Week One in ChemoLand

Hello everyone, and thanks for waiting for me to get around to posting again. I probably scared you all a little, making you think that I've been away from the computer because I was so flattened by the drugs. And I did have a few tough days, but in general I've been feeling, well, pretty good! Actually, I'm surprised and delighted by how good I feel. Knowing that chemo is a downward spiral of side effects, I'm very happy to be starting off at a high point. Maybe it means that my lowest level won't be so low, or maybe it just means that it will take the drugs a few rounds to do real damage to my young, strong, healthy body. In any case, it means one treatment down, seven to go!

Here's a round up of the side effects so far:

• Tiredness - I crashed early on Thursday and Friday and took a nap on Saturday, but was able to maintain a pretty normal activity level. Then Monday hit like a ton of bricks. Well, maybe a half-ton, with the other half crashing in on Tuesday. I was WIPED OUT. The doctors said that the 5th or 6th day would be the worst, but I was feeling so great the first few days that I really thought I'd gotten away with something! No such luck. By Tuesday I could barely function. Thank goodness Sappha is home this week and could help with Finn. Wednesday was better (a one nap day), Thursday another step up, and today I'm definitely back in full form. But man, they aren't kidding about the energy dip - it's serious and sudden. Next time I'll be more prepared.
• Nausea - hardly any. I've only had to take two "extra" anti-nausea pill (in addition to the prescribed amounts I need to take without fail for three days after each infusion). Otherwise, I've been able to control it by nibbling a little something before getting out of bed and having a stash of crackers in my bag. I've been eating real food and everything!
  
• Headache - this is caused by the anti-nausea meds, but I'd rather have the headache than the nausea! Still, it isn't skull-splitting, just enough to send me to bed early.
• Pain - just some soreness from the port surgery, for which I've taken some Tylenol. I'm not supposed to take Tylenol for long, though, because it could suppress a fever, which would be an important indicator of infection. I didn't even have any bone or joint pain from the follow-up Neulasta shot (for my white cells), so I was happy about that, too. Also from the port, I think, is some sharp rib pain when I breathe deeply. I think that just takes time.
  
• Stiffness in my neck and shoulders - I hadn't heard about this side effect before, but my support group told me that it's actually pretty common. I asked David to give me a little massage, but my skin is also hypersensitive, so he could barely touch me! By today the soreness is almost gone, though.
• Dry skin - I think mostly from all the handwashing. I need a more moisturizing soap and a non-scented lotion (because the smell of the lotion I was using was aggravating the headache).
• Mouth sore - I got one small blister inside my lip on Tuesday morning, but it popped while I was eating breakfast and I haven't gotten any more. Yet.
  
• Taste changes? I'm not sure, but that 7-Up really tasted like dishwashing detergent to me! I tried it out of the can and in four different glasses - same thing.
• Clogged ears and sinuses - again, I'm not sure, maybe it was a small cold. I hope it was a cold and not a side effect because I really don't want to experience this every time!
• Hair loss - no, not yet! But my mom, Sappha, and I went ALL OUT at the salon. My mom had about 14 inches cut off (she'd been growing it long to donate to Locks of Love), Sappha looks like Mia Farrow, and I haven't had hair this short since that disastrous high school graduation cut (anyone who remembers that unfortunate coiffure will agree that this is much better!) . Here are the before and after pictures. What a difference - the stylist was loving us!
  

Here's the run-down of my first chemo trip:

Dave and I went to the hospital early Thursday morning for my port surgery. I was conscious during the surgery, with just a mild sedative and local anesthesia. They hung a curtain around and over my head so I couldn't see anything, so it was rather like camping in a very small tent. I was doing just fine until they started getting all of the lights in place, scrubbing my chest with the soap, and all those other preparations. Then I got a little teary and almost had to ask them for David. But I toughed it out. It wasn't the surgery I was anxious about (though I don't know why they have to go ON AND ON about the risk of infection - is that really what a strapped-down patient needs to hear?), but the whole day. I was surprised that being conscious during the procedure made such a difference, though. With the lumpectomy and re-excision surgeries, I was already out when they did all the iodine painting and other prep. It seemed more ominous when I was awake, more serious somehow. Anyway, they poked and pushed at my chest and collarbone and got the port in, stitched it up a bit, left it accessed so the nurses upstairs would be able to use it immediately, and sent us on our way. We were up at the Infusion Suite by 11 AM. The port is on my right side and makes a round lump between my skin and ribcage, about two inches below my collarbone. I removed the bandages on Sunday, took my first shower on Monday, and it continues to heal and feel more and more comfortable. I was supposed to go in for a port check yesterday, but it was so cold and I would have had to drag the kids all the way up there, just so the doctor could say, "Yup, looks good, go home." So I skipped it. I'll drop in next week before Infusion #2 for an official okay, but given that there is absolutely no sign of infection anywhere, I think I'm safe.

Up in Oncology, I had my vitals checked, spoke with Dr. Cohen for a few minutes, scheduled my next appointments, picked out a comfy recliner in the corner, and waited for my nurse, Marie Anne, to tell me how this thing was gonna go down. (I don't think I've mentioned that the Oncology Dept. is actually on the same floor of the hospital as the birthing center where Finn was born. And when I finish with the chemo treatments, it will be about the time of his first birthday - a sort-of coincidence.) Along the way, I bumped into a woman I met at the wig-fitting, so we chatted while Marie Anne got me hooked up. First into my brand-spanking-new port was a heavy dose of Ondansetron (brand name Zofran), a powerful anti-nausea drug. But as I spoke with my chemo buddy across the aisle, I was having a hard time focusing. I blinked hard and rubbed at my eyes a bit (was I just tired from the earlier sedative?), but when I turned my head to say something to Dave, it felt like another head was attached to my shoulder, moving in tandem with my own. We called the nurse over in a panic, but she explained that this often happens with the first dose of Ondansetron. They should warn people it causes double-vision! Then I downed a few pills of another anti-nausea drug, and they gave me a saline drip. Marie Anne injected the first chemo drug, Adriamycin, into my port with a big syringe, as it's a thick, syrupy fluid. They go really slow at first, to make sure that there is no burning, pain, or any other "bad" feeling around the port area, but I had no problems at all. Then a drip of Cytoxan, which took about an hour. Then a flush, so that the port won't be clogged on my next visit, and I was done. The whole infusion process took about three hours.

Dave and I headed home (my mom had Finn and was on Sappha pick-up duty, as well), and I felt good enough to stop at Room & Board and make him sit on the couch I want to buy. I was sidetracked by a new streetcart, Calexico, where I bought a pork taco, despite the fact that my white cells were probably falling as I bit into the fresh corn tortilla. Yum! But okay, I promised Dave, no more street food until after chemo. I swear.

Then back home, feeling pretty good, drinking that water (3 liters a day to flush out the meds), washing my hands after each and every trip to the bathroom (a notable effort because, come on, admit it - who washes their hands every time when they're in their own house?), taking my temperature 4 times/day, taking my pills, and enjoying the spaghetti dinner that a friend brought over, brushing my teeth and rinsing with the special mouthwash, and so on. We stopped for Tylenol at the drugstore and left my wallet behind, but when I called the next morning, certain it was gone forever, they had it - and everything in it. So Luck seems to be on our side.

On Friday, I got my Neulasta shot, and Marie Anne showed me how to give it to myself so I won't have to go back to the hospital for it in future weeks. Fortunately, for my next two chemo cycles, I'll be attended by a personal nurse - my mother-in-law first, then my sister. So I should be very practiced by the time I actually have to do it unsupervised! But it seems pretty simple: grab a roll of belly fat, jab the needle in, slowly inject the medicine (it stings more if you do it fast). Dave says as long as he doesn't have to do it, he's A-OK.

So that's about it. One week of chemo finished, fifteen weeks to go.