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.

Waiting Is Going to Drive Me Crazy

We are still waiting for the liver biopsy. They wouldn't make an appointment until they got a copy of the scan (the local hospital her is within the network, but not specific to the insurance company). They didn't articulate that to my mom until she called asking what was going on. We got the scan and took it to her doctor who then sat on the scan for three days before sending it out. Now the place that is supposed to do the biopsy has had the copy for three days (plus the weekend), but hadn't "received" it yet when my mom called. I hate HMOs, in particular this one.

So frustrating. 

Her stomach is back to bothering her, and she isn't eating much due to the discomfort. 

The nagging worry I had has ticked up fifty notches. I don't think it's going to be long before I have ulcers myself at this rate. :(

Update 2

She got her biopsy results today. It was the best news possible. The stomach biopsy samples were clear of cancer, although I think they were surprised at those results. The biopsy did confirm she most definitely has ulcers, yet there was no trace of bacteria as a cause.

There is still the question of what is going on. The next step is a liver biopsy next to rule out cancer there. They should be calling to schedule that tomorrow.

She continues to feel much better. The BP meds have kept her pressure down. Her pulse and breathing have been normal since she started the meds, too. Her stomach feels better since she started the acid reducer...she is eating like usual.

So I don't know.

This knot in the pit of my stomach hasn't eased much since she got the news, Things are still very much in that between space of knowing something but really not knowing anything.

While I am obviously so very relieved this biopsy came back clear, I am frustrated as hell that they didn't just do the biopsy of her liver while she was in the hospital.

Now, all there is to do is to go back to waiting for answers. Sigh.

Update

I think I could sleep for days, although it isn't like the little people around her would let me. Sigh.

They did a biopsy of her stomach yesterday. When they got the scope in, they didn't see what they expected. They found some ulcers, so they weren't even sure if the biopsy would be enough. They contemplated doing a second biopsy somewhere else, but in the end they decided against it. They discharged her yesterday in the evening. 

Now we are waiting on the biopsy results. She looks fine and says she's feeling pretty much back to normal. No pain. She's eating normally.  Her original complaints were some nausea, high BP, and pulse (189/86 and pulse of 130), so they gave her meds and she feels pretty much back to normal. 

The other stuff was one hell of a shock and found by chance; they scanned her heart to make sure she she hadn't had a heart attack. She hadn't. 

She has sjogrens, which is an autoimmune disease. It can also cause lesions...so I'm hoping that's what it is. But chances are high that it could be malignant. To be honest, there was so much back and forth throughout the time she was there, I don't even think they know what the hell is happening. 

We just have to wait and see at this point.

I'm not good at waiting. Sigh.

Please

I'm sitting in the ER, waiting for my mom to come back from a CT scan. We came here several hours ago because at a doctor appointment for not feeling well, her BP was 186/87. Her pulse was 130. They thought she was having a heart attack.

We came.

They did an EKG.

And an X-ray.

And then they said spot on lung...

She's being scanned. It needs to be clear. It has to be.

Please.

~~~

Biopsy tomorrow. Masses on stomach, lungs, and liver.  

There's a small chance that these are lesions from her sjogrens. The internal medicine doctor said malignancy is likely.

I just don't...I can't. 

I'm so very scared. I don't want to lose my mom, too.