Ready for 2016 to Hit the Road. Bring on 2017.

Tomorrow my mom goes in for the start of her third round of chemo. She does as well as can be expected, but she is pretty miserable from the side effects of all the meds they give her.

She had a PET scan last week that showed DRAMATIC improvement. Looking at the difference between the scan from a few short weeks ago to now are breathtaking. Her body was riddled with tumors before she started chemo--more than I even imagined. The sight of those images made me ill. Now, thankfully, tumors that had blackened her internal organs on the first image are nearly gone. Her lungs are clear. Her stomach looks to be pretty much clear. Her liver still has a small spot, but overall, the difference is striking. It really is an incredible sight.

Her oncologist was beaming. "Just what I expected to see!" he declared.

I am slowly starting to exhale and a tiny bit of the dread has lifted. I'm still guarded, but there is hope there, too. My mom, however, is still in the thick of bimonthly injections of poison and will be until the first week of April. She had hoped that a good scan would mean a shorter course of treatment. It was hard for her to hide her disappointment when she learned that wasn't to be the case. And, well, my heart hurts for her.

~~~

With my mom being ill, it has fallen on me to coordinate and execute the holiday festivities. It was definitely a challenge for a number of reasons, but mainly, I just haven't been in the mood for celebrating this year. Plus, I was reminded why I do not care for cooking.

Thankfully, I managed to pull it off while not poisoning anyone in the process. I'll call it a win.

~~~

At the start of December, my husband received a frantic call from his brother. Their mom was missing. She had never arrived to a destination that should have been a 5 minute drive from her house. They did end up finding her some four hours later. She was in a city 30+ minutes away in the opposite direction of where she was headed. She had totaled her car in a single car accident.

The scariest part is that she had no idea why she was there or how she got there.

Fast forward to a "family meeting" that included my husband and his brothers, their mom, and their aunt (mil's sister) in which a letter from a doctor was provided that was dated TWO years ago stating that my mil showed symptoms of dementia. It was the first time any of the brothers had heard that news. The aunt said, "oops, sorry" about not telling them, and that was that.

So...yeah.

The boys are now cycling through taking her dinners and scrambling to get info that has been slow to come/non existent. The aunt has not exactly been forthcoming with information. (She took mil to the doctor and mil got two new scripts since they all had their meeting, but the aunt didn't tell the boys about it. I actually found out through another source which led to my husband asking a direct question about. SIGH) The mil is showing some concerning behaviors, which isn't looking great. She's not even 70. :(

This is yet another situation in which I can only do so much. I'm tired of these situations.

~~~

We have finally squared away oldest child's IEP. It only took two months and 4 meetings totaling over 9+ hours of discussions to get there, but hey. One has been signed that I can live with. Oh, and as a bonus, they finally delivered on an accommodation (adaptive keyboard) that was written into the IEP in May...of 2015!!!!...just before break. How awesome is that?! (eye roll)

I am frustrated with the whole lot of the people at their school. I know they would rather I disappeared. I'll say it again. If a school/district can be this inept when they KNOW I am an educator and that I KNOW what they should be doing, I shudder to think what other parents without an educational background goes through.

~~~

But you know what? I have these guys...



They're pretty awesome, too. :)

~~~

So, needless to say, I am over this year. Let's bring on 2017, and with it bring on a year of health and happiness for all of us.

xoxo,
Stacie

Life Keeps Chugging Along

Isn't it funny how life keeps moving even when you want nothing more than to curl into a ball and have the world stop around you? Sigh.

Things keep moving forward. Tomorrow is my mom's third chemo treatment. Aside from feeling like she's been run over by a truck. losing weight, and nausea when she hasn't taken her meds, she seems to have missed many of the side effects that could be plaguing her. (I'm knocking on wood and throwing handfuls of salt over my shoulder as I type that so not to jinx her.) She has a PET scan just before Christmas - I wish they would have been more sensitive to the timing of that. It could be very good if we see positive things happening or very bad if we don't... Sigh. So there is that ahead.

Two weeks ago, she called me to come shave her head. That was a LOT harder for me than I expected it to be. She was very stoic about it all. When I got back to the safety of my own house, I was a mess. I could probably still find myself crying about it if I thought about it for very long. There is something so tangible and heartbreaking about losing her hair.

I was in a miserable situation with a student teacher this semester, as well. The man assigned to me had very limited experience in an Am.er.ic.an classroom (he immigrated here 5 years ago) and absolutely no experience in middle or high school Then he announced that he had never really spoken in front of a group before this experience. Which? Why would anyone think this job would be the one for them with all of that stacked against them? The most frustrating part for me was that he was also incredibly arrogant for someone in his position. I had reached the point of dreading going to work each day. Things came to a head two weeks ago, and I asked for him to be moved to another placement. Such relief when he was finally gone.

I've also struggled with the boys' school again this year. There is an entirely new IEP team in place this year, so I am back to the starting board when it comes to getting them to address the boys' needs. Sigh.

Such is the way of things, I guess. Life tends to pile on the crap to wade through when you're at the bottom.

The boys had this week off from school. It has been welcomed, that's for sure. There were plenty of PJ days and piling on the couch to watch movies. Definitely a salve for my weary soul. We have 15 school days until winter break. I am so looking forward to that, too. Until then, there is nothing to do but keep on keeping on.

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.

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.

9 Years

On this day, nine years ago, I started this here little old blog. Seems like yesterday.

It was the first day of the cycle that would bring me my boys.

These fantastic, wonderful boys...

Can you believe it?

Nine amazing years. Wow.

#Microblog Monday...Oops, Tuesday

While watching television a few weeks ago, the host of one of those celebrity gossip shows was interviewing a number of hair and make-up artists. At the close of the show, the host asked the beauty experts to give their favorite tips. One tip caught my attention, even though it was given as an almost afterthought. "Condition first," the guy said.

There was no further information. There was just the simple "Condition first."

To Google I went. Sure enough, there were a number of posts about reverse hair washing. It is actually a thing. The basic steps are pretty simple: put on your conditioner, leave it on your typical amount of time, add your shampoo, lather, and rinse. Easy.

So, I tried it. And I like it!

I have to admit that it feels odd to all of sudden change my usual routine. Once I got past the weirdness of it all, it really was no big deal. 

My hair is definitely on the thin side, but with this whole reverse washing thing, I actually have body when I'm done. It's still soft and manageable. I have less frizz. I've even been asked several times if I got my hair cut since I started reverse washing. (Um, nope. My last cut was at the end of October.)

Go figure! All these years on Earth, and I didn't even know how to wash my hair! :)

Stop by Mel's for more #Microblog Monday posts.

Homecoming Day - Part 2

Today is Ja.son's Homecoming Day! On this day 8 years ago, after 100!!! long days in the NICU, we finally got to bring Ja.son home!



Ja.son was actually the one who was going to come home first. On the day of his would-be discharge, he spiked a fever, had a grand mal seizure, and was bagged for 20 minutes while they tried to figure out what was going on in his little body. We had received that call, the one that NICU parents dread, only twenty minutes before, and I remember staring at my boy with a terror and hopelessness I hope to never feel again. He was a very sick little boy, and we were again scared that we might lose him. We definitely could have.

Those moments made this day eight years ago, when we were finally free of the NICU forever, even sweeter. Our family was together in our own home. It was another glorious day!

This day is another special occasion in this house, and like Sh.awn's, I hope it is something we can continue to celebrate forever. :)

#MicroBlog Monday

This gem came home from school this week.



He was asked to write a story about his family, which he did. He wrote about his Homecoming Day celebration.

It's just a few sentences, a story telling about his day.

Still, my heart is full. :)

Stop by Mel's for more #Microblog Monday posts.

#Microblog Monday - Homecoming Day!

Today is Sh.awn's Homecoming Day! On this day 8 years ago, after 90 long days in the NICU, we finally got to bring Sh.awn home from the hospital!

I love celebrating this day because it is super special to me. One of my boys finally came home from the hospital after months of thinking that it would never happen. He was here, and I could hold him whenever I wanted. For as long as I wanted...

For the first time, I truly felt like a mom. It was glorious!

This day is special to our family, and we are going to keep on celebrating Homecoming Days until they decide they no longer want to. I'm hoping that will be forever. :)

Head on over to Mel's for more #Microblog Monday posts.

#MicroBlog Monday

Last week our old television died, so we were finally able to upgrade to a new TV. The newer version is thinner and lighter than our old version, so we were able to put the television on a stand and finally move the cable box/DVD player to sit directly under the TV.

Hallelujah! There is so much space now!

The only problem is that moving the cable box, and the only clock in my room, over two feet to the right so it can sit under the TV has meant I can NEVER find the time.

I wake up from a deep sleep, look to the clock, but only find it missing. Confusion sets in. I've even panicked about a break in while I've slept. It still takes me an embarrassing amount of time before I finally locate the time.

Such a little change has rocked my world!

Stop by Mel's for more #MicroBlog Monday posts.

#Microblog Monday

We got an auto call from my children's school district. Registration for kindergarten starts on the 19th of January.

Holy crap.

I am SO not ready to send him to kindie.

~~~

Stop by Mel's for more #Microblog Monday posts.

#MicroBlogMonday

One of the things that has lingered from prematurity for the boys, aside from the medical stuff, is an extreme sensitivity to noise. The sound of the mixer would be enough to send them into a tailspin. Using the vacuum with them around was out of the question. Loud beeps, alarms, machines, the drill...uh, the triggers were numerous.

It was stressful to always have to be mindful of common, everyday noise.

Tonight, the carbon monoxide alarm started beeping. The beep, of course, is obnoxious and intense, a noise that can get to even the most tolerant among us.

And yet, the boys calmly asked what the noise was.

They came over to investigate as I struggled to get the back off of the detector to unplug the battery.

It made my heart swell.

In the last few months we have seen tremendous changes in this area, and while I had noticed the subtle differences, tonight was like a flashing neon sign.

It's such a little thing on the surface...so big when it comes to the ease and quality of all of our lives.

I am beyond proud of these boys and all they've overcome. :)


P.S. From what I hear, it is International Blog Delurking Week. I'd love to know if anyone is still around any more. :)

~~~~~~~~~~~~

Stop by Mel's for more MicroblogMonday posts. :)