Assorted Nonsense

Opening presnts

I guess the last few weeks haven’t really been filled with nonsense so much as the usual medical garbage that we deal with. After having to postpone John’s third round of chemo due to low platelets first and then low white blood cells the following week he finally started round three. Two days after taking the CCNU pills that he takes the first day of the round his head started swelling bad. He was walking around with an ice pack ace bandaged over his right eye and was taking tons of pain pills and steroids trying to get the pain to go away. His face broke out in a rash again as well. It was pretty clear at that point that he had definitely developed an allergy to the CCNU. We called the oncologist to let him know and he said okay just keep doing what you are doing until your next appointment, go ahead and continue with the treatment plan. The CCNU is only the one day of pills so we figured it was over at that point. Did I mention I had the worst stomach bug I think I’ve ever had and during that day so he was taking care of the girls while I was sleeping on Colby’s bed. Colby would lift his arm up and put it on my face when his cartoon was over, I’d wake up enough to get him another one and then I’d fall back asleep. It was a fun weekend.

The following week John goes  for his Vincristine infusion and that night he starts taking the Procarbazine pills. He is miserable. We figured he got the virus from me. What was really happening was his body was reacting to the Procarbazine. By the following Saturday he had broken out in hives. He was up all night. I finally convinced him Sunday morning (Mother’s Day) to go to the ER and get some Benadryl by IV because the Benadryl pills he was taking weren’t helping. He went in got the Benadryl, some IV steroids and an Epi shot. Convenient of him to not tell me his chest was starting to tighten wasn’t it. He said he didn’t want to worry me. UGH that man can drive me crazy some times! They finally sent him home and told him to call the oncologist in the morning. So he came home and felt much better.

Monday we talked with the doctor and his nurse and they want him to with the infusion he has scheduled for next Thursday since that one doesn’t seem to be causing him any problems. They’ve only ever had one other patient in the neuro clinic develop an allergy to the two pills he was taking. Everyone else has a hard time with the infusions. Figures right? We go back for his appointment on the 27th to see what the new plan is. The original goal was to do 6 rounds of this treatment knowing that they’d never had anyone complete more than 4 rounds. At this point he’s completed most of round 3. He didn’t take 5 nights of the 14 Procarbazine pill doses but he will finish with the last infusion.

Neither one of us is really sure how we feel about it at this point. The nurse thinks the doctor will want him to go back on the Temodar that he took his first time taking chemo. She seemed to think that was what he usually recommends if you can’t continue with the PCV therapy. John’s worried that by not completing at least four rounds that means the cancer will come back fast like it did last time. The PCV therapy in combination with the radiation he did this last time was shown to keep recurrence from happening longer than the Temodar therapy he did originally. That therapy should have kept the tumor away longer than it did the first time so who knows what will happen this time. We both try and stay optimistic but it can be hard when you can’t complete the therapy that had a better outlook.

During all of this cancer garbage all the kids had the stomach virus, Riley turned 7 and Colby turned 9. We had a joint Spider-Man/Hello Kitty birthday party for them. Colby was excited that two of his friends from school were able to come and another friend who couldn’t make it to the party came over earlier in the week and played for about an hour. He loved it. He never acts very interested in having friends over so we’ve never tried it before. It was fun to see him having fun with his buddies.  I love that Riley thinks it is fun to share a party with him and that she doesn’t complain about having boy stuff with her girl party.

Here’s some pictures from the party to end with.

Writer’s block? Life block? Blogging block?

Riley and Colby's birthday 2012

Who knows what it was but for whatever reason I could not form a blog post over the last four months for anything! I’ve logged on several times and stared at this section and never found anything to type. Maybe it’s because the routine of our life had gotten a little to routine. Maybe, it was because I felt like I had nothing else worthwhile to say. I think in part I finally was processing some of the emotions I put on hold from when John’s brain cancer was diagnosed. I’ve gotten so used to going into “medical mode” and dealing with what ever was going on as long as it wasn’t dealing with what was in my head.

I think another part of it was that Colby had a near constant sinus infection during this entire time. We’d hit it with antibiotics, it would go away for a week, then it would come back stronger. Poor kiddo was miserable and I blame the entire thing on his aide on the school bus! Entirely her fault! (Amy if you are reading this I’m sort of kidding!) She asked me back in January what I did to keep Colby so healthy. He was the only one who never missed days of school. Of course, Colby being the backwards boy took that into his head and decided that if other kids could stay home by being sick he’d have to get in on that action too!

Thirdly, (Is that a word? Oh well, I’m sticking with it.) John hasn’t been to work since February! It’s been nice since we’ve only had one car since last July to not have to take him to work and pick him up every day. Do you know though that men have an entirely different idea of how a day should go? How homeschooling should go? How chores should be done and at what time? Did you know that you could have a perfectly acceptable and workable plan to life and accomplishing the things you do every single day and it can all get shot down by the Army deciding to put your husband into the Wounded Warrior program? It can!

I’m not complaining. I’m really not. We work well together as a team mostly because I let him take charge and tweak things the way I want them after he gets done doing his thing. Is that bad? If it is I’m not changing. It’s worked well for us for almost ten years so I suppose it’s going to continue.

As far as John and the cancer go (drum roll please…..) he officially completed his last round of chemo two weeks ago! He doesn’t have to go back to the oncologist until July. Of course that doesn’t mean we won’t be down in SLC during June. In fact we just got home two hours ago from Colby’s Deep Brain Stimulation doctor. Colby also has Botox/Phenol injections at the end of this month. The doctor is very pleased with how well John handled the chemo, his recovery from surgery and his attitude about all of this. So for now we just wait and see. The doctor said it would be unusual to see any regrowth before five to ten years which is much better than the original three to five years we were first told. Plus he also told us there are three new medicines in stage 2 and 3 trials that are showing very promising results for the more aggressive brain cancers. He thinks by the time John has a re-occurrence that they will definitely be on the market so if the Temador doesn’t work a second time we will have more options available at that point and won’t have to go straight to radiation. Of course we’re still hoping that it never comes back but like I said before, I do much better dealing with things knowing what I’m facing instead of hoping for the best. Just the way  I am I guess.

I feel bad! All three kids had their birthdays and I forgot to write them birthday posts. I hope that someday they understand that I’m doing the best I can and they’ll forgive me for it. I think I’m trapped somewhere in time a few years ago. I keep thinking Riley is 3 and Colby is 5. Jahnna doesn’t seem to me to be younger probably because she’s begging to wear makeup and for us to buy her a cell phone. She just turned 9 and cannot understand that I didn’t even have my own computer until I was in my 3rd year of college and that I didn’t have a cell phone until I was in college. We haven’t had a home phone for over two years now and I don’t think she even remembers that we did have one. Funny girl.

Colby turned 7! Where has the time gone? Part of him will forever be 2 in my mind chasing his dad down the street trying to get on a skateboard. He’s gotten big. He looks like a 7 year old. Like a little boy and not a baby. He’s such a trash talker! It’s probably good that most people can’t understand what he says because man can that boy talk smack! It’s a good thing he’s so dang cute though.

Riley has a new nickname it’s “Chugga chugga choo choo train wreck!” I am not sure I have a seen a kid run into a wall as many times as she has. She can walk down the street and trip over nothing. She absorbs dirt and mess where ever she goes and is constantly getting into trouble no matter who she is with. I think she currently has 3 band aids in different places on her legs from either skinning her knee or having the back tire of her bike run over her leg. I still haven’t figured out how she managed that one but she’s done it three times this week. It’s hard to believe that she’s 5 already. It seems like we haven’t lived her for 5 years so how can she be that old already?

If you’ve read this entirely too long post I’ll have to reward you with a picture! ;) Here is Colby and Riley getting ready to blow out the candles on their birthday cake. I’ll try and post some more pictures soon.


What to write?

I know it’s been awhile since I last updated. I have so much to write and don’t know what to write about all at the same time. This last round of chemo went well. John was tired but not as tired as the round before. He will get his blood drawn this Friday and hopefully his platelets didn’t drop with this lower dose.

John went to Arizona with his brother the Sunday after his chemo ended. I figured it would be good for him to get out of the house  and spend some time with his brother. He had a lot of fun. It wore him out but not as bad as he thought it would. Of course it did help when they broke down in Page, Arizona for two and a half days and had nothing to do but sit and sleep in a hotel room. They finally got a rental car left my brother in laws work truck there and came home. I was happy for him to come home but not as happy as the kids were.

Him being gone was depressing. I have never liked when he leaves but this felt different. It’s the first time he’s been gone for longer than one night since we found out about the brain cancer. It was so quiet after the kids went to bed and I found my thoughts drifting to places I didn’t want to go. Those what would I do if this was for real kind of thoughts. If he doesn’t beat this cancer or it comes back faster than we hope. If it’s two years instead of fifteen or twenty? How do I explain this to Colby whose heart was broken ever single day his dad was gone. How do I raise my children with out their father and my best friend by my side? I really try not to think thought like that. It’s so depressing but how do not think them?

There are days when I’m so scared it takes my breath away. I think that more than anything is why I haven’t written much this month. If I type it out maybe it will come true. Except that I know that’s not how it works. I know there is a plan. I know there is a purpose  to all of this except knowing that still doesn’t make it easy or maybe I should say easier. The low platelets and having to lower the dose scared me. It wasn’t supposed to work that way this soon in his treatment plan.

So those are the things that have been going through my mind lately. I’m trying to focus on not being so scared. On the positives and not the negatives. I figured that I needed to write down a little of how I’ve felt this month so that when we do beat this I can look back and say to myself “See, you were scared but you got over it, grew and moved on” Or at least that’s what I hope will happen.

In other news. I was incredibly sick the week John was gone. I actually considered taking some of Colby’s hydrocodone I had left over from his stomach surgery because my throat hurt so bad. I couldn’t talk for two days because my voice was gone. I finally started taking some Olive Leaf Extract and Grapefruit Seed Extract nasal spray after my antibiotics didn’t help. Sometimes natural is the way to go! Except when it isn’t. I gave Colby the Olive Leaf Extract and some Grapefruit Seed Extract Oil through his feeding tube in the hopes that he wouldn’t get it from me. I still can’t do his shaky vest on him to help him get the mucus out of his chest. It makes him throw up blood ever since the new feeding tube was placed. Anyway, it worked in that he didn’t get sick but it didn’t totally detox all of his Botox shots out of him so now he is super spastic again. I feel horrible because his muscles are so tight again and it hurts. I didn’t even think about it affecting his shot sites because it’s never happened before. That GSE is some potent germ fighting stuff. Anyway, I called and scheduled him for new shots but that won’t happen until November. I will have to up his Baclofen dose until then to help him be comfortable so there goes his head and trunk control. I wish he could talk to me and tell me what hurts so I can help him more. I’ll just keep trying to walk that fine line with him in keeping him comfortable/giving him functional muscle control the best I can until then.

Riley is loving preschool. She didn’t even look back her first day. She comes home so excited about what she’s learned. Jahnna is still doing well with her home school. She is completely off her antidepressant. Still on a sleeping pill at night and a mood stabilizer for the bi-polar but at least one of her meds is gone. I have noticed a difference in her self esteem since coming off of it though. She’s back to saying she’s stupid and can’t do anything when she makes a small mistake. I try and boost her self esteem every way I can because she is a really intelligent girl. Eight is way to young to have to deal with a poor self image.

So, that’s been our September. I’m hoping October is better. MRI is scheduled for Oct 7th so here’s hoping and praying it’s another clean scan!

Nervous

Today is John’s first follow-up MRI and I’d be lying if I didn’t say I was nervous. I didn’t think I’d be so nervous for this. I told John that I was this morning and he kind of laughed. He said that he had been thinking about it yesterday. He couldn’t decide whether he should dread an MRI or if he should look at it as a confirmation that it hasn’t come back. He’s decided to go with the later. I’m trying to be that positive but I suppose that every two months I will feel like this. Prayers for a clean scan would be fabulous if you could do that!

In other news. We have a wonderful friend who spoke with some people and they decided to give Riley a scholarship to a preschool here in town that is insanely expensive. I never would have even looked it up because I knew I couldn’t afford it. She called me yesterday and asked if I would let her go. It’s 3 hours 3 days a week and it includes swimming, tennis, gymnastics and creative movement! I am so excited for her. Riley was so cute when I asked her if she wanted to go. She said “Sure!” and then she got this really serious look on her face and said “But I will miss you while I’m gone” It was so sweet and cute. I told her I would miss her to but I’d still be here every day. Now she is super excited and she woke up this morning expecting to go today! Oops. I probably should have waited until it was closer to the start date to tell her about it.

I took Jahnna and Riley to the dentist this morning and they loved it. Both of them had no cavities. Riley’s teeth are perfectly straight. Jahnna’s not so much. She has a cross bite that we’ve known about but we’ve got to get it fixed now so she won’t have to have surgery when she’s older. Next week Colby and I are up for visits. Colby has to have the ultrasonic cleaning because his teeth get so covered in plaque from his medications. I’m hoping that giving his some Clonidine before the appointment will make him either sleep through it or relax him enough that he won’t fight it as bad this time. He grinds his teeth so we’ll eventually have to cap his molars as he has already ground them down flat. I’m hoping we still have more time before we end up having to do that.

In car news we’ve decided that we’re going to be a one car family at least for a few months. I still haven’t found a money tree and financing one isn’t an option right now. So we’re fixing John’s truck and I’ll get to drive that one for a while. Ugh it’s a 10 cylinder beast so I’m really going to have to start consolidating doctor appointments in Salt Lake City. Not to mention it’s hard on my back to get Colby’s wheelchair in and out of the bed of the truck since it’s raised up a few inches. Oh well. Who needs a back anyway right?

Today I’m kind of struggling to not be down about things. So I’m sorry if this is kind of a negative post. I’m working on counting my blessings and focusing on the good. I suppose today is hard just because I’m nervous so I will spend the rest of the day trying to focus on keeping my mind busy so I don’t think about what it could show. So in honor of that I’m off to wash the dishes and fold some laundry.

 

Finding the silver lining

camo truck

The past two weeks have flown by for a variety of reasons. We’ve had so much go on that I’ve decided I need to focus on the good things that have happened. If you look hard enough there’s always a silver lining to your trials, right? I hope so, so I’m looking hard!

The most important is that John completed his first round of chemo! He did pretty good. It made him tired but no throwing up or anything like that. It was just a half dose so I’m sure the full dose is going to make him more tired but if that’s all it does that will be fabulous! He starts his next round in August after two blood tests next week and the following week.

Colby started summer school. He HATES it. Different teacher that is a man so I’m actually not surprised. Colby is a flirt so of course he likes his regular teacher better. I don’t think we’ll do summer school next year. It’s a nice break for me but every morning he gets so sad and pleads with me not to put him on the bus. Those puppy dog eyes of his kill me every morning! Little stinker knows how to get mom to give him what he wants!

My car died in the drive through at the pharmacy last week. We all thought it was the starter. John, his brother Rob and I spent all weekend just trying to find the stupid starter in the car. After we couldn’t find it (yes, I know you should be able to follow the positive battery cable to it but it disappeared!) we started testing other things on it. There was no compression in the engine. At that point we knew it wasn’t the starter and that we had a much bigger problem on our hands.

I had it towed into a shop on Monday. Tuesday he called and asked me how I was doing. I replied with “I don’t know, you tell me! How am I doing?” His response was “Weeeeel we don’t know what’s wrong with it. I need to take off the valve cover and take a look inside the engine because my x-ray vision isn’t working today”. Yes that’s what he said. I should have told him no but I was still hoping it might just be the timing belt or something while expensive not the end of my engine. He called back on Wednesday. The car has had a “catastrophic engine failure” again those are his words not mine! Good grief my car was only a 2005 and it only had 73,000 miles on it. It’s not supposed to do that for at least another 50,000 to 70,000 miles. I think I might have said before that you truly can’t make my life up! You can’t it’s not possible to have this much stuff happen to one family in a fictional story! People just wouldn’t believe it.

He wants $4,400 to replace the engine. I just laughed. Sure let me write you a check for that! As it is I now owe him a $150 just to tell me my engine is shot!

In good news I called the health insurance company about retrofitting a mini van to be wheelchair accessible. The will pay for a lift and installation just not any physical modifications to the vehicle. I really didn’t think they would cover anything so to hear that they will pay for a $20,000 lift is beyond outstanding! Now I just gotta get my hands on a mini van. Anybody have one they wanna give me? Just kidding! I know it’s not that simple but I can dream right?

In the mean time I’m driving this beauty my in-laws lent me!

camo truck
Don’t hate me because you are jealous! Just kidding! Actually I’m incredibly thankful to have anything to drive at all. John’s ball joints on his truck are bad and it needs new tires before it can be driven and I already told you my car is dead. It was kind of fun to drive to Salt Lake City Tuesday for Colby’s doctor appointments. You should see some of the looks I got, especially with Colby’s wheelchair in the back. Ugh that hurt my back to lift it in and out that high but it’s okay. It’s wheels and it got us there.

The surgeon said Colby’s surgery site looks great. He didn’t actually change the tube like he said he was going to. He would have needed an x-ray after that and I know how to change it already so he was fine just leaving it in for now. Next we headed over to the neurologist and this is where I really wanted to bang my head on a wall! Almost did to!

Last August we put a Deep Brain Stimulator in Colby. We had been adjusting it every month but due to all the craziness we haven’t adjusted it in over 5 months. We went in and talked about the two programs I ran on him. One of them sent him into huge spasms and the other one I couldn’t tell any difference with. Dr. S. decided that she wanted to shut it off and see what happened. That way we would be able to see if there was any difference in him at all. She shut it off and he immediately went limp! Absolutely rag doll floppy! This is what it’s supposed to do when it’s on, not when it’s off! I really just about burst into tears. Dr. S. said “Well I wasn’t really expecting that! I’ve seen it happen but it wasn’t what I wanted to see.” Anyway it’s been off since Tuesday and he’s exactly the same as he was with it on. Basically it means that the two contacts we’ve been using this entire time are doing nothing for the spasticity. We still have 4 contacts left to try but that just cut down our options significantly. I am supposed to call them and let them know what happened after I left. Maybe I’ll do that this afternoon.

And just because I can’t end on a bad note, here is this cute picture. Riley climbed up into Colby’s bed and was holding his hand. I asked her what she was doing and she said “I just wanted to snuggle with my brother!”

snuggles