Real People Stories – Josephine

My Journey Part II

I did cry. I broke the news to them but did my best and held it in till the end to tell them about my CA125 levels test. What will you do? You had HPV for years and didn’t get tested for it. That is what I was asked—and honestly, I wanted to disappear. I go home with my sister and wake up the next day, numb for my wedding.

Post-Wedding Oncologist Visit

I see my HPV oncologist again right after the wedding and sign the paperwork to have chemo done on Dec. 28th.

I am going on my honeymoon, returning before Christmas, taking a CA125 chemo class on the 26th, and shaving my head on the 27th.

The Reality of Chemo

You can take all the mandatory chemo classes you want—it’s shit at preparing you for the reality of chemo.

Chemo fucking sucks.

I had 6 rounds of carboplatin and taxol, with premeds or steroids, Pepcid, and Benadryl. And I will stand by this—the worst part is the premeds.

Adverse Reaction During Chemo

My first IV infusion was awful. My RN didn’t listen to me when I voiced my discomfort after he blew my vein and straight pushed the Benadryl into my IV line. The Benadryl burns are going in. I was having a panic attack; I couldn’t speak because my tongue was numb, I had crazy rapid eye movement, my head was hurting, I couldn’t see properly, and twitching like crazy. The drowsiness didn’t hit until a whole hour later. The taxol burns to go in, but the carbo beats the shit out of you. I refused to return to that CA125 centre for testing and treatment and went to one closer to my home for the rest.

Recovery Challenges

CA125 level recovery also sucked. On day 1 after my infusion, I felt fine, but day 2 was awful, with a ton of pain all over, mostly in my chest and back, no sleep, body sweats, and mild delusions. Day 3 was more of the same, with the addition of flushing and body pain all over, to the point that you touched me. It was so painful. Day 4 was the same; however, my smart watch went off, and my resting heart rate was 134.

Of course, this freaked me out, and I immediately called the test hotline the HPV patients were given for emergencies and was told to come in and get checked out. Which I did, and everything came back normal. I was told this happens often and to try to navigate it. The drive home was beautiful as it was New Year’s Eve, and fireworks were going off. Now, I’m on Reddit looking for answers and seeing someone recommend a chemo journal to document daily.

Do it. It’ll save you sanity with each infusion and be something you can discuss with your care team.

Seeking Therapy

After that visit, I was recommended for CA125 blood therapy because another thing you learn is that chemo makes you develop depression and anxiety. This isn’t a statement; it’s a fact, and some people are better at navigating this than others.

Be fully hydrated up to 2 days before and during chemo; it’ll make the HPV learning process easier on your body. If you can handle it, have a meal before and snacks during.

Adjustments to Chemo Routine

My infusions from here on out are the same as before. I told my CA125 care team about the Benadryl issue, and they told me it’s not good to do Benadryl first because the steroids and Benadryl do not mix well and instead do the steroid first. The Benadryl after the Pepcid, and have the Benadryl mixed with IV fluids to be in a bag and drip in.

Please—if you react similarly to Benadryl as I did, I implore you to request this. And if by your 3rd chemo, you do not react to the taxol, request half the Benadryl dose. DO NOT TORTURE YOURSELF. It is too late to worry about HPV now.

Chemotherapy is cumulative, and each time I’m weaker, my spirit is strong. I make daily goals for myself, review my journal often, and get out and do things with friends or family on good days.

Final Chemo Infusion

I’m over the moon. Yesterday, April 23, 2024, was my final CA125-related chemo infusion. I have my usual anxiety before the visit and cry fest in the parking lot, wishing not to do it, but I wipe my tears and go in. But I have my usual premed routine and make anti- HPV plans that ring the bell when I’m done. I make it to Carbo, and about halfway through, my body reacts. The IV site is tingling and burning, my hands are sweating, and I’m suddenly having chest pains and palpitations.

I check my watch, and my heart rate is at 161 bpm. I asked my friend to pull the emergency cord, and the CA125 team ran in to stop the carbo and start administering a steroid, IV, and get the oxygen tank ready for me, just in case. A cardiac team rolls in, hooking me up, and the RN assigned to me is on the phone with my HPV oncologist. He orders them to cease treatment and let it end there. It takes about 45 min for me to stabilise, and I’m between shaking, crying, and wanting to puke.

They told me everything would be okay and that at round 6, this is expected. Not everyone who experiences what I did reacts to pulling the cord fast enough and, most times, having to push to stabilise a CA125 tumour patient, hooking them up to all sorts of things. As they said, “Your body knows when enough is enough.”

Relief and Looking Forward

After I calm down and feel safe enough to leave, I ring the bell and cry that it’s finally over. My HPV journey is far from complete, but this big boss battle is, and I’m happy it will be done. I still have my CT to do in three weeks, and I will face it soon. This is my CA125 cancer story for now, and I won’t give up on my life.