Starting Chemo in October 2015

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  • MDW1967
    MDW1967 Member Posts: 138
    edited June 2016

    Hi ladies! I hope everyone is doing well. I really miss hearing how everyone here is doing.

    I need to page way, way back to find it, but I remember at some point that folks in this thread were sharing Facebook addresses. At the time, I didn't because I wasn't yet "out" about my cancer diagnosis on FB. But eventually I did come out of the cancer closet. ;-) So if anyone wants to connect via Facebook, too, please feel free to friend me. My FB is Meara Day Williams.

    Things have been going pretty well. The replacement tissue expander is still behaving. I'm getting my exercise routine back on track after being super cautious after the last surgery. But I've started adding a little running in with walks and it's not causing irritation/inflammation. My target for reconstruction is September. It could be as early as August, per my PS, but my husband and I are starting to plan a little trip to Michigan in August, and I'd rather do the surgery after that. I'm really looking forward to getting away. My husband's family lives on the Lake Michigan, and we're thinking of also doing a short road trip to the Upper Peninsula, which is supposed to be gorgeous.

    On the *potential* travel front, this week it came up at work that I might need to take a trip to London over the next month or two. I've never been to the UK, so it's exciting. It's for work, so I'd mostly be sitting in meetings in office buildings, but I would try to extend the trip by a couple of days to sightsee a bit.

    This past week, I had an appointment with a "Survivorship" RN at Stanford. It was interesting. I guess they created a survivorship discipline there to assist folks coming out of cancer treatment as they're trying to return to normal--or a new normal--as well as keeping their ongoing overall health care on track. She told me that it's not uncommon for people coming out of treatment to be pretty sick of medical appointments, sick of taking meds, etc., and they sometimes stop taking care of the standard, non-cancer stuff. I can relate. I'm not even done with treatment, but find myself increasingly tired of appointments. going for my Herceptin infusions, missing days here and there with the Tamoxifen, etc.

    Andra: Hope you had a good time at your race yesterday! You're a trooper to keep signing on for things like that while you're still getting back to full strength. It's good that you're focusing more on just being there and having fun, and less on the results. I hope the Tamoxifen isn't affecting you too much. I'm detecting a slight uptick in hot flashes at times since starting on it. That's all I've really noticed so far. It's strange they couldn't find the percentage of positive for ER/PR in your records! I hope they can track it down. You'd think it would be in the original biopsy report, at least.

    No reschedule as of yet on my solo weekend away. It's in the back of my mind, but now talk of other travel is starting to percolate, so it's harder to focus on. Also, now that it's summer tourist season, hotel prices are shooting up. Boo. I might be better off waiting until the fall.

    Glad to hear your hair is coming in strong! Mine is filling in more and more, too--it's actually looking more like a super short pixie at this point. And I really need to have my husband shave the back of my neck--it's shaggy! ;-)

    Off to take my son to the pool now! Hope everyone is enjoying the rest of the weekend! xoxo


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  • igay1ord
    igay1ord Member Posts: 193
    edited June 2016

    Hi all! Cherey & MDW...Sorry I haven't answered your questions about my port & the infection, but I've been in Iowa the last few days for my husband's family reunion!

    As far as knowing how my port was infected, I was sitting at my desk after lunch and all of a sudden it felt like someone just stabbed me at my port site. After about an hour or so, the pain traveled from my port up across my right shoulder, down my right arm. Of course, what do I do but search the internet and come up with it possibly being a blood clot. Scared me to death! It was 3 weeks to the day since I had my Herceptin infusion. By the time I got to the emergency room, my port site was bright red and very painful. The infectious doctor has since told me they believe the infection has been dormant in the port ever since it was inserted in my chest. I'd always had some soreness/redness since I got it, and the doctor said it finally just came alive! I'm supposed to have my Herceptin treatments til the end of October, but luckily Herceptin can be done by an IV and doesn't need a port. Tomorrow is my last IV antibiotic, so they're taking my PICC line out on Tuesday! Yay! Then finally I won't have any foreign objects in my body any longer!

    Have a great Monday everyone!

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  • Andraxo
    Andraxo Member Posts: 410
    edited June 2016

    Meara - I found you on FB but whatever setting you have don't allow for friend requests. Mine used to be like that when a few others here couldn't send me one, so I finally figured out my setting and changed them. Maybe you can find me - Andra Battocchio. :) So happy to read that things are going well, and...you may get to do some traveling!

    Hooray igay1ord - PICC line out tomorrow - woohoo! THAT is great news!

    My half marathon was pretty awful. Stupid idea thinking I could do one so soon. Half way I was favoring my hip pretty badly and of course I still have Achilles tendonitis, but I kept going and did it because... F^%! cancer! Still hopeful I'll feel like ME again 'someday' in terms of exercising. Most people would look at a 2 hour half marathon at my age as pretty awesome, and in many ways it really was pretty awesome given the year I had, but it felt terrible physically. Cardiovascularly I felt great - no problems breathing/didn't feel hard on my heart, but that is because my legs (joint/muscles/tendons) are still problematic.

    Primary care dr started my infectious disease work up. Crazy amt of labs today and chest xray. No results yet. Bummed I can't look at my own chart anymore from my desk at work due to a hospital policy change.

    Fat grafting sched for June 22nd.

    Have a super week!

    - xo

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  • MDW1967
    MDW1967 Member Posts: 138
    edited June 2016

    Andra: I found you on FB and sent a friend request. Thank you for the heads up on my settings! I went in and changed that. There must be a system default to only allow friends of friends to friend you, unless you open it up to everyone. Never even knew that!

    I do look at a 2-hour half marathon as pretty damned awesome! I am sorry it felt so awful for you. You are one determined lady, to grind it out even when you were hurting.

    I hope you get some helpful answers from all the tests the infectious disease specialist ran. And good luck with the fat grafting!

    Not too much new over here, although I've been starting to run again a little. I'm still so far from where I was pre-cancer, but I can feel that I'm getting a little stronger. I, too, am plagued by legs that don't want to cooperate. My cardio isn't bad, and my overall stamina is ok. But the legs still feel stiff and heavy. I hope in time that will change. Just getting out there and running even a little makes me feel good, psychologically, though. I feel like I'm reclaiming my body and my life.

    Onward and upward! xoxo

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  • Andraxo
    Andraxo Member Posts: 410
    edited June 2016

    I'm so with you Meara! pushing through stiff heavy sore legs because of what exercise provides psychologically. Hooray for reclaiming your body and your life! And...hooray FB friend! :) I don't post much myself on FB except an annual summary, but people tag me in things and I like to see everyone else's pics etc.

    I haven't even figured out what city I will need to travel to for an infectious disease specialist. None in my insurance network in Santa Fe. 2 though in Durango Colorado. My one crazy lab is a lot better! Still double the top end of the range but it's not 8x the top end. Everything else normal. Just waiting on the check for parasites (!) - that will take a week or two. Hoping it's just a bunch of nothing in the end.

    Whew - I just stood all day for 10 hours of work. My knees hate me. Need some couch time for a bit, then I have to bake some cookies for our road trip.

    It's almost the weekend - Yay! :)

    - xo

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  • MDW1967
    MDW1967 Member Posts: 138
    edited June 2016

    Andra: I probably post on FB too much, personally. What an ungodly time suck and distraction it can be! But I'm glad to have you and Gabriele as FB friends now. I know that if this thread dies off entirely eventually, I'd really miss hearing from everyone.

    I'm glad your crazy lab is at least less crazy than before--and I hope you don't have to go too far just to meet with an infectious disease specialist. Getting tested for parasites would be a little disconcerting, but I'm sure they're just trying to rule things out. I hope, as you do, that all of this ends up being a big nothing in the end. Maybe just some quirk of the body righting itself after being bombarded with toxic drugs and radiation.

    My knees are killing me today for different reasons than standing: I've been waging war on the weeds that have taken over the landscaping in our front yard. After I started chemo, we paid someone to pull weeds for us, but now that I'm better, I feel like I can do it. Pulling weeds is weirdly satisfying for me. It's back-breaking and knee-breaking, but something about digging out a dandelion root makes me feel like I've really accomplished something. ;-) The problem is, it's been awhile since we had anyone weed, so there's a crazy amount of stuff to pull. I've resigned myself to doing a little at a time...too hard on my body to do it all at once.

    On the hair front...my hair has really filled in, but it's doing interesting things. Cowlicks everywhere! I have this tiny little "fauxhawk" ridge at the top of my crown where two cowlicks seem to be meeting in the middle and the hair is sticking right up. It's pretty funny. Starting to think about taking a shot at coloring it pretty soon.

    I'm procrastinating right now and need to get back to work. I've been working on a little writing project for work that I'm having a hard time finishing. It started out way too long and I need to chop stuff out of it, but that's proving harder to do than I expected. Oh well. I'm going to go make some tea and get my nose back to the grindstone. I've been getting much more on track at work again after feeling very out of it for awhile. Chemo brain fog is less than it used to be, but still a factor. Anything requiring a lot of analytical sharpness is a real slog.

    Wishing everyone a great weekend! xoxo

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  • Cherey
    Cherey Member Posts: 12
    edited July 2016

    Thanks to those that answered questions for me. I wanted to check in again with you all. I just finished my first week of radiation. I am moisturizing my skin like crazy and trying to keep that area of my body covered to protect it from the 100° temperature. So hot! I'm using aloe vera gel and a lotion called derma e. I am nervous about how damaged my skin will get and if it will be painful. Are you all currently doing radiation?

    I am also doing physical therapy 1Xwk as well which has really helped me get my range of motion back after surgery. I have to admit the first couple sessions were PAINFUL. But after doing the home work stretches it got easier each week. I am still stretching 2xday to maintain. Also started some strength training with the physical therapist. I am eager to get back to my Body Pump class but that will take time.

    I am so glad that I've been able to sleep comfortably the past 2 wks. Before that this expander was a nightmare! And I am also happy to feel comfortable to wear my short hair out. I had long curly hair before. So now hair maintenance is so easy. It's nice to feel hair again!

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  • Kimmer33
    Kimmer33 Member Posts: 386
    edited July 2016

    hi ladies!

    Hope you are all doing well today! Havent posted in forever, just trying to move on and enjoy life after all this crap.

    A month ago I had my IUD removed, which had kept me period-free for 4 years. So during chemo/rads, no period, so didnt actually know if chemo put me into menopause or not. Until a month ago i decided to have it out and my doctor said it's best if it gets taken out now to avoid any recurrence. Done. But now i have been spotting for the past 4 weeks and today, actually bleeding and having all those period-like symptoms. So now i am actually wondering if i am not post-menopausal. I am going to have bloodwork done omorrow which will give us some answers.

    But my question to you lovely ladies is have any of you experienced this? I also wonder if i am having periods again, my body is obviously producing estrogen again, and estrogen is NOT something i want in my body at all, as my cancer was highly estrogen positive. Am i on the right track in my thinking??? Or way off?

    I added you, Meara and Andra, on facebook :)

    Kim

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  • MDW1967
    MDW1967 Member Posts: 138
    edited July 2016

    Hi Kim! I was happy to see you on FB, too. :) I haven't checked in here in so long.

    I wonder about your period coming back. You're on Tamoxifen, right? I was under the impression from my MO that that Tamoxifen usually suppresses periods. I was very pre-menopausal before chemo (still having super regular periods), but after chemo and being put on Tamoxifen, I haven't seen any evidence of my period trying to come back. I hope the blood work gets you some answers!

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