Mom passed away Mar. 7--and we only found out on Mar. 5 how bad it was.

Miscellaneous and Personal Stuff I Must Share
1

The backstory:

Mom had breast cancer in 2009; had surgery; got rid of it; refused radiation since she had opted for mastectomy and since she was in her 80s at the time. It came back in the same spot five years later, got it removed again, refused radiation. She was on chemo drugs, just once each time.

FF to 2016: She started having groin pain late in the year, then low back pain that got worse. Sure seemed like a pinched nerve. I spent the next couple months getting her to the docs, specialists, x rays, MRIs, physical therapy, on pharmacy runs, checking on her two or three times a day at her retirement home, the works, running myself ragged. Neck pain started up too. She could not get comfortable. Her caregivers were there to help as well, thank og. But she just kept getting worse, with more pain, debilitated.
I had her into an ER twice for pain relief. The third time around, she couldn’t even get out of bed without help. This was Feb. 27. Her c.g. suggested a different/better hospital and I took her there myself (paramedics helped her into my car—would not transport her since their rules require them to take the PT to the closest hospital, not the one you want).
I demanded that she be admitted and she was. She was there for several days and everybody saw her: neurosurgeon, infection doc , hospitalist, palliative care nurses, pain specialist, lots of nurses and CNAs. She was still very uncomfortable and then developed a distended abdomen from being bound up (I thought it was from narcotics but might have been from something else…bear with me.)
She was NPO by then, not that she wanted any food, just ice chips. They put in a nasogastric tube to decompress her stomach for some relief. Then they took her down to ICU and did CT scans.
That was when we found out just how bad things were. (March 5) From what my tired brain can recall, cancer had metastasized into the bones–hence the pain. She also had a hole somewhere in her stomach or abdomen. She refused surgery for that since she was so far gone and it would have only added to the misery or been all for nothing . Maybe there was cancer in there too…?
She was still fully coherent and capable of making decisions. She asked to be made comfortable and said she was tired of all the pain. She was then transferred to Hospice.
She died 26 hours later. (March 7)
Even the night before, she was still joking and talking with the hospice nurses, totally cognizant. After a while, the massive morphine doses rendered her unconscious. I went the next morning and realized from her vitals and her rattly breathing that she would be departing that day.
In hospital, ICU, and hospice, she got to see me, brother, his wife, their daughter, my cousins, her pals, some of my pals, our neighbors, and the hospital chaplains.
Just this past week, she was cremated and we had a small gravesite gathering (she didn’t want a big service) and then a life celebration at her retirement home.

      Two things I would really like:

  1. A decent night’s sleep

  2. An explanation of why somebody didn’t figure out sooner what was wrong. Not that they could have done much about it if it was spreading so fast, and she would have refused a regimen anyway, being nearly 91, but still.
    She had seen her oncologist in December and nothing was amiss in the blood tests.
    Evidently, cancer is beyond insidious.:mad:

:frowning:

2

I am so sorry for you and your mother, the whole family actually. Cancer is a sneaky disease. My mom has been treated, radiation and chemo, and has been deemed “cured” for what it’s worth. I cringe each time she has a checkup though.

An aunt of mine wasn’t diagnosed though, until it was stage 4. She accepted only palliative care, and it was just over two months from diagnosis to her passing.

Now you need to sleep. Don’t set an alarm, let your body rest. Whatever else needs doing will take strength, and sleeping will help.

We are here to vent to, or ask questions of.

3

My very deepest condolences. :frowning:

4

My deepest condolences.

5

Thanks, folks. But now I’m telling myself not to blame myself for not figuring it out sooner. I was focused on nerve pain and thought epidural blocks would solve the problem.
And I’ve heard from some folks in medicine that cancer can hide and then come out suddenly and in 2 months it’s all over. I wish my mom hadn’t suffered so much but I’m glad it didn’t go on any longer than it did.
I lost a lot of sleep, missed meals, and spent a lot of hours in the ER and other places so I’m trying to catch up, not that I ever can.

6

My most sincere condolences.

As others have mentioned, cancer can be sneaky. My grandmother’s back and leg pain was initially diagnosed as microfractures related to osteoporosis - not unexpected in an 80-year-old woman who’d had eight babies and a typical Midwestern American diet. It wasn’t until one of her legs shattered under her weight that they realized she had multiple myeloma. By then she’d been very sick for a long time.

Don’t beat yourself up. But don’t push yourself to “get over it” either. Take your time, and get that good night’s sleep.

7

That just sounds like a nightmare of anxiety to go through. I’m sorry you had to experience it. In the back of my mind while reading your post I kept thinking how fortunate your mom was to have such a diligent advocate on her side.

I’m very sorry for your loss. You did everything right, don’t beat yourself up.

8

My heartfelt condolences to you. Don’t blame yourself, cancer is sneaky, and so are other things that cause problems. Eldercare is difficult, and doctors don’t know as much as we wish they did. Nor do they or their assistants return calls often enough. You’ve done a good job. Please do take as much time as you need to sleep and grieve.

9

I see now from some posts here that doctors often mistake cancer for something else. Now I won’t be so haunted about it. It’s a good thing to find this out, really.

Tapiotar : Yes, you’re right–neither her g.p. nor her orthopedic doc ever responded to my faxes about how she was worsening. Maybe they thought I was exaggerating or being hysterical. IDK. I hope not.

FloatyGimpy: Thank you. I did everything I could think of. And I have had a crap-ton of anxiety. But I did get some good sleep last night.

10

Condolences to you and yours. Losing a parent is never easy. Then again, 91 years is a heck of a run, and you have nothing to regret as far as I can see. Your mother couldn’t have asked for more from you.

I hope the happy memories overwhelm the last difficult ones.

11

I am very sorry for your loss.

12

My Mom died on February 26th, after spending the past 5+ years dealing with ovarian cancer. I, too, struggle with guilt; why didn’t I pay more attention when she first started feeling bad? Why didn’t I press her docs to do more tests and perhaps find the cancer before it got to Stage IV? Why did this happen to her to begin with? She ate well, exercised, and actively did everything she could to stay healthy.

Hers was a more gradual decline; I’m not sure that’s any better or easier than what the OP described (not that such things can or should be compared). She was doing well last November, strong and healthy enough to go for fairly strenuous hikes with me and drink her glass of wine every night. We found out in early December that her cancer had spread to her brain. She was a little forgetful, but more or less herself until right before Christmas, when she started falling. I spent Christmas morning in the ER with her; she’d fallen the night before and seemed fine, but was in a lot of pain. Turns out she’d broken a rib. The day after Christmas I texted her oncologist because I didn’t know what to do - things were so bad, we were so stressed out, I didn’t know where to turn. Dr. A is a wonderful woman; she called me right back and spent her morning calling around to get my Mom into hospice that day, even though most services were closed, it being the day after Christmas. We had as social worker and a nurse come assess her before the day was out.

That was the start of the Really Bad Times, where every week she got worse. Thinking back, it’s a blur of Mom falling, being afraid every time I left that she would fall again, jumping at phone calls in the middle of the night, cleaning, cleaning, more cleaning (she didn’t always make it to the bathroom in time), scheduling, worrying. I literally didn’t have time to grieve; I woke up every morning dreading going over to my parent’s house yet unable to stay away, even on the days/times I knew that there were other people there taking care of her.

Ugh. These were the worst two months of my life.

The end took far too long; she talked less and less, then responded less and less, then couldn’t get out of bed, then we started the morphine knowing that all we could do for her was keep her comfortable. She finally died in the afternoon; me and my Dad and an aide were there, I was cooking a big pot of spaghetti sauce in anticipation of a family dinner. My dad had a houseful of people that night.

I don’t think it’s truly hit me yet. Writing this post is about as much as I’ve thought about it without ending up in tears; I tend to catch myself when I think about her and start thinking about something else. I wear her jewelry. I visit my Dad and try not to think about how lonely he must be every day (he’s never lived alone a day in his life before now, and he’s got his own health issues.) I try to remember I can’t fix everything for everyone.

Yeah, cancer sucks.

13

It sure does :frowning:

It has taken far too many people I (we all) know. Young, old, wonderful people and horrible jerks.

I honestly believe a day will come when we look back on cancer like we look back on the flu and feel amazed that it used to take so many people. I hope that day comes soon.

14

My mom died of pancreatic cancer, so I’ll agree, cancer bites the big one. :frowning:

Vivalostwages, you have my condolences.

15

My husband was fine in October. In mid November he had what we thought was a urinary tract infection. That seem to be taken care of, but he still had blood in his urine and suddenly the pain came roaring back. I think it was the day after Christmas we got the official diagnosis of bladder cancer, which had already spread to his pelvic lymph nodes. He went through two rounds of chemo which helped to some degree, but while it diminished the pelvic cancer some of it migrated to his bones by mid-February. At this point I expect him to have only days left, not weeks (I have an extended leave from work so I can spend as much time with him as I can).

So… from a testing standpoint:

  • CT scan about March 2016 due to unrelated complaint, no sign of cancer.

  • Bladder lavage late September 2016 (he has long had urinary problems) including sending a scope up there and no sign of cancer or infection.

  • November 2016 UTI, round of antibiotics. The infection is stubborn, worse than usual, but finally defeated.

  • Early December 2016, infection gone but pain still present ultrasound shows enlarged lymph node which might be infection… or might be something else.

  • Mid December 2016, another bladder inspection which reveals a spot that looks eroded and infected, biopsy taken, CT scan also confirms enlarged lymph nodes and a thick spot in the bladder wall but nothing worse than that

  • End of December biopsy shows cancer. Suddenly, massive massive lower back pain, another CT scan reveals swollen lymph nodes and bladder thingy have now grown so massive that tubes had to be put in to drain his kidneys externally (look up “bilateral nephrostomy”).

  • First week of January chemo started, which over the course of the month reduces the size of the lymph nodes, reduces pain, reduces bladder mass, stops bleeding from bladder. Yay us, right?

  • Mid February pain is again out of control, new CT scan shows that while the soft-tissue cancer has diminished there is now cancer in his pelvis, spine, and one rib.

  • March 1 he’s back in the hospital, pain out of control, cancer spreading. Attempt to try radiation fails.

  • Now, probably very short time left.

Yes, cancer certain CAN spread that fast. His spread even as we treated it, even as we watched. It can play whack-a-mole, receding in one area only to re-surge in another. You can do everything right and not “catch it in time”. For my husband, did the infection hide the cancer? Or was it coincidental? His urologist was so concerned he had missed the cancer that he had another doctor review the case - nope, absolutely no sign of cancer in September. Stage IV by mid-November about 6 weeks later. Apparently the bastard decided to spread before forming a discreet tumor or something. Cancer can be fast and sneaky.

Oh, and for another anecdote - my husband’s gastroenterologist the year before went from “ew, feel a bit icky” to cancer diagnosis to dead in three weeks.

Yes, it can be sneaky. Yes it can be fast. You can do everything right and still not catch it until too late to do much of anything.

16

Sincere condolences Vivalostwages

17

I’m sorry for your loss, vivalostwages.

18

The word “cancer”, being used for so many different diseases, makes us think it is all one disease.

Not even close.

The “you’ll be dead in 90 days” prognosis is common with some brain cancers. George Harrison was diagnosed with “brain cancer” and lived 10 or more years (Traveling Wilburys were during this time).

Do not kick yourself or the professionals who “missed it” - some “cancers” will never show up on any available test until they do so much damage that the damage show ups.

19

Oh my God, Broomstick. :frowning: So much of what you wrote sounds very familiar.
I am so sorry about your husband and I feel awful for you.

But I am glad that you wrote what you did–and this goes for others as well. I can now give myself permission to stop wondering if I/they/we missed something or failed to notice a problem. We were on this case all the time and the bastard still ran amuck.

20

This post is practically a mirror of what we went through from January to March, especially the fifth paragraph.
I wear her jewelry too. And her nightgowns.