Hanging on by a Thread

Doctor appointments, scary conversations, kid IEPs (including another round of fighting with the school), nights with little to no sleep, and my period had made the week miserable enough. Dropping my phone in the toilet at work today was just the cherry on top. 

It is easy to see that I am slowly drowning in it all. I can't quite figure out how to be everywhere I have to be, all at the same time. 

PET scans. Heart ultrasounds. Lung function tests. A repeat endoscopy. 

There is now renewed concern that the original stomach ulcers are cancerous. Instead of reducing with treatment, they've grown. More biopsies have been sent out. More waiting for results. 

Now there is concern about stomach rupture with the start of the chemo. They waffle between admitting her for the first treatment or allowing her home with constant supervision.  

Chemo has been pushed back to the 31st. Another day of wondering how I'm going to be there for her and be with the kids.

And it hasn't even really begun. Hoping this thread I'm hanging on to will hold.

Spinning Plates Here

Two doctors later, there is more information and a plan. The GI doctor was first. Meds for appetite stimulation and to coat her stomach were prescribed. Another endoscopy is scheduled for Monday to check the healing of the ulcers. There is the pesky matter of a gall bladder filled with stones, which is likely the main reason for her pain...but they want to wait to address it after the chemo has finished.

The oncologist was next. A PET scan, lung function test, echo of heart, meeting with the oncology pharmacist, and placement of a port for chemo access. All to gear up for chemo to start on the 26th. A week and a half away.

6 cycles of chemo. Each cycle consists of two course over 4 weeks. 6 months of treatment if all goes as planned.

It's all so very overwhelming.

The oncologist had no answers as to why they had so much trouble finding the cancer. He said he trusts the Stanford results.

She is being very stoic about everything. "It is what it is," is what she tells me.

I am freaking out (although I don't think she knows that), I am not sure how I am going to do all that needs done. How I can get her to her appointments. How I can do what I have to do at work. At home.

What do I tell the boys? Their birthday is the 27th. I can't associate their birthday with news like this, so I want to make sure there is time between their day and when I do tell them. I don't even know what to say.

I feel a lot like the person spinning plates with all of them wobbling, ready to fall.

The sample was sent to LA and then on to Stanford. Results came today.

Ho.dgk.ins Lym.ph.oma. No information was provided outside of that. She has an appointment with an oncologist on the 12th, which is I suppose when more answers will come.

I can't even begin to dissect the emotions I'm feeling, particularly the whole WTF??? about being told specifically that it wasn't cancer, only some sort of scar tissue, to now being told that it is. I also have to admit that I am not confident about the prospect of her getting treatment from a group that so royally fucked up at every turn. She is angry, but her frustration seems so quiet. She is not me, and her temperament is most definitely different than mine. While I tend to fight first and ask questions later, she is one to sit and reflect. So, while I can urge and try to voice my opinion, ultimately I have to take my place as the passenger, sitting back and letting her take the lead on how this goes. My job is to support her. (Which, in a lot of ways, is so much scarier than taking over control myself.)

I have done a very limited amount of research this evening. Survival and cure rates seem to be very high with this type. I couldn't bring myself to go much deeper than that because I honestly can't wrap my mind around all of this just yet. I need to sit with this for a bit.

How does a person go from being completely healthy to cancer? From a heart scan due to high blood pressure/pulse to lesions? From TWO biopsies with negative results to Ho.dgk.ins Lym.ph.oma? I don't know.

If you're the type who prays, would you say a few extra prayers for my mama? Because she just has to be okay.

Results - Sort of

We finally got the news today.

The doctor started off by telling mom that she is a highly unusual case. In my experience, that has never been a good sign, as it seems we are always deemed "highly unusual cases" around these parts.

The good news from the biopsy is that it is not cancer! Oh, sweet relief!

But, the lesions on her liver are not exactly typical, either. It seems that they scar tissue from what they think must be infection. What infection? Not sure. Could be the Lyme disease and secondary bacterial infection she had when the big boys were not yet one? She was very sick then. Other than that, she has been fairly healthy, so nothing else comes to mind except the sjogren's that she has.

They don't know much more than that at this point. They've sent the biopsy out to LA for further testing.

Such a relief! But still no definitive answers. She is still struggling with the ulcers (the wait for results has not been helpful with that at all either). I will be happier when we have more concrete answers, that's for sure.

Biopsy Done

Thursday she had the liver biopsy. They took five different samples, which we saw in a small little jar before it was packed to send to the lab, and I have to say that it is quite odd to see how small the samples from these kids of things really are. I suppose one doesn't think about those things until they are confronted with them head on. Anyway, she thankfully had no complications and seems to be okay from the procedure itself. They told us 3-5 days before we'll get the results.

She is very set on the idea that these results will also be negative. I want to be as confident as her, although I struggle more than she is in that area.

Back to waiting. I'd appreciate any good thoughts you could send her way.

Finally

Biopsy appt set for Sept. 1, at the local facility. They called yesterday.

Today the insurance run facility called to say they found the scans. Omfg. So frustrating. 

~~edited to add

They called today and pushed the date back to the 8th. Losing my mind here. 

Sigh

On Wednesday we got a call saying they had lost her scans. They were sent to their other facility via messenger and somehow were lost along the way. Because of course.

The facility my mom would have to go to for the biopsy is approximately 80 miles from here. That wouldn't be so big of an issue, except that we would have to head toward a major city therefore making the trip one-way probably at least two hours. It would be a long day, something we were willing to do anyway because of the promise of it being scheduled relatively quickly and that it would allow better access to any information with the procedure done at an in-network, insurance run facility.

That's all changed now. Now they are rearranging authorizations so she can do the biopsy in town (at a non-insurance company run facility). This way, I can take the damn second copy of the scan directly to them.

So we are still waiting. I am going to have my own ulcer at the end of all of this.