Memory Day

I went to Misty's grave today. Cru and I. A few weeks ago, the night before Mother's Day, we bought a potted plant--pink petunias--with the intention of taking it to the gravesite the next day. Well, Mother's Day was kind of a rough day for me, and Cru didn't really want to make the trip to the cemetery, so we put it off. And put it off again the next weekend. And, well... Today, since I didn't have work, and Cru was out of school, and, of course, it being Memorial Day, it was a really good day to make the ninety-minute drive to the cemetery in Brownsboro. We put the plant in the ground at the foot of the grave, and cleared some of the dead grass and weeds from the remaining mound. We gathered a few of the fist-sized rocks that were lying around and arranged them where the headstone will go (it's on order... should only be a couple more weeks). In all, we only spent fifteen or twenty minutes there. We turned around and drove the one and a half hours home again. Despite the long trip, I'm glad to have gone.

On the drive home, I recalled that Misty often told me (in our early years of dating and marriage) not to bring her cut flowers. "What's the point," she would say, "they'll just die. If you're going to get me flowers, get the whole plant." Then she would tell me that she had no luck keeping houseplants alive, and didn't like gardening, and that it would just be a waste. So, I felt like I was off the hook for all those years. Of course, later on, she told me that she changed her mind. For her birthday in 2007, while I was traveling, I sent her a small potted purple orchid. She absolutely loved it. She tried her best to keep it alive, but it shortly turned into a dry stick. She was very sad about that. That was the last time I gave her flowers. I'm very sad about that.

I think she appreciates the pink petunias I brought her today. Even if they don't survive long.

Good books

In dealing with my grief and new family situation, I've been reading some helpful books. One of them, a very stirring book which has been around for a long time and has been widely quoted and cited has given me some--not exactly new, but re-framed and reinforced--perspective: Viktor E. Frankl's Man's Search for Meaning. The first part is a moving account of Frankl's time in Nazi Germany's concentration camps. He explains that even through the most terrible situation imaginable, deprived of literally everything, Man can and must find meaning in life. The second part is more of a scholarly scientific document. Listening to the audiobook was good, but I think I'll need to read it for myself to get all the stuff that's in there.

Another book, Leadership and Self-Deception by the Arbinger Institute, is also not exactly new concepts, but a very helpful rehashing of concepts that are familiar to me. Ultimately, it's about charity and loving thy neighbor, but reworked into a system that even I can grasp. I won't try to explain the principles here because I won't do it justice. It's an easy book to get through, with the principles laid out through a story with plenty of great examples. The audiobook was great, but I think I'll have to get the print copy so that I can highlight and underline and reread some of the passages.

I heartily recommend both books.

There are other books that have been recommended to me that I have purchased, but just haven't gotten to yet. I started Bringing Up Boys by James Dobson, and Believing Christ by Stephen E. Robinson, as well as I Don't Have to Make Everything All Better by Gary Lundberg and Joy Lundberg. I also read/skimmed through Jesus Wept by Joyce Ashton and Dennis Ashton which has a lot of good information on grieving and dealing with loss. Also on my reading list is Bonds That Make Us Free by C. Terry Warner, The Peacegiver by James L. Ferrell, and Mere Christianity by C. S. Lewis. No More Mr. Nice Guy by Dr. Robert Glover also bears another reading at this point in my life. All that, and of course, a chapter or two of The Book of Mormon every night and a few verses from Doctrine and Covenants in the morning with Cru before work and school.


I've also read some very good fiction as well. I recently finished the Mistborn trilogy by Brandon Sanderson. Sanderson is excellent! His work (so far) is also something I can recommend to anyone who enjoys a good novel. I first read his stand-alone book Elantris which turned me into a fan. It was a fantastic book that left me wanting to read a lot more of his work. When I learned that Sanderson will be finishing Robert Jordan's epic Wheel of Time series, I decided that I'd better read the first eleven books (and these are BIG books!) so that I can read the ONE that Sanderson is writing. Now that I've finished the Mistborn trilogy, I still want to read more of what he has to offer. I've started his Warbreaker, but because it's not yet available as an audiobook I haven't gotten very deep into it yet. If you want to give Sanderson a try, this is the book to do it with, since he's giving it away free (in PDF format, available on his website).

How am I doing?

I don't feel single... I feel half.

Even when I'm focused, I'm distracted.

I feel pureed inside.

I woke up today, and for hours, I felt simply lost.

I feel sustained by the Spirit of God. I am not trudging on, but am being carried through these difficult days.

I am grateful for--and overwhelmed at--the outpouring of love and support from those around me. I thank God for all of you every day.

Tonight, I called my voice mail (on the home phone) just so I could hear Misty's voice. Three times.

I miss my wife.

Funeral arrangements

Arrangements are planned as follows:

11:00 Family lunch . . . . . . . Garland LDS Church
12:00 Viewing . . . . . . . . . . . Garland LDS Church
1:00 Family viewing . . . . . . Garland LDS Church
1:30 Funeral . . . . . . . . . . . . .Garland LDS Church
2:30 Travel to gravesite
5:00 Graveside service . . . Cemetary
6:00 Family dinner . . . . . . Athens LDS Church

The address to the church in Garland is 2701 N. Garland Ave.

All are welcome.

...gone

Misty passed this morning at 2:27 am.

We're planning a funeral for this Saturday.

Thanks again for all your prayers and support.

Hanging on by a thread

Things are about the same, but I know those of you reading this are all just waiting to know how things are going. There's really nothing new, except that Misty's slowly fading. She's breathing, but that's about all. She mumbles from time to time, but is mostly incoherent. From time to time, Misty will open her eyes and reach out, muttering something unintelligible. We tend to believe that she's seeing and talking to the spirits of people who are close to her and her family. We know that Misty is barely hanging on to life. We think the time she has left with us can be counted in days, if not hours.

Thanks to all who have showed up to visit Misty and called to express your love to her. Thanks for the help in taking care of the needs of my family, so that I can spend these final days and hours by Misty's side. Thanks for the prayers. Thanks for everything.


----
It occurred to me that perhaps Misty has already received the greatest miracle of all. I thought of this brief passage of scripture today:

"And, behold, they brought to him a man sick of the palsy, lying on a bed: and Jesus seeing their faith said unto the sick of the palsy; Son, be of good cheer; thy sins be forgiven thee.
For whether is easier, to say, Thy sins be forgiven thee; or to say, Arise, and walk?"
-- Matthew 9:2,5

Going... going...

Misty is not doing well these days. Since she's been home from the hospital, she hasn't been able to keep anything down... or more like in. See, everything Misty eats or takes in through her feeding tube leaks right back out from around her feeding tube. Her bowels aren't moving at all--the nurses say they hear no bowel sounds. In short, food isn't moving through her intestines and she's getting no nourishment and very little moisture. Unless there's a miraculous change, Misty isn't going to last long like this.

Last night (3/28), a little after 11 pm, Misty collapsed. Her muscles completely gave out and she sank to the floor. I thought for a moment that this was the end for Misty, but then she took a ragged breath and moved her head. Her nurse and I got Misty into a wheelchair and brought her into her room. I asked Misty if she could see me and she responded with very slurred words that she could see only black. Again I began to think that Misty was fading fast. I told her through my tears that I loved her and that if she needed to go, that we'd be ok. Suddenly her eyes popped open, as if to say that she wasn't going anywhere. I asked again if she could see me and she responded that I was "sparkly". We moved her from the wheelchair into the bed and got her comfortable. We thought for sure that it wouldn't be long. We brought in Paris and Cru (Paris was already awake, but Cru was sleeping). LeAndra was staying the night with one of her aunts, and calls were made to bring her home. Misty's nurse tried to take her blood pressure but her machine was unable to pickup a pulse. We sat with Misty, crying with each other and waiting. Misty's brothers and sisters all showed up as the night progressed as we all expected that these were our last goodbyes.

Around midnight, Misty seemed to stabilize. She returned to the condition she was in during the day--very tired, not speaking much, and mostly laying very still--but stable. The nurse was able to get a blood pressure reading which was low, but present. Around 3 am, many of us started dropping off to sleep.

By morning, not much had changed. In fact, now, more than 24 hours later, Misty is still about where she was. A little weaker, a little more exhausted, but still about the same. Again, without a miracle to get Misty's bowels pumping again, she can't survive long like this.

Home again

Misty got released from the hospital on Friday at around 5 pm. She's also been set up with some in-home nursing care through a hospice program. A hospital bed was delivered and set up yesterday, as well as some other things that will be helpful to Misty while she's so weak.

Misty's not feeling well enough to go to church today, so I'm staying home with her so that she isn't left alone.

Thanks again for all the prayers and everything else.

Doing better

Misty's intestines are finally cleared... sort of. After running the Drano--I mean, bowel cleanser--through Misty's system and seeing that there was still some sort of blockage, they tried the manual disimpaction. What they found was that there wasn't anything close enough to disimpact. So they next ran a gastrograffin enema, which is usually used for colorectal imaging, but in this case was used to help break up the blockage. A short while later, the broken up material passed.

At that point, her body was passing liquids without any apparent problems. But the results of a CT scan showed that something was still interfering with Misty's gastrointestinal tract--there was still a lump in her colon. So, just to be sure that everything that could be cleared out was cleared out... and (what I was afraid of) to make sure that the lump wasn't cancer that had spread to inside her intestines, they performed a sigmoidoscopy (a colonoscopy for just the lower part of the colon). What they found was... nothing. At least, nothing inside the colon. No blockage, no tumor. But... it seems that one of the tumors that's inside her abdomen is pushing on her large intestine, causing the constriction. So, the good news (and, yes, I'll take good news wherever I can) is that it won't change much for Misty, except that she's going to have to take stool softeners regularly.

Also, in the mean time, the swelling in her belly is returning--after just a few days. Because it looks like this will continue to happen (at least until her tumors are gone), Misty's doctor installed a drainage tube so that the fluid build up can be managed at home without a visit to the hospital. This evening Misty is still tender where the tube was installed, but otherwise ok.

So... to sum up this hospital visit: Pain under control? check. Bowels moving again? check. Swelling under control? check. It looks like Misty should be getting out of here tomorrow.

Feeling drained... (?)

Two gallons!! That's how much was drained off from Misty's belly. No wonder she was in pain!

So... the paracentesis went well. Last time (in January) it was very painful when the needle went in, and the doctor had to keep adjusting the needle to keep the fluid flowing, thus continuing the agony. This time it was painless. Misty was preparing herself for the torture and was surprised when the doctor told her that the stabbing was already done. The entire procedure went smoothly with no difficulties.

With all that fluid gone, and the pressure and pain with it, Misty is resting comfortably now. The next step is to get her bowels running again. The doctor has ordered an aggressive regimen of enemas and about a gallon of bowel cleanser (the stuff they prescribe for people who are preparing for a colonoscopy). Ultimately, if they can't get Misty's insides running again by tomorrow, they'll have to do a manual disimpaction--and we're hoping it doesn't come to that. Either way, we're expecting that Misty should be out of here by tomorrow night, or maybe as late as Tuesday.

Thanks again for the prayers and the visits, and everything else.

Deja Vu

Misty's back in the hospital again. This looks just like what she was facing back in January: her belly is swollen so big that she looks nine months pregnant, and she hasn't had a bowel movement in a week.

Since January, her abdominal swelling has come and gone several times--but not to this degree. So, when it started to swell almost two weeks ago we weren't that worried. We didn't want to go into the Parkland emergency room and face all that drama, so we put it off, hoping her body would once again take care of itself. After all, the only things that actually happened at the hospital last time were: abdominal x-rays and CT scans, several ineffective attempts at getting her bowels to move, pain management, and finally draining the fluid from her belly with a big needle. This time, we had the pain (mostly) under control, and we were trying everything to get her bowels working (really! everything! enemas, suppositories, laxitives, and even castor oil, and and old mexican home remedy involving garlic cloves). The only thing we couldn't do at home was stick the needle into her tummy and drain it. As her belly kept getting bigger, the pain increased.

We decided to call and talk to Misty's palliative care nurse and see if they could perform the paracentesis (that's doctor language for the thing with the needle in the tummy) in the oncology clinic without having to go through the ER. She recommended going to another hospital, Saint Paul, just down the street from Parkland where Misty's palliative care doctor also works. We got into St. Paul's ER at about 9:30 am today (Saturday...I guess it's Sunday now since it's after midnight) and they almost immediately took her into an exam room. We got her there just in time, because her pain started to spike shortly after we got there. We explained the situation, and got Misty some heavier pain killers in an IV. They told us that they can tap her belly if she gets admitted--they just didn't have those facilities in the ER--and while they're working on getting her admitted, they'd get started working on her bowels.

In addition to getting the pain under control and trying more laxitives, they also did an ultrasound in preparation for the paracentesis. Finally, at about 10:00 pm, Misty got admitted, and moved to a room. They'll drain her belly tomorrow.

And that's about all we know at this point.

This post wouldn't be complete unless I once again expressed my gratitude to all of you who are praying for Misty and our family. Thanks especially to those who of you who are watching out for the kiddos while I'm here with Misty in the hospital. Thanks also for helping me keep Misty company while enduring the ER today.

I'll put an update here tomorrow after the procedure...

So sorry...

It's been a really rough several weeks... I guess after the emotional roller coaster we rode on in January, I haven't been up to writing about all of this. It's been all I could do to just keep going through life's motions--and barely that. I guess it's good news that I'm ok enough to post again.

I'm also very surprised at how many people are actually reading this. In these past weeks, I've been told by several people--people that I didn't expect to be reading this--that they check this blog every day and are waiting to see how things are going. So, I'm really sorry to keep you all waiting, and please forgive me for slacking off.

So... back in January, after she got home from the hospital, Misty was actually sleeping and feeling more rested than she had for quite some time. I think this was due in large part to the lack of sleep caused by all the pain she was in, and then there was the sudden absence of pain and she could finally rest. The swelling in her belly reduced, and continued to reduce for several more weeks. In recent weeks the swelling has returned, but not nearly to the degree that it was, and it has also subsided, mostly on it's own as well. We're taking this as a sign that Misty's body is trying to regulate the fluid build up by itself and is mostly successful, despite the tumors.

If you remember, Misty wasn't able to eat when she was in the hospital last. She could barely keep down liquids and anything that was fed into her tube seemed to cause vomiting within minutes. About 2 weeks later, Misty was eating small amounts of fruits--juicy and slippery fruit like grapes, oranges, and melons--as well as avocados and some soup.

In the first week of February, we got in contact (through someone in our ward) with a couple, Sergio and Eva Bentacort, who gave Misty some "energy" treatments. I don't know what else to call it; the people who do it just call it "energy work" or "energy therapy". (The treatments look sort of like a very light massage, but with very specific hand placement and movements.) After that first treatment, Misty felt relaxed and slept very well that night. The following day, Misty's dad drove her to the couple's home, just south of Dallas. She stayed there for most of the day and received several of these treatments. The treatments again had a profound effect, and Misty (who can never sleep in a car) slept on the way home from the treatments! Over the next couple of days, Misty's appetite picked up quite a bit and she was able to eat more than she had in weeks. Misty was invited to go to the clinic in Mexico where the Bentacorts where trained and to get more intensive treatment. The first weekend in February, Misty and her mother went with the Bentacorts down to Monterrey, Mexico. Even though I didn't (and still don't) understand this "energy therapy", (and, to be honest, it seems a little weird) we are convinced that it's certainly doing something positive. Since that first treatment over a month ago, it's been a slow but sure progression back to health.

At this point she's feeling about like how she was at Christmastime--but better. She's taking very few painkillers now. As a result of fewer pain pills, she's much more clear-headed. (Those of you who came and saw Misty in the hospital in January saw just how foggy all the pain meds made her!) For the past two weeks (three, including today) she's been able to sit through all three hours of church. She really is doing much better. We have been praying for a miraculous healing, and this certainly looks like one. She's not out of the woods yet, though. She is still losing weight, despite eating as much as her body will let her. She is still very weak and gets tired throughout the day. She has to sit down or nap frequently. And of course, the pain just shows up every now and then, exploding in her stomach for no apparent reason. The good news is that it goes away after a relatively short time.

Misty is going back down to Mexico next weekend for another set of treatments.

In failing to provide you all with updates on Misty, I've failed to express our gratitude here as well. Misty and I are truly grateful for all the help we've recieved from you. Thank you to those of you who came over and deep cleaned the house. It's amazing how much better things look with clean windows and scrubbed walls! Thanks again for the meals--both fresh and frozen. Thanks also for just coming over. Misty loves the company (and the attention). Thanks also for helping us out with the tires (the ridiculously expensive tires!) on the van. Misty wouldn't have made it to Mexico without the help. And thanks for so many countless other things.

Also... some of you haven't seen Misty for a while. Some of you still haven't seen Misty since she was diagnosed. Because she looks so different than what she did eighteen months ago, some people don't even recognize her. Here are a couple pictures of Misty that might help you recognize her. I have to say that when I went looking back through some of these pictures, I almost didn't recognize Misty anymore.



The first one was from March 2008, the next one is from July 2008, and the bottom one is from Christmas 2008.

Back in again

After Misty was discharged out of Baylor at Garland on Friday, we were frustrated and scared. Misty's bowels were moving, but only a little. Her belly was still distended and painful, and she still wasn't able to keep any solid foods down. Further, her doctor was recommending that we look into hospice! HOSPICE!

So, the following day, Saturday, yesterday, Misty wasn't able to keep anything down. Nausea and vomiting was preventing her from even drinking water again and, once again, we were worried. So, at 2:50 PM we arrived at Parkland. At least this time we would be able to have her regular oncologists available to answer some questions.

To make this long story shorter, here's basically what we learned after speaking with a few doctors last night: Fluid in the gut (between the organs) usually gets reabsorbed by the body and carried out in the urine. Somehow this process isn't working properly right now. There are possibly three reasons for this: heart disease (as in congestive heart failure), liver disease, and tumors.

Earlier today they inserted a tap (a big needle) and drained a bunch of the fluid from her belly to reduce the swelling and pain. They said they would probably start chemotherapy soon in order to shrink the tumors and lessen the possibility of this condition returning.

So, the good news is: Misty is doing ok. If this fluid can be managed, she will be doing as well as she was a couple weeks ago. This might also make sure her chemo treatment starts sooner, rather than later. Misty is still full of fight and is planning to stick around for a long, full life.

At the moment, Misty's aunts, uncles, grandparents, cousins, and siblings have traveled in from California, Missouri, Idaho, and Canada, as well as other parts of Texas. They're all taking turns visiting with her in the hospital.

Also, we sang this song today in sacrament meeting and this verse touched me especially:

So amid the conflict, whether great or small
Do not be discouraged; God is over all
Count your many blessings; angels will attend
Help and comfort give you to your journey's end

("Count Your Blessings", Johnson Oatman, Jr. 1856-1922)

Not so good...

Last night Misty didn't more than an hour's sleep. She was in pain all night, despite taking her heavy pain meds. At around 6 AM we called an ambulance and got her into Baylor Hospital at Garland emergency room where they gave her some more heavy pain medication. Then they took a couple X-rays and a CT scan. And more heavy pain killers. The doctor explained to us that she has an "early obstruction" in her intestines which is causing all the pain. In one sense, this is relieving since we were worried that it might be a complication of her recent surgery or possibly her tumors causing the pain. This also makes sense as she hasn't had a bowel movement since the night before the surgery--3 days ago!

We were told that a specialist would have to be contacted because of Misty's particular situation. They said that they would prefer to send her over to Parkland Hospital where all of her recent medical treatment has been done, but after consulting with one of the doctors at Parkland found that there were no beds available there. So, it was decided that it would be dealt with at Baylor Garland.

Finally at around 5 PM she was admitted and taken from the emergency exam room and put in a regular patient room. At around 9:30 PM we heard from a doctor again who informed us that it's not a complete obstruction. He said that there are a couple of things they can do: they'd normally try to decompress her bowels by using an instrument that goes down the patient's throat, through the stomach and into the intestines and then suctions out some of what is causing the blockage, but because of Misty's tumor in her stomach, they'd have to try it through her feeding tube instead, which makes the procedure more difficult. If that doesn't work, they'll try surgery.

In the mean time, Misty's not allowed to take anything by mouth or feeding tube. Doing so would only make the problem worse. They've also taken her off of most of the heavy pain killers because they all cause constipation as a side effect. And they've placed her on total bed rest to her bowels relax. Misty's not allowed to get up for anything (not even the bathroom--she's supposed to call the nurse for help with a bedpan... but then again, at this rate)

I'm home for the evening, but I'll be back at the hospital in the morning after getting the kiddos off to school.

Thanks again for all your prayers. We certainly need them. And thanks also for all the continued help with everything. We appreciate the meals, and the rides for the kids, and the babysitting, and everything else.

I know you all like to get updates about Misty, but I wish I didn't have so much news.

Surgery

Misty had surgery on Thursday. The plan was that the surgeon would start with an exploratory surgery (like the one that went badly a few months ago) and then, if the cancer was confined to her stomach, her stomach would be removed. That wasn't the case. The doctors found that Misty's cancer isn't limited to her stomach, but is spread throughout her abdomen. The good news is that it hasn't started growing in any other organs--her liver and intestines and other organs seem to be clear of tumors. The tumors are attached to the lining of her abdomen, and while they aren't directly disrupting normal organ functions, the tumors are crowding her organs, causing severe pain from time to time.

So, Misty is now recovering from the surgery. Immediately after the surgery, she was feeling ok. By the time I got home from work (I work evenings these days), she was up and around. Since then, the hospital's drugs have worn off, and she not doing very well. Today, she's in the worst pain she's seen for quite some time. She probably won't be going to church tomorrow.

Within a week or two, she'll be starting chemotherapy again. We have lots of reasons to hope. We've seen success with this, and with the other herbal and enzyme treatments she gets at home. Apparently the answer isn't surgery for Misty.

She wanted to post pictures of her new scars, so here they are:



Toward the top is her feeding tube. We thought they might replace it, but it's the same old one she's had since August. Then she has a small incision to the left of her belly button (the dark horizontal line toward the right of the picture) and then there's the scar in the middle, just above her navel. You can see a clearer picture of it below.








Here it is: Misty's 2nd bellybutton.