1 year, 1 month and 8 days after my original diagnosis, I'm back at square one again. This time with even higher stakes.
I'm writing this post with a very heavy heart tonight. I don't feel at all like writing, but I can't get the idea I should write out of my head. So here I am. Also, it's so hard to update all my very sweet dear friends and loved ones when I have a lot to say and I'm feeling every emotion in the whole world at one time. So this post will help me get it all out there.
A couple weeks ago, my entire family was sick. Sawyer had a cold, then a stomach bug, then ear infection. Steven had a small bout of the stomach bug and cold symptoms also. I had a raging sinus infection and also an 8 hr stomach bug. It wasn't a fun week. We had 4 doctor visits between the 3 of us in a week. So, that being said, last week I starting having some pretty bad headaches. I didn't pay much attention, b/c I have been prone to headaches a lot in my adult life, and I also chalked it up to possible leftover sinus pressure/crud from my sinus infection.
However, these headaches were sort of different in that they were across my forehead and across the back of my head. Saturday, I slept until 2 in the afternoon from the pain. I've taken 3 goody powders in this last week, (more than I've ever taken in my whole life I'm sure). Last week, the goodys worked and also ibuprofen helped some.
Monday at work, I was having terrible pain in my forehead, it just hurt so bad, I didn't want to move or talk. The pain was sort a tight gripped feeling, lasting maybe a minute, then subsiding back to the pain level before the little attack. After a few good-natured, light hearted jokes about aneurysms and brain tumors (hey we're nurses after all), I decided, with some pushing from my nurse friends to go to the ED downstairs for a work up.
I was surprised, but they didn't brush me off, or dismiss my symptoms, I guess considering my history. The doc ordered blood and urine workups, gallbladder U/S, Head CT, and then ended with an MRI. The CT was a bit inconclusive from the way the doc explained it, (I didn't actually get to see that report). Doc said it showed some edema in the back of my brain. They ordered the MRI then.
I knew something was up the second the doc walked back in the room. This ain't my first rodeo. He sat down beside Steven, and had such a sad, helpless look on his face. I don't think he could physically say the words to me, he simply handed the report to me. The MRI impression says, and I paraphrase, multiple lesions in cerebral hemispheres and cerebellar hemispheres consistent with metastatic disease. The largest lesion is 3x2 cm, and another lesion is 1x2 cm.
Steven held it together for me really well at that point. I, however, lost my mind. I was so angry!! How could this be happening AGAIN. I remember just saying 'this is just not real, this is not happening right now, it's just not'. They ended up giving me IM ativan. I just couldn't take it, I could not stop sobbing. It was like I ran full force into a brick wall, yet again. I think I can try my best to put my feelings/thoughts into words for you, but I don't know that I could ever fully explain myself. It's nothing you can prepare for. Nothing anyone says will make it better. It is just a dark scary moment, filled with emotions that simply aren't explainable, even though I'm trying.
We left the hospital, faced with the task of telling our friends and family. Having no idea what to tell them other than the MRI results. We debated waiting until after Christmas, to spare everyone the heartache, and just have a good Christmas. But we didn't feel we could hold it in and also both of our families would have been angry had we waited. So we decided to just tell what we knew.
I was prepared a while back for possible bone mets, but I've never researched brain mets. If we learned about them in nursing school, that knowledge has long since evaporated. So, we went to my mama's first. It was just awful. That's all I know. Telling people you love something like this. It was bad the first time around and this time was just the same. Mama called my sisters, a couple of them came over. I didn't have any answers to tell them about what was going to happen, what were treatment options, nothing. We just sat and cried together. It doesn't take a whole lot of knowledge to know brain mets are bad news. Steven called his mom. It was pretty late by then, so I don't think we told anyone else.
I couldn't wait to get home and hug my baby. My sweet, innocent, precious gift from God. Sawyer keeps me together. He is my motivation, my joy, my everything. The absolute thought of having to leave this earth, leave him and Steven behind, it's heartbreaking. And that word does no justice for the gut-wrenching, all consuming sadness, anger, desperation I feel in the pit of my stomach when I let my mind go there. I'm trying to not let my mind go there.
So today I saw my oncologist and radiation oncologist. The plan is for another CT scan in the morning, to help them set up my radiation treatments. I'm to have 'whole brain radiation therapy'. Doctor said should last about 4 weeks. (I know I sent out a mass text today, saying I would have gamma knife radiation for only 2 weeks with 80% chance of effectiveness, however, that was info my oncologist gave me, and the radiation doc had another more aggressive plan in mind, with good reasons she patiently explained to us.)
During this month of WBRT, I will most-likely experience fatigue, partial (or full maybe) hair loss, my scalp with be irritated, I'll have nausea, my ears will be burned and my eyes will be dry. And, most importantly, some of the paperwork says I can't drive (?!?!). I am not happy about that at all and will be asking more questions about this tomorrow. My oncologist would like for me to not work during radiation treatments and apply for short term disability. Then she would like me to apply for SS long term disability. Which I am not happy about either. I love my job, although stressful and sad sometimes. It gives me a purpose, like I'm doing something to somehow serve the community. It's fulfilling, most days :) And I don't know how I feel about just giving that up and walking away. And I love the people I work with and I know it may sound trivial, being that I was just told I have brain mets, but it does make me sad to think I may not see my work friends everyday anymore, and I am so blessed to work with some truly special people. All this work stuff just breaks my heart again. And to hear my doctor telling me I shouldn't work anymore induced another snot-flying mental breakdown tearful episode. I've about reached my quota on those by the way. My doctor thinks I should focus only on my treatments, my healing and my family. I understand what she's saying, I do.
But it's just too many changes at once being hurled at me. I feel helpless and like I'm in control of nothing right now. I don't really even think I have time for a 2nd opinion. I think it's pretty critical to get radiation started right away. This week they will do all the calculations/dosage stuff, make my molds, etc, and I will start radiation the day after Christmas I think they said. I just have to trust their opinions and trust that God put me with these doctors in the beginning and it's still the right place to be. After radiation is complete, they will scan my head again to see how much progress was made and hopefully all the tumors will have shrunk, or went away.
The rest of the plan is for a PET scan and bone scan first week of January to make sure cancer hasn't set up camp elsewhere in my body. If so, chemo will commence once again, I'm assuming with another port being placed. Hopefully the after radiation head scan will be clear and this PET and bones scan will be clear and we'll be good for a while.
I did ask both doctors about prognosis. I couldn't help myself. Neither wanted to give me a definite answer, or rather, couldn't give me a definite answer. My radiation doctor said nothing is imminent. Oncologist said "Textbook" expectancy is one year, but can be longer of course. I have friends who have lived for years after brain mets diagnosis. Not decades, but years. I will be praying for years.
Me and Steven have had conversation the past 24 hours I never, ever thought we would have. Morbid, sad, awful things we've talked about, and we have to. I'm thinking this stuff, and he is too, we have to get it out, so there are no elephants in the room, so to speak. He has also made promises to me that honestly somehow do make things a little better. I knew I married a good man, but these situations have brought out the best in him. He tells me and shows me time and again he is committed to me and Sawyer 100% and that we will never, ever be alone. (He has his faults but the good far far outweighs any bad). I know I pick on him and give him grief, but marrying him was about the smartest thing I've ever done, (besides asking Jesus in my heart). I would like to put out there that he has never let me down in any way that mattered (I won't hold it against him that he doesn't take out the trash when I tell him to). He is my best friend and I love him so much. Steven said a lot of other really genuine, sweet things from his heart today, but I'm going to get in trouble for writing this little bit, so I'll stop. :)
Our plan personally is to focus on getting this treatment started and giving our son a wonderful Christmas. We know my life is in the Lords hands. He has provided for me my whole life, been there from the very moment of conception, and I know he's got me in the palm of his hand, he knows my every need, he understands all the emotions I'm unable to give words to. He understands me. He is the source of my strength and he will carry me through this. I don't know what the outcome is going to be for me. But I have to put all my trust in the Lord.
Please pray with me. I am praying the radiation works like a charm, the tumors disappear, and all scans of my head and body are clean. I want to see my little boy grow up and I want to enjoy life with my husband. My God is the creator of the heavens and earth. And he is still in the healing and miracle business. Please pray.
Thank ya'll for all the texts and calls. I will get back with everybody at some point, I promise. I love you all.
~Elisha
P.S. I post all this stuff not for a pity party and I hope it doesn't come off like that. I post to keep people up to date and I also hope you guys take something away from all this too. Don't take anything for granted, enjoy every moment of every day! We are so blessed! What we think are big things are nothing at all. Just nothing. What matters, I've learned, is family, our babies, friends, laughs, hugs, (good food) and the love we all share and the love of Jesus.
