Starting Chemo in April 2014

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  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    I have to share as I believe there are fellow Outlander fans on this board. I just received this as a wedding gift from my friends in the Highlands!  I am now the proud owner of a 1 ft sq. piece of Highland property making me a Lady!  So perfect because my nickname is Lady J! 

    image

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    We really do need a like button.  The dog pictures are wonderful.

    Makelemonade - I am always entertained by those agility trials.  The dogs are so quick and SMART!  I saw a video of a dog that threw its own ball with a contraption that someone made.  If I can find it I will post the link.

    Food tasted horrible when I was on Xeloda.  I could only eat scrambled eggs, spinach, pork sausage, dill pickles and olives.  I could drink only cider and orange juice.  I drank water but it tasted flat.  Oh, and I could snack on Good and Plenty candy. 

    Taxol has given me back food and an appetite.  I am surprised I haven't gained weight.

    When did those who have cut their hair make the decision.  I have the same coverage all over my head but it is very thin and my scalp is quite visible.  I did wear a wig the other night because I didn't have time to wash and arrange the head so that it looked like I had hair cover.

  • Swissmiss
    Swissmiss Member Posts: 111
    edited June 2014

    Lady J...love it! I just started the Outlander series, but I've always had an obsession with the Highlands...I don't have a Scottish bone in my body, but oh I would love to visit one day!

    I adore all your puppy photos! Wish we had a dog...we had actually purchased a beautiful viszla puppy right before my treatment began, but had to back out since we knew I'd be his main caretaker. A new puppy with surgery and chemo would not have been a good idea for us. Maybe next year. 

    I had my second DD Taxol last Wednesday.  I feel grateful that the nauseous tummy is a thing of the past.  Muscle and joint pain is quite severe, but by day five it is tolerable.  I think if I only ever had Taxol I'd be in a good place emotionally.  But after those long weeks of DD AC I feel worn out, both physically and emotionally.  I feel like I started this journey a healthy woman, but today I feel only a fraction of the strength (emotional and physical) I used to feel.  

    I see that there are many treatment plans that include naturopathy.  My treatment plan is very bare bones, and I feel like I could have benefitted from supplements or other complementary care that would address my ever-sinking emotional and physical state.  Thinking out loud: I wonder if I should try to seek complementary care on my own? 

    Thank you, Ladies for all your wonderful posts and updates.  You all keep me above water!  Wishing you all a beautiful summer day to enjoy!

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    jbokland - Yes, an Outlander fan here!  Have you read the latest?  I am half way through.  Have grandkids this week so not much time to read.  Perspective!

    There is a great Outlander group on FB if you are interested.   Jamie and Claire and escape go together.


     

  • ColdInCanada
    ColdInCanada Member Posts: 95
    edited June 2014

    Happy Monday Ladies! Feeling SO GOOD this week. Enjoying some quality time with my babies. More on that in a minute.

    clarrn - My boler-envy has increased dramatically. JEALOUS and HAPPY for you at the same time.:)

    MameMe - Perri LOOKS like a puppy and most days she ACTS like a puppy, but she is, in fact, FOUR-years-old. I hope she never loses her puppiness. :)

    Sharon - YES. "Personality-plus" describes Perri perfectly. :)

    SO, when I met with my oncologist after Round 1, I asked him a very important question. We homeschool, and one of the things we had planned on doing this spring was raising caterpillars to butterflies. So, I asked my MO if this was something I could do. The LOOK he gave me, and the SILENCE that followed - I couldn't help but laugh. I am the ONLY person who has ever asked that question, and he had to think about it for a minute. BUT THEN, he asked ME a question. "Is this important to the children?" he asked. "If it's important to the children, then you should do it." 

    THAT. That RIGHT THERE puts his name on the list of Angels I have met on this journey. WOW, right? He saw me as more than just a patient; he saw me as a PERSON. 

    And, OF COURSE, we raised the caterpillars. We started with nine (and the children NAMED then all), got nine chrysalids, and NOW we have nine beautiful Painted Lady butterflies. The children are DELIGHTED (as is their Mama - how COOL is this?), and I am SO thankful the butterflies emerged during my Good Week. We'll be releasing them on Thursday, the day before Round 5. Awesome. :)

    image

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    Lemonade, I love that you went for agility trial competition. That is wonderful. You have to really know your dog and know your leadership skills to get that ribbon. Nice going!

    C in C, You also get a medal for being creative and engaged with your bambinos while undergoing chemo. That takes commitment, stamina and LOVE.  The little fellows will be learning a lot, and not just about butterflies. 

    In case I hadn't mentioned it, I am super inspired by so many of you, and also, can identify with all who share so candidly of the difficulties on this path. Hugs all around. 

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    Your furry friends are all so lovable and love your butterflies and the story of them Cold!

    I had my first consult with an occupational therapist today to see what can be done about my lymphedema.  Not excited to have to wear compression garments but at least hopefully it will decrease the swelling and keep it mild when I go through radiation.  And physio will start soon to help me regain all my range of motion and keep it.  Bonus:  I mentioned that I was frustrated with the weight gain during chemo and the OT said the physio lady will make me a personalized workout plan :)  

    Finger nails really sore this week. 

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited June 2014

    Cold, I raised butterflies too!  But not on chemo!  You deserve a medal!

    I want to get that butterfly kit for my grandkids, it was a great experience.

    Anyone experiencing neuropathy?  It comes and goes randomly which I'm hoping is a good sign that it may just go for good at some point.  

    Today starts the last week of chemo if Sloan agrees with my local doctor.  It terrifies me to stop treatment.

    I want those evil cells zapped, all of them.  But the chemo does take a toll.  Waiting for the consult to come through...

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Timbuktu: Today is the first day when I think the pain in my feet is more than just not wearing the right shoes. It feels like the skin is literally scraped off. I hadn't been wearing sandals much - - but since being back at work, I have, and today it was not a good day for walking. Ugh. I'm still hoping it's not that - that it's just bad shoes. But they are not new. I don't think I can be in denial any longer. But I have no Taxol this week (H only) and next week vacation, so I get two weeks off before my last 3 Taxol, so maybe I'll get some recovery going on. Good luck to you in deciding how much further you have to go. 

    I heard this saying today and I love it: In the end it always gets better. If it's not better, it's not the end. 

    XOXO ladies!!

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited June 2014

    Do you have tingling?  Pins and needles?  Sometimes it hurts, especially in the beginning, but now it's more like when your foot or hand falls asleep.  It's weird because it has nothing to do with anything I do.  It moves from one hand to the other, one toe to another, with no rhyme or reason.  I just hope it goes!

  • clarrn
    clarrn Member Posts: 557
    edited June 2014

    I have the random pins and needles and tingling too.  Lasts 5-10 minutes for me and moves around too.  Also hoping that means it won't be a permanent souvenir!

  • mmtagirl
    mmtagirl Member Posts: 509
    edited June 2014

    I am now wishing I had a dog after seeing all these fabulous pics!

    Today would have been a good day for some Luvin' on me, too!

    Blaming it on chemo pause which has finally arrived and hormones making me overly sensitive.  I'm at the end do week 2 so can't blame the SE's.  Best I have felt in a long time, except for being so dang emotional!

    Just get tired thinking about 12 weeks of taxol starting 7 days from today.  I am anxious knowing I didn't tolerate Taxotere very well.  Ok. Maybe having my only graduate high school, have her party on Friday after attending a gazzillion other grad parties, and next Tuesday sending her off to Eastern Europe on an educational tour.  Oh, and attended university orientation last week.  So many beginnings and endings but all blessings.  Not sure why all I want to do is cry today.

    Thanks for listening.  That's all I needed ....

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    MMTA, That roster of activities would be totally overstimulating for me, esp. since I would feel I had to show up no matter how I felt. Tuck in for awhile if you can, rest up, get yourself back. Your emotions make total sense to me!

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    mmtagirl - you would probably be crying about all of that without the added chemicals.  That is an emotional time.  My kids are in their 40's and I still cry when they leave. 

    I just heard from my DIL that they are getting a puppy, a Great Dane!  It will be so great to have another baby on the property.  I see more dog pictures in my future.  I have never been a dog grandma before. 

  • SharonDe
    SharonDe Member Posts: 222
    edited June 2014

    Just wanted to say it was nice to see Swissmiss and Make Lemonade check in, I was just wondering how they were doing.  Hope the other gals who haven't stopped by in a while are doing well.

    Mmtagirl - agree - you've been through a very busy and emotional time, even without chemo effects.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited June 2014

    thanks for the words of encouragement.  I am not usually like this.  Woke up in the funk.  Hated having to put my wig on, get my bloodwork, go to work and have to act like everything is great knowing I have three more months of this same routine.  I have to keep reminding myself, one day at a times!  Thanks for listening!

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    mmtagirl: I totally get it. I've been way emotional too. And I don't have a graduate. I have a senior now, though. Like Mame said - - get some rest. Everything usually feels better after some sleep. 

    Timbuktu: I'm not sure. It's definitely not like the pins and needles I was getting in my arm before PT. It's more like the skin on the bottom of my feet is super sensitive, like when you walk a lot without shoes or whatever. Maybe like when you're getting a blister. But there's nothing there. I hope I just wore the wrong shoes and walked too far on my way to the client office today. I have an H infusion tomorrow, so I'll bring it up with the nurse. I hope yours goes away permanently and soon!! You too Clarrn!!

    Brigadoon: I love great big dogs! Great Danes are so cute. I would love to have a Great Pyranes (sp?) but I don't think I could stand the hair and drooling. Although my lab does plenty of shedding. I would imagine being a dog grandma has the perks of being a kid grandma - all the play, none of the harder stuff like potty training! :)

  • LovebeingNana
    LovebeingNana Member Posts: 134
    edited June 2014

    mmtagirl - Just let it out girl. Looking ahead to 12 weeks of chemo and having your daughter graduate and sending her away are enough to earn you some tears. I have just come to realize during all of this I just need to really let it out sometimes. Actually a lot lately. Can I say though great job Mom, sounds like you have a wonderful daughter. :)

    Timbuktu - I don't have any of the pins & needs but I have taken L-glutamine & B6 from the start. 

    Jhodro - I hope your feet get better with the break - that is miserable. :(

    I leave on vacation in 3 days. Need the vacation but I am a bit nervous….I don't have energy yet. AT ALL. Traveling seems exhausting to me right now. 

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    To all the cryers out there.  (myself included)

    My sister called me today to tell me some bad news about a close friend of hers.  She felt so bad because she can't cry.  She hasn't been able to cry for a couple of years because of some medications she takes. 

    I don't want to be on a jag for days but I do think crying is a good thing.  Sometimes words just don't express the depth of our feelings - happy or sad.

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Thanks, Lovebeingnana. I hope you get some energy so you can enjoy vacation too!!

    Brigadoon, you are so right. I guess we take for granted certain things. Sorry for your sister and her friend.

  • jbokland
    jbokland Member Posts: 890
    edited June 2014

    Timbuktu - I suffered from "hand and foot" at the beginning of Taxol. My skin DID slough off my feet and very tender.  The doc gave a specific skin care kit, I did foot soaks everything night and icing during taxol to resolve. 

  • Mompv
    Mompv Member Posts: 110
    edited June 2014

    cold good for you for homeschooling! I did it for 7 years. My DD' s went on to high school and college. My oldest even spent a semester in Spain studying Spanish . My youngest is a senior  in college this year and getting married next summer. They tell me some of their favorite memories are mummifying the chicken and the numerous field trips we were able to take. So many advantages!!!!

    I have my 2nd AC this Thursday! Head has been tingling but still there! Less stubble on legs though. 

    Good day to all of you this week! Hang in there all! We can do this!!!! One day at a time!

  • MameMe
    MameMe Member Posts: 425
    edited June 2014

    I used to work for a retreat center that had a very dynamic weekend workshop for grieving and resetting one's emotional self. They had the best collection of music for crying, it was amazing! I think of that sometimes, because I resist my own tears like crazy, and could use a soundtrack to get me over my substantial defenses and into the emotional flow. Anybody have tunes that help bring the tears?

  • brigadoonbenson
    brigadoonbenson Member Posts: 412
    edited June 2014

    Mameme - Any protest song - We Shall Overcome, Where Have All The Flowers Gone,  etc.  Also Imagine, Vincent, Un bel di, La Mama morta, In My Life I Ove You More,  - the list goes on. 


  • Longislandl8y
    Longislandl8y Member Posts: 145
    edited June 2014

    My little guys are "designer mixes" (aka fancy mutts, lol).  Cali is a cava-poo (Cavalier spaniel/Poodle) and Jack is a hava-chon (Havanese/bichon).  They are the sweetest dogs in the world and they definitely help me get through the dark days. 

    Someone on here mentioned that their YMCA offered free classes to cancer patients so I decided to do a google search to see what might be free here.  Lo and behold I found free exercise classes which are actually being held at my cancer center! Would have been nice if someone mentioned that to me sooner.  I am very into exercise but I had to stop after the 2nd infusion because of sickness and fatigue.  The classes I took pre-cancer treatment were too high impact for me to participate while on this little adventure.  My cancer patient classes start this evening and run every week for 8 weeks.  I'll let you all know how that goes :)

  • MomMom
    MomMom Member Posts: 523
    edited June 2014

    Longisland, They are adorable and look very similar.  I go directly to a free Life With Cancer yoga class following my weekly Taxol treatments. After that I stay for a guided meditation class.  Twice a month I have a Reiki session - all free thru LWC.  I still go to the gym every day or get on the treadmill at home and take a Pilate's reformer class. I've always exercised and my MO thinks it's a big factor in tolerating the chemo well so far. Good for you that you've discovered the free classes and hope they give you extra energy!

  • mmtagirl
    mmtagirl Member Posts: 509
    edited June 2014

    Hi all, just popping in to let you know I am much better today.  Got in some good exercise two days in a row and I think that has helped a lot.  

    Really appreciate all your support and helping me feel ok during my downer time.

    Namaste!

  • jhodro
    jhodro Member Posts: 240
    edited June 2014

    Great for you mmtagirl!

    I had my first gym work out with the PT person at the BC survivors place. It felt really good to get an hour in. And, as a bonus, I met some other fellow warriors, 2 ladies were there working out, who are more than 10 years out!! They were talking about their chemo experiences as well. One recommended Accupuncture for the neuropathy, which I'll try.

    MomMom: great that your center offers those services for free!! I do Reiki a couple times a month, I do have to pay, but I feel like it's the best way to relax. I would love to do it more often!!!

  • mmtagirl
    mmtagirl Member Posts: 509
    edited June 2014

    Jhondro, I used acupuncture last summer for some pain down my arm and hand caused from cervical disk herniation. I had some neuropathy in my fingers and the acupuncture really helped.  After about 4 sessions the pain was gone.  It was also a completely relaxing experience....even more so than a full body massage for me.  I highly recommend trying it.  Good luck.

  • MomMom
    MomMom Member Posts: 523
    edited June 2014

    mmtagirl,  At the advice of several, I began getting weekly acupuncture treatments to prevent neuropathy.  You are so right, it is completely relaxing!  However, yesterday some of the needles seemed much more painful at insertion than in previous treatments.  I asked him why and he said it may be because my chi was strong.  Have you ever experienced that?  Once they were in though, I totally zoned out as usual.  Thanks!

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