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Fearless_Moderator

See you @GloHo. Glad you could drop in for a while today.

Thanks @Taita.  Guess I just need to be patient and keep up my new routine...or shove a stick of dynamite up my a#$@s. 

Got my CT results on Tuesday.  Not good.  It seems they think the Gemcitabine isn't helping and no point continuing with it.  The two tumors they track have had mild progression but one has metaticized into m liver and the other the same but into the colon (probably the cause of my blockage). That said every thing is quite stable so it' wasn't a total bummer.  I'll see my oncologist on Tuesday in person to discuss what's next but noticed they've booked me a chemo chair for Wednesday so she may have some nice surprise for me since the Gem was supposed to be the end of the line for chemo for me.  I not fussed waiting.  I've beaten this danged disease for 4 years longer than they said I could and whatever is in store for me I'll take with a smile.  What will be will be eh?

Fearless_Moderator

Have a great week @Taita.  Since GloHo has also signed out I think I will as well.  

Everyone take care this week.  Enjoy the good weather.  Watch getting too much sun.  A little SPF is in order when we go out now.  I'll be trying the relaxation techniques Taita suggested.  

See u all in June ladies.

  

babs272

I am here late I am late being here. I am doing ok. Dealing with hand and foot syndrome the past 2 weeks. No chemo last week. Maybe next week we get back on track.

Fearless_Moderator

Still here @babs272 I was just shutting down when your post popped up.  Sorry to hear about the hand and foot issues.  They are truly awful.  Interesting I never had them when on Avastin, at all.  But about ten years ago, before OVC I was diagnosed with a horrible case of hand foot and mouth disease.  Blisters everywhere that kept travelling from my fingertips and hands, to my mouth or my vagina to my feet and toes.  I was in agony and I think my doctor prescribed something but I can't recall.  I'm wondering if it gave me immunity and that's why I have coasted through the Avastin.  All I can recommend to you, if you aren't already, is keep slathering on lanolin based creams twice a day.  Udderly Smooth is the prefered brand for most of us.  Walmart carry it, it's cheap (about $6 a jar) and the side effect is baby soft hands and feet. 

Fearless_Moderator

Now I'll make my exit for this week.  See y'all next Thursday.

Strongwoman

@Fearless_Moderator @GloHo
 Regarding bowel obstruction/slow bowels
I have learned a lot due to experience
First Restoralax puts the water into the bowels 
Senokot moves it through the bowels
**thing to remember is if you think it is obstructed the Senokot will only increase pain as it increases peristalsis and if it is blocked will not produce any results**
If I up my pain meds or think I am experiencing an ileus/partial bowel obstruction I up my Restoralax from daily to 2-3 times a day for a couple of days
 Restrict my diet to liquids (broth, jello, etc) and it does usually resolve itself.
Dexamethasone will help with reducing inflammation inside which can help on these situations 
  Hope this information is helpful. 

Strongwoman

@Fearless_Moderator
  I am saddened to hear of your tumour growth and the locations they are in.  As you stated, you were not surprised and have had success with other lines of treatment (some possibly shorter than others).  It sounds like you are "ready" (are we truly ever ready?) for what comes next.  I do sincerely hope that there may be another line of treatment for you, that you choose what is ever right for you and your situation and what quality of life you would like.  
  Apologies for not being present this week.  My eldest son came home and we had a delightful lunch together and got caught up.  Those are the moments I don't want to ever miss if I can help it.
  @babs272 You sound "disappointed?" "upset?" about not being able to have chemo this week again.  If those aren't the correct emotions you are feeling, kindly correct.  I don't want to dismiss what you may be feeling about it all.  It is difficult to go through all on it's own.  I do hope you get some relief with the hand/foot syndrome soon as well as getting back on course with chemo.  
  @Taita What an adorable little gardener you have to help!  How are you feeling about the upward trend of your CA125 level?  As for the wigs and caps, isn't it unbelievable how trendy some of the styles are?  I remember picking out all of my head scarves to match all my summer dresses when I was doing a chemo cycle.  

Fearless_Moderator

Testing Testing

Taita

working!! working!

Fearless_Moderator

  

Strongwoman

working here too

Strongwoman

Welcome to the 1st day of June Ladies!!!!
 I believe that today may include quite a few updates since last week if I remember correctly from last week's feed.
I may or may not be in attendance today as I am spending part of my day with my elderly Aunt and have no idea what we will get up to nor do I want to put a time limit on myself. 
Here is where I am at currently. My CT scan this week is written in a different format that I am used to and now have more questions than I have answers. My CT scan in the last 3 months has gone up 58 points since the last CT scan 3 months ago.  Usually this indicates (in my case) that the CT scan matches what the CA 125 level is saying.  So, I have a multitude of questions for the Oncologist next week.  For an example, it states on this one that there is "severe stable hydroureteronephrosis, more pronounced on the right." Last CT scan indicated mild to moderate on the left and severe on the right (hydroureteronephrosis).  If what was written in the findings indeed correct this time, well that is change and a fairly big one on the left kidney. So, before I get too jumpy about it all, it is something I need to discuss and possibly get another radiologist to read it or we get clarification on it.  It also led me to the discussion topic that I posted a couple of days ago about "biochemical relapse".  I will be asking more about that as well.

So, that is me physically.  Mentally and emotionally, I am not great and the only thing keeping me going right now is the Hike for Hospice in my area on Sunday.  I am excited about it and our 'costuming' we are doing for the day.  I am also excited as ToughasTeals family made a team for it as well.  I only found out a couple of days ago or I would have invited them to join our group.  I also totally understand the family wanting the autonomy of having a team all their own.  I imagine they are all still on their healing journey.  I have been asked to speak at this event as well as my teammate about how we got to where we are and all the wonderful things Hospice has to offer many people.  I will be doing a shout out for ToughasTeal and her family as it is also one of the reasons I formed a team for the Hike. So this is a very big positive in my life and will post some pics later from the day.
The emotional/mental part of things has been quite challenging.  We rent and the people that own the place have indicated they want to sell and have every right to.  When asked about next steps, was told we had to be out in 60 days end of story and the "I am really sorry, I know it's bad timing, yadda yadda".  I was stunned and at a loss for words that day.  We have since retained a paralegal and know where we are headed etc.  Not something I thought we would be dealing with or have to deal with as we have been here for 12 yrs. None of us are in the headspace to handle this on our own and all the them that are working are in the busiest time of year for their type of work.  That is why the paralegal.  I don't have the capacity/bandwidth to deal with it and be "on my game" to do so.  Also, my dear friend with young children who was diagnosed with a brain tumour is not doing well and they have let the family know it will be weeks now.  It saddens me for all of them especially the young kids. Yes the partner, undoubtedly will have so much to go through too.  My old family friend neighbour has been told that they are near the end and will be receiving homecare etc from here on out.  Funny enough, I popped down (scheduled visit) to visit and my cousin came over the same day.  It was nice and he gave me a drive home (as I walked down) and we were able to catch up a bit at the same time.  
This is why I currently look ahead with blinders on so that this periphery stuff does not overwhelm and consume my being.  I am excited about Sunday and all the support given and that will be joining me that day and am thankful I have so many caring people in my life.  I continue to work on my Legacy work and am painting my sister a pair of owls pots that would hold a succulent or small cactus to leave for her later. Next is finding the next thing to paint for the next person until I am done.  I painted a very intricate piece for my gf who has been there since the beginning and even on days I didn't really feel it.  I will post a pic of it when I get it back tomorrow all fired.  
Guess the moral of all of this or MY take away is......one day at a time, find a focus and trudge along. We have no idea what tomorrow brings good or bad. 
If I am not in the chat today, I will catch up when I get back home.  
To ALL of my Teal Sisters out there.......How are you doing, truly not the fluffy stuff you tell the casual person?  Updates from appts or scans etc?  Any new info anyone is learning out there and wants to share?
I am looking forward to the Ovarian Cancer Canada Forum coming up and especially on LGSC and where they are headed with research/trials/medications.  I also hope there is new info for HGSC and all the other rarer types as well. 
Keep cool my friends, water those outdoor plants as they are indicating here in Ontario that there is no rain in site until possibly the week of June 8th.

Fearless_Moderator

WELCOME TO TODAY'S LIVE ONLINE CHAT.  IT'S THURSDAY JUNE 1 AND SUMMER IS JUST AROUND THE CORNER, ALTHOUGH YOU'D THINK IT WAS HERE IN ONTARIO BASED ON OUR WEATHER.  

I've posted this welcome a few minutes early for anyone reading Strongwoman's update earlier today.  If she is unable to join us feel free to comment anyway.  I'm sure she'll be reading our discussion today when the opportunity arises.

So how is everyone?  Not just treatment-wise.  Those of you out west and east, are you feeling any effects of the fires?  The last few days we've had a haze here in SE Ontario that can be attributed to smoke wafting in this direction.  Sure doesn't help my breathing but grateful not to be any closer to it than that.  

It's amazing to me how many twists and turns I've experienced on my own  journey these past seven years.  I'm  lucky my HGSC,  although one of the most aggressive types, has been so slow progressing.  And how well I've managed with the various chemos and trials.  My oncologist says that whatever her  training leads her to expect for me turns out just the opposite.

Take this week's clinical appointment for example.   Two weeks ago we had a quick telephone chat to run through my CT and general health and this past Tuesday was our in depth discussion where I expected the worst. But lo and behold my blood work came through with a resounding 1000 drop in my CA125, a usually solid indicator for me, and in only a week.  So we revised the discussion to say it looks like the current course of Gem is having some positive effect and instead of stopping, with no options to switch to, we'll continue the course for another 3 months and recheck status then.  That said, I did confirm that  based on my kidney condition I'd never be approved for a trial so that option that I held out some hope for is gone.  But otherwise I'm in great spirits.  Moved my target of enjoying the summer to thinking about Christmas but really just continuing to be grateful for each day I have, for the wonderful friends I've  made a long the way, for the enhanced closeness with my husband and son, and for the sun that warms my heart, the pitter patter of rain on the roof, the soft kisses from my pup and so many other things I no longer take for granted.  

Well ladies, it's coming on to 1pm and like Strongwoman, my post is rather long today so I"ll give you a lead on reading if you want it.  Just jump in whenever you're ready to say hello and tell us what's on your mind today.....and contrary to Strongwoman's comment, if it's just fluff then you're more than welcome to fluff it up.  You'll probably put a smile on someone's face that needs it today.  

Fearless_Moderator

Well, it seems like no one is up to joining today and I'm getting tired of talking to myself.  Well,, actually the talking is ok, it's the answers I'm struggling with.  

Hope you had a great rendezvous with your aging Aunt, Strongwoman, and got into a little mischief today.  As for the sale of your house I'm so sorry to hear that.  After 12 years it's not a rental but a home and this  kind of stress you don't need right now.

Please have a wonderful day/week, which ever suits best and hopefully we can meet up next week.  I'll be here as I almost always am.    In the meantime, 

Bojenka

Hello All,

I have not been participating lately.  
Last couple of months have been extremely hectic. Like you @Strongwoman we have been renting a house for 2.5 years in Waterloo. The owner gave us 60 days to vacate and that  he is now moving in. Very unsettling to say the least. Especially since I became symptomatic again with severe pain, bowel obstructions and visits to ER. 
 Good news is we found a cute little bungalow, put in a bid along with 9 other people and were able to buy.  I had help from my work girlfriends packing. Very grateful to have such true friends.  We moved and week later I started my 3rd line of chemo. The oncologist wanted to stay with Carbo/Taxol because it’s deemed as still working. I had decent 7 months with no symptoms. Today another UTI and antibiotics. I am taking a lot of naps/rest in the afternoons now. Seems my body really needs that.  And as long as I am rested, my mind and mood is good. This Wednesday did an exercise class at a rec centre. So I am really thankful for the good days. And yes @Fearless_Moderator taking joy in all things not taking much for granted anymore. Next Thursday I will be in chemo and not likely to join the chat. But looking forward to reading everyone’s news.  Sending HUGS  Bozenka

Eileen

Hello everyone sorry missed today chat. Needed lots of sleep i guess. Well another delay in chemo. Platlet count to low. On other hand talk about evictions. I myself just got a 2 month notice to move out. Landlord saying his parents are moving in.
I am not sure he is being truthful. Cause he did same a yr ago. Tried but i arbitrated it and turns out he couldnt give me an eviction notice last time. So i am going to arbitrate this one.
Other good note my sister came all the way from toronto to see me havent seen her in 30 yrs we have only chatted over ph. So she is here for 2 weeks. 

Taita

Happy Friday everyone! So sorry I missed the chat yesterday but for a great reason!  Had my second cataract operated on and I can SEE!! Exciting.  This second one took a little more out of me than the first one.  The prednisone and antibiotic drops for a month at a time seem to have made me a bit "off".  I slept all afternoon yesterday, all last night and still feel like I could sleep another day straight! I think we get so used to "pushing through whatever comes" sometimes our body objects.  
So sorry to hear about the rental evictions. Not cool at all. Friends and family come in very handy during times like this. People kept offering and is my way, I would say no, I have this and then the light bulb went off.  I don't "have it" like I used to and people really wanted to help.  So I ask now and it makes a world of difference to all of us.
@Fearless_Moderator so happy to hear your good news!  I may be at the end of my Taxol/Avastin (CA125 is now almost 1000) and Gezmar is my next go.  It lifted my spirits to hear you are having success with it.  Good news is my Ascites is down and the partial bowel obstruction has passed so hopefully it bodes well for a nice summer!
Have a great weekend everyone and for those of you in the regions of the fires, please stay safe.  

Fearless_Moderator

WELCOME LADIES.  OUR CHAT TODAY, THURSDAY JUNE 8, WILL BEGIN AT 1PM ET.

I may be late or not be with you at all today.  After two months of waiting a phsyiotherapist finally freed up to take my 'case'.  He's scheduled to arrive here at the house at noon but I don't know what to expect.  I'm assuming this is a first assessment meeting.

So please go ahead and whomever is first on today, say hello and let us know what's' on your mind.  I"ll join in progress if I can.  

Fearless_Moderator

1pm ET and I am able to be here after all.  Great meeting with the physio.  Now I'll wait for my husband to brow beat me into doing this weeks exercises.  

Thought I'd take a moment to respond to the updates from Bojenka, Eileen and Taita that came in post last weeks' chat.  So here goes:

@Bojenka so sorry you got thrown into the turmoil of a forced move.  Like Strongwoman, these things never happen at the best of times, only the worst.  But that said, perhaps a blessing as you've now found your forever home; a place that's all your own.  Congrats.  As for the chemo, let's hope the taxol/carbo combo continues to work.  It's really the best line of defense we have. Just continue to get that rest when your body tells you need it.  Sounds like you have this well in hand, or as good as we can get it.  Hang in gal.  I know it's no fun but here I am at 7 years in treatment and continuing.  

@Eileen Cripes, you too.  Yes, go to arbitration again if you think your landlord is pulling a fast one.  You don't need the aggravation of a move right now.  But perhaps the wise thing is to start looking for alternatives to have something in your back pocket if you need it.  Hope you're having  a blast with your sister.  Wow, 30 years to catch up on !

@Taita so excited to hear the eye surgery has been a success.  And with the ascites shrinking and the bowel obstruction gone it does bode well for a great summer for you.  I'm half way through my second cycle of Gem now.  One more to go next week and I'll be interested to see if my CA has made any progress again.  Regardless, other than my breathing that's been really affected by the smoke smog I feel really great.  Now if the physio can help my Ms. Wobbly on my feet I'll be a  happy camper.  

To anyone affected by these fires, take care.  Mask as much as you can to help filter some of the crap that's getting in our lungs and minimize time outside.  And think  about the pups if you have any. Our vet has suggested we limit time out for them to 10 min at a stretch.  

Strongwoman

Good Afternoon Everyone
  How is the air/smoke/clouds/colour affecting everyone from the fires?  I hope everyone is safe and that no one has had to flee their homes.
  How has your week been? Any updates?
  I have had an emotional few days. On Monday, I went into the backyard to get our oldest dog to take him for a walk. Like we do every day. He did not greet me like he usually does and was laying down in one spot in the backyard.  I called him and his ears pricked up and then he attempted to move, dragging his back end with him.  I was so upset for him and for what I knew it was going to mean.  I couldn't leave him there nor could I carry him. I went inside and called my hubby to tell him what was going on.  I put on bug spray and headed back out. My oldest son came home and found me back there with tears streaming down my face.  Between the two of us, we got him in the house.  I updated my hubby, changed a load of laundry and then had to go back to the dog.  My son said he kept trying to get up while I was gone. So down on the floor I go to protect him and ease him. I must say I did this until my hubby got home, followed by the youngest.  We discussed as a group what was going on and what we should do.  We called the vets, let the boys say their goodbyes (which was extremely hard to watch) and away we went.  We discussed with the vet what he was like and how it happened. They suggested refer out and MRI/surgery, go on a steroid or euthanasia.  The first 2 choices had no guaranteed outcome and we knew what we had to do.  The only thing holding us back was that he was 'normal' in every other way and happy.  So, we euthanized him with tears streaming down our faces and went home to tell the boys.  What was extremely difficult for me was watching the reaction of my hubby (yes he broke down hard) and the two boys.  I couldn't stop myself from thinking of the anguish they will go through when it is my time to pass.  I did my best to put that aside and mourn the loss of our beloved dog and the one who detected my cancer from the beginning.  This dog that could be in a sleep and know when someone was cutting some cheese in the kitchen and come on out for some.  It has been difficult and all of us are missing him terribly. It will pass with time, the hurting part hasn't eased yet but will get better every day.  I am sure there will be bad days mixed with good and that is ok.
  Tuesday was an okay day and I was fatigued from the emotions of the day before and not sleeping well either.  In the afternoon, the program director from my Palliative Day Program called late in the afternoon.  This was an unusual time of day to be calling.  Before he could tell me, I instinctively knew why.  One of our beloved from the group and the one I had dedicated our group for Hike for Hospice passed away on Monday.  It meant we would be having a final farewell for them in our meeting the next day.  I formed a very strong bond with this person and I miss and will continue to miss them dearly.  What I had done on Monday was compose an email to the family about our relationship, how the Hike was dedicated to the person, how well we did with fundraising and that I hoped the love and energy of the day surrounded all and was felt by all on that day.  I included pics too.  I did not have an email address for them as it was usually text we communicated by, I sent it to the Program Director and asked them to pass it on to the family.  What they said next made me feel so good inside and very happy I sent it when I did.  After the family received it, they read it to the person who was dying, they passed away an hour after hearing it.  I can tell you that I had a feeling they would hold on until after the walk, that I prayed for it and am so glad they went knowing how much of a difference they made all over many areas of society and people's lives. That made my heart sing with joy and know that they passed on peacefully.
  Yesterday was our final farewell that I was struggling on whether I was going or not in the morning.  I painted some and found the courage to attend.  I did well up until there was some songs sung and that's when I broke down.  It was all good and it helped for the new attendees to see how intimate the group can be and the issues we discuss in it.  I was wiped and I slept 8 hours last night!

Strongwoman

Here is a pic of our beloved dog in his show days.

Strongwoman

I had a dental appt this morning to have 2 silver fillings removed and a crack in the one tooth from it repaired. I am slowly becoming unfrozen and thankful at this time that this is not virtual.  I am doing my best to not move my jaw very much until I can feel more.

babs272

I am here . Almost forgot

babs272

Just getting over the Hand and Foot Syndrome. Now I can wear my sandals again with out the pain.
And, all those sores and brown spots I developed at the same time, they call it Hyperpigmentation. I look like a mess. But, I am still living. Hope everyone is doing ok. Stay positive and get out and enjoy life. I know its hard, but I am trying hard too.

Strongwoman

@ Eileen   We don't believe our landlord either and are arbitrating it. Funny thing is, for wanting to sell it, we have heard or seen nothing in that direction despite being sent a form telling us it is sold.  From what we know from our paralegal, not the way things are to be done and we are holding off until I have more info on where I am headed (chat to Oncologist on the 19th) OR unless there is a reason we have to respond or ask for a hearing at the Board. I, personally, hope it stays quiet.
@Fearless_Moderator Glad the PT appt went well and yes, the hardest part is the follow through.  Probably difficult when one does not feel well at times either. Do your best to persevere. 

babs272

Strong Woman, I am so sadden by the lost of a friend and dog. Life throws us punches when we least expect them. I had to put a few dogs down in my past and its never easy but you do have thoughts of them  along the way. I still think of my red pom and my jack russell. And a few more. Hugs. Take care and be strong.

Strongwoman

@babs272 Good for you and glad you are feeling a bit better.  Those imperfections are our "battle wounds" and I think they are a testament to all the things we endure and how we reach the other side.
  We are slowly making some plans for the summer and I continue to do my outings with friends during the week.  I am thankful for all my friends and family that attended the Hike on Sunday and all the wonderful memories made.
  My one gf sent me a short video of her 4 yr old son playing the guitar and singing a song he made up. So darn cute.
  My other gf let her grandson (who was at the Hike) text me yesterday.  I laughed and laughed as it was a bunch of letters strung together. I sent back a smiley GIF and he said "I like that. **** sent that to me"  Cute as well and more reason to look at the simple things in life

Strongwoman

@babs272 Thank you for your kind words and reassurance that it does get better. Hugs

Eileen

Good morning everyone. Turned out my visit with my sister was short lived her ride had to head back and she is going to arrange a trip herself hopefully in the next couple of months by herself. I am so sorry @strongwoman to hear about your beloved dog. Prayers to you and your family so sorry about your friend passing away. On other hand yes i myself am gathering evidence etc for my arbitration. My sister who lives in toronto ont. Says in ont the waiting time for arbitration is about 6 months as she works for the government fire marshalls office and they get a lot of landlords asking for postponement on their cases of fines etc because tenants are not leaving due to repairs etc. So if u do arbitrate u will have at good few months. Out here their backed up to about 3 months. 
Have chemo this afternoon platlet back up to 200 tg

Strongwoman

@Eileen Thank you for the info.  I wish you well in your arbitration as well.  
That is good news about your platelets and that you were able to have your chemo.  
How have you been feeling as of late?
Short-lived or not, guessing you enjoyed your visit just the same, made some wonderful memories and had some great conversations.
Thank you also for your kind words.