I want to start out with a few thank you messages this week. I first want to thank my parents and Jonathan's mom. They were able to help with the kids combined for over 1 months time. I was able to be with Jonathan through his surgery and recovery, and I knew the kids were well taken care of. Today at Jonathan's Dr. appointment we saw other patients who were couples, none at the age where they would have young children. It made me wonder if this would be easier if we didn't have to juggle the kids along with everything else? But as I sat their and played with Jude, who insisted he come because he wanted to see Dr. Raj, He put a smile on almost everyone's face in the waiting room. I know the kids add a lot of stress to this already stressful situation, but for every stress they give, they also offer a smile, laugh or a wonderful snuggle. I think our home would be much more somber and depressed if they weren't around. Truthfully I couldn't imagine going through this without them now! But I'm so grateful for all the help we are getting with them.
On Monday the 3rd, Jonathan and I headed back over to Seattle for a quick post op appointment. It wasn't easy, but that was a start in the right direction for Jonathan. He was out of the house!!! We attended a gender reveal party for close friends. We were able to get him across the street from the hotel and have a nice dinner. It was a great date for the two of us. The last time we attempted a date we ended up in the ER so we were grateful to have a nice night just the 2 of us.
Overall Jonathan's appointment went really well. They removed the drain tube from his leg, they removed all the stiches in his leg and the ton of stiches on his back as well. The Doctor said Jonathan's leg looked really good. He had more movement than most and the healing looked great. They did a few post op x-rays. I of coarse asked for the disk so I could check it out...
Then we reviewed the pathology results and had the statistics talk... I've actually really been struggling with this conversation. Maybe that's why I've been avoiding a blog update. The Oncologist in Seattle wasn't nearly as positive as our Oncologist here in Spokane. I understand she was just giving black and white stats, where our oncologist here is trying to look for positives. But here it is in black and white:
~If the tumor death would have been in the 90% range, statistically reoccurrence happens in 30% of the patients.
~Jonathan's tumor measured at 65% death. Statistically the reoccurrence rate now is at 50% assuming he can finish the 4 cycles remaining. (We thought it was 3, but it is 4 totaling 5 more months of chemo)
~Because Jonathan got septic meningitis from the methotrexate, they said it is likely that will reoccur. If it does reoccur and they are not able to manage it, they will have to stop that type of chemo. If that happens, statistically when you can't finish the 4 cycles, the reoccurrence rate is higher than 50% I'm guessing like 70%. (I can't remember if she gave us an actual number on that)
Five Months ago we lived with the reality that we had what felt like a 100% chance of growing old together. It's really hard to take that now, at the age of 30, you got a 50/50 shot at this. It is amazing how much of your outlook and mood is effected so much by what the doctor says to you. We knew we were hoping for 90% but Dr. Raj, our local oncologist, made us feel so much more positive. But this time, On the drive home, I cried the entire way over the pass... 50% isn't high enough for me! (You also have to remember that with this type of cancer you get no good news like "you're in remission". You get scanned every 3 months to see if you have stage for 4 lung cancer yet. They can't ever tell you if it is gone.)
I've read so much about how a positive attitude and outlook can really help you. There are actual studies showing that if you can stay positive your immune system is higher, and you have a better shot at this. So I really try to stay positive. When I get down I feel like I have to actually say out loud to myself "OK you had your pity party, now screw your head on straight again." But as we are faced with starting chemo all over again for twice as long, and these looming statistics, I'm finding it much harder to get my head on straight. Jonathan seems like he is also more down than normal as well.
I remembered early on in the process I went to a church sermon that was bout Gideon. I shared the story briefly on the blog. Gideon defeated 135,000 soldiers with 300. If you put that into a percentage that is .2% of as many soldiers. (I think... it has been a long time since I have taken math classes) I keep telling myself the quote the pastor said, "Whatever the odds, trust Gods plan is better." I wouldn't be being truthful if I didn't tell you my trust in this better plan wasn't being challenged right now. I guess the truth is that I'm not doubting God is in control, and that he has a plan, I'm just beginning to question if my ending to this story is the same as his. I do believe his plan is always better, I'm not just saying that, but I do know we don't always like his plans.
Apparently this has gone to a gloomy place and not stayed on the positive side. Sorry folks! But I guess I wouldn't be being real if I didn't share how this process isn't always positive and it does wear on you. But I promise, I will get my head screwed on straight here soon. So here is something more positive.
Jonathan started his nasty round of chemo on Tuesday the 11th. It definitely wasn't awesome, BUT he has been doing much better at home this time. I requested at home IV care so he isn't dehydrated and passing out this time. As the whole world knows I have my arsenal of non prescribed meds along side of his prescribed anti nausea meds, and Jonathan is doing far better this time. He has actually eating 3 times a day! Not a ton but something is better than before. He still feels horrible, but I measure how he is doing by how he is eating. And so the report would be much better!
Before we checked in on Tuesday, we made a point to have some fun family time just the 4 of us. We went to see Big Hero Six at the movie theater. (Jude snored through the second half) We went to Disney on Ice. (Jax wanted to know when the Ninja Turtles were coming out... He was disappointed) Jonathan and I went on a double date with the Rudy's. My dad helped the boys hang Christmas lights. (I think we listened to Jax sing jingle bells on repeat for 4 hours straight) And overall enjoyed ourselves the best we knew how.
And just as a reminder, 50% is a heck of a lot better than .2%. God answers prayers. And I've said this so many times before Jonathan was even diagnosed. I think he has always been a top 1% type of guy. If you know him, you'll agree. So even though we get down, Jonathan's got this!
Thank you again for keeping us in your prayers.
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