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Strongwoman

Good Afternoon Teal Sisters,
  We are now heading into February which brings for some the blahs and others some ahhs!  LOL
It can be a time when the winter drags on, its dreary out and feels like spring is not around the corner. This month brings Valentine's Day or Galentine's Day or Non Celebration of the Day and we have Family Day weekend coming up on us. This weekend brings the SuperBowl for those who are football fans or family traditions happen around the SuperBowl day.  For others, it is none of this. All in all, what you do, what you do or don't celebrate and how you spend your time with yourself and others, is your own and what fits for you.  Stay in your moments and how you feel at that time and find what is right for you.
 This week has brought many events to so many Teal Sisters. Some are newly diagnosed and coming to terms with that, some have started their first chemo treatments, for others it may be surgery dates or new/ongoing treatment regimes and for others, they are entering what we all think about but is a reality and are in the end stages of life.  In this group, we will never all be on the same page in our journeys. That is okay, in fact more than okay.  It is how we support others in this forum that matters. Some have good days and are able to support those down. Some have reached NED status and feel they don't have a place here anymore.  I would beg to disagree and feel they have a lot to offer those that aren't and can help support some who are struggling with some encouragement. Engagement on the site does not have to be a ritual for anyone or for anyone to feel obligated to participate on any given day.  This is for you and how you want to show up to this space and what you want to offer to others, to be honest with yourselves and express where you sit today and what is either happening to you mentally, emotionally or physically. It is a time to rejoice celebrations of many kinds and not just to do with this disease.  For it is in this space that many of us sought to help us and find support and like minded people who have walked the walk and befriend and lift up or get lifted up as we continue on our journeys. To share information that we come across and perhaps it may help a fellow Teal Sister.  To find this site a safe environment to share with others truly how we feel and what we may be going through as we struggle a little or a lot with our own journeys and where we sit today.  To ask what you need or what you might like to see on this site so we can continue to improve what this forum is so that it will continue on and on for years to come.
  Wherever you sit today, feel brave and courageous enough to share and open your hearts and souls to people who "get it" and who have "walked the walk" and will "be by your side until....they can't....".
  So where are you today and what would you like to share with all.......

JoanEG

Good afternoon Sisters.  Just popping in to say hello.  I have a call with my GP tomorrow to discuss the results of my genetic testing.  I have been waiting for this since October, I had no idea it took so long!

Strongwoman

Oh Wow @JoanEG  I recall waiting a long time for mine as well.  I  will be thinking of you and ready when you are, when you have digested the info and want to share. 

GloHo

Hi all. A little late to the chat today. Weather was so nice we decided to take the puppy for a walk on the beach. It was a great outing for all of us!
So, I sat around waiting for my CA125 result following my Onc appt. It never appeared so I called the nurse triage line and they told me it wasn’t ordered. What!?!?! Isn’t ovarian cancer 101 = CA125! Good grief. Just another reason for me to not be as confident in my Onc as I would like to be. Fortunately, the triage nurse was able to place a requisition in the system so I could get the test at my chemo appt. Well…I got the results and it is up significantly.. I was hoping to get a bit more time (Nov-Feb), but there was continued progression from the beginning of treatment - so not a surprise…it was slow and I was hoping it would continue at that pace. So I will get my next two weekly Paclitaxel and a CT and then see my Onc. Then probably move onto my second last treatment option of gemcitabine. 

I am taking it in stride. I think as you move through your treatment options, it is just something that is expected. Am I happy about - of course not. Not knowing if or how long a drug will work is hard to deal with - but I try to stay positive and hope for the best and deal with the worst when it happens. 

melissa

Hi Ladies,

Hubby and I decided to take a drive to Ontario for some yummy food we can't get in Montreal. Beautiful weather sunny and +4. I also treated myself to a spa on Tuesday and got a much needed massage.

@GloHo I am sorry the taxol isn't doing what it's supposed to be doing. As well, that you had to do the job of your onc. I can't believe they didn't order the CA125, we have to be our own advocates and remind our drs often. I've been there.  Your puppy is adorable. Is he a service dog? Or is that a life jacket he's wearing or simply his fashion choice lol? Whatever the case, I'm glad you have him he looks like he give good cuddles

@JoanEG how are you feeling about your pending genetic test results? Prayers you have a targetable one such as BRCA. Fingers crossed : ) 

Strongwoman

@GloHo You said it!  The "not knowing if or how long" can send you in a tailspin.  It depends on us and how we get through it.  Not easy for sure but I have found dwelling on it can send one in a downward spiral that is not good for anyone, ourselves or those around us.  Doing our best to accept what is and find our way through it, is in our own best interest.  Some days, the way can be cloudy and that's okay too. 
 Frustrating when one is not confident in the capabilities of our health professionals too.  I am sorry you are experiencing this.  You are smart and confident and know how  to ask for what you need.  You amaze me with your perseverance and your research.  I hope if you do have to do the Gemcitabine, that the side effects are minimal for you.  
  Looked like a nice day for a walk.  My nephew, his partner and their two adorable children came for a visit today.  My great-niece kept calling me "Nana" as I look like her.  LOL   I was glad they came and it was fun but wow!  You forget how exhausting they can be with all of their energy. 
 @melissa Sounds like you got some much needed R & R  Good for you and hope it helped you unwind.  Nice to go for the drive too.  We are headed to my parents in Belleville tomorrow, then into Quebec somewhere on Sat and back to my parents and home Sunday.  A lot of driving for sure but change of scenery will be welcomed. Plus I get to see my parents which is a bonus. 
  @JoanEG I hope that your genetic testing shows something that perhaps can be targeted for you either now or in the future.  Keep us posted.  
Take care all 

Sandi6

Hi @melissa. Yes I had my first chemotherapy on Monday, and it went really well. I have had no symptoms until last night when my joints started aching, and today I have very little appetite. Nothing tastes like anything. It’s like eating cardboard. Has anyone else experienced this?

so grateful for this group ~ wonderful to be able to ask questions here 😘 

JoanEG

@Sandi6 I also get achy joints about the same time following chemo.  Lack of appetite varies for me.  Sometimes it is the day after and sometimes it’s not for a weeks or so later.  You are not alone!

melissa

@Sandi6 yes going pain was a big one for me and I still suffer with it. Apparently it's a big symptom during menopause. My taste buds were altered for sure, but I could taste my food.

Strongwoman

@Sandi6 Oh yes, the taste thing is real for many.  Things don't taste the same for sure. For me, I recall tasting ketchup as "spicy" of all things.  Other things had the taste buds off as well.  One of those, roll with the punches kind of thing and low as far as severity of symptoms.  It will be trial and error on your end.  You will figure out what "tastes" good and what does not for you.  Hang in there!

Strongwoman

Well Ladies.  I saw my Oncologist today. If my CA 125 level comes back elevated in the next couple of days, it means it is trending upwards and we will be switching me to Tamoxifen.  If it remains the same as last time, I believe we are staying the course with Letrozole.  
As for surgery, Hamilton would refer me to a general surgeon and would see me there if I prefer BUT....since it is general surgery, it can be done locally as well.  I prefer this for the family and visiting etc.
I had asked if perhaps I would be able to see the general surgeon that was on the night I had my bowel obstruction last month but alas she does not have an office here yet. Big Sigh on my part....oh well, I tried.
I have been referred to a surgeon in Kitchener who is supposed to good and would do this type of surgery (a little more aggressive due to all involved) and will await an appt with them.  More waiting but that is okay. It gives me time to wrap my head around it all.  Either way and no matter what is done, from what I know now, I will ultimately come away from surgery with a bag (ostomy) of some sort.  I may know before surgery or more than likely not until they get in there and see what is going on.  It will be a challenge working with this and healing but am thankful it won't be recovery from debulking as well.  I will tackle it and do what I can to be prepared as I can be.  The greater risk is attempting this surgery in an emergency situation which is not ideal and way to high stress and risk for all.   I am thankful that I have been able to ward this off for over 2 years and if this is where it is at now, well, so be it.  That is my update for the week.
Had a great time with my parents and the drive we all took to Quebec on Saturday. A welcomed and nice change of scenery for sure!
No Superbowl for me last night....we watched the AKC Dog Show instead. 

GloHo

@Strongwoman
Fingers crossed your CA125 remains stable. Glad you were able to get out to see your parents with a side trip to Quebec. Very nice!! 

Amazing you were able to avoid this surgery for two years! You have been very resilient over that time…I know it hasn’t been easy. It sounds like you are being very diligent in watching your diet and have found a balance that works for you? I hope you hear from the surgeon soon…I know you’re not in a hurry but the alternative of emergency surgery sounds very risky. Is the surgery ultrasound guided? 

Strongwoman

@GloHo Thank you.....yes I have been quite diligent. Being re-assured by the dietician on Thursday that I was doing all the right things, helped. She thinks figuring out the laxative part is the key and I agree as well.  Having the NG tube scared me enough to not risk anything that may cause an obstruction for sure. 
Yes, emergency surgery comes with great risks and why this surgery can hopefully be done.  As for the actual procedure, I am unsure. I will find that out when I go.  I am hoping it is as minimally invasive as can be as getting used to an ostomy will have its own challenges.  Doing my best to stay level-headed and look at things day by day.  Like a turtle, I guess. 
As for switching the oral meds, I believe the side effects are the same as Letrozole with some added perks, less chance for osteoporosis which is good and less arthralgias.  I am for that.  Not that I feel or have any of it but good to know, just the same. 

Sandi6

@Strongwoman I really hope your CA-125 is steady. Sounds like you had a wonderful weekend. I love road trips! You’re doing so well with your diet, and hope everything continues moving in the direction that is best for you. I’m thinking about you 😙 

Strongwoman

Good Afternoon Ladies.  Here in Ontario we are expecting a bit of a weather system today.  Here, it is snowing and coming down nicely.  Supposed to start getting worse around rush hour.  Out in Nova Scotia and Newfoundland they are to get more. What is the weather like where you are?
  How is everyone doing today?  I am a little fatigued but overall doing well.  How are things going with treatments?  In general?

melissa

Hi Ladies,

In Montreal it's a beautiful sunny day, mind you a bit chilly but that's okay. Feeling well overall had my scan last Friday and am waiting on results.

About to head out with the hubby to go walk around the mall for a bit and then who knows lol.

I hope everyone is enjoying their day

melissa

 Just wanted to share this lovely pic. This flower was given to my mother in law for her birthday yesterday. I find it stunningly beautiful, you can see it's veins and it makes me think of the beauty of life

Strongwoman

@melissa How nice for you to have a sunny day.  We were in Lake Simon on the weekend.  What a beautiful place it looked like and probably is in the different seasons.  Long drive but worth seeing all the different parts of Ontario and Quebec when we drove.  I think I am still recovering from it....the fatigue part.
  Enjoy your walk and whatever you do after.
  Let us know your results when you are ready to share.

Taita

Hello everyone.  It has been awhile.  The last couple of months have been a struggle. I am doing okay with the help of a Sub-Q which allows me to give myself anti nausea meds every six hours. Tried to go to every eight but that didn’t work. Back on DEX but only 2mg a day. Tried to wean off the steroid but the fatigue was debilitating so instead of 4mg I am doing 2mg and it is okay. Have my acites drained twice a week at home. Fabulous Home Care nurses. No marathons for me. As my doc says, save your energy for what’s important. We haven’t been able to move back home in our own Condo Because the elevator rebuild is still not completed.  We have a new move back date of Feb 26 🤞🤞🤞. Luckily our dear friend Penny switched with us as she could easily do the five flights of stairs and we are in her condo. (She is now in Mexico for a month)  Even if I could make it up (which I couldn’t), my husband had a hip replacement last last month and has a walker. Sooooo frustrating not to me in our home with our stuff. 

Our daughter in law came and lived with us for three weeks to look after us. She is a godsend. Our kids have taken care of everything.  I am feeling well enough to do a bit of cooking each day. Homemade soups and such which I love to do. 

I stopped chemo before Christmas and was given two months. That is now out the window because of how well I am doing. At the time it was the chemo that was killing me not the disease. Going forward I keep an eye out for the signs of growth and such. I will just keep plugging along maintaining the best quality of life I can. 

We are going away with our family to a beautiful hotel with suites for the long weekend so we will all be together and we will be taken care of as always. I confirmed with my doctor that because I am no longer on chemo I can have sushi and raw oysters again. May not seem like much but they are my favourite and it has been almost four years!  This weekend I will partake! 

One last thing, to top it all off, last night I tripped and fell and twisted my foot. It is sore but I can walk. Not getting much of a break, but onwards as they say. 

Even though I don’t comment much I do read everything and enjoy everyone’s contributions. Keep them coming! 

Happy to answer any questions about my journey if it is helpful to anyone. Take care. 

GloHo

Breathe…breathe…breathe…
My latest mantra. It just hit me how close I am to the end. I had my last weekly Paclitaxel yesterday. Only two standard of care drug options remaining and I’ll be starting one of them in a couple of weeks. Have been a little anxious, grieving, etc. It’s hard not knowing if or how long a drug will work and at this stage the drugs do not seem to kick in as well - so shorter PFS (if any at all). So, not my usual self. 

I had set up an appointment with my GP for today at my last appointment a few months ago to discuss end of life plans…quite timely!!
She still comments on how extraordinary I am for a cancer patient. No symptoms, no pain…yet. 

We discussed in-home care - she will send a referral for the community palliative care team (of which she is a team member) when I am showing signs of needing that care. The team has a nurse and Dr on call 24/7. 

We discussed hospital versus hospice…this will depend on what stage I am at when I am no longer comfortable at home. The hospital has beds available…but not a specific unit for this, so you could be placed anywhere and they wouldn’t give the same type of care as a hospice. A hospice referral is done through the palliative team. Unfortunately, our town does not have a hospice…however there are plans and groundbreaking should be soon. Very much needed. So, there is a hospice in London that I am considering. The problem is that my husband doesn’t drive so he would have to make transportation arrangements. Not sure how that would work in an emergency situation since you usually need to prebook. I am sure one of our neighbours would drive him (if he asked 😵‍💫) or a taxi would do the trick. 

I highlighted my sensitivity to drugs and how I would like to start with half the normal dose and I would tell them if I needed more. I do not want to be loopy and out of it for no reason. 

I mentioned that both my husband and eldest son are on my Medical POA. I also indicated that I would like my son to be very involved in the decision making. I know my husband - if the Dr says that’s what you need, then that’s what you need. He would not challenge it. With all the self-advocating we have to do throughout our journey, we know that’s not always the case!! 

I am stopping my blood pressure meds and will self-monitor for a couple of weeks. If my readings are at a certain level consistently, I have a prescription for a low-dose med to start and see how it goes. 

She also gave me a prescription for anti-nausea and pain meds for my cancer symptoms when I feel I need them. Handy to have if they come on suddenly. 

I have not yet done the funeral stuff…getting to it. 

Now, I just need to get all this written down in a sensible way. Hoping to find some worksheets on some of these things so I know what information I need to include in my care instructions. 

On a more positive(?) note…there are a couple of clinical trials (Phase 1/2) that I am considering. There is actually one beginning in London but they’re not recruiting yet so I’ll find out more at my next appt. 

Looks like I am back to journaling for you, my sisters. I know it’s end of life stuff and not pleasant to think about, but it’s always a good idea to get as much of this stuff done as early as possible. For me, I have been thinking about it and have been doing bits and pieces along the way. I won’t lie…it’s tough but provides relief as each piece is completed. Allows you to relax at end of life and not have everything bombarding you all at once. 

Strongwoman

@melissa How beautiful!  

GloHo

@melissa Gorgeous flower. Thanks for sharing. I can’t wait for spring to arrive!! 

Strongwoman

@GloHo Seems like you and I are sitting in some "stuff" together. Since my obstruction in January, and now all this talk about surgery and stomas etc, it has made me reflect more on where I am at in my journey as well.  I am glad you had the chat with your GP and were comfortable doing so. Making these decisions now and thinking through them rather than having someone else make an emotional decision in an emergency can be two totally different choices. Hard things to think about and to rationalize and put pen to paper so to speak.  Brave you are. 
  I am thankful that we do have a local Hospice and will be discussing things in more detail with my Palliative Doctor after I see the surgeon.  There are a lot of scenarios I want to discuss with her and work out what my wishes are and how we make sure they are facilitated at the time.  I, too, have heard that care at the Hospital at end of life is definitely not the care you receive at Hospice nor as welcoming, I would think.  Sometimes though, we have to do what works for us and our families. 
  I went to the funeral home last year and talked with someone. They gave me a booklet but I did not confirm nor pay anything at the time.  I am using the booklet to write down what I want and other things that I say "can be their decision" at the time.  I feel good about having it completed.  Full of emotions during it and after it for sure but that happens. 
  I have been on a mission to finish up the books I have for my hubby and boys and all the other projects I want completed for them.  Also wrapping up the gift I have for everyone.  I attach a card at the bottom of them for the person it is for. That way, the snoopers in my house don't know unless they look at the bottom.  
  I am with you as you face what you do and PFS.  I don't know how long it will take to have surgery and then the recovery.  Am concerned a little as I am loosing weight too which could be from the change of diet and nothing to do with end of life but don't know for sure.  When I am well, I try to be the best that I can be, in the meantime those thoughts roll around in my head of the "what ifs" or "is it coming soon".  I have more emotional moments than I used to and let it be what it will be. 
  So, my friend and fellow Teal Sister, you have me to walk beside you on this journey. We have others who are well into that part of their journey and I wish them all peace, comfort and love surrounding them.  May they go peacefully and pain-free knowing they are loved. 
  Yes, dark subject but a reality that faces many. Too important to not discuss. 

GloHo

@Taita
So nice to hear from you. I can imagine how much you must be looking forward to getting home! Hope Feb 26 is the day! 

Your trip sounds like it will be a nice change of pace and having everyone together is priceless. 

It is wonderful to hear how well you are doing!  And how you are coping with your symptoms. 

It’s interesting you mention how the chemo seemed to be affecting you more than the disease. This is something that I’ve pondered throughout my journey. Mainly, could I have waited longer between treatments? Taken some chemo holidays? But when you’re presented with “this drug isn’t working, there is progression,” the last thing on my mind was taking a break. I wanted to get treatment as soon as possible. I wanted to try to keep it under control for as long as possible. I will be at the 5-year mark in March, so no regrets on the decisions I’ve made - they were the right decisions for me. 

Sending positive vibes for your continued wellness…stay strong. 

GloHo

@Strongwoman
It means a lot to have your understanding and support. Thank you. 

You have done so much with your legacy  projects and preplannig stuff. Must feel good.
You’re fortunate to have a hospice in your area. I was quite surprised there wasn’t something here given the aged population and the fact that we do have a satellite chemo unit here. 

Yes…I will have to visit a funeral home soon to see what’s up and get my head around all that entails. 

I knew my GP was on the palliative team, so I knew that she would be a wonderful sounding board to discuss these issues and give me answers immediately. We also discussed MAID. She is not moving forward on anything because it would be premature given how I am feeling right now. She gave me her email to send an update when things start moving in a different direction so she can start putting things in motion. 

My chemo Onc actually asked me if I wanted to stop treatment yesterday given the reality of progression. My CA125 was up again, but it had only been a week so not too much. I opted to get the treatment - side effects are pretty much non-existent for me and, although there is progression, I suggested that the chemo may still be keeping it in check somewhat. She was so kind…said she understood my perspective and we went ahead with treatment. We both agreed that that would likely be my last weekly Paclitaxel. She will be calling my Onc about this and someone will let me know if that is indeed the case. There were two reasons we agreed to stop treatment 1) obvious progression 2) I may need a washout period before I begin the next treatment (or potential clinical trial). I have a CT scheduled next week which is the preferred method of determining progression status. My appointment with my Onc is on the 26th…move forward will be determined then. 

JoanEG

Good afternoon ladies.  Sending strength and love to all who are struggling and facing end of life decisions.  @GloHo I have a sticky note on my bathroom mirror that says “Chin up, shoulders back, breathe…. You’ve got this”.
At my request I had my surgery date moved from Mar. 4th to the 11th.  I have a pattern of vomiting and diarrhea exactly 2 weeks following chemo and wouldn’t you know my surgery date was exactly 2 weeks after my next chemo cycle.  The surgeon agreed the timing would be much better.  I have a telephone appointment with a genetic counsellor on Feb. 22 to discuss the fact I have the BRCA2 gene.  I have my final (for now) round of chemo on Feb. 19th.  I was under the impression that would be my final round but my onc. said I may have more post surgery.
@Strongwoman here on my island in the Pacific it has been snowing lightly all day but not sticking.  I am so ready for spring!

Strongwoman

@JoanEG How are you doing with the news of having the BRCA2 gene?  So, Thurs next week you will find out a bit more.  That is good, not that long now.... 
I, agree, that waiting for the surgery is a good idea given what you experience post chemo.  You want to be at your best going into surgery.  Sorry that you have to go through more chemo when you were thinking you would be finished.  It must have been disheartening and disappointing to hear you would require more post surgery.  One good thing is that you know what you feel like after chemo now so that won't be an unknown for you.  How are you doing with prep work getting ready for your surgery.  How have you been emotionally with it all?
Yes, spring would be lovely to see the flowers and smell the fresh air and see things green up.  Does put a smile on one's face for sure. 

JoanEG

@Strongwoman I was pretty sure I would be positive for BRCA2 as I recently found a bunch of cousins on the east coast that all have it.  I am just hopeful my kids don’t have it.  I have 5 siblings that will be tested as well as my 2 kids.  I feel guilty thinking that I may have passed this to my kids in which case possibly some of grandkids, great grands.  I know that’s silly but…
As for post surgery chemo it’s not a positive at this point just a possibility.  I am feeling much better about my surgery now that I’ve had time to marinate on it.  The change of date helped a lot knowing I will be feeling better by then.

GloHo

@JoanEG
I like that “chin up…” great way to start the day on the positive side of things!!
So glad you were able to change your surgery date and you were able to get a date for the following week. 

I was BRCA negative but I remember thinking all of the things you are with passing on the gene while I was waiting for the results. Good they have counselling for us…it’s a lot to think about. 

Post-surgery chemo…just remember they will be doing what is best for YOU. Have you researched or inquired about HIPEC? I don’t know a lot about it and don’t know if you would be eligible. May be worth asking about? My cancer was non-resectable so I never had surgery and did not do extensive research on this…just kept it in the back of my mind as an interesting option available for some. You are getting a few things done all at once…that may make a difference in whether or not you would be eligible. Just thought I’d mention it. 

Keep you’re chin up!!

GloHo

Just a quick update. 

My chemo Onc called to say that she spoke to my Onc today regarding the stop of weekly Paclitaxel. Turns out I will continue with my treatment next week. My Onc will base the decision on my CT results (also scheduled for next week). If/when progression is greater than 20% then I will move onto my next treatment. So, as a reminder to all…do not base decisions on CA125 results 😵‍💫.