'm sorry to hear everything you're going through.
Piksie glad to hear you're almost done. I would burn all the beanies.....ugh and would burn all the pink shit I got from people. I know the intent was good but I didnt want to be reminded or branded if that makes sense.
I am recovering ok. I still have that one darn drain and now on my right side I have like a bulge in my armpit. Hard to tell if it's how its healing (ie small dog ear) or a seroma or what. It's a little painful and uncomfortable. My incision doesn't look at all infected. Looks like its healing fine but that side does look a little more swollen so I will monitor it. again this is the radical masectomy side so I know i cant compare it to the prophylactic side. I'm 2 weeks out so i know it's still healing. Ugh. I think I've just been through so much i just want to be done with discomfort. And I still have rads to go to!!!
Everyone else I am glad to read your updates. Wishing you all a great week.
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Piksie, I would probably go a bit more woo-woo than is usually my style for a bonfire and burn all the things I want to leave behind me — like fear, pain, etc. Maybe by writing them down on pieces of paper. I would also give my kids a chance to make drawings, art or writing of those things they want to burn. Into the cleansing fire! It sounds quite cathartic.
Fairchild, thinking of you and your surgery
Sunocean, glad you are healing well! I also have a lump where my axillary LN’s were removed. It was a seroma but now I’m afraid it’s just permanent
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Great burning ideas! I'll give the boys the option, but not sure it will trump soccer time.
So the MRI brought good news and news. Good news is that C3, which was questionable, appears to be age related. (at 45 - Sheesh!) Other news is that there are two spots on T6. One with healing growth and one without. The plan is now to irradiate the entire T6 vertebral body, so I'm being passed off to an RO who does this sort of thing more often. Assuming follow-up imaging shows both spots dead, I will be considered cancer-free. NED! Cross your fingers.
Sunocean, hope that last drain comes out soon!
Fairchild, thinking of you!
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Piksie - I had a similar thought to beeline of writing down what I wanted to leave behind. And will be hoping with everything in me that you will soon be telling us you are NED!
Fairchild - I hope you find this surgery recovery much, much easier than the mastectomy. I felt better just having the TEs out.
My husband and I kept our promise to get back to the sea and had a wonderfully relaxing three days in Key Largo. I felt like we were marking a transition from treatment to recovery. And my hair had grown back enough that a couple people commented on my easy-care haircut!
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Piksie, fingers and toes are all crossed! Praying for NED!
Sunocean, hope you are doing better and get rid of the drain!
Fairchild, hope today went well. xxoo.
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Wanderweg love pic!!! Your hair does look super cute!!!
So happy you got to travel. Good for you!!!
Piksie praying for good results!!
My doctor cancelled my appt today and I speak to him tomorrow regarding my pathology results.
So I got my port installed when I had my double mastectomy even though I started chemo in Sept because my veins are so small. Omg why didnt I do this sooner?! My doctor had me wait for surgery since I have low blood platelets and he didnt want me having an unnecessary surgery. But because I will take herceptin and perjeta until Sept I got the port. It does feel so wierd and my kids think it's the grossest thing
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Piksie - So the T6 spot without healing growth is dead? When will you do the follow-up scan?
Wanderweg - What a nice picture! You’re looking strong and healthy!
Sunocean - Hope your last drain can come out soon! They’re so bothersome. My skin was rather irritated by the dressing when they installed my port, but as soon as I took that off it felt fine.
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Brink, no. The spot with uptake is dead. The spot without is alive so zapping all of T6 with hopes of killing it. I’m not sure about follow-up scans. I see MO next week for next steps.
Sunocean, I love my port, too.
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