Today I declared war!
War on this nasty disease that has consumed way too much of my life already and it’s just the beginning. I woke up today deciding this is it — I’ll never get another day 1 and I’m going to knock its socks off. I got up early (who am I kidding, that was because of the baby — not pure motivation), got hyped up with little pep talk to myself, and downed my first dose of oral chemo. I walked over to my bed and sat in front of the news to wait a minute. Hmm, do I feel different yet? …Nope! Wellll, ok then — that was anticlimactic…better get to work. As I was getting ready for work and hyper focusing on what my body was feeling like — a large feeling of relief came over me. First, it’s begun — the treatment has FINALLY begun. I have known about my diagnosis for 28 days now, and it’s seemed like an eternity. The nurse in me knows every single step we’ve already taken is important but it doesn’t make those waiting days go by any faster! BUT, it’s here! It’s really here and I’m oddly so excited. I feel like we’re finally DOING something rather than talk talk talk — so much talk. And so much waiting… all while it just sits in there taking up residency. But no more — like I said… WAR. The other reason I felt so much relief is I’ve been nervous about having some sort of allergic reaction or something to the medication. I know it would be rare — but you know how I like to do rare things (eye roll). So thankfully — no surprises this morning with the first dose! That’s actually another favorite new saying of mine “no surprises… no surprises… no surprises.” I kind of like to repeat it like a meditation or something. I’ve processed my diagnosis but I’m not ready for extra surprises, I still feel too fragile. I know setbacks or little curveballs may pop up along the way — but like I said, not yet… not ready.
The first time I prayed and focused on “no surprises” was during my PET scan last week. I thought I was done with scans, but the radiation oncologist (Dr. Shen) wanted to add a PET scan on. Not because he didn’t trust the results of the CT and MRI — but because he just wanted to make sure no other areas in my pelvis (or even higher) are lighting up at all. If we know that in the beginning, then he can target those areas with the radiation too. He said it’s not standard — just another view to make sure… I don’t mind being special so we did it. I was pretty nervous it would pick up on some areas the other scans didn’t (enter “no surprises… no surprises”) — but it didn’t! Thankfully the PET scan didn’t show any other areas of enhancement at all (other than the tumor). It did still see the enlarged lymph nodes that were noted on the CT and MRI — but it stated that they showed “minimal metabolic activity”. Nice, huh!? I was happy do show them a boring picture!
Anyways… today went well — uneventful actually, which is all you can hope for. It started with a beautiful sunrise, that many of my sweet friends actually texted me photos of, and an always entertaining drive to school with Harrison. No lying, you guys — when we were driving down the highway he (completely unprompted and out of no where) said “Momma, isn’t the sun pretty?”… yes, buddy… it sure is. It sure is. Dang it I love that kid.
This first phase of treatment will last about 5 ½ weeks and consists of taking an oral (pill) chemotherapy called Xeloda (Capecitabine) and receiving radiation treatments every weekday. Like I’ve mentioned before, after this chemo-radiation combo, I will have a 6 week break, followed by my surgery, followed by another 6 week break, then 4 more months of IV chemotherapy.
Hair today, gone tomorrow?
Actually, no. With my type of chemotherapy, I do not expect to lose my hair, maybe just some thinning. At the risk of sounding vain, I am thankful I’ll keep my hair. For some reason I think it will be less confusing for my kids. I’ve gotten a lot of other questions about how the treatments will feel and what side effects I can expect — here’s a brief low down of this first phase of treatment!
Chemo-Radiation (5.5 weeks — 28 treatments):
- Xeloda — three pills twice daily (morning and night). My nurse practitioner said she’s pretty sure it’s the smallest dose she’s ever calculated (it’s based on BSA) haha #littlepeopleprobs. Side effects may include nausea and vomiting, diarrhea, fatigue, peripheral neuropathy, hand and foot syndrome (dry, blistering, cracked hands and feet), mouth sores, and decreased appetite/ weight loss.
- Radiation Therapy — every weekday. Side effects may include skin burn, fatigue, diarrhea (seeing a theme yet), and pain.
The radiation portion has actually been quite interesting to me. I’ve been an oncology nurse for quite some time and just haven’t ever worked in that area or had much exposure to it. Like I mentioned in a previous post — I had to get “mapped”. This included me laying on a CT table while they took several low dose scans and marked out how and where to best deliver the dose of radiation to my tumor, and also to the surrounding pelvic area. After it was determined which position I’d be in… they made a mold of my legs to make sure we re-create the same position each and every time. They also gave me four tattoos to map out where the dose will go to help line up the machine every day. As far as the treatment itself, it’s super quick and painless. It takes a total of about 15 minutes as I lay still and let the large arms of the machine rotate around me. It’s actually kind of oddly hypnotizing and relaxing. I can’t actually feel anything, maybe just a little warmth. Then, that’s it! I’m back to work down the street!
After this first phase, I’ll get scanned again and hopefully see a much much smaller tumor — and prepare for surgery! I keep daydreaming about a fun little trip to take during my 6 week break — we’ll see.
Well, I suppose the only other update I have is that I’m officially no longer a Nurse Practitioner student. I thought and prayed about this a lot — trying to come up with any way I could make it work. But I ended up making the tough decision to pull out of my courses. I’m pretty bummed to be honest. I have wanted to do this for so long — and I was (am) really proud of how well I was doing. Stupid cancer. I just decided that my health has to be the main focus right now and adding that stress is just not necessary. It was the easiest thing to take off my plate, so I did. I have every intention of restarting after this mess is over — I know this experience will make me a better healthcare provider — it already has. Cancer may have won this battle, taking away my study time and forcing me to pause my dreams. But it will not win the war. It will not.
This post originally appeared on Here Comes the Sun. It is republished with permission.