California Healing

A lot has happened since my last post. I actually wrote this back in February but I am just finally sharing it. I will be updating everyone soon with our 2 month plans for some much needed healing in California! (Thank you Jesus for your complete healing and restoration!!!) I’m awake in the middle of the night with pain so I figured this would give me something to do. Side note: The battle to find the right pain medicine level (and convince your pharmacy you are not a drug addict but in SEVERE pain) has been weighing on me lately. Ironic isn’t it? I’m sure I’ll address more about this another time... but for now... more about Disney to catch us all up.

Alex and I were blessed enough to go away in between chemotherapy rounds. Disney probably seems like an odd choice with a 6 month old and a weak immune system, but it was a trip planned by my parents before I was even diagnosed. If I’m being honest, it was too much for me.

Don’t get me wrong, Disney was an amazing vacation and the warm sun was rejuvenating. But it was also a reminder of what I couldn’tdo. I couldn’t keep up like I used to. There was a lot of shame in that for me... AND frustration... AND anger. I wanted to feel normal again, but after 9 months of pregnancy (which I was super sick during- and now we know why) and 5 months of chemo- I forget what normal feels like. I guess this is my new normal... and that’s still hard for me to accept.

I did pretty well, I have to remind myself even healthy people get exhausted from Disney! It’s a lot. A lot of walking, a lot of stimulation, and a lot of kids... beautiful, innocent, dream-filled, screaming, sugared up, cranky and sticky kids!

There was a lot of joy and excitement for me that week, but there was also a lot of pain... and fear. If you look at my social media you won’t see that. You’ll see all the good moments, and they are real. You’ll see the magic that is Disney. But you won’t see the tears I cried at night because I was in so much pain. You won’t see the fear that I constantly have to talk myself out of because I’m scared the cancer is coming back. You won’t see me leaving the park early because I’m too exhausted to keep going. Or the moment I finally broke down and accepted a wheel chair. You won’t see the moments of nausea, or the fighting with my husband because we’re both just too tired to communicate.

As a person with self admitted FOMO (fear of missing out), it was extra difficult for me to have to leave the park early or skip out on numerous dinners. By the way, I heard the new thing is called JOMO- joy of missing out- i hope i NEVER achieve that status!!! I always want more! More time with my people that I love! While at the park one day I saw a girl who had no hair, so I approached her and said “are you fighting the battle too?”. She looked at me and said “yes! I am here celebrating the end of chemo”. I congratulated her and told her I was half way through chemo myself. She then proceeded to tell me “wow, you are a rock star, I can’t imagine doing this while still in treatment”. That was exactly what I needed to hear (an obvious God moment!). She was right! I am still in the midst of chemotherapy! Why was I was being so hard on myself?!

By the end of the week I couldn’t wait to get home, I was in so much pain and I had sent my oncologist tons of emails freaking out that the cancer was back. I don’t know what was harder, the physical pain or the mental battle.

I came home and resumed treatment.

March 28 was my LAST DAY OF CHEMO!!5 months, 6 rounds and 18 total chemos complete. Thursday was an emotional day and I was so happy to have Charlie there with me to witness such a powerful moment of both vulnerability and strength. I want her to have many more of these.... SHE WILL have many more of these moments with me!! It sounds funny saying that about myself, I’m not one to brag, but if I have learned anything through this journey it is that I am stronger than I ever imagined.

I was elated to be done and to be able to resume life as just a mom!!!! No treatments to get in our way. I began signing up for mommy and me classes and looking into swim lessons. The two weeks after chemo I recovered from side effects, but it was easier to handle because I knew I was done!!! ....or so I thought.

April 11 I went to the city with my dad and Alex to get the cat scan results. To say I was nervous is the understatement of the year. I prayed, I listened to worship music, I paced. Finally the doctor came in and said “there is one spot left that has actually gotten bigger”. DEVASTATION. I’m sure she said some other excellent things like “but everything else looks good and all the other spots are dead”. But everything around me completely stopped and I couldn’t hear what anyone was saying.

All I heard was- this isn’t over, this may never be over. The thoughts were so negative I don’t even want to write them on here because I don’t want to give them any power!!

The radiologist came in and said tomorrow I will come back at 7 am for a planning pet scan (which was awful and painful and not a good time for anyone- especially if you’re Claustrophobic). They fitted me with the tightest mask and snapped it onto the table so I couldn’t move. After 40 mins of laying completely, freezing cold, shivering and half naked on a cold unforgiving table (with the worst back pain ever) I received 4 tattoos. Not exactly what I envisioned for my first tatto experience. But - I reminded myself. “This is ALL WORTH IT to keep me alive for my baby girl.”

And today I am actually GRATEFUL for radiation because I realized some people can’t even get it.

That’s where I finished my last blog. Of course now we know more information. The doctors discovered the cancer was growing back (hence all the ER visits and severe pain) and we have decided to try a place in California for low dose chemo and holistic treatments. It is 5 days a week and will basically be my full time job (along with Charlie’s mama bear).

I have heard so many good things about this place, along with people being healed from severe cancers. Alex and my parents will be there to help me. Thank the Lord for their support. I literally couldn’t do it without them. We have had so many offers from people on the west coast to come help us in anyway- the generosity has been overwhelming in the best way possible.

So I begin this new journey of HEALING on June 3. Tomorrow I get an MRI to check on the spot on the brain they took the gamma knife to, Friday I get a port placed as I will need an IV 5 days a week (port makes it much easier to find- I honestly should have had one long before this) and Saturday- California healing! I 100% feel led by God through this decision. I am so excited for the healing to begin and to start feeling better throughout this so I can just be the best mom I can to Charlie.

I promise I will keep you updated much sooner this time. Here’s to a summer of healing!

All my love. Xoxo 💋

Janelle

(pics below: they brought fluids to me for 4 days after chemo after i ended up in the ER last week from throwing up so much. Among everything going on, if I ever felt good (Even for an hour) I was sure to make the most of it- we planted a garden, went to the park, made it with Charlie to Devon Horse Show, and even had Charlie Christened one Sunday. The pastor now knows me as the quick Baptist and dedication girl haha- I mean we all know when I want something, I make it happen :) And lets be honest... right now that is the best possible trait God has given me!!

Next up: Operation Jesus Heals!!