Sunday, January 8, 2017

where to go from here

"the beginning is perhaps more difficult than anything else,
but take heart, it will all turn out alright"
(vincent van gogh)

let's hope vincent knew what he was talking about.

wednesday was rough. i posted this picture on my instagram account and said "there are days in the fight with cancer that you don't get the worst news, but you don't get the news you so desperately wanted to hear. and you put down your boxing gloves and give yourself the time to be really sad. today is one of those days."

and i definitely felt like i needed to put those gloves down.

as i said in the post on wednesday, i am so thankful that the tumors have not grown and that there were no new tumors. that is definitely something to be super, super thankful for and i am.

but it was hard to hear that the tumors have not shrunk, if the treatment was going to shrink the tumors, we would have seen that happen by now. so what does that tell us? what is tells us is that the drug at best will maintain the tumors. as i noted in the previous post, my oncologist has had some patients on the drug that saw their tumors maintained for time lasting up to two to four years.

i do not normally like to talk about time unless i really need to know, and on wednesday, i wanted to make sure that i understood what my options were if doubling down on treatment didn't work for me.

there aren't other drugs that will work, i may be able to qualify for some clinical trials, but there is not another silver bullet.

so, by introducing the second drug (at a lower dose) back in, we are hoping (beyond hope) that my liver will not start to fail on me again and i can get multiple treatments in with the two drugs. the worst case scenario here is that my liver fails and i have to go off treatment and start steroids again, and then once i can, return to the drug i have been on and hope and pray the tumors don't grow. the best scenario here is that my liver works like a champ and i can stay on the treatment and the tumors shrink.

i am sure that you can guess which option i am rooting for.

it felt like it took everything i had to get through work on thursday and friday. i just wanted to be home. thursday afternoon i got really nauseas and felt crappy all night. friday the nausea was low grade but tolerable throughout the day. this weekend has been a little better with some smaller waves of nausea here and there. the other symptoms (dry mouth, dry skin, joint aches/pains) continue and the fatigue continues to mount. that isn't a surprise. i think that i could sleep 24/7 but there is too much life to live to do that.

if all goes according to plan, i will go four rounds of this double treatment plan and then we will do scans again. because i am on two drugs, we will do treatment every three weeks instead of every two weeks. i will do bloodwork on the 17th to make sure that my liver is holding its own. if we know at that point it isn't going well, i will go on steroids right away (and curl up in a ball for probably a good amount of time out of total devastation).

also on wednesday,  my friend beth was at scca for some further tests to see what the spots on her lungs may be (they are too small to biopsy). i will let beth tell you in her own words how wednesday was for her.

"Sorry it took my while to get this out, this is the first moment I have had to just sit.
The appointment did not go like I Had hoped.   I did the lung capacity test first and it showed some slight obstruction, meaning not breathing 100%.  But the test is weird.  It was quick too, if she had more time she said she would have given me an inhaler and tried it again. The cold weather could have been an issue today for me as well and of course I was running late!   Coming from a new home out of my routine throws me off a bit.  The test giver wasn't overly concerned with the results and no one asked me to take it again.
Then I met with the doctors.  They were a half hour late, a fellow showed up first and he was very scientific.  But said it was still inconclusive and all the other tests they could do right now they don't recommend because they would be invasive and probably not give us any good results.

Then I waited some more and the doctor came in.  It was a quick chat.  I said a summary of what me and the fellow talked about, except she said in her opinion it was metastatic cancer and not something fungal because I am low risk for that.  Well that is exactly what I didn't want to hear.  I know it is still her opinion and nothing can be truly concluded until they biopsy.  But still.  I think I would still rather have some weird infection or fungus than cancer.   There are other things it could be, but her opinion was that.  I asked some other questions which she didn't know how to answer so at that point I knew I would follow up with my oncologist.

I spoke briefly with my oncologist and he and I are meeting Friday morning.  One of the things I am confused about is how can it be cancer if the cancer wasn't in my lymph nodes and I was on chemo.  But it sounds like there are cells that "get away" from chemo.  But we will talk more and I will get my questions asked.
I am struggling with this because I didn't think this was to be my story.  I thought I did my year of cancer (even though it doesn't really get just a year of your life, the scars last forever).  But this know has me more spooked because it is sounding like this being cancer is much more a possibility. And I do not want to go through treatment again.   I do now want to get sick again.
I chose my word of the year a couple weeks ago.  to "be present" in the now because I cannot control the future.  So I need to work very hard to just enjoy the now.  I still feel fine, and scans likely won't happen until March.  The doctors today said I could still keep with the 6 months but will probably keep to 3 with the new recommendations.  So with how it's slow growing probably not much will change in the next 2 months.   But the word of the year will be hard for me. 
And I hope my oncologist can help me sort some things out this week.
I did go see Alli in infusion after my appointments.   Her news was not what we wanted.  The tumors have not grown, but they have not shrunk and that is disappointing.  Here are her words:

here are the results in a nutshell ---

the tumors have stayed essentially the same so i am going on the second drug starting today.

i will do bloodwork on the 17th to see if my liver is maintaining the drugs. if it is, i have my next treatment on the 23rd. if not, i go on steroids and all treatment stops.

once my liver rebounds, i would go back on the treatment i have been on which for some patients has maintained tumors for 2-4 years.

so i am thankful that the tumors have not grown, that is definitely good news.

i would be lying to say that i am not disappointed this treatment hasn't shrunk the tumors, and i am not looking forward to going on the second drug.

but that is where we are so that is what i will do.

thanks for all the love and good thoughts and mojo.

anywhere i fight, you fight.

and we definitely have more fighting to do.

I am not going to lie, we sat on that bed in her infusion room and cried for disappointment, and agreed to how much we hate this disease.    So please pray extra hard for her liver to take this drug because we all need some encouragement right now.
So those are my quick thoughts as I still process what I heard today and there will be more to come. 
Thank you for continuing to read my jornal and your ongoing love, support and prayers."

on friday, beth had an appointment with her oncologist to talk more about the information from wednesday and what he thoughts next steps would be. i went with beth to that doctor's appointment, and it was another appointment filled with tears and words we don't want to hear. here are her words about friday...

"Alli very graciously came with me today to my appointment and I am so thankful she did.   She is a good rock for me even in the midst of everything she is going through.  And I know either of us would be any place we needed to be for each other.  

And I now know why my oncologist wanted me there is person, because he didn't want me crying on the phone.  
First he says they don't know what it is.  They have no way of knowing what it is until they biopsy.   And he wouldn't guess.  It does look like metastatic rectal cancer but it also looks like a fungal infection.  
But if it is metastatic colorectal cancer it isn't curable.   They can give me chemo to maintain it but they never can kill it off.  It keeps coming back.  So that is the news that sent me crying.  I didn't see that coming.  I assumed I would just fight it again.  But really I would never get off chemo.   They could maybe do other treatments but same thing, it wouldn't help.   So that was quite shocking for me.   And he knew it would be.   

He answered my questions.  I told him I was angry and he gets that.    I still don't understand how it could be in two places and never in my lymph nodes if it is cancer.  But my oncologist really wants me to not go there yet. Because we don't know.  And the 3 of us in the room want it to be anything else but cancer.  As I know you all do as well.  

So he wants to be to keep living and doing the best I can to know this is out there but not consume me.  So i have to try really heard to be present and keep praying it is anything else but cancer.   My oncologist was really good with me today.  

I agreed to be in a clinical research project after my appointment on Wednesday.  It won't help me. But I want them to keep advancing research and diagnosis and treatments to help others.  They once again posted labs to my online chart and there was this odd comment about budding yeast seen in sample.  So my oncologist is chasing that down to see if it means anything. 

If I find out anything new I will let you all know.  Otherwise it is scans in march and then see where we are at.  I am super tired from the week. So I have decided to take my cancerversary off. No volunteering and just taking time for myself.  

So I have to hope I keep feeling good for the next few months so I can just keep living. 

So thank you for your love,  support and prayers for me.  For Alli. And for all those others with cancer that you know."

so as we sat in tears on wednesday and on friday at scca, there were many times that i wondered how in the hell we both ended up there as patients. but it is the reality and so we try our best to put one foot in front of the other. but it is really shitty, there is no doubt about that. and unfair, so damn unfair (not that cancer is fair to anyone).

so here we are, another week begins. i hope that you all had a great weekend, and played in the snow if you got some.

i hope your mondays are good ones.

thanks for all of the love, it is so appreciated. xoxo


  1. All the love and light and prayers to you. I sat over here in my corner of the world and cried with you this week. Hoping this week brings laughter and fun. Sending all the mojo to that liver of yours!

  2. Holding you and Beth in my heart... 💜