• 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.

      3 months 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!

      2 months 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.

      2 months 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?

      3 months ago
    • kalindria's Avatar
      kalindria

      It's for women only.

      3 months 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

      3 months 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? .

      7 months ago
    • goodkarma's Avatar
      goodkarma

      Go for it, Kalindria! Your attitude is amazing!

      4 months 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!

      4 months 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!

      4 months 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!

      7 months 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!

      7 months 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!

      7 months 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.

      10 months 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!

      9 months 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!

      9 months 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.

      about 1 year 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!

      about 1 year 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.

      about 1 year 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 1 year ago
    • kalindria's Avatar
      kalindria

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

      over 1 year ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

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

      over 1 year 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 1 year ago
  • kalindria's Avatar

    kalindria posted an update

    Waiting...

    I had a CT scan yesterday and tomorrow I see an oncologist. Not MY oncologist as she is still out on maternity leave but I have full confidence in the rest of the staff. Tomorrow we discuss next steps, perhaps more chemo, perhaps another clinical trial, perhaps, perhaps, perhaps. I'm not really anxious but I'm ready to not think about cancer and treatment for a while.

    I'm sure many of you understand that sentiment.

    After the appointment, I'll make a reservation to fly south to the Bay Area to see my lovely daughters and grandkids (and sons-in-law too) for Christmas, assuming my new treatment allows. Cross your fingers for me for a clear scan and a clear schedule!

    4 Comments
    • kalindria's Avatar
      kalindria

      It was clear! NO MORE CHEMO! It's a wonderful Christmas gift!

      over 1 year ago
    • GregP_WN's Avatar
      GregP_WN

      Very good news! I know you're relieved, time for a celebration dinner.

      over 1 year ago
    • kalindria's Avatar
      kalindria

      LOL, maybe more prime rib!

      over 1 year ago
  • kalindria's Avatar

    kalindria posted an update

    Yesterday was my last chemo.

    Until they tell me they want me to do maintenance chemo. But I'll deal with that when it comes.

    I know this will sound silly but I've had treatment at two different places in two different states now and neither one had a bell for me to ring or even a party for me. So here's me ringing that imaginary bell and throwing a huge party (OK, maybe after the side effects abate a bit) for myself!

    I love you all, hope you're feeling well and that everyone is doing something enjoyable today. It can be something little like hugging a loved one or sleeping in late or just enjoying a chilly fall day... Life is good, never forget that!

  • kalindria's Avatar

    kalindria posted an update

    Live your life, not your cancer. Easy to say but not always easy to wrap your head around, right?

    In keeping with this goal, I am taking part in National Novel Writing Month, AKA NaNoWriMo, this November wherein people from all over the world attempt to write a 50,000 word novel in the month of November. I've done this a number of years so depending on how bad my chemo brain gets after tomorrow's treatment, I am confident that I can prevail.

    I probably won't be around much until December. Wish me luck!

    1 Comment
  • kalindria's Avatar

    kalindria posted an update

    Today's Facebook post:

    Four years ago, on this date, I heard the words that would change my life (and those of many around me) forever: we think you have cancer.

    The thought of that moment still brings me to tears.

    Through all the horridness of more side effects than I knew existed and often excruciating pain, I managed to emerge, months later, stronger and more determined than ever. Since I was stage IV at diagnosis, I've been told my cancer will be with me, in one form or another, for the rest of my life. Cancer is not a traveling companion anyone wants but since we'll be together, I'm not going to let it control me.

    The words I heard four years ago changed things. I no longer take for granted that I will live to a ripe old age -- my grandmother was 100 when she died and both my parents are still alive in their 80s -- I assumed I'd follow suit. This recognition makes me aware of precious moments and the swiftness of time's passage. Good lessons, but what a crappy way to have them brought home.

    In four years, I fully plan to be here writing another summary of my experiences. Hope you'll all be here cheering me on and supporting me as we take this crazy journey together.

    Thank you all, more than I can say, for every word of encouragement, support, love, and sweet puppy faces.

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

      kalindria, congratulations on your four year survivorship. Both of us have managed to surprise our doctors . Your positivity and determination through difficult times has helped me to do likewise and l feel so fortunate to be able to call you my friend.I look forward to hearing about your travels and life experiences in the years to come . One day, one week, one month, one year at a time teal sister.

      over 1 year ago
    • kalindria's Avatar
      kalindria

      Thanks, Lynne. I feel so lucky to have your friendship and support on this crazy journey. It helps immensely to have someone who understands and sympathizes.

      Maybe in four years, we can have a party to celebrate?

      over 1 year ago
    • Lynne-I-Am's Avatar
      Lynne-I-Am

      I would really like that lady. It’s a date.

      over 1 year ago
  • kalindria's Avatar

    kalindria posted an update

    Chemo #2 done and dusted. A few minor after effects but those will pass. Recurrences suck but this too shall pass.

    1 Comment
    • kalindria's Avatar
      kalindria

      I spoke too soon. After two days, the side effects really kicked in. I think this time through chemo is going to be a real challenge. Ugh.

      almost 2 years ago