No new news on the health front. I’ve finished my clinical trial chemo drug Palbociclib and will have a scan soon that will tell us how we did. I’m pretty good at growing tumors so this drug really had its work cut out for it. I’m just keeping my fingers crossed that we didn’t end up contracting breast cancer (if that joke doesn’t make sense then you will want to read this post).
It’s hard to articulate how great of a summer this has been. I’ve felt good physically compared to the previous 8 months and it really allowed me to enjoy the time. My treatments have had very little side effects and haven’t been disruptive to my schedule. I didn’t realize the difference it would make to not need a weekly infusion that took up half a day a week. The challenges right now continue to be more emotional and mental.
I hope that the clinical trial has worked but I expect that it hasn’t. The chances going into this were very slim and at best we hoped for the tumor growth to slow. I’ve had a few people ask in a very sensitive and caring way if I still have hope to be healed or if I’m to the point where I’m just trying to enjoy what time I have left. It is a hard question to answer because I think it is that exact issue that creates the emotional and mental battles I’m fighting.
Should I act and feel and live as if I will be healed and thus have decades more time to live? Or should I be making end of life preparations and tying up loose ends I want taken care of for Camilla and my kids once I’m gone?
I guess what I’ve come to understand is that those don’t have to be mutually exclusive, meaning that I can still have hope and faith for a miraculous healing to my cancer while actively preparing for a more imminent departure from this life. One of the first sermons I read after the recurrence in November of 2016 was from Elder David Bednar about the faith to be healed and the faith to not be healed and how the real goal is to not shrink.
That is still the goal here, to not shrink. To me that means that I go through this experience and submit my will to God’s while maintaining my zeal for life. I want to live life to the fullest even if I don’t have the assurance that it is going to work out how I want it to. The irony is that this was exactly the situation I was in prior to being diagnosed and is the same situation we are all in, but I never really understood it like I do now.
And so lately I’ve been doing more things that those around me see as signals that I’m “preparing for death”. In some ways that is true, but in other ways I think I’m just operating under the assumption that I’m already living on borrowed time and it would be irresponsible to not get a few things done while I can. I’ve connected with some amazing people that are helping my organize and digitize all of my journals and files. I’m working on a bigger project to create video for my kids that will be a mix of my life history along with things that I want them to hear from me when they are older in life. To do all of this I’ve cut back even more on work and will continue to scale back in the coming months. My colleagues at TruHearing have been amazingly supportive through this phase and every other phase of the past few years. I can’t say enough about the unique blessing TruHearing has been in my life.
I recently read a book by a man who was grieving the loss of his 57 year old wife to cancer. They had just retired and had all of these amazing plans to live out decades of golden years together and then she found out she had brain cancer and it took her life within 4-5 months.
As I read it I really started to feel this immense gratitude for the time I’ve been given and the time I hope still awaits me. Dying from cancer is not a bad deal compared to other ways you could go. Dying from cancer usually gives you some amount of time to process things and prepare with those you love for your departure. Last summer could have been it for me. And here I sit another summer later and I can’t imagine life without the events of what has happened in the last 12 months. These past 12 months have been so important. Probably the most important of my life. And I have a strong hope that next year at this time I can copy and past this same paragraph into a blog post.
This might sounds like a weird thought or question to have, but I can tell you it is one that I’ve had many times.
Is it okay to cling to this life and to fight with all my remaining strength to stay on this earth? If it feels like its God’s will for me to have any early departure and I accept that, shouldn’t I just die already?
I recently learned about the story of Hezekiah from the Old Testament. It has helped me recalibrate my focus on the faith to be healed because at times I have felt overweighted in the non-healing faith.
2 Kings 20:1-6
1 In those days was Hezekiah sick unto death. And the prophet Isaiah the son of Amoz came to him, and said unto him, Thus saith the Lord, Set thine house in order; for thou shalt die, and not live.
2 Then he turned his face to the wall, and prayed unto the Lord, saying,
3 I beseech thee, O Lord, remember now how I have walked before thee in truth and with a perfect heart, and have done that which is good in thy sight. And Hezekiah wept sore.
4 And it came to pass, afore Isaiah was gone out into the middle court, that the word of the Lord came to him, saying,
5 Turn again, and tell Hezekiah the captain of my people, Thus saith the Lord, the God of David thy father, I have heard thy prayer, I have seen thy tears: behold, I will heal thee: on the third day thou shalt go up unto the house of the Lord.
6 And I will add unto thy days fifteen years;
Another fifteen years would be miraculous and awesome. I wonder how bald I would be as a 48 year old. I’m guessing pretty bald.
Not too long ago I received a Priesthood blessing from one of the Apostles of my Church (we believe in a Priesthood organization that has a prophet and twelve apostles that hold the same office, keys, and responsibilities as the apostles of old like Peter, James, and John — here is a quick read up on that for those of you unfamiliar with the Mormon belief). It was a very special and unique opportunity for me and my family. As the apostle blessed me he didn’t say the words ‘be healed’ or ‘rise and walk’. What he said was that this life was a special gift from God and that it was a worthy desire for me to want to extend my life as long as possible and he blessed me with the strength and hope to do so. He also reminded me of the perfect and complete restoration that takes place in God’s presence after this life and that all will be made right for me and for my family.
I don’t know what is going to happen and I won’t know it until it happens. And so because of this I feel just fine in ‘weeping sore[ly]’ like Hezekiah did at receiving a death sentence. I also feel fine in continuing to pray for a miracle and to beg God to continue to lend me breath like it says in Mosiah 2:21. Maybe I’ll get 15 more years or 15 months or just 15 more weeks. But I know that however long it is I don’t plan on shrinking.
Now to make sure we end the post on a high note, here are some great pictures of the kids from some of our memories we’ve made during the past month.