Starting Chemo in October 2015

MDW1967

igay1ord: Hmmm, your post gives me hope! I'd love to think my color might come back. Mine is also laying down on the sides but standing straight up on top! Maybe it just needs to get a bit longer before it stops trying so hard to defy gravity. ;-)

I hope everyone is doing well and feeling stronger every day. Miss reading about everyone's lives, but I'm hoping that not hearing means that everyone is just too busy enjoying life to sit and write about it.

As for me, not too much exciting news, but I continue to feel my strength and stamina come back little by little. I've started adding a tiny bit of slooooow jogging to my power walks--though I can only go 1/4 to 1/2 mile before stopping to walk.

Still no injection in my tissue expander yet. I went back again last week and, although my PS agreed that the infection seems to have cleared, he noted there's still a bit of inflammation he'd like to see subside before doing an injection.

Wishing everyone a great upcoming week! xo

igay1ord

I just shaved off my white "chemo fuzz" and this is what I'm left with...not too bad. My hair is now about the length of a short buzz cut! My last chemo was Feb. 24th, so this is 8 weeks PFC. And I can finally see some eyebrows coming back in...and they itch like crazy! I've already had to shave my legs. I wish the hair on my head grew as fast at the hair on my legs....have a great week everyone!

MDW1967

igay1ord: Looking really good! That seems like a lot of regrowth since the end of February--especially considering that you've even shaved some off to get rid of the chemo fuzz.

I've noticed the same about leg hair--I've had to shave my legs already, too. Figures that leg hair would hurry to come back faster than anything else does....

homeschool4us

Hello everyone!

It's nice to see a few people here and see how you are doing. I've lost track, but I think I am 7 weeks pfc this Thursday. I have more hair than I had expected at this point. It's about a half inch long and still filling in. Mine is coming in very dark. I had colored mine for years, so I am not sure what to expect. My eyebrows and lashes are filing in rapidly. I have eyelashes everywhere, they are just short still. My eyebrows are filling in from the inner corners out. I just had day 11 of 33 rads today. It's going well so far. I still lie down or nap every day. I also have had awful aching from the knees down every evening the past 2 weeks. Otherwise, all is good except the dumb chemo brain. I saw my mo last week and she said she wasn't worried at all about the liver spots being different on the ct than the ultrasound. She said they each give a different picture. She said the spot on my hip that only the ct saw, not the bone scan, could be a healing spot of cancer, but there is no way to know at this point. She said I can tell people that I am cancer free at the moment, but that there is no way to know if there are stray cancer cells floating around. Cancer free is a nice thing to hear.

Andraxo

Hi everyone!

Wow - I haven't been on here since April 10th! read through and caught up.

I found I needed a break from BCO boards - found myself finding other boards that were stressing me out....like Tamoxifen, reconstructions, and surgical complications, and so on. I don't start Tamoxifen until June 1st and don't want to think about side effects yet. Enjoying being free from chemical and rad assaults for 6 weeks before starting something new. Hoping my body keeps recovering.

My radiated skin is healing nicely though sports bras are still not comfortable, and my hair is growing even along the hairline. Rocking a sweet little buzz. Will be nice when it fills in even more and becomes dense. Lots more greys than before chemo though. AND...eyebrows!! they are faint little hairs, but there! Yay!!

Working half time on-site since last week. I'm a bit tired from rads...sleepy is the better word - like a blanket of sleepy in the background. Forcing myself to leave after 5-5.5 hours of work (because I could stay longer if I let myself get sucked in) and I'm going to do that for the next 3 weeks, except for a couple days where there is no way around the 10hr days because of a special clinic that happens once per month (which I manage). I need to get things done around my place on the Rez which was neglected for 7 weeks during rads. Also...on principle...If I go back to 10hr days immediately that will be the expectation moving forward and I want and need to ease back in. I am still recovering no matter how many people tell me I made/make it look easy. My body and brain/mind still have a long way to go and I am prioritizing ME, and things I need to get done and the fun things that make me happy, over work.

So happy to see that everyone is doing pretty well now - we have come so far!! Hooray for us!

Here are some pics from this past weekend...

One is in a crazy interactive installation art exhibit in Santa Fe called Meow Wolf. Those glowing rib bones are musical if you strike them.

Another is hiking with Lenny. Boy it sure was nice to live with him for nearly 2 months during rads....wish that was our life all the time, but I need to work out here for some more years first.

xoxoxox

Kimmer33

hi ladies!

Hope you are all well! Just checking in, it's been awhile but i am out and enjoying life! I feel some boards just stress me out and bring back memories that I am ready to get past, but i miss my peeps! I truly think of all of you often, you all got me through my worst hours, i am forever grateful.

Here's me today:

I wish all of you health and happiness this week

MDW1967

Awwww, so good to see folks checking in! I love hearing that folks are feeling good--and seeing pics of smiling faces and new hair growth! I understand feeling stressed out by some of the boards. The only ones I go to are this one and the one for Hair, Hair Hair.

Homeschool: Glad you're getting through rads despite the fatigue. "Cancer free" is indeed a nice thing to hear, and I'm glad your MO had reassuring things to say about the spots. I just had a CT scan last week and the spots on my lungs from prior to chemo were described in the report as "stable". My MO's PA said they'll probably do another CT scan in 6 months but they don't sound concerned.

Andra: Looking fabulous! Your buzz cut looks terrific, like that's just the style you're rocking. Nice to see pics of you out and about, and a pic of you and Lenny. You're really doing the smart thing by not letting yourself overdo it at work, and working half-time for now. I so know what you mean about prioritizing yourself. I feel the same way. Just because I'm physically able to work full time and get back to a "normal" workload doesn't mean that I want to. It's pretty fair to say that all of us have been to hell and back, and we've more than earned the right to slow it down and focus more energy on enjoying life. In fact, in a couple of weekends, I'm going away by myself because I just really want that right now. I'm going to Pacific Grove, just south of Monterey. I'm looking forward to hiking, kayaking, tide-pooling, reading. Basically, just doing exactly what I feel like doing without having to take anyone else's preferences into account for a couple of days.

Kimmer: You are SO rocking that hairstyle. The shape and color are so pretty on you. I have regrowth envy. If my hair looked that great, I think I'd just keep it that way forever.

Here's me right now. Regrowth still a bit skimpy on top. Grow, dammit, grow! ;-)

igay1ord

Kimmer...your hair looks great! Are you going to keep it short or continue letting it grow? I think I'm going to keep mine short like Jamie Leigh Curtis! Mine used to be down past my shoulders, but I've gotten so used to not having hair that the thought of having to do it everyday just makes me tired!

MDW...lol! We've all said the same thing a time or two..."grow, dammit, grow". I have to admit that the faster mine comes in, the more "normal" I feel.

I had a gentleman in front of me at the grocery store yesterday who asked me if I was a cancer patient. I said yes that I had breast cancer. He asked me if I would come out to his car and speak to his wife. She has been going through this same journey, but refuses to leave the house without either a wig or a hat. He told me that I might possibly give his wife the courage to say the heck with it and just go natural. I'm so glad I did! I met the most wonderful couple...Marguerite and Jim Richardson. Since my husband works out of town and comes home once a month for 3-4 days and all my family is in Charlotte, NC, they told me that if I ever needed help with anything to please call them. It's people like that who make this a little more bearable!

Have a great rest of the week and weekend everyone!

MDW1967

igay1ord: What a terrific thing, that you could be in the right place at the right time to talk to that gentleman and his wife! It sounds like you helped them out, and in the process, made some great new friends. Very cool.

I'm checking in today in a little bit of a messed up frame of mind. The infection came back in my left breast/tissue expander. For awhile after I took the antibiotic last time, it seemed to be trending in the right direction. The infection responded to the meds and receded pretty quickly, but the inflammation never went 100% away. And then in the past 24-36 hours, it suddenly kicked in again. By yesterday afternoon, I was getting scared because I started feeling a lot of discomfort up under my armpit and across the top of the breast. My PS called in another prescription for antibiotics, and I started them immediately but was running a low fever last night. My fever is down this morning, as is some of the swelling, after getting a few of the pills under my belt. And I Sharpie'd around the edge of the red area so I can monitor to make sure it's receding vs. spreading.

My PS is starting to talk about removing/replacing the expander, and/or of the possibility of losing the reconstruction altogether if we can't get this sorted out. I'm wondering if sometimes the body rejects the expander. It almost feels like that's what's going on--the inflammation has just been so damned persistent.

And, as a result, I'm starting to question my decision vis a vis reconstruction. It honestly never really occurred to me that this might fail, or that I'd run into these complications. Part of me is wondering if it's worth it.

Ugh, sorry not to have a happier outlook--especially on a Friday. ;-) I do hope that everyone has a wonderful weekend.

Andraxo

Oh Meara! I am so sorry you are going through this.It's not the course you had expected and infection complications are very scary.Sending some extra love and energy your way to deal with this. If your expander has to come out, know that there are still other options for construction later that don't involve expanders/implants.

Thank you also for talking openly about it.It helps me personally in contemplating future reconstruction. Complications with the expander/implant route is not uncommon. One friend (a pediatrician who also just retired from working here last August) just had to have her implant removed a few weeks ago due to infection. She was someone who had also ruptured the tissue expander through her radiated skin during radiation and needed multiple wound care surgeries and a full muscle flap graft for skin coverage in 2013. She had only finally gotten the permanent implant about 8 months ago due to years of drawn out complications since her mastectomies. She's in her 60s but was otherwise healthy/active before all this.

I worry about the women I see on other threads who are starting radiation with expanders in. I was told 30% complication rate.30%!! That is crazy high risk! My surgeon would not put in expanders during mastectomy surgery if my nodes were positive which meant I was going to have radiation. If my nodes were clear I would have woken up with expanders in (and never had chemo or radiation).Many surgeons do it and yes many women make it through even radiation with expanders without complications...but for him (and me) it was/is too risky. Ugh. Keeping my nipples without breasts is also so strange to me sometimes. I still need a bra for nipple coverage and comfort so they don't get chafed.It would be nice to just fill in a little behind them…even just an A or AA cup. If I do nothing it would be tempting to have the nipples removed so I wouldn't have to wear anything if I didn't want to.It's not like they have sensation anyway. Getting ahead of myself from a recon perspective….need to stop that and meet with the plastic surgeon again - and I just set that up for May 23^rd.

I hope you are feeling physically better quickly on the antibiotics, and mentally better by letting the stress of this go. Maybe get outside this weekend? I'm so excited for you getting away for a weekend solo soon, but maybe some hours to yourself outdoors this weekend would also be good if your body is up to it and responding to the abx.

- xoxox

MDW1967

Andra,

Thanks for the kind thoughts and encouragement. Originally I balked at going the route of using my own tissue/fat to do reconstruction largely because it would mean recovery from an additional surgical wound at the same time that I would be recovering from the breast implant and reduction on my right breast. But now I'm two infections in with the expander, and still don't know what the outcome will be...so much for trying to simplify! I do have an appt with my PS next week on Tuesday and I'm making a list of questions to ask him. I've been wondering about the possibility of changing course on the implant route and going with using my own tissue.

Reading about what your friend has gone through with her implant is pretty sobering. In my situation, before they decided I wouldn't need radiation, they were going to do radiation with the expander in. Hearing about your friend's complications makes me incredibly grateful that I avoided that. My MO told me that when radiating through an expander, they often have to increase the overall radiation (for whole breast rads anyway) to be effective, which is a little scary in terms of how that impacts the skin. 30% risk of complication is extremely high! I wonder if women are being told those odds before they choose to get expanders.

I hope that whatever you ultimately decide to do with your own reconstruction, everything goes smoothly and without complication. The nipple quandary is an interesting one. Especially given there's no sensation, it does make you wonder if keeping them is ultimately more trouble than it's worth. My friend from High School who had a bilateral mx several years ago did opt for reconstruction (implants), but without nipples. On an admittedly superficial level, I remember that when she mentioned that, I envied that she didn't have to worry about her nipples showing through clothes anymore.

I can see that the antibiotics are working pretty quickly (redness is already receding away from the Sharpie line and the pain is lessening), so I'm hopeful that this weekend can be salvaged. I definitely intend to get outside--it's supposed to be a beautiful weekend here. My son has baseball games tonight, tomorrow, and Sunday--which is a little over the top, schedule-wise but it'll be nice to be out in the sunshine and watch him play.

xoxo

Meara

Kimmer33

thanks ladies!

I am going to let it grow through summer and see how i like it - i am used to below shoulder length and yes, agreed, having to do my hair every day sounds dreadful, i am so spoiled with it short, i just may keep it!

Meara, sorry to hear about the infection! My thoughts are with you ladies and your decisions to be made about recon, all the best to you

BellaV

This was my "debut" today, in public without a hat or wig.  Perfect time, with friends at the Walk for a Cure event. The little lady on the left is a 31 year survivor and my other friend in the middle is a 26 year survivor. 

Andraxo

Yay BellaV - such a joyous pic!!

Meara - is your infection almost gone now? hope so! Do you have f/u again with surgeon soon?

Well...I now have Shingles. It figures. I guess it was naive to think my recovery from chemo and radiation would be linear and on an upward slope. Felt awful all weekend with viral symptoms. Had the rash since at least last Monday but didn't think Shingles until many days later...past the window when taking antiviral meds makes the most difference....but friend (Internal med Dr I work with and hike/ride with) wants me to take them anyway. Saturday night I also had the worst headache I can recall in my life, almost went to the ER...even worse than after Neulasta - and that is saying something! Of course, as crappy as I have felt the past few days and that all my joints and muscles hurt so badly I was having trouble getting around, I still signed up for a 5k when I am away at a conference in 2 weeks. Yup, that's me.

Found my bag of hair today. So weird to see it all in one ziploc bag. Maybe I should throw it out, but I still think about doing some bizarre craft project with it. Maybe it would be cathartic. Ha!

- xo

MDW1967

BellaV: That is a beautiful picture and you're looking great! I'm a little envious of your perfect hairline.

Andra: Ugh, I am so sorry to hear you have Shingles. Not to mention the horrendous headache over the weekend which sounded scary. You seem like a pretty tough customer, so I imagine if you were thinking of going to the ER, it must have been brutal. I hope that if you do start the antivirals now, even though it's late in the game, maybe it will at least shorten the Shingles' duration. I know that's a painful illness.

My infection has definitely waned a lot since starting the antibiotics again, but it doesn't appear to be 100% gone yet. I will admit, I'm getting a little scared and fairly discouraged. My appointment with my PS is this afternoon, though, so at least I can ask more questions about options, risks, etc.

Andraxo

Thanks Meara. Glad your infection is getting better and I hope the PS had good options for you. It's hard not to get scared and discouraged when new problems or complications come up. Just another thing...as if we can't catch a break. I feel like that's the world I'm living in too...scared and discouraged. Can we have margaritas and Chicago popcorn in this world?

The headache ramped back up to awful again last night. Thought my head was going to explode from the pain and pressure. I got scared (thinking it was going to kill me) and then started crying and having a pity party in my head, which made it worse. Could not get out of bed to go over to the ER (a 5 min walk or 2 min drive). Wanted to hold out until this morning and see how it was because I really hate waiting at the ER or UC. I've got it under control with meds on my own now, but still mildly in the background. Not sure what I will do if this happens again in the night. Oddly the rash isn't very painful - it just gets itchy and stings, but feels better if I smack it a few times with something. My labs are also a little weird. Crazy high eosinophils only.

It is such an incredibly beautiful day! That is helping me tremendously! I took 4 dogs (my 2, one I'm dog-sitting, and my neighbor's dog because he squealed with delight when we walked by) for a 2 mile walk around. Going to lift weights if the headache stays low. I took yesterday afternoon and today off work after getting the shingles confirmed. They'll live without me. I'm keeping up with work e-mail and that always helps.

- xo

MDW1967

Andra: Do you think the headaches are related to the shingles? I don't know what symptoms come with that illness, other than the rash and general fatigue. It sounds truly terrible and I hope it doesn't come back on you tonight--or any night, for that matter. I hope it gets on the fast train out of town. I hear you about hating to go to the ER or UC. It's the most depressing thing--especially in the middle of the night.

I'm really sorry that you're inhabiting the scared and discouraged world, too, these days. I know it's irrational, but I feel like it's so unfair that, after everything else, we should have to deal with *anything* else that's crappy. I realize that we don't come away from cancer with a "get out of jail free" card--but dammit, we should! Also, I have no idea what Chicago popcorn is, but it sounds good, and I'm all in on the margaritas!

So the net result of my appointment with my PS today is: we decided to go ahead with having him go in, remove the expander, clean out the infection, clean the expander, and replace it. He just didn't have a high degree of confidence that the antibiotics alone will completely knock this out, given that it came back after a 2-week round of antibiotics. If he gets in there and there's a lot of infection remaining, he might take the expander out and sew me back up. Then we would wait several months before doing anything further, to give the infection time to completely clear.

I will admit that I'm a little ambivalent, but I ultimately decided to try, try again vs. saying, let's abort reconstruction. My PS said he has had success with the handful of situations where they've taken this approach, so I'm going to try to remain optimistic. Not thrilled about the extra surgery, but it's outpatient at least. Good thing I didn't get rid of my drain belts or post-surgical camisoles! ;-)

Oh, and he wants to do it asap so that the remaining infection doesn't have a chance to gain any more ground. They're going to try work me in tomorrow afternoon, but I'm on a waiting list. So now we're scrambling to find someone who can pick up our kid from school, take him for the evening, etc. I'm postponing my weekend away--which is a drag, but on the other hand, I'm relieved to take action on the expander. The infection has been scary.

Andraxo

Wow Meara! - I hope you got in for surgery today and that it went well...and that you are now home recovering. Sorry you had to postpone your sweet solo weekend away. You will do it later for sure!! I also hope everything fell into place having your son cared for while you were going through all this with little notice/planning.

Yes, headache can be part of the shingles profile, along with fever etc. The headache, just like the pain at the rash site, is usually the absolute worst at night for people and starts ramping up after 8pm per everything I've read. My rash site has always been tolerable. The antivirals are making me a little lightheaded during the day but I was warned about that. I still ran 6 slow miles this morning once I cleared the haze.

Last night I slept better. I stayed up late (partly because I was dreading going to sleep), took Ibu, antiviral med, melatonin, AND some drops of medical marijuana tincture. I also propped myself up like I would if I had a cold or sinus infection because my headache feels a lot like a sinus infection, just much worse. Didn't set an alarm and just went with it. The combo seemed to make a big difference so I will try it again tonight! The symptoms should get better in a few days.

Oh...and Chicago popcorn is a mix of cheddar popcorn and caramel popcorn - so it's the best of both worlds being both sweet and salty. Soooooo good! It is hard to stop eating it. Lenny introduced me to it last year. They sell it many places, but trader Joe's for sure.

- xo

MDW1967

What a crazy week!

I did get in on Wednesday for surgery--they called around 11:00 a.m. and I had surgery around 2:00 pm, and was in the car heading home by 5:30. And we have been so lucky in terms of having friends from my son's school who are willing to help out when we need it for moments like this one. Owen got to hang out and play with one of his classmates and eat spaghetti and meatballs at their house for dinner, so he was happy as a clam.

Happily, recovery from this procedure has been a cakewalk so far. I was a bit sore on Wednesday evening and took one of my heavy painkillers, but since Thursday morning, I've only had to take some OTC Ibuprofen once. And I have a much better range of motion than immediately following my mastectomy. The drain is already slowing down, too. I have a check-up on Monday morning and suspect they'll remove it then, based on how little fluid is accumulating.

My plastic surgeon said everything went well--he cleaned things out and put in a fresh expander, and there was nothing unexpected. So I'm crossing my fingers that all goes smoothly from here.

Andra, I really hope that your bedtime cocktail has continued to deliver some good, headache-free rest. I'm amazed that you can still run while dealing with shingles and the meds for the shingles. Are you sure you aren't a superhero? ;-)

It's funny that I didn't realize what Chicago popcorn was--I've been eating cheese and caramel popcorn mixed together since college. There was a girl in my dorm who turned me on to it. Sweet and salty is where it's at!

Well, it's Friday, and I wish everyone a terrific weekend! How's the hair growth coming? Mine is finally starting to fill in more in the front and crown, but I can't quite figure out *how* it's growing. The hair on the sides looks quite straight and is growing in the same direction, but the hair on top seems like it can't decide which way to go. It's incredibly soft, though. My husband is constantly rubbing the top of my head for luck.

xoxo

Andraxo

Feeling sooooo much better than I was last weekend and early last week. Shingles rash almost gone and the headaches are much more mild at night Yay!

I even ran 9 miles yesterday with Lenny and 5 dogs! We ran almost 7 all together, then went back out for a couple more without the dogs. It was slow, but good - especially given that last weekend I felt so awful and spent most of the time on the couch.

How are you recovering Meara? Well I hope. Did they remove the drain today?

Hair growth coming along. It has filled in nicely with a string hairline in the front now, it's just super short though - still looks buzzed. A few areas are starting to show direction, but not consistent throughout....can't quite figure out what it is doing either! Definitely more grays than I had before. I have a relay race this coming weekend, so there should be a lot of crazy pictures.

After this week I seriously only work one day for the rest of May because of trips. Business trip next week, then a trip to attend a wedding. I also just booked a place in Bend Oregon for several days mid June. I really wanted to take a road trip and go someplace I haven't been before. Bend area of OR it is! Hiking, mountain biking, and fly fishing! Woohoo! A friend of mine and his wife just retired there. I have a short trip planned every month for the next 4 months - have about 20 vacation days I need to use by Sept 30th or I lose them. I'll be happy if I can use 15.

Have a super week!!

- xo

MDW1967

Andra: Yay for the fading rash and fading nighttime headaches! It's pretty amazing that you're already up to being able to run 9 miles so soon after finishing chemo and rads--not to mention getting over Shingles. You're inspiring. Also, how great is it that you have so many trips coming up? I don't know if this is the case with everyone, but since starting to feel really recovered from the chemo, I'm feeling some serious wanderlust. Maybe it was the spending so many weeks and months pretty much housebound, but I just want to get out in the world. I suspect you're going to love Bend. I lived up in Portland for a few years, but never made it over to Bend. Everyone I've known, though, who has traveled there, raves about it.

I'm free of the drain, as of yesterday morning. It's great to be rid of that thing. And so far, things have been smooth sailing with the post- surgical healing. I'm cautiously hopeful that I might finally, actually be moving toward reconstruction. During the expander replacement, my PS filled the expander by 180cc's, so it's already doing its expander thing.

Herceptin infusion yesterday...I'm powering through those. It's a 30-minute infusion now, so pretty in and out. I do feel a tiny bit nauseous after, but it fades by the next day.

Happy Tuesday, everyone!

Andraxo

Yay Meara! - drain out, healing well post-op, and progressing with tissue expansion! You'll be through all this soon.

I'm feeling better and better! Worked 10 hours yesterday though and felt awful. I'm definitely not ready for 10 hour days yet. Also have some weird lab results last week and this week. No symptoms though, so Dr here advised me to see what oncology thinks of them. I'll bring the labs to my MO f/u on the 31st.

Eager to meet with the plastic surgeon in 10 days. Just want to know what, if any, my options are so I can think about what I may or may not want to do in the fall.

Heading to Moab tomorrow for my relay race Saturday. 2 members of our team dropped today (ugh!) but we found at least one replacment and can made do with 5 instead of 6...we all just run a little more.

Have a great weekend!

- xo

MDW1967

So far so good on recovery from the surgery last week! Been off the antibiotics for several days now and no sign of infection. I've been so afraid to get hopeful, but I'm starting to feel hopeful. My PS's PA reached out and said that, since I told them I'm happy with the size I'm currently at (with the fill he did at surgery), no need to schedule any additional fills unless I change my mind. So next step, if all continues to be well, is a pre-op consult to finalize approach and plan in 2.5 months, and then surgery in ~3 months.

I've been going out without head covers consistently for the last week or so. My hair *almost* just looks like a short haircut now, but not quite. I had some guy standing behind me in a checkout line yesterday say something to me about it--joking that my hair looks like his, and whipping off the bandanna he was wearing to show me his semi-balding head. It was one of those moments where I wondered why people feel the need to say something to me and remind me that I look different. I know it wasn't malicious, but it made me feel self-conscious just as I was starting to get comfortable with this new me.

Andra: I hope your race in Moab went well yesterday, even with a smaller team. I'm glad to hear you're feeling better and better, although a 10-hour day does seem pretty grueling. Good to recognize it's too soon for those yet. What are the weird labs showing, if you don't mind my asking? I haven't had labs done since late January, and I've wondered how those are looking these days.

Off to coffee up a little more for a busy day. My son has a birthday party to go to and a baseball game in the afternoon. I'm going to try to sneak out for a quick walk this morning. Trying to get my routine back online after recovery from surgery. Sometimes I'd rather sit around in my yoga pants drinking coffee all morning, but I'm trying to break that habit. ;-)

Hope everyone is feeling well and doing well!

Cherey

It's been a while since I've shared. I finished chemo on 4/25. I rang the bell and cried. I was so happy to be done! I just had surgery last Friday so one week post op. Still on pain meds, antibiotics, and anti nausea. Dr gave me muscle relaxers to take from time to time which help a lot. I went to lymphoma clinic for a consult last week and I was given lots of good information like doing light stretching after surgery which also helps with muscle tension. She showed me exactly what to do and what days to start each one. I have a follow-up in 3 more weeks after I've healed more. Got the path report from dr today - chemo did its job completely! No cancer left in any lymphnodes or any breast tissue. So grateful & relieved. I should be sleeping. I had a very emotional day so Im up still. I figuered it would help to reconnect and share.

I've read some posts and I'm glad to see that the October chemo group is still sharing. It's so nice to read up about others who are in the same place on this long and hard road.

Andraxo

Been crazy busy the past 10 days....relay run, a Public Health Service conference out of state, follow up appt with rad onc and consult with plastics. Whew!

Relay went well. We lost 2 runners 2 days before but found one replacement on short notice, so we all had to run more to make up the miles. I think I ran 15 or 16 miles that day! Also ran a 5k on Thursday and another on Saturday back in Santa Fe. My hip and knee joints remain achy daily, but muscles feeling pretty good.

Meara - my weird lab is Eosinophils. The upper end of the reference range is 2.9 Mine is 24. Rad onc showed the labs to med onc and she just said to follow up with primary care for infection work up....but they already did that weeks ago. Anyway...we are just going to monitor it because I don't have any other symptoms. Hope you are still recovering well and are able to do more!

Really getting nervous about starting tamoxifen.

Plastics wants me to have a fat grafting procedure done in June or July - way earlier than anticipated. Apparently there are some good benefits of it to radiated tissue.

Assuming my lungs remain clear and I don't get pneumonitis, I'll run a half marathon the first weekend in June. Yay!

Cherey - great news for your clear path report - Yay!!

Sorry so short...need to get to sleep. I work one day (tomorrow) then have to drive 4.5 hours back to Santa Fe and fly out for a wedding. I just got in from SF this evening. So much driving these days.
- xo

MDW1967

Hi everyone! It's been awhile since I checked in here. Holding steady with my new tissue expander. I had a couple of nerve-wracking days where I worried the infection was coming back (or had never fully resolved). But I've detected a pattern and it seems inconsistent with infection. I have an area on the inner breast that gets occasionally inflamed-looking--but no warm skin, no fevers, etc.. It's always redder by the end of the day, and much less so in the a.m. after I've been sleeping (i.e., without a bra). It clearly seems exacerbated by wearing more constrictive sports bras, so I'm sticking to bras that are softer and less compressive. I'm now three weeks post-surgery and two weeks post the last round of antibiotics. Still feels a bit like I'm waiting for the other shoe to drop, but I'm cautiously hopeful.

Cherey: I'm so thrilled for you that your final pathology report showed the best possible outcome! I understand what you mean about it being a very emotional day. So much relief. It's almost like you don't realize how much tension you've been carrying until you can let go of it. I hope you're still celebrating.

Andra: It seems like you just continue to live your best life, and don't let anything stop you. It's so inspiring! Running in lots of races and progressing your reconstruction plans...it's all about the forward movement. I'm also glad to hear that it doesn't look like the odd lab result with those white blood cells is anything your doctors are too concerned about.

Btw, on the Tamoxifen front...I've been taking it for awhile now...since April sometime. Other than remembering to take a pill daily (not my best thing), it's been pretty unnoticeable. I was told my hot flashes might worsen, but they've really seemed about the same. So good luck as you climb aboard the Tamoxifen train, but it might not be too bad.

Wishing everyone a great week! xoxo

igay1ord

Hi all! Wow, time flies! I can't even remember the last time I checked in!

It's been a pretty rough last 7 days! My port became extremely infected last Thursday. I ended up having emergency surgery Saturday afternoon to have it removed. The bacteria had already made it into my bloodstream, so I got to spend a few days in the hospital. Before I left, I was given a PICC line in my arm since I'll be on IV antibiotics for the next 2-3 weeks and can do them myself at home. It just never ends does it?! Lol...I had no idea what a PICC line was so I had to google it. The pictures were terrifying, but it honestly hasn't been that bad! All in all, I wish I would've had the PICC line from the very beginning, and no port at all!

I had my final radiation this past Tuesday! Yay! When it came time to ring the bell, I cried like a baby! It's just so emotional to have one thing down, gone, over!

Take care and I'll check in soon!

Cherey

Thanks MDW1967! It's been hard at times to.celebrate because I found myself waiting for something else to happen. My surgeon shared that I would feel this way. I'm not letting that stop me though because I am very grateful.

Thanks Andraxo! So encouraging to hear about how active you are. I am looking forward to the day that I can return back to my normal level of activity. I'm still taking it easy. Short walks for now.

igay1ord- Congratulations on your last radiation!!! I cried to when I rang the bell for my last chemo. So sorry to hear about your infection & hospital stay but glad that the removal went well and that it's getting better. If you don't mind me asking how did you know something was wrong with your port?

Can anyone offer input about your experience with drains and fluid color? I have my drain in still. I'm concerned that the fluid color isnt changing. My surgery was on 5/13 and the fluid is still red. The nurse I saw at my post op appointment said to call if it didn't change by this past Monday so I called but I talked to another nurse said it's not an issue. I explained to her the conflicting information. I left it alone hoping that I would see some change but no change. The dr put me on antibiotics starting as soon as I got home from the hopsital to prevent infection. The amount of fluid is decreasing. Yesterday 30cc. I called dr office today. Actually Im going there today because I need to know from the dr that this isn't an issue.

MDW1967

igay1ord: I'm so glad you're home and on the mend! Infections are terrifying. Did it develop after a recent infusion? Of course, now I'm freaking out a little because I still have my port in for my Herceptin infusions. But I'm so glad they got it under control after it traveled into your bloodstream. I know infections can turn in a heartbeat and suddenly you're fighting for your life. I'm glad you're doing ok with the PICC line. A few years ago, my husband developed an infection in his arm--literally from a patch of dry skin; not even a true "wound"--and was in hospital on IV antibiotics for a week. They sent him home with a PICC line, too, but then he started to have a reaction to the antibiotic. So they decided to take the PICC line out and put him on oral antibiotics.

Cherey: It's good you're seeing the Dr. so they can put your mind at ease over the color of the fluid. I can tell you that after my mastectomy, the fluid I was draining never really turned into the lighter, orangey/yellow color but did stay fairly red the whole time. But they told me as long as it wasn't cloudy or anything that looked like pus, it was ok. Getting drains taken out, when you finally do, is the best feeling. It feels like it takes forever, though. Hang in there! It sounds like the flow is decreasing, so hopefully you'll get them out soon.

Andraxo

Ok, so I've been avoiding the discussion boards because I find myself going onto other boards that depress me after this board we're on that I like reading. After I type this, I'm going to do my best and log out and not browse other boards.

Having some recovery ups and down with how my body feels, especially my legs (muscles, joints, continuing tendonitis - all still likely from that fluoroquinolone reaction). Of course a few minutes ago I signed up for a half marathon that is on this Saturday. My legs might not cooperate that day - seems to happen every other week - but I'll do it to say F#$%! Cancer! Also, some coworkers are doing it as a relay and it's a super fun race. I just need to be kind to myself about the results and not compare to how well/fast I ran it last year (at the time it was my fastest race to date, but I did one a few minutes faster the weekend before my mastectomies).

My primary provider wants me to see an infectious disease specialist about my weird labs. *sigh*.

Met with the med oncology NP yesterday. Started Tamoxifen yesterday too - taking it at night thinking I'll sleep through some possible side effects even though I don't think it works that way. Meara - so happy to hear you haven't really had any side effects on it! That gave me hope! I also asked her what % I am ER and PR positive for my tumor and they couldn't tell me - can't find it in any of my path reports. Seriously? They are looking into it and if they can't find it they will have my tissue re-tested. I also asked about having my Mirena IUD removed because it release progesterone. They said no need to. Hmmmm. On another discussion board most women report they were told to have it out.

Next weekend I'll head out on a road trip to Bend OR. woohoo! 2 days of driving there to stay 4 days and then drive back to attend a day of the Telluride Bluegrass festival. Hooray! Feel like I'm not working much because of trips (for various reasons) and I have soooo much work to do - feeling stressed about it. Trying to let go of that and not let people expect so much of me so soon. I still get to take real vacation. The few days off I took for actual chemo and working remotely during radiation was not a vacation!!

So glad you're getting better igay1ord - infections can be very scary...especially these days when we hear more and more about bacteria becoming resistant to the drugs we have. Congrats on finishing up rads!!

Cherey - the fluid in my drains was always reddish. Started out sanguinous (bloody) then changed to sero-sangiunous after about 10 days, which is lighter red and more watery (its a mix of serous fluid and some blood). They only seemed to care about the volume, not the color

HAIR! It is finally pretty even and thickened up enough to be really covering my head. I even trimmed it by the back by my neck. Now I just have to figure out how to grow it. I wear a hat at night to keep it flat and going to the side I want it too. I know I promised some pics many many days ago...I'm getting there...just so busy I haven't had time to download them from my camera to computer.

Hoping to get on the surgical schedule for some fat grafting in 3 weeks. Wish they would call me back about a date. I'm more concerned about it than the mastectomies and axillary node dissection.

Meara - have you rescheduled your solo weekend/adventure/trip?

OK - I'd better get to bed. Goodnight you wonderful women!! xoxoxo