Dealing With the Memories

Dealing With the Memories
Ebowalker / Pixabay

We lost Mom, A.K.A. Mother Hen, on January 10th. This Reddit response by GSnow has it right in so many ways. It feels like drowning right now. I’ve had losses before, but this is a big one. Huge one. I know, and knew, intellectually about the grieving process and that time will dull the hard edge of pain (with relapses).

The hard part is getting there.

I’m having issues with memories of the time in Hospice. The people there took such fantastic care of her and were so supportive of my Father and I. But it was still hard. Especially the last two days when her breathing became so uneven and her lungs filled up. The coughing she could barely do as her body tried to clear. Then the blue of those last few minutes. So at odds with the vibrant person she’s always been, and in fact, had been only two weeks before.

My dreams lately have not been fun. Having her in them, then turning around to find her slumped, blue, and dead.

Yeah, I’m doing a lot of crying. Crying even as I’m typing this.

Dealing With the Memories
sipa / Pixabay

After talking it over with my Father and writing friends, I’ve just started something new. Sharing memories to remember the vibrant person as a way to counter those memories of the last week. Mom had a hard life before our family and she was always open about it so she could use it to help others. To turn her pain around into something positive, to make the world a better place around her.

That’s a real inspiration. She was fantastic at inspiring the people around her. As she payed forward, I’m hoping to as well.

Mom, Mother Hen, you are still an inspiration, even now. Love you!

Sad Mother Hen News

Sad Mother Hen News
ClkerFreeVectorImages / Pixabay

Grab your tissue box…

As you know, Mom has been sick with a glioblastoma multiforme (GBM) brain tumor since early 2013. She’s had to spend many weeks each year in the hospital because of complications, most recently two long hospitalizations this last summer for a medication problem coupled with a chemotherapy reaction, and then the sudden appearance of mini-seizures.

However, she did managed to bounce back enough for us to bring her back home in October after a stay in a rehabilitation facility. She’s been a happy little clam to be home, with a sweet disposition and a big grin whenever we gave her treats. While unable to get up and walk without the assistance of both Dad and I (because of weak knees and no sense of balance), we were able to have good family time, talk, watch TV and movies, and she could easily feed herself.

A day and half before Christmas Eve I saw signs of more mini-seizures. After talking with her doctor we started her on another medication in hopes of controlling them. I was able to get 2 doses down her, but on the morning of Christmas Eve she had gone weak, could barely talk, and was going from one rolling mini-seizure to the next. We then had her airlifted to St. Joseph’s Hospital in Phoenix.

Her mini-seizures did not want to calm down. At one point she was having over 100 at night. They kept adding more medications and higher doses. Finally, after her still having them, and her sleepiness after each one getting longer and longer, they transferred her to the ICU to be more aggressive. They also ordered an MRI to see if there was something going on with the tumor or something else that could explain why they were having so much difficulty.

The next day the MRI didn’t happen because the ER was slammed and with one of the hospital’s machines down, the ER had to have priority. Late in the next day she finally got her MRI. By this time she was constantly sleeping. The thought was that it was because of how sedating the anti-seizure meds were.

Early the next morning the doctors came in with unexpected news. At some point Mom had had a massive stroke that took out most of the right frontal lobe and into the rear right lobe. They said there was nothing more they could do. I called her neurologist-oncologist and he came by the next morning and went over the MRI scans with Dad and I, did an examination and looked over the records of her current stay in the hospital. He concurred. The main blood supply to the right side of her brain had become blocked, killing much of the tissue on that side. On top of that, even though he couldn’t prove it from the MRI, there were strong indications that the left side of her brain was also damaged.

In other words, her being asleep wasn’t because of the mini-seizures (and not because of any tumor growth). One of the times she’d fallen asleep after a mini-seizure and the stroke hit. She went to sleep and just didn’t wake up.

Unfortunately she was never going to wake up. After talking it over between us and the doctors, and knowing Mom’s wishes, we had to make a very hard decision. We transferred her care to Hospice and took her out her feeding tube and any IV nourishment and fluids. That was on January 1st.

Mom was not in any pain and she wasn’t been in any discomfort. She even sounded like she was just sleeping and had a very peaceful expression. They kept her on the strongest of the anti-seizure meds and regularly administered pain meds to make sure she was as comfortable as can be. Hospice of the Valley in Phoenix Arizona was wonderful to work with through this process.

The hardest part? The waiting while her breathing became more labored. She had a lot of lung issues and had problems with pneumonia and bronchitis and she always feared drowning in her own lungs. Hearing her lungs slowly fill up as time went on was torture.

At 10:25am on Sunday after over 10 days without food or fluids, her body finally gave up, just after I had gotten up that morning. It was like she waited for me. She was always a little fighter, proved by having survived her GBM longer than the average, and she just kept going and going and going like the energizer bunny. The nurses and aids were surprised. Dad and I were not.

Sad Mother Hen News
ArtsyBee / Pixabay

Keep Mom, AKA Mother Hen, in your thoughts and prayers. You were a truly unique and lovable person. You are greatly missed.

Sniffle

A New Smile and a Thank You Gift

I have an update to my last post.The String Weavers 350H

THANK YOU to everyone who were in a position to help out. It meant that Mother Hen could get the work done on her teeth.

The badly broken and cracked tooth was pulled, and it came out easily without complications. It’s still in the process of healing, but so far so good. Plus, where the broken tooth had been cutting into the inside of her mouth has now healed.

Win win!

On top of that, her badly chipped front tooth is now fixed. She keeps looking at it, amazed that she can’t see where it was broken and repaired. She smiles so much easier now.

And we love her smile. A smile is such an important thing.

So, again, thank you.

As a way of rewarding everyone’s kindness and kind public and private notes, here are two goodies:

When the Skies Fell TSW6-350HBook 6 of The String Weavers has been released (and will soon have an announcement post here). As a thank you, here are coupon codes for the first and new sixth book. Coupons are good for a full week starting today!

The String Weavers (The String Weavers – Book 1) – $.99 (Originally $4.99) – Coupon Code: CA96X

When the Skies Fell (The String Weavers – Book 6) – $.99 (Originally $6.99) – Coupon Code: FU43J

Enjoy!

————————————————————–

Sign up for my newsletter!

Help Needed: Mother Hen’s Smile (Plus Update)

It’s been a while since I’ve updated everyone on how Mother Hen (a.k.a. Mom) is doing. And wow, a lot has happened. Warning: this one is a bit long!

At the beginning of December she had a chemo treatment directly into the brain via an Ommaya Reservoir. All well and good, and she’s had these for a while. The side-effects of the chemo usually go away after 3 or 4 days and we couldn’t figure out why it wasn’t doing its normal pattern. Then she got worse. Then she started loosing her balance. Then she got delirious, and I mean scary-delirious!

On a Sunday we took her to the emergency room and we found out that her shunt valve that controls her Normal Pressure Hydrocephalus had been adjusted to a dangerously low setting after the chemo treatment. Turned out her condition was made worse by a UTI infection, and we already know that those really affect her state of mind. We went home with antibiotics, shunt adjusted back to where it should be, and we thought we might be able to get her back on her feet again…

Wednesday afternoon she had a Grand Mal seizure. There’s a whole story around that, but suffice it to say that it ended up with her being medivaced to Phoenix in a helicopter. She doesn’t remember the flight, which she’s still miffed about as she’s always wanted to fly in one. Hehe, yeah, that’s our Mother Hen. 😛

TSW5-150HThey found out with this visit that her sodium levels were way too low (this can sometimes happen with infections). The emergency room doctor just shook his head and said, “Shunt adjusted too low, UTI infection, and too low sodium? It was a perfect storm for this kind of seizure to happen.”

In other words, no wonder it happened!

It really knocked Mother Hen sideways, though. A week in the hospital to stabilize her was then followed by nearly a month in a Skilled Nursing Facility (and wow, did she have a great one!) because she needed too much care for us to handle at home. She needed daily physical therapy to get the strength and balance back to a tolerable level. She’s not as strong, balanced, or coordinated as before the seizure, but at least we were able to bring her home.

Whew. Yeah, all that blew away all of December, and about half of January. As a consequence, we feel like we never did have a proper winter. Holidays? Um, did those happen somewhere in there? Can’t remember…

There is good news in all this. The MRI at the beginning of December showed no tumor growth. The checkup MRI at the beginning of March was identical to the one in December.

Yay! No new tumor growth!

Now back to bad news…

CCD-150HMother Hen cracked a tooth badly in the Grand Mal seizure AND took a big chip out of her front tooth. Yes, she clenched her teeth that bad (and there was blood all over the place. Superficial wounds to the inside of her mouth, thank goodness). She doesn’t remember the seizure at all (YAY! That’s something I don’t want her to remember), but that front top chipped tooth?

It makes her feel ugly. It’s been horribly deflating to her self-esteem. She sees it every time she looks in the mirror.

See, Mother Hen has always been a lady. For my sister and I, we never had to worry about being embarrassed by our mother. When she came to school she represented us well. She dressed up. She put on her makeup. She did up her hair. And always, and I mean always, she had a smile and a good word for everyone around her.

Now she feels like she lost some of that.

Of course she hasn’t, but sometimes the cruel voices inside don’t shut up despite the truth.

The cracked tooth broke down to the gum line and took with it the crown and part of two fillings. The jagged pieces are creating sores in her mouth. It obviously needs to be removed. Today, we had a dentist look at it to let us know the approximate cost (he agreed it needed to be pulled because of how it cracked and broke away).

Salmon Run Collection 1 150HEven worse? Thanks to the radiation and chemo, and the ongoing chemo, and the meds that are causing bad chronic dry-mouth, the dentist confirmed what I already suspected: Mother Hen will eventually lose all her teeth. All of the above is causing them to rot away and there is nothing that can be done to stop it. All we can do is help her teeth last as long as possible.

The tooth that needs to be pulled will, unfortunately, be the first of many.

This has been devestating to her. She’s always taken care of her teeth. Not so many years ago she had a dentist compliment her and tell her that she would be a person who would likely die with all her original teeth.

Now to the other hard part: The cost to pull it will be $200-300 depending on how difficult it is to get out.

Ever feel like the universe is conspiring against you?

We finally get Mother Hen good insurance that is paying for both her medical care and expensive prescriptions… only to go right smack into a situation where there is no insurance coverage.

FDotS-150HWe did find an understanding dentist. He is coming in on a day off next week to pull the tooth after she recovers from her upcoming chemo treatment. Because of how the chipped top front tooth has affecting her mentally (Mother Hen finds it very depressing), he is even going to fix it without demanding same-day payment. Wow. That was really kind of him.

But it will still be an expense. The fund I had put together to fix the car air conditioning so we could get Mother Hen to and from treatments without giving her heat stroke (and trust me, AC in a car is a must in an Arizona desert summer!) is now going towards this emergency dental bill.

I feel bad about asking, considering how very generous so many were when Mother Hen was diagnosed with this cancer. The generosity meant she could have the radiation treatment when it was originally going to be denied (this was before we were able to get her insurance). It greatly increased her chance of survival, and I think it worked. She’s already outlived the average survival rate of someone with a Stage 4 Glioblastoma brain tumor.

I’m asking for generosity once more, on her behalf. To give her a little bit of her smile back, as well as to pull the teeth that are now beyond hope and prevent them from hurting her mouth or causing other health issues (she certainly doesn’t need more!).

The String Weavers 150HI do want to give something back. So, here is my offer. A free ebook to anyone who donates to Mother Hen, and YOU get to pick the ebook. Just email me through the contact page here on my site with a note that you donated, the amount so I can match it up, and what book you would like and preferred format. Yes, this includes the Salmon Run, The String Weavers, and the Redpoint One books. It ALSO includes the upcoming release of the next book of The String Weavers (out within a week or so), and the next Salmon Run book (out in about 2 months)!

List of books available: http://www.starcatcherpub.com/category/authors/jamarlow/

Thank you to everyone for your kind words and thoughts. Through all of this they have meant a lot to both myself and my family, and of course, to Mother Hen.

PS: To those who donated for her initial treatment, please contact me. The above offer also applies to you. Thanks!

Donation Links

GoFundMe Help For Mother Hen

Click Here to use Paypal

————————————————————–

Sign up for my newsletter!

General Update

General Update
Nemo / Pixabay

Wow, it’s been a while since I posted. But, that would be because I’ve been very busy.

Mother Hen is doing well. She has her ups and downs, and we have a few new problems to deal with. The good thing is that the last two checkup MRIs show *NO* new tumor growth. YAY!

One of the challenges right now is getting her used to a CPAP machine and mask. Turns out she not only has sleep apnea, and not only has severe sleep apnea, but she has BOTH types of apnea. Until then I didn’t know there were two types. But, yep, there are:

Obstructive sleep apnea, the more common form that occurs when throat muscles relax. Central sleep apnea, which occurs when your brain doesn’t send proper signals to the muscles that control breathing. – Mayo Clinic

When Mother Hen does something, she really does it!

She’s also on a new brain chemo that is put directly into the brain through her Ommaya reservoir every 2-4 weeks. This chemo is causing us a lot of issues, as she’s sick with it for 3-4 days after.

Because of everything going on, it’s been hard to write, but I am getting a little done. I participated in National Novel Writing Month and managed 60,000 words across several projects. I didn’t get the last Dreamer’s Cove novel finished, but I got close! I’m now puttering away this December of finishing the first draft.

In novel news, the next String Weaver book is nearly ready to push out the door. I’ll announce it here when the time comes.

Whew. Life can slow down a little now! 😀