Connie (Mrs. WebSlave)

[WebSlave]

Today and yesterday, Connie tells me that she feels almost normal.

It has now been over a month since she had her last chemo treatment, so I guess this is raising questions in my mind. It is great that she is feeling better lately without those chemicals in her system, but on the other hand, are the cancer cells running amok without the chemicals being there to kill them off?

Quite honestly, I really hope they do a test on that CA125 tumor marker tomorrow, as I am REALLY curious to see what that number looks like after Connie has been off the chemo for this length of time. Is the number still going down? Is it now going up? I sure would like to know that info.

We have an appointment to see Dr. Ellison tomorrow (Wednesday) I guess to review the test results and to plot a course for future treatments. So we will see how that goes.

I am hoping that Ellison isn't planning some harsher chemicals with a history of cardiotoxicity, and the reason behind the echocardiogram was to set a baseline to monitor the toxicity of those drugs. Some of them apparently can cause permanent heart damage in real short order. So I am hoping we will get notice of what chemicals are being planned so we can research them BEFORE Connie gets them injected into her body.

Connie has been walking around a lot and trying to spend more time outside. We have walked around our path about every day, and today we walked up and down our road. She had some seeds she had collected and wanted to disperse them alongside the road. Surprisingly mosquitoes haven't been too bad. I cleaned out the bird feeders as they had gotten pretty nasty, and the bird bath had mosquito larvae in it, so I dumped that and put fresh water in. I sure hope I don't catch some sort of exotic bird flu messing with that stuff. Those feeders were REALLY nasty!

 

[Caryl]

Sounds like today was a good day, yucky feeders notwithstanding. Hoping that tomorrow is a day with positive news from Connie's medical team.

Sent from my SM-A716U1 using Tapatalk

 

[WebSlave]

The meeting with Dr. Ellison was mostly good news. Or at least not bad news. With our situation, anything that ISN'T bad news, is good news, I guess.

The echocardiogram results shows Connie's heart to be within normal limits.

The CT scan didn't show any tumors throughout her torso, but did note some very small amounts of fluid in both of the sacs around her lungs. But all in all that was a good news thing too.

I wish Connie had gotten blood work done today to see what that CA125 tumor marker number is right now, but that didn't happen. So I guess Ellison felt it wasn't necessary to do right now. Not that I want Connie to get jabbed by yet another needle, but I am really curious about what that number is doing more than a month since the last chemo treatment. I would think a "cancer research center" would be curious too.

Anyway, Dr. Ellison wants Connie to resume chemo treatment but with a drug called Doxil. But first she wants Connie to clear this with her cardiologist before proceeding. I figured that echocardiogram was done for a reason. Doxil can cause heart damage, apparently. Yeah, it is one of those side effect things that affects some people, so I guess it will be the luck of the draw as to how Connie reacts to it. That is assuming the cardiologist OKs it. I'm not sure if this is going to mean a trip to the cardiologist and another echocardiogram first, or if they will just review the one already done at the hospital (TMH) last week. I believe that they took an echocardiogram themselves of Connie back in June or so. But we will see.

I am hoping that this drug won't have substantial side effects and Connie can get through the series without mishap. Doxil is apparently a pretty heavy duty chemo drug. I am thinking that with the clean bill of the CT scan plus her tumor marker number continually dropping (as of the last one noted), that this has all be heading in the right direction and Connie will be able to walk out of there with the label of "No cancer detected" put in her folder. Of course, she will have to have followups done, but that is what it is.

I am trying to keep a stiff upper lip over this (which is a better expression, IMHO, than a friend just threw my way recently) as reading online about possible side effects is enough to turn your hair gray. Or as in my case, make even more of it fall out. "Turning gray" was a LONG time ago.

 

[WebSlave]

One of the side effects of that Doxil drug I have been reading about is called "Hand-Foot Syndrome". Dr. Ellison indicated that that this is the most common of the side effects she has seen, and has recommended that Connie find methods to chill her hands and feet during chemo and also periodically several days after chemo.

Even though we haven't heard back from the cardiologist yet, I went and found some cooling mittens and socks with gel packs in them and ordered them, just in case.

I hope Connie gets through these Doxil treatments with minimal side effects. But honestly I am pretty apprehensive about it. The chems she got in the past ALL caused some side effects that got her taken off of them pretty quickly. So apparently she is VERY sensitive to this stuff. When I read about one possible side effect of Doxil is HEART FAILURE, well, obviously this gets my own heart to feeling kind of crushed. And certainly sorta explains why Dr. Ellison wants Connie's cardiologist involved. Personally, my thoughts are that if you are expecting possible heart issues from this drug, then dammit, pick something else!

So here we are into September already. The entire Summer has been nothing but a painful blur.

 

[Dyscophus antongilii]

I hope Connie does okay with the above treatment. I think the items you got, just in case, she has side effects, will be very beneficial. Like, just in case, she needs them.

 

[WebSlave]

Well, the cooling gloves and socks for Connie got here today after all. At least one good thing on the ledger, anyway.

Connie had an appointment this morning to get blood drawn for her thyroid doctor. So we were up bright and early for that. The girl who drew the blood did a good job and didn't have to poke any extra holes into Connie's arm.

While we were out that way, Connie dropped off a fact sheet about Doxil to her Cardiologist's office, although I am pretty sure she could look it up if she didn't already know about it. When we got back home, Connie emailed the cardiologist's assistant to let her know about that fact she she dropped off.

Haven't heard a word from anyone yet. I am thinking the cardiologist just doesn't want to get involved in an oncologist's decision about what drugs to use. So I texted Dr. Ellison and mentioned my thoughts about this and also how I was feeling that with the CA125 numbers having been dropping rapidly with the few chemo treatments Connie has had, plus the relatively positive CT scan results, was such a harsh drug so laced with potentially devastating side effects really the best plan at this juncture? Is there a PLAN B? Probably will piss her off, but hell, I really don't care at this point. Connie has been in a real funk all weekend feeling that no one (except me, of course) really gives a crap about what happens to her.

Today she is just feeling exhausted. She has been taking a LONG nap most of the day. I had a short one myself, but I can see her sinking deeper into depression. I am trying to help her all I can, but it is REALLY tough trying to keep from being sucked down into that same whirlpool.

So I have been taking the bull by the horns today to try to get things moving. Time is of the essence with cancer, and I sure as hell am not going to allow Connie to die by being brushed aside or neglected by anyone.

I did get texts back from Dr. Ellison, and apparently she is saying that Doxil is the mildest and best chemo drug for Connie at this time. The other options are more severe with the potential side effects. And she did reach out to the cardiologist about the sign off. All she got was more or less non-committal, IMHO, saying for Dr. Ellison to go ahead as planned.

In the meantime, I have reached out to our PCP to see if we need some sort of referral for a second opinion from another oncologist.

I also contacted our health insurance provider to see what the procedure is if Connie wants to see another oncology center that is over in Jacksonville, which is outside of the local area serviced by CHP.

So we will see. Tomorrow (09-07) my 4 weeks will be up that my cardiologist said for me to take it easy. So I am feeling up to start kicking people's butts REALLY HARD....

 

[Lucille]

So I am feeling up to start kicking people's butts REALLY HARD....

So on account of the fact that it looks like you are getting back to your usual kick-ass self, we are now reinstating a tradition that has fallen by the wayside the last couple years: y'all's birthdays.

Happy belated birthday to both of you!!!


I want to repeat this as y'all's birthdays come up next year.

 

[WebSlave]

So on account of the fact that it looks like you are getting back to your usual kick-ass self, we are now reinstating a tradition that has fallen by the wayside the last couple years: y'all's birthdays.

Happy belated birthday to both of you!!!


I want to repeat this as y'all's birthdays come up next year.

Thank you.

But honestly, our birthdays this year were not anything to celebrate. Connie actually has two of them. Her real one is in February, but when we lived up in Maryland, the weather was always so crappy that she decided to move it to May 4th. If I remember correctly, she was recovering from her cancer surgery that day this year. Mine in July, I was fresh out of the hospital from having my second stent put into my left coronary artery. The first one on Memorial Day went into my right coronary artery.

So yeah, our birthdays weren't exactly what you would call "happy".

I will probably see another one. With Connie, well, I am praying that she will.

 

[WebSlave]

Connie and I have been taking pretty long walks lately, as weather permits. We walk up and down our road. Skeeters haven't been too bad, so that is a blessing. The exercise is good for both of us, and Connie really looks forward to those walks. I am looking at them as possibly my last memories of being with her.

She hasn't had any chemo for over a month now, and is actually acting like her old self. Does my heart good to see that in her.

We think a second opinion of her cancer situation is in order now, but it's been a struggle. She has to get a referral from her PCP, which ordinarily wouldn't be a problem, but they are apparently having problems at our PCP's office. Our PCP's last day there was this past Friday. The girl at the front desk there helping Connie with this had her last day there on Friday as well. Connie picked up a paper copy of that referral on Monday and we finally got a copy of her medical records via email. That all has been forwarded to another oncology center referenced in that referral. But it is like slogging through hip deep mud getting the ball rolling.

Honestly, Connie is scared to death of that Doxil chemo drug Dr. Ellison is talking about infusing. Scares the beejeesus out of me too. Seems like many of these chemo drugs might be able to help somewhat with the current cancer, but many of them can cause you problems that you will die from later on too. Oral cancers, leukemia, heart failure, etc., etc., etc., frickin' etc.... and they measure "success" with those drugs as extending the life of the patient just a few more months. They are NOT cures.

The only real solution is to not get cancer at all, because when you do, your normal life just came to an end. But good luck with avoiding it. I don't know of anyone who was more health conscious than Connie with her diet, her activities, and her whole life in general. Obviously didn't help her one bit. She has spent a small fortune on health foods, dietary supplements, vitamins, exercise equipment, etc. She could have done just as well by just flushing that money down the toilet. Kind of makes our efforts to avoid COVID as hard as we have the past two years or so quite laughable in a gallows humor sort of way. We wasted the past two years hunkering down trying to stay healthy until the storm blew over. Only to have the ground collapse underneath us.

 

[WebSlave]

Yesterday Connie had appointments with her thyroid doctor and her cardiologist. The blood work done for her thyroid looks pretty good, which was a surprise, as we were both expecting the chemo treatments to have thrown that in a tailspin.

The meeting with the cardiologist was in reference to her getting that Doxil chemo treatment. Dr. Dellock said that the results of the echocardiogram showed that Connie's heart is in excellent condition. So that is a relief. I am guessing that maybe Connie will restart her chemo treatments next week.

With Connie acting and looking like she feels almost normal now, it is very easy to deny in my mind what is going on inside of her. I am really hoping that this pause in the treatments doesn't turn out to have been a real bad idea. She has been feeling really tired lately, and that does concern me.

 

[Insomniac101]

. . . Connie really looks forward to those walks. I am looking at them as possibly my last memories of being with her.

This makes me so sad, and I'm sorry that you're having thoughts like that. What are Connie's doctors saying?

I don't know much about ovarian cancer, but I remember so much focus on research, after Gilda Radnor died from it. That was 30+ years ago, and there must be better treatment protocols developed during that time.

 

[WebSlave]

We don't know what Connie's oncologist (Dr. Ellison) really has in mind. It has been nearly 8 weeks since her last chemo treatment. Thyroid numbers look good, and the cardiologist says Connie's hard looks really good. So whenever the Doxil treatments will start, hopefully her heart won't suffer any damage.

So Connie has an appointment with Dr. Ellison next week, and also an appointment with a gynecological oncologist at a different facility for a second opinion.

We are still taking our walks. Today (Saturday) we walked up our road and happened to run into a pastor at a really small Baptist church and the end of the road. We spent quite a long time talking with him. He asked to pray for Connie, and we all wound up with tears in our eyes. Strangest darn thing, but while we were talking with him inside of his church, the front door flew open. No wind, and there were no other doors or windows open, so no breeze through the church. I just said, "Come on inside, God."

Did I mention that when we were visiting our friend Rickey's place that a hummingbird swooped down behind Connie's head and just hovered there about a foot away from her. Connie wasn't wearing any bright clothes or anything that would attract a hummingbird thinking it was a flower or something. Rickey said that in all the years he has lived there, that was the first hummingbird he has ever seen there.

I think Connie would like to go to church, but she is still really nervous about being in any crowds with her immune system likely still being on the blink from the chemo drugs. We signed that pastor's bible, leaving the address, and he came by later that day to apologize for not trying harder to give us more comfort and encouragement. Seems like a decent person. But he seems to get teary eyed almost as easily as I do lately.

Not sure how Connie and I got on the conversation, but it came up that nearly everything on our property we have done together. She said that if she were to pass away, then everything here should bring me happiness with those memories. I didn't have the heart, nor the ability without my voice cracking, to tell her that it would do just the opposite. It will be like thousands of cuts to my heart. Every single day.

Her hair has gotten really sparse lately. She is not sure continuing with that DigniCap thing will be worthwhile to do with the Doxil treatments. Dr. Ellison said Connie wouldn't need the DigniCap with the Doxil, but did not elaborate on the "why" of that statement. There is a possibility of permanent hair loss, apparently.

I sure wish Dr. Ellison would do one of those CA 125 tests on Connie. I would REALLY like to know what that "tumor count" looks like right now. If the number is going up because of the long delay resuming treatments, well, let's just say I won't be very happy and leave it at that.

On the plus side, Connie acts like she is feeling really good. She seems to tire easily, but we haven't been having naps like we used to do. The days seem to unwind very quickly lately. Not just from the days getting shorter, it just seems like all the clocks are running way too fast.

As for a Primary Care Physician, both Connie and I filled out applications for a doctor we used to see a long while ago. Not sure why, but we had to change health insurance, and this doctor did not accept the plan we had, so we had to go elsewhere. That is no longer the case with insurance, but not sure if we will get in there or not. Our current PCP office seems to be in chaos, so staying there just doesn't seem to be an option. We have enough on our plate without worrying about them dropping balls all over the place concerning Connie's health.

Anyway, concerning chemo treatments, it just seems like nothing much has changed in years, as far as I can tell. There are alternate therapies, much like you have probably heard concerning COVID, but these seem to get swept under the rug in favor of the "tried and true" drugs that the pharmaceutical companies still make immense profits off of. So you really have to dig hard and dig deep to find out about those alternatives, or even things that would possibly help with the side effects. Cancer treatment is really BIG business, so it saddens me to think that even if a cure were to be found, it would be way to costly for that business to release it to the public. Heck, maybe that has already happened. I guess you would only know by keeping track of the number of powerful wealthy people who DON'T die from cancer.

I guess next week is probably going to provide some answers and perhaps some plans. I sure would like to get a heaping shovel full of good news. Connie is steeling herself for the Doxil treatments and is hopeful she can power through the bad side effects and get through them with an A+ report card after 2 or 3 treatments. I will be helping her through it, no matter what.
Heart, don't fail me now.

 

[WebSlave]

On top of everything else going on, looks like the long term hurricane forecast is predicting a major hurricane coming this way at the end of the month. We are in the buillseye. I have no idea what I will do if Connie is really sick from chemo at that time.

 

[WebSlave]

Well this is good news, I believe! Connie was thinking she might need to have blood work done at that pre-op meeting she has tomorrow for her port surgery. I told her perhaps the blood work she just had done on 09-20 would suffice. We got access to the portal that Dr. Ellison uses for their medical records, and had printed out all of the blood work results a day or so ago. But the paper report that Connie had looked rather sparse, so I went back into the portal to take a look.

Yeah, the one online is much more comprehensive, so I started to print that out. But wait a minute! Then I noticed that THIS newer report included the results of that CA125 tumor marker test I had asked for. I wasn't expecting to see that result for another week, as it seemed that is how long it took previous results. But there it was. The number was 154. So even with Connie being without having any chemo treatments for 8 weeks, the number dropped from 211 to 154. What is considered as "normal" is 0 thru 38. So now Connie is wondering if she even needs that port put into her chest. She might only need a few more treatments and she would be considered as being in remission (I guess that is the correct term) and would then go onto a maintenance schedule, perhaps of an oral drug and not an injectable form. Frankly, I think any surgery should be avoided unless necessary. Especially ones that stick things inside your body to stay there. And ESPECIALLY something that will put a tube into a vein going directly into the heart.

So I think Connie has in mind running these results by Dr. Stephens' office (the new gynecological oncologist) to see what she thinks.

I was REALLY hoping to see that CA125 number dropping, even after her being off of chemo. Maybe I am just being stupid and/or naive, but that just strikes me as being really good news.

The below graph shows the results of all the CA125 tests except the first one taken at the hospital right before Connie's surgery. That one showed a number OVER 9,000!

 

[WebSlave]

Today (January 8, 2023) is our 45th wedding anniversary. We were married in 1978. I was rooting around in a cabinet and stumbled on some really old photographs of Connie and I. Dated September, 1982. They are prints, and they are rather faded and color shifted to a kind of rust color, so I had to modify them to try to return them to a more natural look.

 

[Socratic Monologue]

Happy Anniversary, Rich and Connie!

Those are great photos.

 

[WebSlave]

04-27-2023. One year to the day from when Connie was diagnosed with stage 4 ovarian cancer.

"427" used to be a special number for me for a completely different reason, but I guess it is now preempted by this more significant reason.

Hopefully I will be able to say on many more future April 27s that Connie is still alive and doing well.

 

[Caryl]

Happy Anniversary! What a joyful thing. Congratulations seems such an inadequate word, but huge congratulations and prayers of thanks, along with prayers and wishes for many more!

Sent from my SM-A716U1 using Tapatalk

 

[AbsoluteApril]

Lovely photos and memories, Happy Anniversary!

 

[JColt]

Awesome photo's Rich!