jailormoon21

[jailormoon21]

I never walk alone

Why does God keep making us lonely Even if we’re covered in bruises, we can smile if we’re together

At the end of this road that I walk alone, whatever is there, I’ll set my foot on it

Though I get tired and hurt sometimes it’s okay because I’m next to you Because, you and I, if we’re together, we can smile

Although I want to fly, I don’t have wings But your hands become my wings All the dark and lonely things, I will try to forget those with you

These wings, although they came out of pain, are wings towards the light

Even if it’s tiring and hurting if I can fly away, I’ll fly

So that I won’t be afraid anymore, would you hold my hand Because, you and I, if we’re together, we can smile

Even if it is the path I chose, and everything is a fate that I created

Even if it is a sin that I committed, and this whole life is only about paying for my sin Walk with me Fly with me so that our hands can reach the end of the sky

Even if it hurts like this Because, you and I, if we’re together we can smile I never walk alone From your hand that I’m holding, I can feel your warmth

You never walk alone Feel me, you are not alone either

[jailormoon21]

I get my blood tested every two weeks. One is to check regular things like white blood cell count and hemoglobin, platelets etc. Then I have CEA checked which is tumor markers, and every month a signatera which is similar to CEA but finds CTDNA which is more precise of a measurement and more accurate when tumor markers are really low.

So after surgery and a month of chemo delays, my CEA and CTDNA spiked. CEA numbers went from 1, to 3, to 4 (4 is outside of normal range). CtDNA went down slightly, which was good news but shadowed by the other test result which was disconcerting. I was panicked inside every day and trying not to talk too much about it or worry, but waiting and watching is so scary.

My onco was also concerned, she ordered a second signatera test within a month. If signatera showed positive and climbing, I would've had to stop chemo, wait and get scanned, then go to radiation and then possibly back on chemo. I'm so glad the chemo is working again and hopefully my tests will STAY NEGATIVE!!!!

In other news, my big headed baby boy is graduating from both TJ and Green River this month. I'm so proud of him.

[jailormoon21]

Say no to drugs

so my body decided yesterday that it's allergic to one of my chemo drugs, and I got extremely itchy and broke out in a rash. The nurse stopped the infusion completely, gave me three different antihistamines in my port line, and slowly restarted the chemo.

I asked her if I was going to be able to continue and she said only if my symptoms go away. Yikes! I waited about 30 minutes and the itching and rash did go down thank goodness.

Just another rollercoaster moment!

[jailormoon21]

Clear Margins

My latest PET scan results show that my surgery was successful on paper; the surgery really did clear out all the cancer in my abdomen. There is no new cancer in my abdominal area even after being off chemo for three months!!! The "activity " on the pet scan was the solution that "lights up" was attaching to my healing tissue (scar tissue). And the oncologist PA said she agrees with me that the tiny nodules in my lungs are probably not cancer (this is the third time it's changed status).

This means I have no traceable cancer through PET scan. I'll have another colonoscopy in a few months where the doctor will look at the healing progress of the surgical sites up close with a camera.

I am continuing the full strength chemo for another five rounds, two months. Then as of now, two years of immunotherapy and pet scan every three months.

I just started round five Monday; so far, my side effects feel like the first chemo i got back in November. Just sensitivity to cold which has already mostly gone away, and a strong response to the steroids (they made me really hyper).

I look forward to remission in the future!!!

[jailormoon21]

the 25th

Today marks the three month mark since I went off chemo, and the two month mark after surgery.

I went in to resume chemo on April 14th, but my port decided not to work that day. Apparently it's very common. They flushed it with two doses of port draino and I waited around for over two hours.

Next, I went for a follow-up ultrasound to see why the port wasn't working. The second they accessed it at the hospital, it worked. Reconvening chemo this Monday, the 28th.

After several months off of chemo, my CEA rose from 1.4 to 2.9 which is still within normal range but still the first time it's ever gone up. I guess it's to be expected when my PET scan came back with new activity in my peritoneal lymph nodes. I think this means that surgery didn't quite find every last cell. That's why Dr. M is going in full blast.

No other changes in my lungs or liver! That's really good news 😄

I've been eating healthy and doing pilates almost daily. I went to a concert with my babies. Trying to enjoy life and not worry so much but just trust the process.

[jailormoon21]

Celebrity surgery #2

Welcome back, me! It's been a while. I just got tired of posting the same update every two weeks!

So I stopped chemo on January 27th, and prepared for surgery the following month, February 25th. I was terrified to go off chemo with active cancer still in my body! But it was necessary for surgery.

As expected, Dr Bestie came thru with a great surgery and left me with a giant hole in my stomach! (Don't worry, it has since healed!) They removed the rest of the tumor, some amount of lymph nodes, and reversed my ostomy. The assistant surgeon said things like "clean margins" and I'm told that was good news. I was pretty hopped up on pain meds so I didn't retain much!

Three weeks after surgery I got a signatera negative (4th one in a row) and a normal range CEA of 1.6 which means no traceable cancer. Dr M says yes, that's true but I likely still have some creepers in dark corners.

Four weeks after surgery I got food poisoning, which was painful and terrifying because I thought my pipes were scarred, blocked and/or just malfunctioning in some way. However, all is well again. It was certainly terrifying, thinking that if anything goes wrong with my pipes, I could possibly end up with another operation and a permanent colostomy.

Great news came again today when I found out that Dr M is not reducing my chemo for the clean up rounds, she wants to knock it out like Mike Tyson just like me. So that's good! Not so much for finances because I won't be able to work thru five rounds of folfox chemo, it's going to make me really, really sick but it's a price worth paying to increase the chances that this doesn't come back!

Once again, I love my care team and how in sync they are with my treatment and needs. I'm really sick of being sick all the time, but come summer I'll feel better.

Sorry for the pause! Love you all ❤️

[jailormoon21]

Better than I ever expected

Today I managed to go into work and see my coworkers and bosses. I got a lot of hugs and well wishes. So many of them were wearing their blue pins it was so cute! :)

A few months ago I was irritated that I couldn't see my scans and results from any of my oncology tests such as PET or CT. I only get access to my blood work. And rarely I get to peek at scans unless Dr M is tilting her screen to show me something specific. But, looking back, I think it is all meant to be. I can't handle seeing every detail of my scans and minute medical details. I hyper focus on them too much and it derails my positive outlook. I went back to look at my first scan from pre-diagnosis era (on a different app that actually shows me the detailed results) and it says I have a tumor on my ovary! Nobody has ever talked to me about that, so I'm assuming that it's normal, I don't know? Fight one battle at a time? I guess....

I got a ton of good news today, and as per usual, it was combined with some pretty devastating bad news. #rollercoaster

So the good news is finally here! My surgery is happening at the end of the month. I get to go completely off chemo until the end of March. After surgery and recovery, I'll continue to have five rounds of chemo through the end of May.

The bad news is that the spots on my lungs (I didn't ask how many) are/were cancer. The chemo has reduced them to only two or three teeny tiny spots, and Dr. M said that they can only radiate if there are a few small spots, and she's also confident that the rest of the chemo will get rid of the spots that are left. Which means that radiation is only a last resort if chemo doesn't clear up what is there.

I'm a little pissed because I was told there were no changes in the spots which made me think that at worst, they were pre-cancerous. Now suddenly I'm hearing that they were cancer. I was also told that I only had to go off of avastin to get surgery but Dr. M is saying all chemo. Which makes sense. But I embarrassed myself over emails with agent Smith due to the confusion.

I'm excited, and scared as heck, to go off of chemo. Will my cancer return to my liver or get worse in my lungs? Excited because no more headaches, body aches, mouth sores, bloody nose, foggy brain, pain in my eye sockets when I cry, nausea, needles in my hands! YEAH! Running to the store immediately to get some liquid vitamins!

I feel like I'm running a race and I'm at that part right before you get your second wind, and wonder if you're going to make it to the end. I'm parched, I'm tired, my muscles hurt, and I just want a break. Because it's stage four, will I ever truly be cancer free, especially since it's spread so far into my body? Maybe not. But maybe I will! We shall see.

Dr. M made sure to remind me that I've had a 100% positive response to chemo, that my results were far better than she ever expected; and that I'm kicking ass. She seemed genuinely happy and excited for me. And those words I will play on repeat until the end of the race.

[jailormoon21]

Something I've been thinking about today:

Friends and family that call me or send texts to remind me that I'm amazing, or that I'm a fighter. Friends like Martie, who went to visit my dad in the hospital on the days or weeks I wasn't feeling well. My mom who makes it up to see me after a long work week. My mother in law who drives me to chemo on days when everyone is going in ten different directions. My kids taking care of the dishes, sweeping, caring for the dogs and whatever else I can't manage to do. My friend Richard, my cancer buddy Evi. My surgery buddy Shannon.

My ultimate gratitude for Dr. M, Dr. Pratt, Dr. Bestie and agent Smith, Dr. Susan, Deanna (such a dear!!!) nurse David, my chemo nurses Michelle and Oakley, my case manager Sarah, Dr. Sherpa, Dr. Greenberg, Dr. Alvarez, and the new liver surgeon I have yet to meet.. all these people are taking care of me.

I don't know if there is a word to describe how I feel. Grateful and thankful are too puny.

[jailormoon21]

Warrior, Fighter, Survivor

I will survive! I just know it in my heart. Three months ago if you told me I had stage 4 colon cancer I would have googled the prognosis and cried for days on end. But now I've learned so much. Prognosis for any type of cancer data only goes up to 2021. Colon cancer is also lumped into a large group. What the survival rates don't say is that left side colon cancer is much easier to overcome than right side colon cancer because it's not genetic. I'm fully convinced that because of my response to the chemo and my blood tests that haven't gone crazy at all, I'm on the younger side for this cancer and I'm healthy otherwise, that my body is going to handle this and kick it to the curb.

The MET (spot) on my liver (just one) was cancerous, and it is now gone (resolved is the term they use). 13 of my cancerous lymph nodes around my sigmoid are resolved down to three that are still semi-cancerous and they are going to remove 20 total apparently, during the surgery, which was not scheduled.

Unfortunately, the tumor board did not get to see my case Tuesday, but Dr. Pratt (Dr. M's PA) put a word in and they may modify my round seven chemo so I can still retain the four-week countdown from January 15th.

I will continue to have 12 rounds of chemo and immunotherapy after that for minimum of probably 24 months. Since I had minimal side effects with the addition of magnesium to my chemo last round, I am hoping that as soon as the weather clears up and after I complete my surgery recovery I can go back to work!

I'm still not making any plans for the future...not yet. I don't want to jinx anything. I'm like, 97% cancer-free, the surgery will clean up the remaining 2.98%, and the chemo the rest! That's the best I can hope for! I even got an actual "negative" test for the first time this week. It was very encouraging!

[jailormoon21]

No whining, no complaining, no excuses!

Pete Carroll's motto! So inspiring. My tumor has shrunk down to almost nothing! I'm still receiving the same heavy dose, so the chemo is just loitering around with barely any cancer to snack on. The result is painful headaches nearly 24/7. That along with other side effects that are compounding, but not so much that they are debilitating.

Okay that's enough whining! Other than that things are going great. I'm hoping my pet scan gets approved by insurance by Wednesday so I can get it this week, which would mean I could get approved by the tumor board to get surgery before chemo round seven. That means surgery in mid-February and my last dose of chemo could be as early as mid-May!

The pet scan will also determine how long I will have to continue immunotherapy after chemo is over. Please, pray, cross your fingers, light a candle, etc.... For these things? Thank you dearly for all the continued prayers and love and support 💗

I always upload the same type of pics so here's my friend Richard and me, he survived brain cancer and was in a coma for five months and he's been cancer free for five years! He inspires me with his enthusiasm despite all the challenges he's been through 💗

[jailormoon21]

Round 5! Fighting!!!

My mom came with me today 😁

This is my CEA now. It only needs to be in the 50s to operate.

Happy New Year to everyone. I hope that 2025 is your year for amazing things. Whether that be new changes or blessings or just things. I just hope whatever you've thought of comes to fruition in your life.

[jailormoon21]

Kicking Ass and taking names

On Christmas morning I received an automated text from the third party company that tests my blood once a month for tumor markers (similar to the CEA I posted about last time). The signatera test is apparently more accurate in detecting relapse after cancer treatment is over, but you still get tested from the beginning of diagnosis.

Anyway, my signatera number dropped from 133 in October to 100 in November, to ZERO in December. Basically my tumor has shrunk so much that it's not detectable in my bloodstream anymore. I was hesitant to celebrate because my honest reaction? Ic was scared they accidentally got my test mixed up with someone else! But I met with Dr M today and she confirmed that yes the test reads zero for real (that means NED) and several times told me that I was "kicking ass". I heard her for the first time commit to surgery in February as long as some board approves it. I've never heard her comment on anything even slightly having to do with future or predictions. :)

Heading to round 5 tomorrow! Round 6 on the 16th! then PET scan! then surgery! I'm manifesting it all!! Woot

NED means "no evidence of disease"

[jailormoon21]

The incredibly shrinking tumor

My blood tests came back today, and my CEA level was tested for the second time. The first test was Oct 15 before my first round. All of my blood tests are in normal range, like red and white blood cells, platelets etc. All except for CEA.

CEA - carcinoembryonic antigen - is sometimes called a tumor marker or tumor antigen. Tumor markers are substances that some cancer cells make and shed into bodily fluids at times. Healthy cells also may make tumor markers in very low levels. Many healthy people have “normal” level of tumor markers, which is called normal range.

My CEA dropped almost 200 points since before chemo!

This is such good news! I can almost hear the doctors saying they'll do surgery in February instead of waiting until May!! I won't be disappointed if they do decide to wait until May as well. But I'm so optimistic! The treatment is working 💙💪🏻

[jailormoon21]

ROUND THREE: FIGHT!

I just finished 24 hours post infusion round three with very little side effects. Each round I learn some new information and tidbits to help cope. Things like not looking at my phone screen while driving (passenger) to help with nausea (it worked). Not eating breakfast before infusion also helped. Finally I omitted the heating blanket on my legs during infusion and chose to freeze while I have ice packs on, to tone down the neuropathy. It worked really well on my hands and feet but jurys out on my legs, they're quite tingly but not painful and I can still walk normally.

I'm focused on staying hydrated and resting. One strange occurrence is I can feel my tumor during and right after the treatment, as if the tumor itself gets cold. I told dr. M and she has never heard of that. I know it's not my imagination because my natera (blood test that measures cancer level) numbers went from 133 pre-chemo to 100 after one treatment. So I think the chemo is really affecting/shrinking the tumor. One of my other symptoms which is too TMI to put on the Internet has also ceased and I'm really happy about that!

Thank you everyone for reaching out, for thinking of me, for prayers and support in so many ways I am so happy and grateful for my team of friends and family 💙 I love you all! (Second photo: my boss gave everyone at work blue cancer pins to wear in support of me!?!? Wow, so cool!!!)

[jailormoon21]

Chemo Round 2

Chemo round two is over! The symptoms did get a little worse this time. The nausea was pretty severe and seems to be in the form of car/motion sickness, so being a passenger in the car on the way home had me hurking for about five hours!

I also had neuropathy all the way up to my thighs which I think was brought on by the use of my heating blanket. Next round I'm going to ice and just freeze and suffer, and hopefully that will help. I got some large ice mats for my legs.

I had my hair extensions taken out yesterday, to prepare for the excessive thinning that will happen during treatment, and thanks to Eleanor for coming with me and holding my hand. I also got the most amazing gift basket from Ben's 09 team parents. 💜

One of Gwen's best friends knitted me the most gorgeous hat I've ever owned. It matches the amazing blanket jacket I got in the gift basket! Thanks so much Elliette and the 09s 💜

Aunt Patty gifted me Grandma's cross necklace, which i have to get repaired but I'm so blessed to have it!

I'm four days out and feeling mostly back to normal, I'm going to spare everyone the details with my colostomy this time 😂

[jailormoon21]

Wellness

Today I met another doctor. Dr. Susan, who is my wellness coach. She - yes, another beautiful, intelligent woman on my care team - is here to help me cope with symptoms, make sure that I am supported and have all the resources I need. She started off by letting me know that she was a palliative care doctor, but not to be scared because that doesn't mean I'm terminal or anything. It's just a practice of medicine that helps patients deal with serious illness. Little did she know that I had enrolled in college about a month before my diagnosis, and that I had decided I wanted to be a palliative care nurse! Of course, those plans, as well as all the other cool plans I had brewing in my future, are on hold, which is really sad.

Dr. Susan also asked about my support system and I was so proud and happy to report that I have an amazing one. Ben and the kids have been so supportive, as well as my mom and all my precious friends who love me so much. Dr. Susan said that if she had cancer, she would pick Dr. M as her doctor because of how amazing she is - and I teared up, because how many times am I going to get that affirmation? That I am in the best hands? I love it so much!

I am SO grateful that I have already been on this precious walk of healing for about three years now~! I made some huge life changes back in 2021 at the end of covid. I cut the cord on the things in my life that weren't serving me and were stressing me. I got off social media, and started forging and maintaining genuine relationships. I started taking better care of myself physically and emotionally. I spent so many years of my life serving and loving others with no regard to my own mental, physical health - which by the way, I don't regret. But, I got lost.

So now that I am sick, I feel like I've already started climbing that mountain of wellness. I'm not starting at the bottom, overwhelmed, wondering how I'm going to make it. I'm in good hands!

[jailormoon21]

Great News

PET scan results came back and there is no cancer in my lungs, and the spot on my liver is benign/inconclusive. Yay!!!