Hanging in There

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Nothing to see here just a girl sitting in a public cafeteria crying while watching a sad show. And then the text comes through that Mom gets her B12 shot tomorrow. It’s to combat side effects. She will be set to start chemo the week of November 4th. And now I’m crying not because of the show but because of real life.

The past 3+ years have been a time of memories and miracles but it’s also been a time of worry and heartache. We are blessed to be going back to Disney in 10 days. But the things that come after that, well it feels scary. With a new drug comes new side effects. And then there is the whole what happens when this thing doesn’t work?

I’m doing my best to enjoy the moments but the thoughts still creep in. And I will wake up certain mornings at 2am just sick to my stomach because the idea of another drug not working is too much to handle.

So I just let myself feel all the feelings because that’s all I can do. So sometimes I will laugh and sometimes I will burst into tears and that’s ok.

CA125 Update

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I’m just going to cut to the chase. Doxil is not working. Mom’s CA125 is now 4,298 from 2,530 last month. Her doctor is taking her off this chemotherapy treatment because it’s not doing anything and the cancer has continued to grow while she was on it.

We are incredibly limited with the types of treatment mom can be on due to the fact that she is platinum resistant, PARP resistant and the location of her cancer. We will meet with her oncologist Monday but as of now the plan is to start Alimta which is a chemotherapy drug used primarily in lung cancer patients but has been shown to work a bit in a small number of ovarian cancer patients.

Here’s the thing. I’ve been trying to close out this blog for about 30 minutes and I don’t know what to say. So I’ll just finish with this.

Mom, I am so incredibly proud to be your daughter and I love you 💜

Results

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Mom’s CA125 is now 2,530 from 2,140 in July. The scan showed that the cancer in her lymph nodes has grown.

So the Doxil is not working but we are giving it one last chance. Today mom will receive Doxil. In about 4 weeks she will get another CA125 blood draw and if it reaches 3,000 we are kicking it to the curb.

Next up would be a drug used to treat lung cancer. So to say we are desperate is an understatement. But hey, it’s worth a try!

It’s not the best news but it’s not the worst.

As always thank you for lifting us up in your prayers and kind words. 💜

Waiting…

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The waiting is the hardest part….there’s a song in there somewhere. Mom had her CT scan this morning and now we wait and wonder. Wonder if the scan will be posted before Monday morning. Wonder if the nurse will call in the next 3 days to give us the news before she meets with her oncologist on Monday morning. And the worst wondering of all…wonder if the cancer has grown and/or spread. We should be used to it by now after 3 years but truthfully at this stage of the “game” it just gets harder.

As always thank you from the bottom of our hearts for praying for us and sending us so much love. 💜

CA125 Update

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Mom’s CA125 is now at 2,140. It was 2,153. So it’s down 13. Which is positive. It’s obviously not quite what we were hoping for but it beats the alternative.

The plan is Doxil today. A CT scan the week of August 19th. And an appointment the week of August 26th to go over the results and decide whether to continue with this treatment or go a different direction.

So today’s treatment is a big one and the scan in August will be the indicator of whether this treatment is truly working.

As always thank you for the love and support and all of the prayers 💜

Is it working? 🤷🏻‍♀️

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I just keep searching on google “how long can you live when treatment no longer works and you have ovarian cancer” and different forms of that trying to find an answer. I know google doesn’t have that answer. But maybe I think knowing would soften the blow or something. I don’t know.

So far it appears the Doxil is not working. And for some patients their CA125 goes up after cycle 2 and then the drug kicks in. After 2 cycles mom’s CA125 is up to 2,153. It was 1,613 in May. She completed cycle 3 on Tuesday and on July 19th she will have a blood draw to see where her CA125 stands after 3 cycles.

In August she will have a CT scan. If the scan isn’t good and the Doxil is in fact not working there will be some decisions to be made because we are at the bottom of the barrel as far as ovarian cancer treatment drugs go.

For now we will try to put all of this nonsense out of ours heads and head to Florida in July and Hilton Head in August because that’s what we do.

As always thank you to all that pray for us and send us so much love. On June 24th it will be 3 years since her diagnosis and all your love and support has helped carry us through. 💜

Scan Results & A New Plan

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Mom had a CT scan last Thursday. Today she and dad met with her oncologist to go over her results and a new treatment plan.

Her CA125 is now up to 744 (it was at 482 on 3/18/2019). The lymph nodes that were enlarged on her scan in February have grown by 30%. And she has irregular thickening along the medial wall of her cecum (the beginning of the large intestine) because of the cancer.

Because the cancer still progressed while she was receiving treatment they have in fact determined that her cancer is now resistant to platinum based chemotherapy drugs.

Tomorrow she will have an echocardiogram and if all looks good she will begin the chemotherapy drug Doxil. The echocardiogram is necessary because Doxil can interfere with the pumping of the heart and they want to make sure hers in working properly before treatment.

If all checks out she will have Doxil once a month for 4 months and then another CT scan.

As always thank you all for the love and prayers and support. It means so much to us! 💜

We Need A New Plan

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There are variety of directions I considered taking this post. I’ve been sitting in the same spot for an hour and a half drinking my strawberry acai refresher from Starbucks trying to think of something.

I could go deep and talk about the suckfest that was Wednesday. I could give you the facts and the game plan. I could try and be funny or lighthearted or try to be super positive.

So maybe I’ll just try real. I don’t know how I’m feeling or what to think. Wednesday was the same as it’s been for a while. CA125 keeps going up and due to a combination of things mom didn’t have chemo on Wednesday. This treatment plan just isn’t cutting it. It’s begun to feel pointless for her to feel like garbage and stay in the hospital when the chemo isn’t doing what it’s supposed to be doing. So after consulting with nurses and the oncologist she was discharged and went home.

She (and we) get the next two weeks to regroup and get ready for a new plan. On April 4th she will have a CT scan and on April 8th we will go over that and talk about what chemotherapy to try next.

It’s a lot and it’s the same thing over and over again which is both numbing and frustrating. It also feels surreal because she looks good (which we are incredibly thankful for…I’m not complaining…just trying to convey my emotions). They’re coming back with these numbers and scans that indicate cancer growth and she doesn’t look sick. She looks like her. So it’s hard to wrap your brain around.

Thank you all for your love and support and prayers and kind words. It means so much to us. 💜

CT Results

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The cancer is throughout the lymph nodes in her abdominal cavity but it hasn’t grown much so they are considering it stable. The lymph nodes grew by 0.2cm on average.  So while they are growing they are growing at a super slow rate.  So that’s why they are classifying it as stable. In order to keep it stable she will have to be on chemo indefinitely. They will stick with the same drug she is on and are adding another chemotherapy drug next cycle.  They will stick with this protocol until either the lymph nodes grow larger by 30% or she has a severe allergic reaction. He let us know that this isn’t going away with treatment and that the goal now is to keep it small and stable.

So while it isn’t the best news its certainly not the worst.  We would have liked to have heard,  “These things are shrinking and you should be in remission in no time”, absolutely! But we also didn’t hear, “It’s growing out of control and there’s nothing we can do”.  So ya it’s a bummer, but it could’ve been worse.  So that’s what were rolling with.

 

**Thank you all for taking the time to read the blog, pray for us, reach out to us and surround us with so much love and support.  It truly means more than words can express.  You are all wonderful and we appreciate every single one of you!**

Some Thoughts

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My mind is somewhere else and it probably will be this entire week. It’s torn between what my mom’s test results will be and remembering to get eggs to make cupcakes for Julian’s birthday.

I’ve developed a coping mechanism over the past couple years. I’m not really sure if it’s actually a coping mechanism or just an attempt at avoidance.

When my mom was first diagnosed my fears were always at the front of my mind. I would sit on the bathroom floor every night and just cry. Eventually this subsided.

These days I’m almost able to stick my fears in a box and focus on what we have. What we have been blessed with and not what we stand to lose. I’m sure this has come with time, therapy and medication. But on weeks like this I allow myself to open the box. I allow myself to feel my fears.

February 14th she has her scan. And once that scan is complete we know at any moment her nurse could call and give us some crappy news. The 18th she meets with her oncologist so we are guaranteed to know something by then.

Maybe chemo has started working. Maybe it hasn’t. Maybe the next drug they try will slow or destroy the cancer. There are a lot of maybes. But there is one thing I KNOW for sure…regardless of the news we receive we will deal with it how we always have with tears, humor and with love and support from the people around us.