Making Decisions

The last couple of weeks have felt very busy. We had a good 4th of July. I found the box of left over fireworks from last year and we picked out a few new ones. Owen got to light everything off while Dave and I sat back and watched. It was a nice family moment.

David decided to stop doing the Avastin treatments. His first missed appointment was July 3rd so the 4th was something of an Independence Day for him as well. Free from the medicines and free from the stress associated with making the decision. His whole demeanor changed after the decision was made. He's so at peace which in turn helps me be at peace. Last week he went in to have the central line removed since he won't be getting any more treatments. He had it for over a year and while it didn't hurt it was a low level irritation that he is THRILLED to be rid of. I got to watch them remove it which was super cool... I know... That's weird. I'm weird. Ha! David was amused by my amusement. He got no stitches and it's healing very well which we're happy to see. Thats a change from even a month ago when he was still on Avastin and the sore on his leg took over a month to heal. They found a clot in the central line when they removed it and advised him to start taking the blood thinner again but we let them know he won't be taking that anymore either. 

Tomorrow he has an appointment with the oncologist, basically to make sure he's got all his T's crossed and such. Every healthcare professional we've talked to has been very supportive of this decision and that gives him some peace of mind as well. Deciding to stop the Avastin is something we've talked about off and on for the last year. Recently he took a little downhill slide and the dr started asking a lot of quality of life questions. It obviously had come up a lot more often lately. The dr is right, his quality of life has diminished. I think making the decision now felt right for both of us. Once that decision was made we discussed all his other meds. Most things are palliative but the Coumadin treats something so after heavily weighing the pros and cons we decided to stop that too.

The potential complications and side effects of being on them far outweigh the benefit at this point. The hospice manager had a lot of questions but after discussing it she felt we had more than adequately explored both sides and she supported our decision as well. It's nice for David that people haven't questioned him in a condescending way. I think he was worried about that but you'd have to blind not to see the impact this has had/is having on him.

David has spent countless hours trying to encourage me, build me up, prepare me for the windy and bumpy road this journey is taking us on. He says it makes him happy when Owen and I make plans for the future. Sometimes that is really difficult but if we can give him some peace of mind that's the least we can do. I'm grateful every day for how much love, patience and selflessness Dave shares with me and Owen. It would be so easy for him to be bitter or angry or depressed and he does his best to not burden us with that. It has helped me keep my chin up and I felt like it was important that he share that with Owen too so we had a long talk with him about stopping the meds and what that means.  I wanted David to share those words of encouragement with Owen as well. To let him know what he wants for O's future and how he knows it will be hard but that Dave is excited for us to keep moving forward with our lives. That he wants to hear about our plans. D has always needed an adventure to look forward to, usually a vacation even if he planned it a year in advance. Now he's planning and preparing and looking forward to his next adventure. 

Owen is doing remarkably well. He's staying moderately busy and planning for high school. We talk about everything regarding Dave's health very frankly with him and when he has concerns or questions he brings them up. He amazes me every day and I know that he and I will be ok. 

So... What does this all mean? It means that the blood vessels have started growing again and the tumor will soon be getting "fed" again. How it will react is anyone's guess. We assume it will start growing more rapidly and his paralysis will progress and he will pass. That's really all we know. Stopping the Coumadin means he'll likely get blood clots. Those could kill him as well but really since that's the road he's on anyway we're not worried about that, worst cast scenario he has a stroke that doesn't kill him right away. It's a little out of the ordinary to not list "death" as your worst case scenario. Having a stroke isn't very likely but we tend to explore every known possibility when we make decisions.

I'm not going to sugar coat it. Staying upbeat is increasingly difficult. There are a lot of tears and anxiety but I am also comforted by the fact that those thoughts and feelings are normal and I'm not alone or unique in that process. David made this decision the Thursday before Jesse's birthday and that was a rough week for me but I am also acutely aware that life goes on for the rest of us and to spend all our time with an Eeyore cloud following us around is a waste of our precious resources. 

This week our thoughts and prayers are with Tim and Rose's nephew, James Dahl, who is getting ready to go to UCLA for a hemispherectomy to treat a very rare disease. Those who are local may have read about him in the Register Guard or seen a story on KEZI news. We hope James' surgery goes as smoothly as possible and that he and his family are filled with patience and strength and hope for the future. I wish there was more we could do to help but please know our hearts are with you. 

Please go here to learn more. 
https://www.giveforward.com/fundraiser/5zn1/helpjamesfightepilepsyjointhejteamd

Summer!

Man it's been hot the last couple of days. We've got the air conditioner in the bedroom so it stays relatively comfortable for Dave which is nice.

Let's see where I left off. Oh the bed! We got them to return it. They took a little cut of it, 15% of the shipping cost which turned out to be something like $100. I called UPS to see if they were pulling my leg but nope... shipping really was that expensive.  Oh well. Lesson learned and it makes for a funny story.

The 8th grade party was amazing! Chairing that committee wasn't my best choice as far as stress goes but it went off wonderfully. Along with all the parent volunteers that helped make it happen I called in my secret weapon, Ariana!  That girl! I know she's just as uptight about things being "just so" as I am in some ways and when I gave her a job she took that thing over and did fantastic things with it. I don't know that I would have survived that night with my sanity intact without her.

A couple weeks later David ventured out with us on a non-dr's appointment trip to Owen's 8th grade graduation. It was just a quick trip down the street but it meant a lot to all of us. He got to see the band and choir (both of which Owen is in) perform one song each which is great since he wasn't able to see any of those performances live.

Owen is now done with middle school and on to High School. EEK! He finished off this year with a 3.86 GPA which is so fantastic, especially given everything that's going on at home. In the fall he will be doing Marching Band and Chess Club... what a nerd... don't know where he picked up the nerdiness from. *whistles* *snicker*

Quarterly Blog Update -or- It's Been 2 Months? Oops.

Is it really almost the end of May? 2013 has been kind of a blur so far!

Owen is almost done with Middle School!! He has something like 11 days of school left. Everything until the end of the year is going to be really busy.  He's got National Jr Honor Society meeting where he has to read something for the incoming NJHS students, he's got choir and band concerts, 8th grade party, field trip, 8th grade breakfast, marching band orientation, chess club meetings, 8th grade departure ceremony.  He's at least 5'9" now and he's working on a little mustache, much to my chagrin. The 8th grade party is going to take up most of my time this next week. My mom is coming down to hang out with Dave on friday so I can be at school to decorate/chaperone/clean up.  I'm sure Owen loves it.  *snicker*  He's really just psyched that I bought him a new suit for the party and I wouldn't let him wear it yet so it's been hanging in his closet, taunting him.  It wasn't really necessary to get a suit but he loves to dress up and has multiple blazers and suit jackets from thrift stores so I figured this was worth the splurge. (plus jcp was having an amazing sale!)  He's soon to be a high schooler. Heaven help us! ;)

Dave is doing ok. Not great but ok. We've swapped around his meds SOOOO much.. Last time I mentioned going on Neurontin and staying on the steroids. Well nix those things!  He was getting so clumsy that he decided to go off it to figure out if it's the medication or the tumor pressing on things making it worse. It appears to be the tumor. On the bright side he doesn't have the tingling anymore... He can still move the right hand mostly but his fingers don't really go the way he wants. We joke that his hand has to be supervised because if he's not looking at it it kind of has a mind of it's own.  His left hand has a tiny bit of numbness on the tips of his fingers but he still has full use of that hand thankfully.


He also went off the steroids for now because his getting such uncomfortable side effects. That could be contributing partially to how bad his hand has gotten. I don't know if I relayed that very well but yeah, it's bad.

The dr says things like "I think the avastin may be coming to the end of it's usefulness" and we don't really know what to make of that.  They're going to keep him on it as long as he wants to be on it but we're to the point where being in the chair is a little more difficult and disorienting for him since his right side isn't as stable.  OH! and he's got what we think is his first bedsore.  Daddy's first bedsore... not really as fun as baby's firsts, right?  It's on his calf and in a spot that doesn't REALLY make sense for a bedsore but I guess it's possible.  It's either a bedsore or a tear in his skin which I guess probably came from the bed/pillows which I suppose qualifies it as a bedsore... technicalities.  They put a skin colored kind of clear bandage over it that's supposed to stay on for a week to keep it from rubbing against things. The combination of the Avastin and the Steroids (which he's been off of for a couple of weeks) makes him unable to heal well, plus the coumadin which thins his blood and makes him bleed more than normal.  The sore really isn't producing a scab which is not great for healing purposes.  I hope this bandage she used does the trick.

His skin is very sensitive, he bruises very easily, his edema(swelling) is back in his feet and legs.  He's just fragile. Thankfully he's not really in any pain, just occasional discomfort in his neck.  he's thinking about going back on the steroids to try to alleviate some swelling in his spine and maybe get a little of the movement in the hand back but then he has to deal with all the other side effects again. It's kind of a toss up.

 He's also on new sleeping meds and increased his morphine a bit.  We (Owen and I) moved the bedroom around so Dave could have the little table on his left side to accommodate the hand situation and there isn't really much room in there now because of the way the room is laid out. (He's going to kill me for telling this story. Hi Honey, I love you!) We talked about getting rid of the queen bed and getting a daybed or something so we could move things over.  So a few days later he showed me an email where he thought I had ordered a daybed and it was meant to be delivered soon. He thought I did it to surprise him.  What he didn't realize is that no, that was his amazon account and I hadn't ordered something. We thought maybe it was coincidental spam because he swore he didn't even look at daybeds... then we investigated. About 2 hours after taking his sleeping meds he used his phone (which he can thankfully still manipulate) to look up daybeds on amazon.  He found one he liked and he ordered it.... a $500 daybed... and there were 2 more in his cart!  Thankfully he didn't order all three!  So now we're waiting for the bed to arrive so I can get it shipped back and get a refund.  He's not on Ambien but it's kind of like the crazy things you hear about people doing when they take Ambien.  He was drugged up shopping. I had to remove the credit card information from his amazon account.  He got cut off! Sweet of him to want to help out even in his altered state! At first I was irritated but now I think it's really funny. It's a good story in any case.

We're still thinking about bed arrangements, maybe I'll see if I can trade beds with Owen as he has a twin.  I wouldn't mind having a daybed as a guest bed or something for the future but $500 for a bed without a mattress is just a little steep for what we need it for.  I was thinking about giving the daybed to Owen once I was done with it but he's growing so fast that I figure I'll have to get him a full size bed before too long anyway.

As for me, I'm doing ok.  Last year was more physically demanding I think but this year has been more emotionally demanding. I take every little thing to heart and get over-emotional when I don't really need to. HA! So... back to normal? ;)  I'm taking my thyroid meds regularly finally and I've been having a bit of aphasia (I forget words or lose my train of thought mid-sentence).  This happened before so I'm going to get my levels tested again because apparently too much thyroid hormone in your system can cause that. I'm not a fan of whatever is happening. Not like the memory loss could be stress related... heh. I try to do things for myself but none of it feels particularly rejuvenating.

We're thinking about trying to get Dave up in the chair and over to the school for Owen's 8th grade departure ceremony.  It's only about 3/4 of a mile away with sidewalks the whole way, we could probably push him in the chair there if need be if the weather is nice. There are wheelchair accessible cabs... yes, but fresh air!  We'll see how he's feeling in a couple of weeks. We have time to decide.  I keep thinking that he likely won't see Owen graduate from high school so this might be a nice memory for Owen to have. I figure I'll be a mess if Dave does make it there but I'll be a mess if he doesn't so I'd rather him be there if at all possible.

I'll try to write more regularly so it's not a novel every time but no promises ;)

Still here!

Hi strangers!

I know it's been a while since I've posted, every time I sit down to write the words just don't come to me so I'll try to summarize. Dave and Owen recovered from their colds nicely and I thankfully never got it. We all three had birthdays, low key quiet birthdays. 40, 37 and 14... I'll let you guess who's age is whose.  lol

Basically the last couple months have been a roller coaster. We hit a lot of one year milestones and they've just been difficult to navigate. We're kind of out of the shocked stage and on to actually dealing with everything that's happened in the last year. I'm kind of a fan of the idea of going back into shock. In shock I was managing just fine. Now I'm kind of up and down and having a harder time managing. Pretty much only thing things that HAVE to be done are getting done at this point and I'm ok with that. I even turned down some stuff people wanted me to volunteer for, that was hard to do. I was away from the house for 6 hours one day helping with a fundraiser at the school (that I helped to organize). Tim came to the house and hung out with Dave and while I was at school I realized that I haven't been away from home that long in a whole year. That wears on me sometimes. I can't imagine what it must do to Dave who has much greater wanderlust than I do.

A quick overview update of things. Not much has changed. Dave is taking some new meds to try to get rid of the tingling in his right hand. It annoyed him so much he held on to his hand pretty much constantly. Now he's taking a new med, Neurontin, and it's helping that pain but it's also making him more clumsy and a little bit forgetful. We're trying to decide the best course of action. He's also having side effects from the steroids he's on but they're helping his shoulder and neck pain so much that he can't really bear to go off them.  He decided to suffer through the inconvenient side effects for the more beneficial effects. It's hard to know exactly what to do to make things better since all the meds have side effects and interact in different ways.

I'll write more later but those are the main points I wanted to touch on and to say that yes, I know I've gotten multiple emails from some of you and no I'm not avoiding replying, I've just got too much on my mind and plate to reply at the moment but we're here and we're fine (relatively) and we're just plugging along and doing the best with what we have.

Cooties!

So turns out things weren't exactly back to "normal". Dave definitely caught a cold and yesterday morning started coughing pretty bad. It got worse throughout the day and last night neither of us slept very well because his cough sounds SO awful.  I was on high alert. At one point he knocked something over and I thought it was his water, I went from mostly asleep to on my feet in half a second.  Thankfully it wasn't anything important and I could lay back down.

The big problem with him coughing is that he can't. Yeah... he can't. Think about when you get sick and how much your abs hurt when you have been coughing a ton, he doesn't have the ab muscles to help his body cough things out.  We've figured out a way (yay google) to assist him where I basically give him resistance on his stomach, below the rib cage, so his diaphragm has something to press against when he tries to cough.  It seems to work fairly well but it's a bit of a production and it wears him out. 

Normally a cold like this wouldn't be a big deal but in his case it could go from bad to BAD very quickly. We're mostly concerned about pneumonia. He's taking some meds and sucking on cough drops like candy and I got a vaporizer to help keep things loose. He's been sleeping a lot which is good since he didn't sleep much during the night. It's stressful on both of us.A hospice nurse is making an unscheduled visit tomorrow just to check on him which is good.

Owen is still sick, he missed pretty much all of last week of school. I sent him back on Thursday only to get a call around 1:15 from the school nurse saying he has a fever and please come get him.  He's been laid up all week/weekend and has been putting himself to bed at 8.  That's totally unheard of. I'm hoping he's well enough to go to school in the morning but part of me is so hesitant because his immune system is low and I don't want him catching MORE cooties from the other sickies at school.  If he stays home tomorrow I think I should take him to the Dr although I hate to because they'll probably just say he's got a virus and send him back home. 

It's been a rough week for me because I have been feeling a little under the weather myself although thankfully not as bad as the boys.  Not only am I doing the normal stuff taking care of David but now Owen needs to be taken care of AND I don't have my helper around because he's sick in bed. I don't feel like I can afford to have a cranky day. We're kind of on lockdown around here, no germs in or out if we can help it. 

Oh yeah, and David has treatment on wednesday. We're not sure what's going to happen if he still has this cough. We'll have to evaluate the risks/reward when it gets closer. Hopefully he's on the upswing and this will all be a distant memory soon enough.

Wash your hands and don't touch your faces!

Back to "Normal"

David is feeling a little better.  His throat is still a little sore and his stomach is still a little sensitive but mostly he's on the mend.  His blood got tested again and his level is down to 2.3 so he starts back on Coumadin tomorrow but half as much as he was taking before, trying to keep his level where it is instead of spiking it back up. 

As for the not passing urine problem that was an issue with the catheter that got taken care of.  It basically wasn't completely draining his bladder which led to other issues.  We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen.  By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!

Needless to say he's more comfortable overall.  The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.

Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet. 

Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted.  So... All's quiet on the western front! 

Feels Like A Pajama Day

David's having kind of a rough time of things right now.  He's got a bit of a sore throat and a headache. I cannot fathom how his throat hurts, he's taking so many different pain meds it doesn't seem possible but there it is. I'm glad the pain meds don't usually knock him out too much but even if they did it would be ok, it's so awful to see him in pain, I would rather see him sleeping just because I know he isn't hurting in his sleep. 

Yesterday they told us his protime (blood thinness) is at 5.4  YIKES! It's supposed to be between 2 and 2.5.  When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling.  Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach.  We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now.  All of this is "wait and see".  I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.

Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home. 

Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms.  So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day.  Yesterday a friend asked me how he was doing.  I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well"  HA! TRUE! It's all in the perspective, right?  It was good to get that reminder. 

So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.