So this was one of the tough weeks. It started out well enough, Robin was still having pain, but it seemed to be under control. All in all, it hadn't been too bad.
Then Thursday rolled around. I took the dog down to the vet to get her hip checked out, since it hadn't improved in a while, and it had gotten really swollen. We didn't get good news. It seems that it is pretty common with Rotties of her age to develop bone cancer, especially in light of the trauma from her hip displaysia. So, it is pretty much just keep her comfortable until the pain meds don't help anymore.
So, I stayed home from the Dojo that night, since none of the family was really in the mood for much of anything. I put the kids to bed, and then Robin started having terrible pain in her leg. Her pain meds didn't touch the pain, and she was in too much pain to stand the car ride to Geisinger, so we called an ambulance for her.
Sitting in the Emergency Room waiting for them to get her pain under control again was rough. How much healing can one do while in agony?
She hadn't had any scans done in a while, so we didn't know if the last chemo she was on had done anything. We know the radiation on her head had done something, that much we could see, but as far as the rest of her, we were in the dark. That was the worst, since we were working with something, and for whatever reason, this far along, the best idea they had was just to throw things at it, and hope to find something that works.
I'm not a doctor, but I am pretty vested in her recovery, so I think it's a little late in the game to try that. We already wasted a few months since her Breast Surgeon wanted to get good margins for her surgery, even though she kept pointing out that she wanted a double mastectomy, so the margins were basically pointless. Then, after two chemos and a few months, we found out her tumor had grown. And spread.
I'm not trying to place blame, but this was the same doctor that told her, a year ago when she had the duct removed, the one that was causing her to get blood from her nipple, his advice was that it was probably nothing. And that she should stop playing with it.
So, one of the main indicators for invasive ductal carcinoma was no big deal. It couldn't be that, because "we don't see that in young women." Once again, not trying to place blame, but if more attention had been paid a year ago, we might not be at this spot right now. I know I can't change the past, but the word needs to get out, you need to be in control of your treatment.
Don't let the Doctor's ego get in the way of your treatment. Obviously, young women do get cancer, and this is one of the main reasons young women often die from it. Young women usually get the more aggressive forms of breast cancer, but the government and big medical tell us not to worry about it. Young women rarely get breast cancer. But how many young women in Hollywood have we seen just this year? How many young women do you know yourself?
So now we are at the point we're at now. Robin is in the hospital with a blood clot in her leg, metastases in her lung, hip bones, arm, not to mention the ones that were in her head. They finally admitted that they had been doing a poor job of pain control. Not that she hadn't been telling them that for months now. Yes, a lot of chemotherapy drugs cause pain. Some of the pain is quite substantial. When you have cancer eating away at your hips in addition to it, there is probably pain.
So we finally met with the NP from Palliative Care, who specialize in treating the pain, not the actual disease. They are a tremendously underutilized specialty, since most modern medicine is only concerned with wellness, and not the state of the patient. It looks better on a resume to heal someone. The ends justify the means, so to speak.
Also, to clarify, Palliative Care is not Hospice Care. Palliative Care does not mean you are just waiting to die now, though they do come in also when it comes to that point. They are the ones who specialize in making you feel better. So, the NP we talked to told us there was no reason for her to hurt this much. There was no reason for her to be constipated all the time. These things could be treated.
She also pointed out that she would get them all together so they could really sit down and talk treatment.
So, at this point, this late in the game, it seams that Geisinger's talk of her "team" was just that. It always felt like the discussion between specialists had been poor, with the most constantly up-to-date specialist had been her Radiation Oncologist. He made it a point to always be read up on her charts, and had always talked to the other Doctors in charge of her treatment.
But where we are now, all the chemo seems to have been ineffective. Her cancer seems to be chemo resistant, something we were all starting to feel from the beginning, when her breast tumor grew to 8 cm while she was receiving the chemo. We could have monitored that better, but when we mentioned that to her Oncologists, that we felt it wad grown, he "hated to burst our bubble", but it hadn't. Even though, the surgery, when the tumor was on the table in it's disgusting, bulbous glory (Metaplastic Tumors are a horrible amalgam of different kinds of cells, like an insane stem cell), it had, in fact, grown significantly.
So now here we are, modern medicine has failed to this point. The run of the mill treatment has done very little. We had been praying that if it wasn't going to improve, that God would just take her home. He hasn't. For some reason, it is our lot to suffer. I just pray that something will come of it.
I pray that through our suffering, someone else will avoid this. I am still praying that she will be healed, or at least we will find something that works. If we find something that works, trust that we will get the word out.
I just started to contact some people who are working on some cutting edge things. I don't know what to expect; I know that actually getting to try things, things that might work, is like pulling teeth.
Remember that corporations run things. Therefore the dollar ultimately makes things happen. We have scientists out there really making strides, but they are often held back by the community and the government.
That's just the state of it. I for one, and not done yet. I am willing to make the calls and try. I am not ready to tell my children that mommy isn't coming home. I'm not ready to be a single parent.
I'm not ready to spread the ashes of my best friend and the love of my life over her favorite spot and the pond, because she doesn't want her body alone and in the dirt, at a place she doesn't want to be.
I can't blame her either. I would rather have my body someplace I love.
But either way, I'm not ready to do that.
Otherwise, if that is all we have to look forward to, God didn't do me any favors bringing me back from the War. So I trust there is more to hold out for. I trust that there is a reason we're still here pushing on.
There has to be a reason for the pain.
We're not done yet.