This whole adventure began when I randomly noticed a bump in my neck this past Thanksgiving. The holidays proceeded pretty normally with a few doctors’ appointments tucked in between. It got real in January.
Whining ahead…but it’s to demonstrate the lack of travel:

• There was the canceled attendance at ALA Midwinter Meeting (Chicago) to bump up surgery on the kumquat in my neck.
• The movement to telecommuting most of my time at work (turns out, I miss being near people)
• The last-minute cancellation of the April trip to Chicago for the Exec Board meeting
• The camping trips we didn’t take because…because.
• The missed trip to Florida to see my godson graduate from college — and also see the rest of the family, and
• The knowledge that we’ll be cutting short the annual trip to Oregon to be back home in time for a chemo treatment.

So…. I’ve been building for months and lobbying (whining to) my oncologist about my need to go to the ALA Annual Conference.  “I’m on the Board,” I say, “I need to be there.”  He’s cautious, which I appreciate, but asks that we wait to see how things go.  Cautious in general, but caution is amplified when I end up with an emergency admit after 3 of 4 chemo treatments. It’s not a good record. But we had some success and improvement in late May. We found hope.
In the end, I got to go to the Annual Conference. We drove (mostly Kathy), we packed a ton of stuff ‘just in case’ we needed it for health issues, I Clorox wiped down a lot of surfaces, learned to walk up and down stairs without hanging on (those who know my history with stairs will find this amazing, but it’s proof I’d rather fall down than get a fever and never be allowed to travel), same for escalators (though I could use my elbow for balance), I avoided the exhibits with the exception of one (approximately 3 minute) jaunt in which I sought sweets but came up empty and never touched anything/anyone, and I took time to sit/rest in reasonable increments.  I also walked SO much  more than I have in months, remembered what it is like to crawl in bed and fall asleep from being tired from actual physical activity, and took a whole evening in to recharge.  There was that one late, late night; but it was too wonderful to regret time with friends.
We returned home a week after we left. Happy and grateful for the time spent visiting with friends, talking about library things (likely more me than Kathy on that), seeing cool tourist things (more Kathy than me), eating great food (Franchino’s…go there!), taking part in good work leading a massive association, watching the sausage being made (ahh, policy-making by a 180-member council), learning, being inspired, and feeling complete recharged.  In fact, I returned home ready to tackle more of my chemotherapy journey.
All this to say, it was totally worth it. Totally, completely, wonderfully worth it. I feel whole again.
After getting home yesterday evening, this morning Kathy drove me to MSTI for Chemo Treatment #5.  As mentioned before, the treatment days aren’t really bad. It’s what happens in the rest of the 3-week cycle that keeps us on our toes.  A lot of people express concern for me on treatment days.  Odd-numbers treatments are out patient. Today was pretty typical. It goes like this:
8:00am – Show up for the lab work – they access the port in my chest and draw a couple vials of blood for a complete blood work up.  The port access stays in, because we’ll just that little tube they attached for chemo later.  The port is under my skin, having been surgically placed at the beginning of May. It will/should stay there for my whole treatment (about a year-ish). I use lidocaine over the port before I head to the clinic. That omits any pain when they insert the needle to “access” the port.  The needle is basically an IV access, just a different shaped needle (L-shaped) to work specifically with the port I have.  After accessing, it’s covered with a squishy/soft tape to keep everything in place. Blood work results take less than 30 minutes.  That’s how long is schedule between finished the blood draw and seeing the doctor.
We were early today, which was good because I didn’t want breakfast first thing (too tired to eat), but was hungry after the blood draw. So we dashed over the cafeteria for a take-out bite to eat.
9:45 – Doctor visit. I meet with the oncologist and his nurse. We confirm how wonderful the trip to San Francisco was. I thank him multiple times for making it possible for me to go. I’ve now had 5 weeks since my last treatment, so lots of time for my body to recover. Notable were platelets (helps blood to clot), which were normal.  Not normal for me, normal for a normal person!   Also my red blood cells (specifically hemoglobin, which carries oxygen to different parts of the body to help them function. when these are low, that’s when I get tired super easily & normal things like making the bed become WORK), the hemoglobin was 1 point shy of normal-person normal.  We didn’t get the number for white blood cells, but they were pretty good. Not normal-person, but doing okay. We confirm I am in good shape for treatment.  If these numbers are too low, they will delay treatment to preserve health.
10:30ish – Back into chemo clinic. Now the pharmacists can mix up my dosage. So have to wait for that. When it’s ready, we get going:

• First is saline..always the saline
• Into with the saline is some anti-nausea meds: 1 injection, 1 small bag that takes about 15 minutes to flow.
• Then chemo drug #1 – It’s red and has to be manually injected by the nurse over about half an hour.
• Then Mesna – I hate mesna on principle based on the knowledge of having agreed to try taking it orally. It’s bad. Thinking of the smell/taste makes me queasy. In a bag via IV, it’s fine. 15 minutes bag.  Mesna is actually helpful. It’s a protector; I get it three times with this treatment — One bag before the Cytoxin, two bags later in the day.  It protects the kidneys & bladder from the toxins in the Cytoxin.
• Chemo Drug #2 – Cytoxin. A bag that takes about an hour to flow. It sometimes gives me a little sinus headache, right between the eyes, when it’s flowing. That goes away.

1:15ish – When the Cytoxin is done, we’re done.  They flush the line into my port, but keep me accessed. I still have two Mesna doses to do later in the day.  But we leave.
In between:  Grocery store (we’ve been gone a week), home, groceries away, laundry (this is mostly Kathy, thank you), snack
4:00pm: Back to MSTI for a 15-minute bag of Mesna, then back home.
In between: More laundry (mostly Kathy, though I put some away), dinner, Big Bang Theory rerun, phone call with Mom, lots of water (they pump the toxins in, but we want the excess OUT).
8:00pm: Back to hospital. MSTI clinic is closed, so we head to Floor 4 South where I stay there. They have a little outpatient area where I get my final bag of Mesna for the day.  We load up on wonderful crushed ice while we’re there (it’s a hospital treat) and take a stroll around the floor on the way out to see who is on duty. It’s kind of nice to see them when you feel good and aren’t dressed for hospital visits.
We’re back home by 9pm where the laundry still runs and I go through a week’s worth of mail.
Tomorrow is the final step in this treatment. Neulasta.  It’s an injection that helps with the regeneration of white blood cells.  It doesn’t keep the current cells from jumping ship, but it does help them to reproduce more quickly when it’s time — that usually happens about a week from now. Neulasta can cause some bone pain. Last time, my upper back/shoulder blades ached like I had bruises on my back. What’s strange about it, is I didn’t really mind the pain…means it’s working. I’m okay with that.
While we’re one day into Cycle #5, it’s taking place with great hope and a positive outlook. We really, really want to get through this without a fever spike. After Cycle #4, we saw great improvement in that, so we’re feeling good about it. It gives me hope that we can get through all 17 cycles. Right now, my eye is on the target.