What Quality of Life Looks Like!

I’m starting to get emails and texts again asking how things are going for Jonathan.  It is so nice to know people are thinking of us and praying for us constantly.  So I will give you all a quick update.

Jonathan started his trial drug on October 21^st.  Unlike our usual treatments we were able to go to our doctor’s office instead of the hospital.  They drew blood and then we met with Dr. Raj to review the side effects one more time.  He handed us 4 pages of possible side effects Jonathan could experience.  Most of these side effects looked similar to chemotherapy actually.  Nausea, diarrhea, losing liver function, losing function of his pituitary gland, loss of eye site, pain and redness at the tumor site, and on and on and on.  We know they have to list every single side effect ever experienced, but know through extensive research that most people handle this drug very well.  It is actually completely the opposite of chemo therapy!

The doctor told us that stopping chemo could cause it to be less effective if we were to go back to it at a later date and reminded us that he thinks we should keep trying chemo until it becomes ineffective.  We told him we understand what we are doing and let’s proceed with the trial drug. 

To be honest, it is so much easier coming to a logical plan of choosing quality of life, rather than actually doing it.  Before going to this doctor’s appointment, I was having a hard time.  I often am trying so hard to enjoy my minutes and helping my children enjoy their minutes that I don’t take time to tell people how incredibly hard this actually is.  We have a family friend that cleans our house each week.  She told me the only way she knows how I’m really doing is by how many tissues she is picking up from the bedside each week.  There were a lot of tissues last week.  The thought of actually changing our course of action to “quality of life” was really hard on me.  I let myself go down that road of when these fun bucket list trips with Jonathan stop.  We met with our financial advisor to look at what my financial situation will look like when I don’t have my husband.  I take one of my children to play therapy once a week preparing a relationship for them to have someone to talk to when they lose their daddy.  I’ve compiled a list of conversations I’m terrified to have with my boys because I’m their mom and it needs to come from their dad.  Jonathan is working on now writing them letters for me to give them each year.  I am praying every day that this trial is our miracle.  But we are living our reality that it probably won’t be.  We are doing a great job of enjoying ourselves and doing everything we want to do together.  We will have no regrets!  And we honestly aren’t crying every day and are successfully enjoying each day.  But we still allow ourselves bad days too.  The night before he started the trial was a bad night…

(What Quality Life Looks Like... And Jonathan was not in the hospital and got to see all of it!)

Went to a Cougar Game

 

 Halloween

Making Sugar Cookies (OR playing in flour)

 

After we were finished with the doctor we headed out to the nice room with recliner chairs and big windows.  The nurses told us Jonathan’s white blood cell counts were still actually kind of low but since this isn’t going to effect that, onward and upward.  It took 30 minutes and he was done.  He said he felt totally fine.  He even drove home.  Later that afternoon his face got a bit flush and he decided he wanted to take a nap.  He got up, did the dishes, played with the kids, ate dinner normally and seemed totally fine.  The next day he said he felt totally normal!  No side effects.  Now that is has been over a week, he has started getting some pain in his hip.  It is hard to tell if it is the tumor growing or the immune therapy killing the tumor.  I sure hope the latter. 

 

Jonathan has been golfing 3 times since last Wednesday and is doing great overall.  He is back to pre- cancer weight and looks good!  He has started coming to the gym with me again in the morning and has been able to do a cardio machine for 25 minutes before he moves on to the weights.  His pulse rate is doing much better and is getting lower than it has been in 18 months now. 

We have been very busy with Cancer Can’t stuff again.  We’ve been working on thank you emails/cards.  I’ve been gathering samples for my meeting with the hospital and are getting excited to see that start to come together.  We are working on our charitable pharmacy project and have been meeting with new board members, law makers, attorneys and physicians.  We feel good that we are able to spend our time working to help other cancer patients.  I guess it feels good to have a purpose.  We are also very honored that Cancer Can’t was selected to be the recipient for the SamScramble funds this year.  If you can, on New Years day, please go participate with your family in such a fun and meaningful event.  Go to: https://sites.google.com/site/samscramble/home  to register.

Please be praying that this trial is working, and is actually effectively shrinking Jonathan’s tumors.  Or even just stopping its growth.  I know God is giving us so much strength that we are able to enjoy each day.  I pray all the time for this type of strength.  Please also pray that Jonathan has little to no symptoms as we continue on this trial.  So far so good!