• kalindria's Avatar

    kalindria posted an update

    I think I'm done with this site. I'm so sick of idiot men trying to tell everyone how to do things. Anyone who knows me knows that's not my style at all. Farewell to those friends I've made here.

    5 Comments
    • legaljen1969's Avatar
      legaljen1969

      Kalindria, I can tell you are frustrated with something on the site- maybe even angry, but why don't you let us try to help you or direct you on a different path. I know how it feels to want to give up on this site, but if it were not for this site I would just seethe in silence sometimes. It is only here, on this site, that I know I am supported and understood by others battling the beast.

      I agree with Marci. If someone gave you advice you didn't care for, just ignore it. And no-one is an expert. We do all have insights from OUR particular journeys and that's what I find helpful here on this site. There is always someone who has been down the road and knows something I am interested in learning. Maybe they don't know everything, but they know a lot more than I know.

      Please reconsider. Take a deep breath and turn it off for a couple of days and then come back.

      9 months ago
    • legaljen1969's Avatar
      legaljen1969

      More to the point, if it was my comments that upset you- I am so sorry. I got the impression that the posts on your exercise question were not particularly helpful or well received. I stand by what I said though. I do think people did answer what you asked. If there was another direction you wanted it to go, please repost and clarify what information you need.
      I do feel bad that you don't have an area you feel is safe or reasonable where you could walk because it's such a simple and cheap method of exercise. I am fortunate to live in a neighborhood with plenty of sidewalks and people who do control their pets.
      If it was responses to that post that made you upset, I am so sorry.
      I hope you will reconsider, as I cannot say I have ever found a more supportive group than this. Sure they don't always say what you want to hear, but even the people I disagree with on some life issues still have very beneficial information to share.
      Scroll on by what you don't like.

      9 months ago
    • PaulineJ's Avatar
      PaulineJ

      kalindria
      Some of us don't have the right to say what we feel.I understand .I get it everyday/.People keep scrolling by my posts,because they don't believe in Christ and Salvation.Jesus is the answer to this world more so than ever.

      9 months ago
  • kalindria's Avatar

    kalindria posted an update

    Back in March, I ruptured an eardrum in the middle of a horrible sinus infection. Long story short, it has NOT healed and my hearing is impacted. Next week I'm having surgery to repair the membrane. First, I have to have a COVID test on Monday.

    I'm a little apprehensive as this surgery is close to my brain - cue the jokes! I'm accustomed to surgeries on abdomen and knee but this is different. Also, I'm not going to be allowed to blow my nose or sneeze after surgery! Those are such automatic reflexes, it will be challenging to remember to behave. On the other hand, I really want my hearing back to normal again!

  • kalindria's Avatar

    kalindria posted an update

    Here in the States, Cancer Survivors' Day is the first Sunday in June. For me, it's every day. When I was first diagnosed, I ignored all the cancer survivor events and hoopla, convinced that I'd complete my treatment and surgery and go back to my normal life. I thought I could ignore all the pain, fear, uncertainty, side effects and more, leaving it in the past. Cancer had other plans for me.

    I was lucky enough to have a remission of nearly two years but my cancer came back and I returned to treatments and have been getting chemo off and on since then. But I am a survivor. You don't have to be "cured" to be a cancer survivor. You are a cancer survivor for the moment you're diagnosed. Whether you live 100 more years or less, you are a survivor.

    Learning this fact helped me. Instead of being a patient, a warrior, or a sufferer, I am a survivor. I face each day, knowing that one day cancer will probably kill me. But as my close friends and family can tell you, today is not that day.

  • kalindria's Avatar

    kalindria posted an update

    Finished this round of chemotherapy infusions. Now waiting for the next CT scan and visit with my oncologist to see what she suggests as next steps. In between those appointments, I'm heading to California to visit the kids and grandkids! Yay!!

  • kalindria's Avatar

    kalindria posted an update

    Just a quick note to let my friends here know that it's nearly the start of my "birthday week" celebration. My tiara arrived yesterday, Seriously. My daughter got me a stunning tiara. I have my brother and sister coming in from out of town and we'll be heading out to the San Juan Islands to a lovely cabin to rest, relax, and have fun. We also hope to see the new baby orca who was born a couple weeks ago.

    Wishing you all a joyful, not-too-hot time without me. I'll be back.

  • kalindria's Avatar

    kalindria posted an update

    One week to a new knee for me!

    7 Comments
    • kalindria's Avatar
      kalindria

      I'm doing OK. Because of all our snow, I still haven't met with my surgeon for a follow-up or with Physical Therapy. I see the surgeon tomorrow. Incision looks great (I think) so I expect he'll be happy. I guess my mobility could be better but yesterday was my first day with no walker so that's progress!

      That's great news about your CA125... not so great about the neutrophils. These drugs sure wreak havoc on our blood, don't they? I hope you're feeling OK and your blood improves quickly.

      over 2 years ago
    • goodkarma's Avatar
      goodkarma

      Silly me- I mean my CA125 was 8.5, not 85. I go back 3/21 for exam/bloodwork. I know you're relieved to have the knee surgery done- I'm sure it's also in my not too distant future. I've been reading dried ginger helping with cancer stem cells, but I do nothing until speaking with my gyn onc. I know some herbs/supplements may be detrimental & I sure don't want that!

      Let us know how you're doing!

      over 2 years ago
    • kalindria's Avatar
      kalindria

      Hi goodkarma! Ah! 8.5 is MUCH better! Dang typos!!

      I'm doing better with the knee and physical therapy. I'm powering through the exercises and walking much more normally now.

      over 2 years ago
  • kalindria's Avatar

    kalindria posted an update

    Some of you know that my little sister was diagnosed with pancreatic cancer last summer. It's been really tough on her and her whole family. Treatment has been kicking her butt but she's got a great attitude.

    I'm so pleased to share that she's been accepted as a participant in the Reeling & Healing fly fishing retreat to be held this summer in Michigan. http://fishon.org/retreats

    My sister is a terrific fisherwoman, loves to fish, and even got married on a fishing boat - by a fishing boat captain TO a fishing boat captain! So this is right up her alley.

    This looks like a fun opportunity for women who want to learn more about fly fishing - if you know of anyone. I'm so glad I shared it with my sister and I can't wait to see lots of photos!!

    3 Comments
    • BoiseB's Avatar
      BoiseB

      Hi Kalindra. I am so happy your sister can go to this retreat. I will bring it up with the cancer support group. Is it co-ed?

      over 2 years ago
    • kalindria's Avatar
      kalindria

      It's for women only.

      over 2 years ago
    • BoiseB's Avatar
      BoiseB

      That is really because there is man in my cancer support that would love to attend something like this with his wife, who is his caretaker

      over 2 years ago
  • kalindria's Avatar

    kalindria posted an update

    My knee replacement surgery is a GO! I saw my oncologist yesterday (it's been three months since my last chemo) to get the all-clear for surgery.

    I know I have at least 2 small tumors but she couldn't even feel them yesterday which is a change from my last exam! We opted not to do my CA125 as I would probably have symptoms if it was super high. I will have it checked and make decisions on continued treatment 8 weeks or so after my surgery.

    I'm excited yet nervous about this upcoming surgery. I've always had trouble with my knees and I'm just hoping this is the solution I need.

  • kalindria's Avatar

    kalindria posted an update

    Not cancer related.

    Saw an orthopedic surgeon yesterday about getting a knee replacement. I've needed one for some time but with treatment for stage IV cancer, it just never happened. Now it's on the calendar for February. I'm a little scared and a little excited.

    Just another sign for me that a cancer diagnosis is not the end...

    2 Comments
    • meyati's Avatar
      meyati

      Make sure that you are in sync with your physical therapy department--I scheduled a pre-visit before surgery to get an idea of what PT would be like after surgery. It was a complete dud.They wouldn't show me any leg-knee exercises and then acted like I had mental problems. At the time I was frail- I wasn't recovered from the whopping cough.

      I specifically got approval from the surgeon to do this. I specifically stated this for my reason to have the visit. I specifically said this when I checked in. I specifically and politely told this to the dimwit therapist 3 times, so she brought in another person to observe in cas4e I made trouble.. She decided to work on my back and gave me back exercises. I will add-that I hurt my back-doing them a reduced in how many and only once a day. What type of therapist doesn't understand-- frail-been in bed for over 6 months-75 years old? .

      over 2 years ago
    • goodkarma's Avatar
      goodkarma

      Go for it, Kalindria! Your attitude is amazing!

      over 2 years ago
  • kalindria's Avatar

    kalindria posted an update

    I slipped on an icy walk on 12-31 and spent the first week of the New Year nursing a completely useless left knee. Thank heaven it's getting replaced soon! I'm just now starting to feel somewhat mobile again and the weird throat ickiness that's been lingering since I flew back from California a week ago has asserted itself as a cough and phlegmy stuff. I also have no voice. It's been a terrific few days.

    Hope the rest of the year improves dramatically.

    2 Comments
    • goodkarma's Avatar
      goodkarma

      That stinks, Kalindria! I finished chemo 12/4 & now my onc has started me on a parp inhibitor as "maintenance". I was on it 2 weeks & felt miserable No nausea, but felt like I was on speed & couldn't relax. Low platelets, common with this drug & high heart rate. Now I think I've developed a sinus infection & started antibiotics. So I'm off it a week, hoping platelets rise & I will have a lower dose.

      Last night I thought I was having a heart attack, so I woke my husband at 2am & off to the ER we went. Thankfully, no indication of a heart attack, but serious heart palpitations, also common with this drug. My heart rate hasn't returned to normal since I took the last of this drug on Sunday. Doctor thinks its an excellent drug & puts all his patients on it. Since most can't tolerate the recommended dosage, it seems they should start lower instead of putting patients into panic mode with these side effects.

      Sigh. Time for an attitude adjustment to positivity is in order. Just hard to relax with the elevated heart rate.

      Thrilled you're having your knee replacement! Keep me posted since ortho told me 2 years ago 1 knee was bone on bone. It's finally starting to give me issues, so replacement may be in my future!

      Blessings of peace & healing from Texas!

      over 2 years ago
    • kalindria's Avatar
      kalindria

      Those middle of the night ER visits are scary. Mine was in August and was a blood clot although they put me on the cardiac wing just in case. Whew! What an experience! I'm glad you weren't having a heart attack either.

      Which PARP inhibitor are you taking? I was on Lyparza (generic name: Olaparib) for 8 months but it stopped working for me. Will they change you to a different PARP inhibitor or another type of chemo? After my knee surgery I'll probably get some sort of maintenance chemo but nmor sure what yet. Maybe more Avastin.

      I'm thrilled about my new knee too. They're putting in a type that is actually built from a 3D model of my knee so it will fit exactly. It is also less invasive than other types which means less risk of blood clots and with my history, that's a good thing! I'm a little more than a week away from surgery and just got cleared by my oncologist yesterday. I'm a little nervous but this knee is way past its expiration date - bone on bone, osteoarthritis AND bone spurs!!

      Hope they get your meds sorted out soon!

      Hang in there!

      over 2 years ago
  • kalindria's Avatar

    kalindria posted an update

    There was a recent post on Facebook about retreats for cancer patients and I shared this there but I wanted to share it here too. Some are quite inexpensive, some are women only, and all types of cancers are included.

    https://nancyslist.org/2018/02/04/retreats/

  • kalindria's Avatar

    kalindria posted an update

    Five years ago, when I was told I had stage IV ovarian cancer, I did something foolish. I looked up the odds of surviving. Later my GYN oncology surgeon told me not to Google anything but by then it was too late. I’d already learned my chance of being around in five years was approximately 12%. Without treatment, I’d only survive about five more months.

    At one early appointment with my oncologist, I told her that 12% odds meant someone made it to the five-year mark and that I fully intended to be one of those people. I’ve informed every doctor (oncologist or not) I’ve had since then of my plan to survive and charged them with assisting me in that goal.

    I was in excruciating pain and wanted to live so the decision to start chemo and later do surgery was a no-brainer. While the side effects were horrible and the pain was intense, I made it through with the love and help of family, friends, loved ones, and co-workers.

    There have been remissions. There have been two robotic surgeries – one easy and one not-so-easy. There has been lots of chemo. There has even been a clinical trial. Through it all, I kept my thoughts on the goal. Five years.

    Today is that five-year anniversary. I’d originally planned to celebrate with a big party and invite everyone. Life, miles, and circumstances conspired to get in the way of those plans but I don’t care. I’m still here. One of the things I’ve accepted over the past five years is that I’m not in control and that adapting and improvising are often fun and eye-opening in a way you might never dream.

    Since we can’t have the big party, Nick is taking me to dinner this weekend at my favorite restaurant so I can get some lobster bisque – one of my new favorite foods. I’d like to invite you to join us in our celebration please. Hug someone dear. Give someone a compliment. Raise a glass of cheer. Be happy. Life is short and we never know just how many days we’ll get so don’t waste even a single one.

    See you next year when I’ll have to think of something clever to say about my sixth year of survivorship. Until then, thank you for being part of my journey and bringing such joy to my life.

    PS: Don't believe everything you read on the Internet!

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      Congratulations, a day late! That's usually how I roll. I hope your lobster was good! You can eat mine, I'm not the seafood junkie that Donna is. She loves it, and I'll eat some chicken nuggets. We're glad you're still around proving people wrong! Here's to 5 more!

      over 2 years ago
    • kalindria's Avatar
      kalindria

      You're not really late. The fancy dinner isn't until Saturday night. And I'm not much of a lobster fan but I love lobster bisque.

      I gotta say, the first year or so was rough but after that, life has been much improved even with nearly continuous chemo. What is it they say? Never, Ever Give Up!

      over 2 years ago
    • GregP_WN's Avatar
      GregP_WN

      Yep, never give in, never give up, never go down! Have a good night out, Donna and I try to make the most out of every evening out that we get the chance to have. You never know when it's our last one. Donna keeps telling me to stop saying stuff like that and HAPPY UP!! But, it is reality!

      over 2 years ago
  • kalindria's Avatar

    kalindria posted an update

    PET scan last week showed my tumors are stable. Yay!

    Next week I'm off for a vacation to a ranch retreat in Montana. I can't wait!

    2 Comments
  • kalindria's Avatar

    kalindria posted an update

    No chemo today as my white count is too low. After 4.5 years of treatment and chemo, my oncologist is going to start me on Neupogen. I'm eager to continue with my chemotherapy but not thrilled about more drugs.

    4 Comments
    • kalindria's Avatar
      kalindria

      No big incision. Both of my surgeries have been robotic (Da Vinci robot) so I have tiny little one inch scars. The first was out patient surgery and the second required one night in the hospital because I couldn't stop barfing.

      But yes! Anything to get rid of the cancer.

      They just started me this week on Granix which is similar to Neulasta. My insurance wouldn't cover Neulasta nor would it cover the one shot drug so I get 5 injections on consecutive days. Bless my boyfriend for giving them to me because I can't wrap my head around injecting myself. Of course if they send him out of town for work, I may have to...

      Again, so sorry for being tardy to reply. I've been off line for quite a while.

      You may have had your surgery by now, if so, I hope all went well. You are in my thoughts.

      almost 3 years ago
    • goodkarma's Avatar
      goodkarma

      Now I apologize for a tardy response!

      Surgery was the same extensive incision & they did a colon resection. Amazingly, I had very little pain after, with no need for pain meds after the 1st 2 days. They did keep me in a week & I was so ready to go home!

      Doctor wanted to wait 4 weeks before chemo because of the resection & I had 3 days of nausea, unlike before. Then I pretty much felt normal. Chemo 2 is on 9/11 & I took myself off the B Complex & L glutamine they wanted me on. Hope that was what caused the nausea!

      Hope you're doing well- you are such an inspiration to many of us!

      almost 3 years ago
    • kalindria's Avatar
      kalindria

      I’m so glad your surgery went well and the pain was minimal. That makes such a difference! But even happier that you’re at home again! Starting chemo again won’t be fun but I find the first months back aren’t horrid but the unpleasant side effects tend to get worse as you go. I’m into my 7th month of Topotecan and Avastin and feels my worse after each infusion. Luckily, if my tumors are stable, I’m in for a change to just Avastin.

      Has your nausea gotten better? I had to ask my oncology nurse about nausea yesterday. I’m on several new drugs after my recent blood clot and hospital stay. She didn’t see anything concerning but I did get a refill if Compazine.

      Great to hear from you and especially with such good news! I hope you’ve had the chance to do something fun this summer too - even if it was just a picnic or a drive in the country.

      Hugs!

      almost 3 years ago
  • kalindria's Avatar

    kalindria posted an update

    I just booked a vacation at a Ranch retreat in Montana with a girlfriend and her curly coated retriever. The Ranch is owned by another friend I’ve known since high school. Can’t wait to relax in the meditation garden and play in the creek.

  • kalindria's Avatar

    kalindria posted an update

    Still have some small abdominal tumors and some suspicious lymph nodes (this is relatively new for me, having lymph node involvement) but my CA125 is staying steady at 13-14. The plan for now is to stick to the current chemo schedule and see how the next PET scan scheduled for September is.

  • kalindria's Avatar

    kalindria posted an update

    I've been sad lately. My little sister who is one of the strongest, happiest, most wonderful people I know has been diagnosed with a rare form of pancreatic cancer, stage III. She's had two rounds of chemo and seems to be doing OK - still working! - but she's 1000 miles away from me and I worry about her. She's picked my brain about cancer, chemo, PET scans and the rest and feels she's ready for what lies ahead...

    I just wish I could do more.

  • kalindria's Avatar

    kalindria posted an update

    So, it's now 2 days past my first new chemotherapy infusion. This time I'm getting Avastin and Topotecan. I felt awful the first night, achy and had a terrible headache. But the next day, I felt pretty good and today, it's almost almost like before I started chemo. OK, things are tasting funny and I'm pretty sure I saw a few more hairs on my brush than normal but my energy is good and no other expected side effects have appeared. That's a good thing. Hope it sticks around!

    3 Comments
    • GregP_WN's Avatar
      GregP_WN

      Well, compared to some of the side effects I've been through and heard described here, I'd say, not too bad.

      over 3 years ago
    • kalindria's Avatar
      kalindria

      Agreed. There’s been a bit of a digestive issue but day 5 and that’s all resolved. Sure hope it stays this way! I can manage this quite nicely!

      over 3 years ago
    • GregP_WN's Avatar
      GregP_WN

      Excellent! My second chemo type was like a cool breeze compared to the first type. Hope it stays easy.

      over 3 years ago
  • kalindria's Avatar

    kalindria posted an update

    Another one we've lost to effing cancer. Too many gone. RIP, Sue.

    https://www.msn.com/en-us/entertainment/news/mystery-writer-sue-grafton-dies-in-california/ar-BBHuHOd

    3 Comments
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      kalindria, had heard on the news about Sue Graftin but did not realize it was because of ovarian cancer. I have lost two teal sisters this year to the disease. Hoping that 2018 has less losses to all types of cancers and that the medical advances in better cancer treatments keep on coming.

      over 3 years ago
    • kalindria's Avatar
      kalindria

      Ms. Grafton's cancer was appendix cancer. Sorry for the confusion.

      over 3 years ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Well lady, it doesn’t take much to confuse me . My mistake, not yours.

      over 3 years ago
  • kalindria's Avatar

    kalindria posted an update

    My CT scan on Monday was clear and, after discussing options with my oncologist, I will not be having any more chemo or maintenance chemo/drugs. Next scan in 3 months.

    This is terrific news and I am thrilled! Onward and upward!

    1 Comment
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      Yay, and yay again! I just had my 31/2 year exam since ending chemo and everything looks ok. Guess we both received early Christmas presents. You and yours have a wonderful Christmas.

      over 3 years ago