"Marie", has a new primary care "Doctor" now

However, had I caught COVID in 2020 or the years afterward, I would have sought alternative treatments because it was clear that the medical establishment was on the wrong side of that one, and I'm not forgetting that Trump started that path in the wrong direction, handing the last few months of his first term over to Anthony Fauci. Things got worse with the Biden Administration but I haven't seen anything to suggest Trump would have done otherwise.
 
"Update", on Marie, If I repeat anything, Im sorry, OK, Marie is asleep now after trying 1/2 hydrocodone and 1/2 Tylenol for about 1/2 hour; I'm going to let her for two hours if she can, because of the way we're both not sleeping right, off and on all night. Foxy, is laying beside her on the floor, dogs seem to really be affected with all that keeps happening here she's on walker, shouting at times from a sharp pain and such.


Our hearts go out to y'all for the advice y'all give and support too. I had written the first paragraph; only to erase realizing I was repeating some stuff that I had written in the last update. I didn't care to much for the last ER Dr, because of him not injecting pain med into Marie because I would not let him go with cat scan to her brain, lungs and biopsies, to find out where it's coming from, But I feel the Oncologist will know what's best, and in my mind, I'm going to have to live with what's done and sometimes it's easy to make mistakes even for Dr's, and their not in love with her like me. I know if the shoe was on my foot she would fight for the best treatment for me too.

After we were back home from the ER the pharmacy called to say there was a hydrocodone prescription called in for her. So at least he did that and she tried 1/3 pill for the first time with Tylenol yesterday and she said it helped some, then at 11:30 am as I said above seems to help pain, she's still quite in there sleeping. Strange how things go, you never know how fast that your life can turn upside down. Anyway I'm going to call oncologist again tomorrow if they don't call by 12pm and hoping Marie does good with hydro until we get there, I think but not sure I told y'all about reaction of oxycodone; It was horrible thought I would die too that night, Cindy our grand baby who is 38 now rode with Marie and I headed for ER again but ended up at waffle house instead until she calmed down. When Cindy was in diapers, 1 yr old, and up to six use to go everywhere with Marie and I in our old van which was the one Marie used for catering truck, shrimp Trump truck; Cindy would help her Nana get the shrimp out cooler for customers with drum stick to weigh, and the other night was the first time Marie Cindy and I had rode in van since way back then.


I do hope our decisions are the right decisions, and we can whip this, so many mistakes in past that we've paid for that you can't help but be nervous, and worried too. Figure I will wake her after two hours so it won't make her have problems sleeping tonight. I've been busier than hell these last six months and worried if I wake up my mind won't let me go back asleep, then all day keeping your train of thought, is hard. This isn't about me,but mistakes I mentioned I think a couple were using some castor oil eye drops has caused my eyes to pop almost like a stye on my left eye I've been dealing with in left eye, sore as all get out, which is healing, but started in right eye now so we've been trying different things like eye drops vissen which may have caused it, I've been hearing of folks suing company's, dew to problem on recalls and such. Not sure but am sure one of them is hurting my eye lids, I'm fixing to post this stuff without rereading so again sorry if I've messed it up. Maybe edit later, Need to look in on Marie and wake her soon. Thanks will post more later, been so so hectic around here, it's frustrating the heck out on me to see her go through this, but going to try and by smart healing her at any means possible, together 45 year now, would be lost without her. :)
 
@Jake Smith I am not too good with fluffy adjectives, but I hope you know you folks are in my prayers .🙏🙏🙏🙏

I am repeating myself when I say I took care of my husband when he got too sick to take care of himself. He was a very strong willed, individual and more often than not, would not listen to anything I had to say, and sometimes not even his doctor. Like when he initially was diagnosed with prostate cancer that had metastasized, they wanted to start him on traditional treatments, and he refused simply because he was afraid of losing his hair. Instead, he went on experimental drug treatments that as far as I’m concerned, didn’t do one thing to help him. They may help the next person, but all my husband did was spin backward and not make any progress at all. I tell you that because it is something to think long and hard about if it is offered to your wife.

Toward the last few weeks of his time on earth, he would confess to me that he was afraid he really mucked that one up by refusing the traditional treatments.

I don’t understand why your local doctors are playing roulette with your wife’s health in terms of not giving her what she needs or delaying her appointment with an oncologist. Everything I read is not at all the way things were for my husband. Maybe it’s different with prostate cancer because the diagnosis was quickly based on his PSA numbers and from that point forward, which involve 4 to 5 years, he only saw the oncologist at one of the two cancer treatment centers, that are both within 15 miles of our home.

There are no pain meds that worked for him. He was very drug sensitive and any of the oxy-whatever drugs sent him on LSD trips that I would have to wake him up out of, or he would be awake and not go back to sleep for a few days. The best thing that worked for his drug sensitive person was sometimes Tylenol, sometimes ibuprofen. It would just depend. He never mixed them.

Eating became an exercise in futility —- he got to where he did not want to eat anything because nothing tasted good. I was doing good to get a bottle of high calorie or high protein Boost down him once or twice a week.

I am thinking it was probably his last six months that he resorted to morphine IV drips. He got them two days weekly and they helped him.

You are your wife’s caregiver and also the caretaker of your property. You can’t complete every task at hand during this time, so carefully pick your battles as far as the home & property go. Hopefully your children can pitch in.. My only family is my brother who lives ten hours away, I was pretty much on my own, so I know from where I speak that it is all exhausting both mentally and physically. Best you can do is stay drill sergeant organized, eat as healthy as possible, and step back to take things one heartbeat at a time when everything seems overwhelming because it will occasionally.

I hope I haven’t offended you with my straightforwardness.


Don’t give up. Every day is worth it.🙏😇🙏😇
 
Thank you Connie!
We have two estranged sisters and two mothers (one of them has been bedridden for several years, the other one has ups and downs). SO went through three major surgeries in four years and some small stuff to keep life interesting. He checked himself out on day three every time even though he was basically helpless and refused home health or home physical therapy. I did crack one time, screamed at him that if he does not do what he is told I will have him forcefully admitted to a rehab facility under being a danger to himself and others. Somehow this got through to him. Could I do it again? There are no choices. But a trust is in place covering everything to the gnats derrière, house and large patio/garden is almost ADA (kitchen is pending and sinks need to be lowered. Only with an aide every day of the week.
You know how a patient develops physical strength out of nowhere. That is what scares me. FIL was basically bedridden and we took him from GA to NJ in an RV. I ended up with cracked ribs when he lashed out.
Whoever is the caretaker please demand as much support as you can get from medical devices, furniture to home health. Don’t wait for something. Demand it. Hospitals and clinics have staff dealing with this. Give yourself some you time be it a treat, a moment on the front porch, a call with a friend. Check for support groups. Understand that there is no guilt attached to either one of you.
 
Thanks, "Marie", and they did cat scans and MRI's, told us we could leave and gave us our release papers; only to come and catch us as I was taking her out ER, she said you can't leave it's cancer masses S1 and T12, we have to do MRI right now. WE had been thinking about the pulled muscles and would heal after going through severe pain for six months. It's like being kicked in the face by a horse, went into shock; I believe. Marie is such a trooper she said ok lets do it. :(
Jake you can and will take care of things. That is just the way old married folks are. Have you considered starting a journal not just with her medical appointments, findings etc but also with your feelings, pains and fear and the good moments!
 
Thank you Connie!
We have two estranged sisters and two mothers (one of them has been bedridden for several years, the other one has ups and downs). SO went through three major surgeries in four years and some small stuff to keep life interesting. He checked himself out on day three every time even though he was basically helpless and refused home health or home physical therapy. I did crack one time, screamed at him that if he does not do what he is told I will have him forcefully admitted to a rehab facility under being a danger to himself and others. Somehow this got through to him. Could I do it again? There are no choices. But a trust is in place covering everything to the gnats derrière, house and large patio/garden is almost ADA (kitchen is pending and sinks need to be lowered. Only with an aide every day of the week.
You know how a patient develops physical strength out of nowhere. That is what scares me. FIL was basically bedridden and we took him from GA to NJ in an RV. I ended up with cracked ribs when he lashed out.
Whoever is the caretaker please demand as much support as you can get from medical devices, furniture to home health. Don’t wait for something. Demand it. Hospitals and clinics have staff dealing with this. Give yourself some you time be it a treat, a moment on the front porch, a call with a friend. Check for support groups. Understand that there is no guilt attached to either one of you.
Good advice Marie.I insist on Jake getting on his tractor he loves for a while.We have 2 way radios, he takes one every time he is out of hearing distant.
 
@Marie Mallory @Jake Smith

Marie mentioned Ivermectin. I've read a couple of paths some folks take for COVID and for general prophylactic use. Keep in mind that I am a stranger on the internet and have no idea if ivermectin would be of benefit, so the following is just for chit-chat purposes and to give you ideas. If you get serious about this maybe you could try a cancer forum and see if any folks there are taking this path, what their experiences have been and what they are doing, then do a little research to verify. So the following is not a recommendation...just stuff I've read.

-Folks who do the "horse med" thing recommend the injectable liquid because it's cheaper than the paste and it has a longer shelf life. People mix it with something like OJ and drink it (THEY DO NOT INJECT IT!) Tractor Supply carries it, although I now see the injectable requires Rx (vet) approval. That was not the case last time I looked. Dunno how a Florida Tractor Supply might handle this. (Some people got horse connections.) This is the most economical option people have found for their needs. One can get 10ml non-needle syringes to extract/measure the dosage at Vitality Medical here for 24¢ each. The paste is a 2nd choice, and requires a scale to weigh out doses (one that weights grams to the right of the decimal point.) I got this one at Amazon for $17. It's dead-ass accurate 2 places to the right of the decimal point.

For human pills, Ivermectin.com is a trusted source. For a limited time, they are running a 20% off sale for everything on their site. Use Code IVM20 at checkout. They are not the cheapest online source but they are trusted both for the quality of the drug as well as not being a financial scam. An average COVID-sized dose (±12mg, depending on patient's weight) would be about $2 at the current sale price. 12mg from Amazon is $25 with a script required. Injectable horse ivermectin is about 40¢ per 12mg.

4 states have legalized ivermectin for sale OTC, with legislation pending in 9 others, but none of them are near Florida. From what I've seen, buying OTC is roughly double the price of Ivermectin.com and not widely available even though it's now legal to sell.

For other general purposes, Vitality Medical has all sort of medical supply stuff, and they have good prices and service.

As I said, I am not a doctor. But Marie mentioned it, so I thought I'd pass on what I've read to get you started.

edit to add: I just read your comments on another thread. Apparently you all are already on top of having ivermectin around.
The John Campbell video that I think someone posted already mentioned that some patients are going through conventional treatments PLUS the ivermectin-mebendazole treatments as well. I don't know if that is practical, but apparently they do not interfere with each other. He did not have data on the combination vs. the anti-parasitics alone.
 
The John Campbell video that I think someone posted already mentioned that some patients are going through conventional treatments PLUS the ivermectin-mebendazole treatments as well. I don't know if that is practical, but apparently they do not interfere with each other. He did not have data on the combination vs. the anti-parasitics alone.
I'm pretty conservative on taking "alternative therapies." I bought some CBD oil on an impulse and then decided that I don't really want to disclose that with the medical community on the list of stuff I take, and I don't want anything in my system that the medical community is unaware of, so it gathers dust, unopened.

If I had cancer and decided to take ivermectin, I'd ask my doctor if it would interfere with any treatment, then tactfully tell him I was gonna do it even though it was of no value. That way I'm not asking permission, and he would know it's in my system. But that's just me. And I'm talking in the hypothetical, since no one really knows what they would do when it's just a theory.
 
I'm pretty conservative on taking "alternative therapies." I bought some CBD oil on an impulse and then decided that I don't really want to disclose that with the medical community on the list of stuff I take, and I don't want anything in my system that the medical community is unaware of, so it gathers dust, unopened.

If I had cancer and decided to take ivermectin, I'd ask my doctor if it would interfere with any treatment, then tactfully tell him I was gonna do it even though it was of no value. That way I'm not asking permission, and he would know it's in my system. But that's just me. And I'm talking in the hypothetical, since no one really knows what they would do when it's just a theory.

Once I get appt with the doctor I hope he is the kind that allows me to be involved ,because Jake and I will be.We are steady reading on ways to make it easier and give Jake more time with me, long as its not too painful.Thank God Jake has these 4 dogs to care for if needed.
 
@Jake Smith I am not too good with fluffy adjectives, but I hope you know you folks are in my prayers .🙏🙏🙏🙏

I am repeating myself when I say I took care of my husband when he got too sick to take care of himself. He was a very strong willed, individual and more often than not, would not listen to anything I had to say, and sometimes not even his doctor. Like when he initially was diagnosed with prostate cancer that had metastasized, they wanted to start him on traditional treatments, and he refused simply because he was afraid of losing his hair. Instead, he went on experimental drug treatments that as far as I’m concerned, didn’t do one thing to help him. They may help the next person, but all my husband did was spin backward and not make any progress at all. I tell you that because it is something to think long and hard about if it is offered to your wife.

Toward the last few weeks of his time on earth, he would confess to me that he was afraid he really mucked that one up by refusing the traditional treatments.

I don’t understand why your local doctors are playing roulette with your wife’s health in terms of not giving her what she needs or delaying her appointment with an oncologist. Everything I read is not at all the way things were for my husband. Maybe it’s different with prostate cancer because the diagnosis was quickly based on his PSA numbers and from that point forward, which involve 4 to 5 years, he only saw the oncologist at one of the two cancer treatment centers, that are both within 15 miles of our home.

There are no pain meds that worked for him. He was very drug sensitive and any of the oxy-whatever drugs sent him on LSD trips that I would have to wake him up out of, or he would be awake and not go back to sleep for a few days. The best thing that worked for his drug sensitive person was sometimes Tylenol, sometimes ibuprofen. It would just depend. He never mixed them.

Eating became an exercise in futility —- he got to where he did not want to eat anything because nothing tasted good. I was doing good to get a bottle of high calorie or high protein Boost down him once or twice a week.

I am thinking it was probably his last six months that he resorted to morphine IV drips. He got them two days weekly and they helped him.

You are your wife’s caregiver and also the caretaker of your property. You can’t complete every task at hand during this time, so carefully pick your battles as far as the home & property go. Hopefully your children can pitch in.. My only family is my brother who lives ten hours away, I was pretty much on my own, so I know from where I speak that it is all exhausting both mentally and physically. Best you can do is stay drill sergeant organized, eat as healthy as possible, and step back to take things one heartbeat at a time when everything seems overwhelming because it will occasionally.

I hope I haven’t offended you with my straightforwardness.


Don’t give up. Every day is worth it.🙏😇🙏😇


Not offended at all, Connie, you know where I am coming from on this. Kids are hundreds of miles away and have their own battles there, so to speak. I'm doing exactly what you said, the best I can and thanks, sorry about your husband too.
 
So today we got a call from oncologist told us they have no referral as of today, so someone is "lying"; your guess is good as mine. I let Marie talk first to say what's been going on, and then spoke out over speaker phone that primary said it was there Thursday, and I spoke to Cristina there Friday and she said oh yeah referrals here I will switch you to appts and they will know more and set her appt.. They didn't pick up and I left a detailed message for appt.

Strange how the primary Dr had called us last week, and apologized to Marie, for not signing off on referral. Said she was sick for three days and didn't know why they didn't send her an email which she only had to clique to sign off.Told Marie referral is in now. Who's the liar here one of them is or something. How do you not get angry when you are already angry. :cautious:

Got Marie loaded in the van, things loaded left out locked front gate only to remember oh the cell phone I forgot, Marie says turn around and get it. Came back she said you want to walk so you won't have to do all the turning around. When I got to the porch the land line rang, it was Oncologist said she had reached the primary Drs office for them to send a referral, and as soon as she gets it, they will call to schedule an appt . I told her all about the run around we been getting with it, and that Marie is waiting in van for me to take her to pain management and how she's been in pain for 6 months now, she asked they haven't done a biopsy yet or a few other things too; I told her no, they done two cat scans and MRI which found out it's cancer not pulled muscles like we thought for six months now, they wanted to do brain scan, lung scan and biopsies but I told them not to do that because I want her to see oncologist before they start anything, for his opinion maybe he will know of type of cancer, where it is coming from and how aggressive it is. No more mistakes I hope.

Like a few years ago her BP was like 240/ 140 at fire dept. they said she needs to go to ER, we can take her in this ambulance I said I'll take her and they helped me put her in van and off we went; well while we were there, ER DR said we trying to get you a room ready to get BP down slowly because if we bring it down to fast it can kill you. The place was packed and everyone was wearing a mask, which was 2020 and COVID was starting; freaked her and me out thinking something was wrong, for everyone wearing a mask around here. After three or four hours she said let go before we catch something here because he kept saying still waiting on a room for you but were so packed it may be awhile yet; we left. Got home she took BP med and brought it down some and later slept to morning took off to Shands next morning because it was extra high next morning, got to see three dr's and they told her prescribing liserprill and you need to take it as soon as you get it. Both of us totally forgotten what ER Dr said about bringing it down fast and in Publix she took two of them and when we got home she fell in kitchen and I caught her before she hit the floor, she kept trying to get up and I told her lay still I'm calling a ambulance; she said no just take me to ER, so I did. Well come to find out she had a stroke and lost her peripheral vision or life.. So mistakes can be costly and we need none of those this go around.


Got to pain management Dr and explained cat scan and MRI results and that it's at S1 and T12 two cancer masses, and that's what's causing all her pain; he said so that's why she is hurting, I see she got hydro from ER Dr, is oxy not working? I told him no she took three through our that day, and had side effects that had her flying around the house at three am, and turning on every electrical light and fan and anything she could I woke and asked her what's wrong baby she kept saying I don't feel good I don't feel good over and over which scared the hell out of me, thought we both were going to die that night. He said she still has that I said no threw it out doesn't work for her, he said ok good I'm going to write a script for hydro 5 mgs since she's tolerating it better and set next appt for 5-19-2026; she asked what about a low dose of morphine and he told her we would have to start at 50 mgs and I don't think it would be good on you and a couple other things I don't remember right now.


Got back in van she took a half pill of the 10 mgs she had gotten from ER Dr, and told me let go to tractor supply and see if they have ivermectin I could take; I told her we need you to see oncologist first before anything like that she said oh of course I just want to see what they have and I intend on researching a lot more before doing anything. We got there and I asked guy at cash register if they have it for humans consumption he said no just the equine kind. Went back and looked at what they had, she recognized one of the names she had seen in her research. We bought the chicken and dog food since we were there, and she tried to buy me some shirts which I told her I don't need anything right now. She was using a walker instead of a wheelchair, that I cleaned up for her I had in the storage building for years since my back surgery. The hydro seems to be working ok so far allowing her curb pain somewhat without too many side effects. I did get to push her into the pain clinic in the old wheel chair and we used her cut out cushion in seat; so it does work, just needs a little more modification for comfort. Hope I didn't make too many mistakes explaining forgive me if I did and maybe I can edit later if I did. She is asleep now, in her bed; since sleep is off and on around here now. Thanks everyone for your support, going to make coffee, and rest a little.:)
 
I told her no, they done two cat scans and MRI which found out it's cancer not pulled muscles like we thought for six months now, they wanted to do brain scan, lung scan and biopsies but I told them not to do that because I want her to see oncologist before they start anything, for his opinion maybe he will know of type of cancer, where it is coming from and how aggressive it is. No more mistakes I hope.
Having a biopsy would have really helped getting into an Oncologist, pronto! I still can't believe they didn't do that in the ER after they suspected cancer. I am so glad to hear that you finally got to talk to an Oncologist office.

The most common place responsible for upper spinal cancerous tumors in women is breast cancer. Tailbone tumors are most commonly from rectal or colon cancer in women. In men, prostate cancer is the main source of spread. I don't see any reason for a brain scan because cancer very rarely starts in the brain. I am guessing your oncologist will take a biopsy and want a breast scan and possibly a colonoscopy. There will also be a lot of blood test.
 
I think you will end up with a team of providers, probably led by an oncologist but perhaps including a neuro-orthopedist, a therapeutic and diagnostic radiologist, perhaps even a clinical pharmacist and others. The oncologist will be the team leader and will oversee your treatment going forward. You are already in contact with pain management.
 
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