NINJALINDA   107,585
SparkPoints
100,000-149,999 SparkPoints
 
 
NINJALINDA's Recent Blog Entries

Chemo

Saturday, November 29, 2014

Well, here I am almost halfway through the first type of chemo I have to take. I'm still alive - yay! Other than that fact, life as I know it is pretty darned different.

In some ways chemo hasn't been as rough as I expected it to be, but in other ways it's been worse than expected. I'm learning in many ways that I just can't 'expect' or count on things being one way or the other! I expected to be dealing with lots of nausea. There has been some, to be sure, but not nearly as much as I expected. What I've had more of is just an unsettled digestive system, and pretty much a total lack of appetite. Not nearly as bad as I expected. On the other end of the spectrum is the fatigue. I didn't expect to be hit so hard so fast, but that's how it's been. Makes me really scared for how that aspect will be after the next two treatments (and the twelve to come of the 2nd round of chemo).

Other surprises - the two chemo treatments I received so far did not affect me the same way. I really thought I'd be facing the same ole, same ole each time (when receiving the same chemo drug), just probably a bit worse with each subsequent treatment. Nope, treatment #1 was totally different in effect from #2. Wonder what #3 will be like? I'll know soon. Also unexpected was how fast I'd start losing hair. Two treatments down and I'm all but bald. That was fast!

I think the biggest shocker for me is the one thing that shouldn't have surprised me. It's the fact that I have zero ability to set my mind right and just *power through* this. Chemo totally and completely dictates what I can and cannot do. It is large and in charge, and I just have to deal with it. I am so used to just getting my stubborn on and being able to push aside (most) any challenge. Chemo laughs at that, and then knocks you on your butt.

This round of chemo will end with my 4th treatment on December 16th. Then I get a 3 week break before I start the next type of chemo the first of the year and running through the end of March. Then I'll be looking at a mastectomy, and then radiation, unless the plan changes sometime mid treatments. Presuming no changes, I guess I'll be finished with this mess sometime mid-summer. Not one to wish my life away - especially now - but I must admit I will be glad to get to the end of this season in my life.

So far I've been continuing to work as much as I can, which admittedly has been a lot less than I thought I was going to be able to do. Work has been excellent in letting me work from home a lot, and this will probably be more and more as I progress through treatment. I won't be surprised if (when?) the time comes that I just have to go out on disability. I know that if not before, it will happen when I have to have the mastectomy.

So...that's where I am in this. My family has been wonderful, my co-workers have been very supportive, my church family has been great. Being loved is awesome. With any luck, this journey will lead me back to incredible health as well.

  
  Member Comments About This Blog Post:

LIGHTNINGRUNNER 12/6/2014 4:11PM

    You are a warrior

Report Inappropriate Comment
BBAHONORS 12/4/2014 9:43PM

    emoticon

Report Inappropriate Comment
-POLEDANCEGIRL- 12/1/2014 11:17AM

    That is wonderful that you have a great support system. Being strong is huge and having a positive attitude makes a big difference. My Aunt was very strong willed and that is what helped her.

Report Inappropriate Comment
CALLIESWEET 11/30/2014 9:55PM

    I'm glad to hear your friends and family have your back during this difficult time, and it's great that work is flexible so you can focus on healing. Thank you for updating. I've been thinking of you. Take care!

Report Inappropriate Comment
ARUNNINGKAT 11/30/2014 2:40PM

    Linda, your determination and positive outlook in the midst of this tough journey is amazing. Hang in there! I know that there is nothing easy about this journey for you and I am glad that you have supportive family, friends and co-workers. I wish that I lived closer so that I could help you out too. emoticon

Report Inappropriate Comment
SUZANNE65203 11/30/2014 9:43AM

    Linda: I am glad to hear how you are doing which sounds like about as good as can be expected. While you have had to surrender control and cannot power through as usual, I can still hear your strong positive attitude in what you wrote and that makes me believe you are going to get through this just fine. You are in my prayers!

Report Inappropriate Comment
SIMPLELIFE4REAL 11/30/2014 7:33AM

    Linda,

I have been thinking of you a lot and wondering how you have been doing. Since I had Taxol first and then AC, I wasn't sure how quickly the AC would knock you down. It knocked me down flat with #1 and I was down for the count. Taxol is usually easier on most people and I hope it will be the same for you when you get there. Some people start growing hair a little too while on Taxol. I didn't lose my hair completely until the AC part....AC is just rough pretty much all round.

I'm glad the nausea isn't too bad for you. It was the thing I couldn't shake while on AC...it wasn't nearly as bad on Taxol and I didn't need meds every single day for it with Taxol. Some people don't have it at all on Taxol. Since it hasn't been too bad for you on AC, the chances are really good that you may not need much medicine for it on Taxol. The anti-nausea meds cause so many SE's on their own; it would be great for you if you don't need them much.

Since I had my AC in Dec. and Jan., I joke that I hibernated those two months last winter. Sleep is your friend. Do it all you want! Your body is working SO HARD right now just trying to maintain itself. So much is happening on the inside right now....all the normal cells that are getting killed off are trying to rejuvenate themselves. It's A LOT of work. No wonder we are so fatigued during chemo!

Isn't that fatigue amazing? It's really different from normal tiredness.

Can you feel your lump yourself? Has it gotten any smaller? With Taxol, mine shrunk about 50% the first six weeks and then just seemed to sit there. With AC, it shrunk more after #1 and then seemed to get a little bigger. With AC#2, it really shrunk and I couldn't feel it after that. At the time of the surgery, there was no cancer found in my breast. Unfortunately, I still had a small amount of cancer left in two nodes when they did the ALND so I didn't get a pCR. I hope you get a pCR. It will be absolutely wonderful if you do. I felt the AC was much better at killing off the cancer than the taxol was. I even asked my MO if I could have a 5th infusion of it! She, of course, said no. It's too hard on the heart.

I really get what you are talking about with not being able to power through things. That is so true. I still feel that way today....almost a year later. My strength is almost back to normal, but if I overdo it, I sill pay for it with fatigue and end up having to sleep. At this point, I can do pretty much all the things I used to do but I just have to be more mindful of not overdoing it. I figure my number one priority for the next four years is to not get cancer....if I wear myself out, I don't give my body the chance to fight cancer as well, so I'm more interested in moderation these days.

Do you know if you will be getting an ALND? They changed the guidelines last March right after I had mine so you may not have to get one. If they tell you that you don't need one, be very glad! It is the one thing that has impacted what I can do. I don't have lymphedema, but I have a very high lifetime risk of getting it. That risk has made me leery of doing the self-supported bike ride around the US that my husband and I had planned on doing right before I got diagnosed. I'm worried that riding 50-75 miles a day would put too much pressure on my arm. I'm looking into recumbent bikes for that reason (we sold the tandem that we used to have that is pictured on my SparkPage).

I'm delighted you are getting so much support from family, work and church. That outpouring of love is so helpful. I was wondering how things were going with meal prep and stuff. Do your boys do that for you? I had zero appetite too, so the last thing I wanted to do was cook. It's hard to explain to others how food tastes like cardboard. That part was pretty much the same with both Taxol and AC, but I think the digestion problems were worse with AC. Again, it's a little hard to compare because we did them in a different order and it's hard to know which things got worse because it was cumulative.

I agree, it some ways it's not nearly bad as expected. I thought I would be hugging the toilet throwing up all the time and I only threw up once. It was my own fault. I didn't take my anti-nausea med on schedule about three days after one of the AC treatments because I slept through it. That taught me that I needed to set an alarm to take it on schedule for the first few days.

Did your head hurt as the hair fell out? That's kind of weird too. It's the things people don't think about that can be so annoying! It actually feels better when it's gone and it's sooo easy to take care of.

Are you a member of the "must have kleenex everywhere you go club" yet? Like I told you before, it was the lack of nose hairs and eyelashes that bothered me the most...drip...drip....drip! Fortunately, those hairs come back first and they came back very quickly.

This time next year, chemo and the rest will be a dimming memory for you. For me, the onset of cold weather brought back a lot of memories of chemo because things started getting bad for me about the same time the weather got cold. Thanksgiving was such a contrast between this year and last year. Last year, I couldn't go near the kitchen and my husband did all the cooking. (My biggest challenge was to just stay out of the way.) This year, I happily did all the cooking and was so grateful to be able to actually taste the food at our family get together. Hopefully, this time next year, you will be enjoying cooking and eating like never before. BTW, I think taste buds also come back very quickly.

It seems like the things that go fast with chmeo also come back fast too....except for hair on the head....that felt like it took FOREVER to even get peach fuzz....but it does come back!

Is you next infusion on Tuesday? That's great you will be getting your chemo break over Christmas and New Years. Chances are that you will be feeling somewhat reasonable for both of those holidays.

I'm really hoping that you find the Taxol much easier when you get to it. People tend get into a rhythm with that one going every week.

I know I've said this to you before, but I just want to say again....beware of those steroid crashes. I thought I was just going through bouts of depression or fear about cancer until I realized they were happening like clockwork about 2-3 days after each infusion. I was sobbing on the floor in a puddle each time until I FINALLY figured out it was me coming off the steroids each time. Ativan became my friend on those days.

I'm really sorry you are having to deal with all this. It's a lot harder than people realize, but it is all doable. It was a HUGE lesson in gratitude for me and continues to be so. So many things that I used to take for granted (like combing my hair or tasting food or being able to wake up and easily walk to the bathroom), I don't do any more. Just being able to go shopping and not need to take a nap afterward feels like a gift. I continue to be grateful every day now for the small things.

One last thing.... have you watched any YouTube videos on makeup or scarf tying? When I lost my hair, I spent several hours watching them to figure out about eyebrow application etc. There are some wonderful ones out there. If you are interested, I think I bookmarked some of them and can send you some links.

Okay...that's enough questions and rambling from the peanut gallery. I just can't tell you how often I have thought of you over the past weeks and wondered how you were holding up. It was wonderful hearing from you.

Hugs,
Kay



Report Inappropriate Comment
LIVE2RUN4LIFE 11/29/2014 12:39PM

    I'm so glad to hear from you. You are in our thoughts and prayers.
emoticon

Report Inappropriate Comment


Cancer

Saturday, October 25, 2014

That's really an ugly word, isn't it? Cancer. As far back as I can think in my family history, no one had it, other than my Dad with prostate cancer. Now, it's striking my house for a second time. This time it's me, with breast cancer.

I've been having mammograms since I was about 35, and never a problem. Just had one in March, and it was beautifully problem free. Heck, I didn't even have a hint of a whiff of a clue that anything was amiss until mid to end of August. But the diagnosis came on October 21 (two days after my birthday - surprise!). Given the speed with which this came on, and the fact that it's in my breast and the lymph nodes of my armpit, it seems that I have an aggressive cancer. Yay me.

Of course, the first thing I thought of was my kids. They just lost their dad to cancer (brain tumors) a short three years ago. This feels like piling on. It certainly is not fair. But life is often not fair, isn't it? No need to dwell on those thoughts. Time to do what I can.

So for a while I won't be thinking of weight loss and fitness goals, though weight loss certainly may happen with treatment, and doing whatever I can to be as fit as I can would be my best course of action. But the main goal will be treatment. Effective treatment. And survival. That's right there at the top as well.

Thanks for reading. If you want to send up a prayer or send me some good vibes that would be OK too.

  
  Member Comments About This Blog Post:

TOPPERMOMB 12/9/2014 10:57AM

    Hope your treatment will be successful and you will be cancer free...

Report Inappropriate Comment
ARUNNINGKAT 11/30/2014 2:36PM

    Somehow I missed this blog when you posted it. So sorry girl! Sending you lots of love and hugs. We are here for you. emoticon

Report Inappropriate Comment
LIGHTNINGRUNNER 11/17/2014 6:40PM

    As always I am sending you strength and positive thoughts. You will always be in my thoughts and prayers.

Report Inappropriate Comment
SIMPLELIFE4REAL 10/30/2014 7:04AM

    Linda, I'm so sorry to hear this. I was diagnosed with triple negative stage 2b breast cancer about 15 months ago. It was also in at least 2 of my nodes. I had neoadjuvant therapy (AC x4 and Taxol x12), surgery and radiation. You will probably be having a similar course of treatment since it's already in your nodes. I hope your cancer is one of the types that has a targeted therapy available. Please feel free to contact me if you want to talk more. I know this is scary for you and for your kids with everything that you went through with Bob so recently. I will say that chemo is rough, but it is all doable! I found the breastcancer.org thread for people starting chemo the same month I did very helpful. Wishing you the best. Kay

Report Inappropriate Comment
-POLEDANCEGIRL- 10/29/2014 1:16PM

    Hugs. I will send prayers and hugs for you. You are such a strong person. I know its hard to hear that, but you are. Keep us posted as you can. We will be thinking about you and praying for you

Report Inappropriate Comment
MSPLACEDAGAIN 10/28/2014 8:55AM

    You will be in my thoughts Linda. I followed your journey with your husband, and I know that you are a strong person. ((((HUGS))))

Eden

Report Inappropriate Comment
SORGIN 10/28/2014 8:31AM

    Sending up lots and lots of prayers. I know you have the strength to endure this.

Report Inappropriate Comment
SEATTLESIMS 10/27/2014 6:41PM

    Sorry to hear about your diagnosis. From the looks of your blog and SP account, you seem to be a strong capable person! Fight hard and win this one!! Best of luck during treatment and recovery!

Report Inappropriate Comment
CALLIESWEET 10/26/2014 9:29AM

    My thoughts and prayers are with you and your children. Stay strong! emoticon

Report Inappropriate Comment
BBAHONORS 10/25/2014 9:31PM

    My friend, I am so sorry to hear this. But you are strong and will beat this. I will keep you in my prayers. emoticon

Report Inappropriate Comment
GAELENEC 10/25/2014 7:12PM

    Oh gosh.

I don't know what to say. Praying praying praying for you!

Report Inappropriate Comment
DAISYBELL6 10/25/2014 10:57AM

    My prayers are with you.

Report Inappropriate Comment
CRYSBROWN1 10/25/2014 10:22AM

    Sending prayers, you are very strong and I believe that you will beat this

Report Inappropriate Comment
-AMANDA79- 10/25/2014 10:03AM

    emoticon

Report Inappropriate Comment
EVIE4NOW 10/25/2014 9:37AM

  Prayers said for you and for your children to help them get thru this too.

Report Inappropriate Comment


This might go long. Bless you if you read to the end.

Thursday, October 09, 2014

My journey here on Sparkpeople (and my life health journey) has been long. It has also come full circle. But that's not the point of this post. Let me explain.

I have always been an active person, but I've been a lot of weights throughout my life. I've been thin and I've been heavy. I've been healthy and I've been unhealthy. Thin hasn't always equaled healthy and heavy hasn't always equaled unhealthy. Four years ago I was thin & healthy (and happy). Then my husband got sick, and died, and I got heavy (and unhappy). Now I'm the heaviest I've ever been. I'm not happy about that, but my life is *ok*. Could be worse.

I'm currently away from home, on travel for work. Travel to an area that's not too far from home, but far enough that you don't go there in the normal course of everyday life. I have a facebook friend that lives in this area. This friend was actually more than a friend long ago (college), but our lives took different paths after college, and we hadn't seen each other since then. Now I'm a widow, and he's married.

We decided to meet up, neither knowing quite what to expect. We had parted friends, but that was 30 years ago. Would we have anything in common? Would we still 'click?' It was a crap shoot, but we forged ahead to see.

It was a wonderful meeting. The years melted away and we talked for hours. It was like we hadn't had the 30 year break. And on a very personal level, I no longer felt like the *fat* person I feel like so often now. I just felt like me. Funny how it takes someone from so long ago to bring that out.

I don't know exactly where I'm going with this blog. One thing I do know is - take that chance. It was risky to meet my old friend/lover, but it was SO worth it. I'd almost forgotten what it was like to have someone view/think of you like THAT. We remained at a friend level, which is all we can be at this time, but the sparks were still there. I had forgotten that someone could look at me and have sparks...

It's nice to remember that I have worth as a person, and can even be thought of as attractive and sexy, when I don't meet the standard definition.

  
  Member Comments About This Blog Post:

WONDERWOMAN 10/11/2014 5:04AM

    I loved this post! You made my day.

Report Inappropriate Comment
BBAHONORS 10/10/2014 10:59PM

    emoticon

I'm so glad you decided to go out on a limb and meet up with your old friend. Oftentimes, the riskiest ventures hold the greatest rewards!

Report Inappropriate Comment
-POLEDANCEGIRL- 10/10/2014 5:12PM

    That is amazing! What a wonderful feeling for you. I am so happy that you felt like you

Report Inappropriate Comment
ARUNNINGKAT 10/10/2014 12:43PM

    I have heard it said that the key to this entire health and weight-loss journey is self-love. I am so glad you were able to realize your true value and beauty as a person. And how wonderful to meet up with someone from your past who sees your beauty and makes you feel so alive!

Report Inappropriate Comment
NANADERRICK 10/10/2014 9:35AM

    WOW...that brought tears to my eyes. You are a beautiful person, heavy or thin, healthy or not. You dealt with tragic events in your life with dignity and composure and remained available to your children in the midst of that horrible, life-changing event. So, it has taken a toll; so, it has been rough since; so, you are struggling on many fronts; so...you are so worth every ounce of effort it takes to get back to your happy place. You are one of the most fun people I have ever been around. You can see things from many points of view and understand the differences. You can allow those differences and not crack=up. You just keep on with this struggle. You have much, much more going for you than the average woman. I know that you are going to emerge in your happy place. Keep the faith. Even if you cant see it, don't feel it...you ARE moving forward. I am looking forward to seeing where life takes you and the rest of the story!!! Love you Sister Linda!!!!!

Report Inappropriate Comment
KNEEMAKER 10/9/2014 11:07PM

  Beauty is within much more than what is on the outside. I'm a man and I know for certain. Good luck and just Keep on keeping on! It is your life and you must enjoy each second of it. Thanks for sharing. emoticon

Report Inappropriate Comment


Starting over...again...and apparently at less than zero!

Wednesday, October 01, 2014

I decided sometime recently that I needed a total restart, which took effect Monday. Yeah, this is the time I'm 'really' gonna do it...blah, blah, blah...No prophetic declarations out of me this time. The proof will be in the results - or lack thereof.

I'm seriously back to basics though. Tracking all my food, trying to set reasonable goals, looking to get some exercise every day - or at least almost every day. Came up with a new 'points' system to evaluate every day & give me something to shoot for. Everything I'd tried in the past few resets either hadn't worked or hadn't lasted. If this is the magic bullet I'll surely report it!

I also decided it was time to get back to strength training. I really truly enjoy ST, but lately it hasn't been working for me, what with the bum shoulder and spotty gym. But I know this is something I really need to do, so off to the spotty gym I went yesterday over my lunch hour. I absolutely hate the machines there (they are not maintained at all, so they are herky-jerky-squeaky), but they do have a decent assortment of dumbbells. There used to be an exercise ball there too, but that disappeared recently.

My first strength workout was nothing to write home about. Tried to think of what exercises to do with dumbbells that wouldn't aggravate my shoulder, but didn't require the use of a ball or bench, or other equipment I didn't have. Did what I could think of with the weights, and then threw in some pendulums and sit-ups for good measure.

I didn't realized until I went to the chiropractor today how sore my gut is from the sit-ups and pendulums I did. Really? This sore from 20 sit-ups and 10 pendulums? Yep - I'm starting over from less than zero.

BUT...I am starting over, so I give myself props for that. With any luck my next blog will report continuing progress, and not another restart!

  
  Member Comments About This Blog Post:

SEEHOLZ 10/12/2014 8:40PM

    I think that's great Linda!

Report Inappropriate Comment
DDHEART 10/4/2014 11:19AM

    I give you props too and I have to say I'm right with you.....Started October with the realization that this is serious and I need to be too. I can't say exactly why or what has happened in the last year or maybe if I'm totally honest I can pinpoint it...I've been phoning it in half of the time (maybe more than that) so...back to basics and back to square one.

Sad to say, it makes me feel a little better to know I'm not alone. We both know what to do, we just need to DO IT!

Report Inappropriate Comment
SEATTLESIMS 10/2/2014 12:32PM

    I know what you mean from feeling like starting over from less than zero! I was barely off workouts for vacation, and coming back to my workout class was tough! and sore abs for sure! But hopefully that just means our bodies will bounce back faster than actually starting from less than zero.. muscle memory right! ;) Just trying to stay positive! Have a great day!

Report Inappropriate Comment
CALLIESWEET 10/2/2014 1:12AM

    Believe in yourself! emoticon

Report Inappropriate Comment
BBAHONORS 10/1/2014 9:22PM

    emoticon emoticon

Report Inappropriate Comment
ROBBIEY 10/1/2014 3:35PM

  emoticon Take it slow, you can do it!!!

Report Inappropriate Comment
CRACKERS4554 10/1/2014 3:25PM

    One day at a time!

Report Inappropriate Comment
CINDYLOU4782 10/1/2014 3:16PM

    emoticon

Report Inappropriate Comment


Bound to get better sooner or later. Hmm...looks like later

Monday, September 15, 2014

Well, I took my cat to the vet today for the nasal flush. Had high hopes this would be the ticket, but we all know what can happen with high hopes. Picked up my cat this evening, and he sounds just as bad as he did when I dropped him off this morning. Now I have to decide whether to subject the poor thing to surgery - in hopes that it will help - to the tune of $300. Oh, and today's vet visit was $276. (And the chiropractor was $115)

I hate being in a downward spiral like this. I know it has to end sooner or later, but sooner is not looking to come through for me. As I continue to fork money hand over fist, I can't help but think about everything that's looming. Christmas. My 10 year old car with 275,000 miles on it (and I drive 100 miles/day). 20 year old refrigerator, and heat/AC system. I'm sure I'm forgetting something, and it will probably break tomorrow!

If it does, it does. Fretting & worrying over it won't help. Just have to keep moving forward, or at least try not to fall back. Maybe I can make it through tomorrow without spending any money. Maybe?

  
  Member Comments About This Blog Post:

-POLEDANCEGIRL- 9/22/2014 10:24AM

    HUGS!! Hang in there. One thing at a time. It will get better. i promise!

Report Inappropriate Comment
KLONG8 9/17/2014 12:47AM

    Thought I'd check in on you. Sounds like you're dealing with a lot of strength-zapping crap, Linda. Calliesweet's message is right on though. Don't worry about what you can't control....things have a way of sorting themselves out. I'm rooting for you! And your cat!

Report Inappropriate Comment
SIMPLELIFE4REAL 9/16/2014 10:41AM

    Wow....100 miles a day in your car. That's a lot. I'm hoping that everything keeps working. It can be overwhelming when we start looking at everything that could go wrong. I guess the good news is that it's pretty rare for everything to go wrong at once.

Wishing you an event-free week! (or if there is an event....it's a GOOD one)

Hugs,
Kay

Report Inappropriate Comment
CALLIESWEET 9/16/2014 9:19AM

    I feel so bad for you. Could you go with a friend for a walk or to have coffee to talk all of this out? Try very hard to distract yourself from thinking of all the potential costly problems that could happen. You are adding the weight of things that aren't happening to what is actually going on, which is already enough to think about. Which I already know you know, but it's what I'd say to a friend over coffee and what I'd want someone to remind me. emoticon As a side note, did they send the materials from your cat's flush to the lab to double-check what's going on in the sinuses to give you all the options and an idea how likely the surgery is to solve the problem? Hang in there and take good care of yourself through all this!

Report Inappropriate Comment


1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31 32 33 34 35 36 37 38 39 40 41 42 43 44 45 46 47 48 49 50 51 52 53 54 55 56 57 58 59 60 61 62 63 64 65 66 67 68 69 70 71 72 73 74 75 76 77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 100 101 102 103 104 105 106 107 108 109 110 111 112 113 114 115 116 117 118 119 120 121 122 123 Last Page