My leukemia's back.

[getaclue]

Bunny, I'm so glad you went to see her. Wanting a party is good. It gives everyone something positive to do, and look forward to.

 

[Bunnylady]

How is she doing? Pain-wise, brain- wise...and emotionally?

I don't think she's in any pain . . . the things that are most pressing, health-wise, aren't particularly painful (heart and lung issues).Brain wise? Well, I think everyone on this thread knows the term "chemo brain." Also, she's been having panic attacks (absolutely terrified and convinced that she can't breathe, when the O2 saturation numbers are perfectly fine), so they have put her on anti-anxiety medication. Betwixt and between, she gets a bit muddled. Yesterday, she was wanting us to put "80 plus 1" on the cake, when it's 61 years that they've been married (she's 86, which is bound to be where the 80 comes from). Last night, she said "it should say, "87 wonderful years; I don't know what I was thinking," and something about no candles (her birthday is in a few weeks, which may be why her age keeps getting mixed into this).

Emotionally - yesterday, she was apologizing for leaving such a lot of mess for us to sort through. She has accepted that she is dying, but she's not ready to go; she feels like she still has a lot of unfinished business.

 

[Alaskan]

I don't think she's in any pain . . . the things that are most pressing, health-wise, aren't particularly painful (heart and lung issues).Brain wise? Well, I think everyone on this thread knows the term "chemo brain." Also, she's been having panic attacks (absolutely terrified and convinced that she can't breathe, when the O2 saturation numbers are perfectly fine), so they have put her on anti-anxiety medication. Betwixt and between, she gets a bit muddled. Yesterday, she was wanting us to put "80 plus 1" on the cake, when it's 61 years that they've been married (she's 86, which is bound to be where the 80 comes from). Last night, she said "it should say, "87 wonderful years; I don't know what I was thinking," and something about no candles (her birthday is in a few weeks, which may be why her age keeps getting mixed into this).

Emotionally - yesterday, she was apologizing for leaving such a lot of mess for us to sort through. She has accepted that she is dying, but she's not ready to go; she feels like she still has a lot of unfinished business.

Very difficult.

It is nice though that she has accepted it... that makes it easier on everyone.



I am still praying for you and yours...such a stressful situation.

 

[Bunnylady]

Thank you.

 

[getaclue]

It may not all be in her head about not being able to breathe. Has she had a simple chest X-ray lately? What does the CT, and MRI say is going on in her lungs? It's NOT all about O2 saturation numbers.

Make sure she does not have a Pleural Effusion. I suffered for 6 months with the complaint I couldn't breathe, 3 of which I was under the care of a lung specialist. My O2 levels never dropped the entire time. I was assured I was fine, and it was insinuated that it was all in my head. Finally one evening, I knew I was in trouble, and determined to go, not to the little local hospital, but the big one in Tampa. A simple X-ray revealed the problem. The pleural space was full of fluid, to the point it could collapse my lung. I was admitted, and the next morning they took almost 2 liters of fluid out of the pleural space. They couldn't take out any more for fear of collapsing my lung. For the first time in months, I could breathe. The fluid was analyzed, CT scans were done, and didn't reveal anything as to the cause. The next week I was admitted for the same procedure, and the following week. Again, none of the testing revealed the cause. By then, a wonderful staff pulmonologist was called in. It got interesting after that.

Another cause for her breathing difficulty could be tumors, tiny nodules, or glass which will show up in an MRI. Glass is not actually glass, but clear spots on the MRI, which are undeveloped nodules, or tumors. Glass, nodules, and tumors inhibit the absorption of oxygen in those spots. While there may not be enough to lower O2 levels, it is still noticeable that you're not getting the same results as normal, with each breath. Even though her O2 levels are ok, if she's got lung problems, and at this stage of things, the doctor might be able to order some oxygen for her. Now, insurance companies, and medicare are a bit picky about oxygen if the O2 levels are fine, but there are a few exceptions, and she may fall under the exception category.

 

[Bunnylady]

They did a CT scan yesterday while I was there. Nobody seemed to know why; maybe they were told, and forgot, or maybe someone didn't feel like dealing with a hard-of-hearing old person who might or might not be focused at the moment. I thought that they might be looking for the mysterious bleeding that keeps making her anemic so often (not showing up in stool, so probably not in digestive system). I haven't heard anything further about it; don't know if my brother has heard anything or not.

There are so many things going on, it's hard for me to keep straight, and so many medical personnel involved that I wonder if any of them really have the whole picture. First, there's the cancer. Then, there's the pulmonary fibrosis, and the pulmonary thrombosis which one doctor thought the clots were migrating from the legs to the lungs but another says no, the clots aren't coming from there so there's no point in installing a filter. Respiratory says that she has a habit of shallow breathing, so she isn't even using the lung capacity that she has. A few days ago, they said some of the problems are because of fluid building up in her body, and they put in a catheter and started giving her Lasix. Plus, she developed a rapid/irregular heartbeat, which is why she is now on the cardiac floor rather than oncology. Tonight, her heart has been racing again, and her bp has been low; from what my brother has told me, things have been so dicey we may be looking at days rather than weeks.

 

[getaclue]

When was her last MRI? That will tell a LOT more than a CT scan. Regardless of them putting her on the cardiac floor, the head of her team should always be her oncologist. The cardiologist(s), pulmonologist(s), thoracic surgeon(s), etc. should all be reporting to, and coordinating through the oncologist. It sounds like a good bit of her problems might be resolved if they find the bleed, and they should be doing more than running CT scans that are not showing anything. The CT scans didn't pick up on my lung problems either. That is why I asked about an X-ray, and an MRI.

 

[Bunnylady]

Bummer. We've had to cancel the party; she's really not up to any of it. Her oncologist wants her moved to Hospice. I don't know what kind of timeline we are looking at here.

 

[wyoDreamer]

@Bunnylady Prayers for your family, this has to be hard on everyone.

 

[ronott1]

They did a CT scan yesterday while I was there. Nobody seemed to know why; maybe they were told, and forgot, or maybe someone didn't feel like dealing with a hard-of-hearing old person who might or might not be focused at the moment. I thought that they might be looking for the mysterious bleeding that keeps making her anemic so often (not showing up in stool, so probably not in digestive system). I haven't heard anything further about it; don't know if my brother has heard anything or not.

There are so many things going on, it's hard for me to keep straight, and so many medical personnel involved that I wonder if any of them really have the whole picture. First, there's the cancer. Then, there's the pulmonary fibrosis, and the pulmonary thrombosis which one doctor thought the clots were migrating from the legs to the lungs but another says no, the clots aren't coming from there so there's no point in installing a filter. Respiratory says that she has a habit of shallow breathing, so she isn't even using the lung capacity that she has. A few days ago, they said some of the problems are because of fluid building up in her body, and they put in a catheter and started giving her Lasix. Plus, she developed a rapid/irregular heartbeat, which is why she is now on the cardiac floor rather than oncology. Tonight, her heart has been racing again, and her bp has been low; from what my brother has told me, things have been so dicey we may be looking at days rather than weeks.