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Topic: Rant -

Forum: Caring for Someone with Stage IV or Mets —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Sep 6, 2020 12:17AM

MexicanMary wrote:

Nearly 16 years ago, my mother was diagnosed with BC. She "tried" to "fix" her breast with medical ointments and prayer. (i have nothing against prayer, I believe) Of course, that did not help and when she confessed to us that she had "something" in her breast and by the time my sister shook her ass (it did not take long tho), her tumor was grade 3. She did not have met anywhere and we are thankful for that.

So, my sister (who is an ENT) got a teacher of hers to help us out. He operated on mom and took out the entire breast and 46 ganglia (back then it was a huge amount, now it seems it's not that shocking.) She underwent chemo and radiation therapy. The standard procedure. My sister and I got her all the literature on the matter we could find and we learned as well.

Years went by and we began dealing with the aftermath of the radio and chemo. My mom has always been "somewhat" anemic. And she got really, really sick of it. so much so that I took her out of the HMO we had and took her private as they were too lazy to work on her quickly. Nearly lost my mom.

For the past 10 years or so we have dealt with anemia, hypothyroid problems, varicose veins, gastric diverticula, two falls down the stairs and arthritis. My mother is currently 71 years old but she was a skinny child, always malnourished and my POS father never gave her money (nor did she took it) to take care of her health.

So last year she complained of backache. We took her to the doctor and he said it was mets. he suggested we did a pet scan to see if she had any other mets. Pet scans are supposedly accurate and good; but they are only as accurate and as good as the technicians and doctors that interpret the results. So the results were inconclusive. Half of the interpretations state that mom has mets in spinal column, liver and lungs and half of them state that only in spinal column.

I guess they are both bad. One is worse than the other, but none of them are good. The doctor that treated mom told us that "there was hope for recovery" while winking at my sister as saying "yep, she's dead"... I understand doctors need to distance themselves from the patients, otherwise it would be unbearable. But 'cmon!

So, we went to the doctor that takes care of the chemo. The waiting list was LOOOOOONG, so I spent all the money I do not have taking mom to any number of private doctors. Seeking someone who would actually read the interpretation and NOTICE the discrepancy I was clearly seeing. None of them. Each one promised "to do their best and to see what could be done" of course, therapy would be in the thousands.

Mom was convinced she was going to die and there was nothing else anyone could do for her. Those were very dark days as my sister also believed that Mom's time with us was over. I was SO furious and so desperate. I did not know what to do or how to talk to her. Miracles happen, medicine has progressed and I have read so many stories of people that live so many years with mets that why would it be so definite and right now?!

Eventually, we got the appointment for the HMO chemotherapy doctor. He took a look at the PET scan and said: "hey! there are two results here!!" Faith restored. He explained to my mother that, of course, she could choose NOT to have chemo nor radio done and that he could help her with pain management, but she would definitely die. Or she could risk it and fight. she had more than 60% of beating this time around as well.

Despite it all, I have never thought that mom could say: "nah, i'll pass" She took the fight. This time would be far more aggressive as the mets is a whole new ball game. Chemo doctor said he did not find mets in liver nor in lungs. He asked for an xray to confirm and he saw some "not necessarily mets" signs. We proceeded with radio to stop the mets in my mom's spine.

The radiotherapy doctor also saw the PET and also mentioned the two different results. He said: Nah, spine mets is NOT a death sentence. If there is mets in bone, we radiate. That will stop it. for sure. Nowadays its far more efficient. afterthat we only need to ensure that your bone recovers. Like a fracture.

She took chemo. chemo came along with zoledronic acid to help her spine recover. zoledronic acid is given to people with ostheoporosis as well. The problem is that it beats the heck out of them! pain, suffering, fever... the first dosis we spent 5 days sleeping about 3 hours each night because mom was in pain. the first 36 hours she was really high in fever.

After the first round of chemo, chemo doctor asked for a check xray. He said (and I quote) "who have you been praying to??? this is completely clear!! NO dubious signs, no cancer, no nothing!!" I still cry when I remember this. He stated that mom would finish her chemo round and then get a final xray to ensure that the "cancer" was gone this time round. with two years of zoledronic acid intake once a month.

She finished her chemo rounds just as Covid arrived in Mexico. She didn't had time to get the xray as we went into lockdown. No zoledronic acid has been taken anymore; she begged us not to give it to her anymore as it made her feel terrible; with her conditions (all of them) we do not want to risk her vomiting and having to run to the hospital because of gastric bleeding and so on. so the zoledronic acid has been suspended.

And we are in the hard part, the recovery after the chemo and the radio She complains -of course- of back pain even though she moves a little more and can stay sitting down for a longer period of time. My sister got a nutriologist friend of hers to provide care for her as she's loosing weight and she's still anemic. The diet from the nutrionist seems to be working at least in terms of her taking more protein. Her words are more on point, she confuses words with less frequency and has the will to fight us and to call us names and give us grief.

Today, no less we had an argument on regards of the nutrionist. My sister is somewhat of a karen and her dog is 17 years old, so she tends to focus on the wrong things. anyway. mom told me she cursed the day she fell in our care, depending on us for care and sustenance.

Since she begun with the pain in her back, she was been mainly staying at home. Driving causes her pain as there are always bumps on the road. But she stopped going out as soon as she started the radiotherapy as a precautionary measure against seasonal flu and influenza. Now, of course, the pandemic. So she has been "locked" inside since august last year.

Of course, she's not alone. I am here with her. I work from home, so staying in the lockdown is not a problem . However I did use to go out once a week to the grocery store or the bank. now, since March, only once a month to the bank. It is hard, she needs to have company, she feels "alone" I used to work 16-18 hours a day now I work about 3-8 hous a day (tops). There are weeks when there is nothing I can do right. everything I do is wrong or bad or something. There are times when she "needs" to do stuff and she does them in a manner than I need to go behind her and redo them.

If I want to take over, she gets mad because I do not have patience. I treat her roughly. I am a rascal... so on and so forth. I get mad, I get upset. I get resentful. I try not to cry because I know it is not personal, I think she's just ranting.

She used to be a very social person. she used to be a very active woman. she used to do things fast and do a lot of them at once. That infuriates her and I think she takes it out on me. and I mean me because my sister retaliates and only makes things worse. Since forever I tend to mediate between the two so that the bloodshed is not as much, just a few drops, but I do get tired and I am loosing weight... hahaha

I guess this is what happens when the caregiver is the one that ends up dying instead of the severely sick person? She does not want to talk to a psychiatrist or any therapy person. she says she's not mad (looney)and I just curl up and take all the jabs.


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Sep 6, 2020 06:30AM Georgia1 wrote:

Oh my goodness, I am so sorry. Unfortunately I'm not at all familiar with the healthcare system in Mexico, but is it possible that you could get someone to visit her to bring a meal or check on her health? Or I wonder if she now has dementia and that needs to be checked out? My own mother treated my sister so horribly that we asked her doctor to do a complete workup and indeed she had advanced dementia. It wasn't easy to move her to a memory care facility but now she is very happy there and my sister can visit with her in a less stressful way.

But for yourself, I do think you need to get out a bit more, wearing a mask of course, just to give yourself a break and some time alone. Being a caretaker is so very difficult.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 6, 2020 11:22AM moth wrote:

This all sounds horrible and so hard on everyone. One thing jumped out for me - once it has spread to spine or anywhere else, it is NOT curable. There is no "beating this" this time around, not when it's stage 4. All the treatments are to buy time... and quality of life is important too. If the side effects of treatment are too much, it'll be hard for her to continue.

Covid and lockdowns sure make everything harder.

Have you been seeing a therapist or counsellor for yourself? As a caregiver you're under tremendous strain. Take care & best wishes to your family
I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Sep 6, 2020 11:27AM MexicanMary wrote:

Hello Georgia.


Mexican Health care under the current administration is terrible. Children with cancer all over the place are dying because there are NO cancer specific medications. And that is happening because the current administration is full of inept people.

My sister, mom and me we all live together. So her having her meals and keeping a good overall health is not that hard. I hadn't thought of any dementia but I guess it could very well be, after all, she was an abused child and ended up marrying an abuser; so it would be a logical consequence to develop some sort of dementia. I will treat all her tantrums and all her complains like that. I think it will be easier for me.

In terms of actual treatment she doesn't want any of it. My guess is that the depression of having mets has been too much for her and she's just not having any more doctors nor medication. Maybe in a later date she will accept something.

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Sep 6, 2020 11:39AM MexicanMary wrote:

Hello Moth

An oncologist friend of my sister gave us an explanation that seems to be the most "acceptable" one. He said that every single one of us has cancer, as it is a cell problem and we all have cells and any cell can develop these problems. The difference is in the fact that not all of us have cancer flares.

In my mother's case, the only difference between her and a diabetic is the name of the condition, the way to treat it and that is it. Any of them could die at any moment from health condition complications. I do not expect nor I wish for my mom to live forever; at my old age I have come to realize that it is a very cruel wish, I pray for her departure NOT to be in the middle of suffering and pain; I know that once she leaves she will let us know that she arrived at heaven (or wherever it is) safely and is chatting the night away with either Jesus or any of the many friends that have already taken their leave.

She´s 71 and according to the chemo doctor she's good to go; so a life expectancy of 5 or 20 years is not farfetched. Of course I do not want her to leave; and I would love to hold on to her as much as possible. She's only 20 years older than me, so I guess my own mortality also scares me. hahaha even though my lame-ass father's family all have been long-living, his mother died the youngest at 96 from any number of cancer problems. BAHAHAHAHAHA

After last night's rant I feel much better. and here is the punch line: My mother's family is a total unknown. Her mom developed diabetes (but of course, she had terrible eating habits, always ate what she shouldn't and smoked like a truck driver). But no cancer. My father's family have: (wait for it, as all are diagnosed problems)

* dementia

* Digestive tract cancer

* Skin cancer

* Breast cancer (this patient experienced first cancer on both breasts with a 15 years separation in between -and oh, yeah, Karma is real)

* Congestive heart failure

* diabetes

* intestinal cancer

* prostatic cancer

* Stroke

And I have to say all of these are from the immediate family of my father so my prognosis is gloomy. At least, so far, at my 51 years old, I have none of those. (at least that is what the people inside my head say bahahahahaha)


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Sep 6, 2020 12:10PM Georgia1 wrote:

Gotcha. Sending you best wishes that things improved, and I'm glad the "rant" made you feel better. Come here anytime you need to vent.

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 6, 2020 12:11PM moth wrote:

Stage 4 cancer, ie cancer which has spread beyond the original site, is *not* the same as diabetes or any other chronic health conditions.

Stage 4 breast cancer is incurable and terminal. Median survival is 3 yrs and that's for people in continuous chemo/immunotherapy or hormone treatment.
I take weekends off

Initial dx at 50. Seriously?? “Sometimes the future changes quickly and completely and we’re left with only the choice of what to do next." blog: Never Tell Me the Odds

Dx 12/2017, IDC, Left, 1cm, Stage IA, Grade 3, 0/5 nodes, ER-/PR-, HER2- (IHC) Surgery 12/12/2017 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 2/14/2018 AC + T (Taxol) Radiation Therapy 8/13/2018 Whole-breast: Breast Dx 2/2020, IDC, Stage IV, metastasized to liver/lungs, Grade 3, ER-/PR-, HER2- Chemotherapy 3/18/2020 Taxol (paclitaxel) Immunotherapy 3/19/2020 Tecentriq (atezolizumab) Chemotherapy 11/26/2020 Abraxane (albumin-bound or nab-paclitaxel) Dx 12/9/2020, IDC, Right, Stage IV, metastasized to lungs, Grade 3, ER+/PR-, HER2- (IHC) Radiation Therapy 12/9/2020 External Hormonal Therapy 12/16/2020 Femara (letrozole) Dx 1/28/2021, IDC, Left, Stage IV, metastasized to bone Radiation Therapy 3/3/2021 External: Bone
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Sep 6, 2020 12:11PM MexicanMary wrote:

Hi Georgia.

Thank you! Yes, all good vibes are welcome! and yes, i will do that. Love you and ssending you good vibes back from Mexico <3<3<3

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Sep 6, 2020 12:14PM MexicanMary wrote:

hi Moth.

yes, you are definitely right. It is not the same. My point was that patients with cancer can only assume that it is cancer what most likely cause them to change planes from the living to the spiritual (I do not want to say death....) and that all you can do is believe that you will reach past beyond the median survival and go beyond

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