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Monthly Archives: November 2015

Disease progression

My mother had a CT Scan this past Saturday to determine the progress of her disease and whether the current medication is doing any good. This afternoon, the doctor called to talk to her, then he called to speak to me at her request. She has trouble processing the things he says over the phone; I took notes while he and I were talking as best I could. He’s a nice person and very compassionate. I feel like he cares about my mother, and by extension, me and the family. I’m appreciative that he is honest, though he tries to couch things the best he can. I think he is a bit more straightforward with me than with my mother. But in the end, I generally tell her what he has said, because I don’t want her to not know things. There is little I won’t discuss with her, even when it’s difficult. I know my parents’ end of life decisions, as I’m their health care agent. We’ve done the paperwork for both of them, with me in the room to discuss things openly. I’ve spoken to my mother about concerns my brother had about my father’s mental health condition due to the pain he is in from his diabetic neuropathy and some back problems he is having. I know about their wills and their wishes. We’ve talked openly about death.

This time, I don’t know how to share with her. This time, I want to keep the words to myself, even from my brother and my husband and my mother’s brother, all of whom have been a part of this ongoing journey.

My mother’s doctor confirmed that her disease continues to progress, despite the current medication she is on. Spots are developing on her lungs, previous spots on her liver and in her lymph nodes are increasing in size. He is ready to try a new protocol at her option. But upon being questioned by me, he told me that this disease is going to continue to progress at a fairly fast rate, as it has to now. Post chemo, she had a recurrence in less than 3 months. Post radiation, basically the same time-frame, another three months.

We’ve been dealing with this since March¬†of 2014. Eighteen months. What do I wish for at this point? That she makes it through to her birthday at the end of the year? To my birthday shortly after the new year? My husband’s birthday in early spring? The 2nd anniversary of her diagnosis? What do I hope for? No pain? No being bed-ridden? No needing 24 hour caregivers? No loss of dignity? No feeling of being a burden on the family?

The doctor is ready for us to talk to a social worker in his office about palliative care. He offered information to me on “what is to come”. He says Mom will start to lose weight for no reason. She’ll start being more fatigued¬†and have even less stamina. She’ll move to being chair or bed-bound.

Those are the things I don’t want to discuss with her. The words I didn’t want to repeat to her.

She has been using a wheelchair and/or rolling walker with a seat (called a rollator) due to the stress fracture in her pelvis. But her ability to rebound from that has been poor. She’s been using the wheelchair and now the rollator since my niece’s wedding at the end of September. She’s tired a lot. Walking hurts her, and she’s exhausted after a short walk through the house. Is that the fracture or the disease? She’s short of breath sometimes, but she says it’s fatigue, the doctor is concerned it might be the spots in her lungs.

She tells me she wants to keep moving. She wants to go out and do things. I certainly don’t want her to give up. I just ache for her. I ache for what is to come. And I’m finding myself conflicted as to what to share with her…how much of my concerns I should and can share with her. There’s nothing she can do to change how I’m feeling, so why burden her with that? But I don’t know how to stay UP and positive all the time, especially since I’m working hard to hide the pain I’m in a lot of the time. I’m struggling to stay positive, to be her cheerleader, to put on a good face every time I see her.

It was easier to talk to her about all these things when she was still on the high side of this disease. Now, on the downward slope, it is all too painful and too real. I hope she will lead me to what she wants to talk about. But at some point I know there will be things she WON’T want to talk about that I will need to find the strength to address.

My mother is dying. How fast it will progress is beyond any of us. What to hope for, what to wish for, what to do…all beyond me at this point. I’m lost and angry and overwhelmed and sad and crying.

 

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Here I am

I have wanted to write new posts, but there are things that have happened and I didn’t know where to start. So I started nothing. And then more things happened and I just wanted to blurt them all out in one post, but then I thought that’s no good way to share the different types of information.

None of that has changed, but I’m writing anyway.

Mid-October, Butthead started limping again. 10 weeks after her surgery. We started her on some pain killers and hoped that she just pulled something or overdid it. I didn’t not feel good about it because it was like she was fine, then she tried to play with Le Moo, and a few hours later she was limping. But we tried to be positive about it

The next morning, I woke up and I was spotting. Spotting post-menopause and post cancer diagnosis is bad. I was entirely freaked out. It wasn’t a lot, but it was terrifying to me. I contacted my oncologist’s office and they fit me in for that afternoon with the office PA. Hub raced home from work and we made the hour trip to the doctor’s office, all the while trying not to fall right over into a panic attack. When we finally got in to see the PA, she did a (painful!) exam and decided that there was a stitch migrating out that was causing a tiny bit of blood. She saw no lesions and no other issues, so she said she would consult with my doctor, but if no one called to follow-up, I should rest easy that it was just the stitch migrating from the second surgery. Not unusual, she told me. If it continued or got worse I should call them again. By the next morning it was done and I’ve been fine since then. But shit that was scary.

Butthead continued to limp, despite NEW painkillers. And by the following week, there was a terrible CLONKING noise coming from her knee when she was walking. Not all the time, but a lot. And that’s not right. So I called our vet (my uncle) about 10 minutes after I first heard the noise and he suggested that I come in to the office for an xray. So again, Hub rushed home and we packed Butthead up and raced down to HIS office, which is 90 minutes away. He sedated her and did an xray and physical manipulations (we actually HEARD the clunk upon manipulation in the exam room prior to sedation) but he found nothing out of the ordinary. He suggested that the knee was moving more than he would like, possibly because of severe atrophy from her quad muscle. Again, I was distressed, because this seemed to happen overnight, but we went home with instructions to continue pain meds and work on building up the quad muscle, which upon tightening should keep the knee in place. However, after a week of pain meds and exercises, and the vet talking to his colleagues, we decided that Butthead needed a second surgery. So off we went for a third Thursday in a row, over 90 minutes in traffic, to the vet’s office for surgery. He found that Butthead’s meniscus (a fatty pad in between the upper leg bone and lower leg bone where the knee joint is) was smashed on one side. So he had to remove that, and in addition he put in a nylon string attaching top and bottom bone, hoping to keep the knee more stabilized while we worked on muscle building.

We brought Butthead home and have been in post-surgery recovery mode with her. She’s still limping, but much like after the first surgery. Prior to this surgery, she wasn’t using the leg at all, now she is using is more each day, especially outside the house. Hopefully this will work and we can go back to exercises in a week in order to build up her quad muscles. UNfortunately, some of those exercises include walking (slowly) up stairs, and walking (slowly) up steep hills. Both of those things are hard on MY knees, so Hub gets the brunt of that work.

Which brings me to me. I’m feeling rotten. I’m not sleeping and I’m in a lot of pain all over my body. I’ve developed plantar fasciitis in one foot, which causes me to be in pain every time I stand up from sitting or laying down. Once I walk it off, I’m mostly okay in that fashion, but when I sit down again and then have to get up, it starts all over again. Plus, the rest of my body just hurts. Fall seems to be a bad time for me, pain-wise, and I have no idea why. I’m walking like an old lady again, and yet trying to just keep going because my Mom needs me. And my dogs need me. And my husband needs me. And my brothers and Dad need me. So I push on when I have to, and try not to limp too obviously so no one knows how bad it is. Except Hub, who sees me without the mask.

I am in pain all day long, and it screws with my sleep as well. And no sleep means no restorative sleep, which means no healing of muscle pain. Which means more pain. Which means less sleep. Which all sucks very much. Let’s not even talk about the ongoing nightmares. Or the hot flashes (and hot flushes) that go on all night and through the day. Or the PVCs that are hanging around again, although they’re mostly mild at this point.

In two weeks I’m going to see a hypnotherapist to see if she can help me with the sleep and the chronic pain, and some of the health anxiety that comes along with all that. I’m mostly okay with the health anxiety (though today has been a struggle) but it does keep me from exercising, and I need to get some exercise.

Then there’s the refrigerator saga (we’ve gotten a new one but not gotten paid for the dead one, plus the new one is smaller and waaay noisy), the dishwasher saga, and new on the scene, the laptop saga. Good times.

October was a struggle and so far, November seems on par. More about that in the next post.

 

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