Chemo-cation

I finished cycle 12 of Xeloda with an increase in Hand-Foot Syndrome but only at the very end of the cycle. I lost three layers of skin on my thumbs and first fingers but they're healing nicely. My tumor markers are still stable!

Dr G said, Oh, I'm hurting you! I reassured him that I was coping but really I think I am getting close to the end of my Xeloda tolerance. 

The dentist says my sore tongue comes from the same side effect. Basically the skin covering my tongue has Hand-Foot Syndrome (!). She could hardly believe that I still have taste buds. 

My new opthalmalogist/surgeon says that 18 months of Abraxane likely caused the cataracts in both eyes. I am having the surgery in January, so I get a three week chemo-cation (plus the week recovering from the first surgery). 

Between eye surgeries I'll have one more Xeloda (round 13) and then we will re-evaluate during my second three week chemo-cation. Dr G wants to add Afinitor to the mix (Xeloda, Avaston, Aromasin, Aredia). I had Afinitor before without much luck and plenty of side effects, but I may be close to the end of what I can tolerate from Xeloda. However, Xeloda has me stable and I do tolerate pain well. (I am sad that I had to learn this about myself, but it's one of the things cancer taught me.) There are plenty more drugs out there plus anything new that comes out of the recent ASCO conference.

A double-duty medical day

Today I had two medical appointments scheduled back-to-back.

The first was with the lymphedema therapist, who agreed that there was something we could try to reduce the swelling in my hand and wrist. I've had increased edema there since Labor Day and was willing to try again with another therapist. For months my left hand has been so swollen with fluid that I can barely close it, much less make a fist. Today's evaluation appointment led to one recommendation. I am going to try bandaging my hand and wrist only at night. If I see softening in the tissue (the step before reduction in edema volume), then we will know it works. If nothing happens, all I've wasted is a few nights of good sleep. And if it seems to increase the edema, I will stop. I have three more appointments scheduled with this therapist.

After a ten minute break between appointments (at least the two places were close enough to walk to) I saw Dr. F for the first post-op checkup. She was adorable, calling her work on my tummy so perfect that I could wear a bikini on the French Riviera and no one would know I'd had surgery. (I should have asked her to pay for the trip or at least the bikini.)

Dr. F also did a pelvic exam. I had mentioned that I have some pain after urinating, and she thought it might be due to stitches rubbing against my bladder. The stitches will dissolve. I see Dr. F again in mid-March, six weeks after the original surgery date.

I drove home, felt so ooghy from the exam that I laid down on the sofa, took some vicodin and then some lorazepam to keep me from feeling like I was crawling out of my skin, slept a bit and now am feeling better. (Of course, I also got in my jammies at 6 PM.)

Recovery days 3 and 4

I felt even better yesterday than the day before, so good in fact that when G came over to walk the dogs I went with her. I can walk, just am not so steady on my feet that I want to walk alone in case I should fall. And certainly can't bend over quite far enough to pick up the poop....

Taking a walk, eating a bagel and lox and visiting with a friend were clearly the highlights of the day. I took the morning and afternoon naps as usual and managed to reduce my pain meds again. Ran three loads of laundry also (not a highlight but still an achievement). By 7 PM I was aching and so took more meds in order to relax and fall asleep later. I have to figure out the timing better so that I take something at 10 PM and get into bed, instead of waking up at 3 AM needing more meds.

Today's dog walker had to cancel unexpectedly so the pooches will have to manage on their own in the back yard until Rik gets home from school. For Bob this won't be a problem but Pumpkin might have issues.

Hoping to continue to improve and wean myself off pain meds half a tablet at a time.

Hospital recap

It's day two of recovery and I spent much of it on the sofa napping. C came over to walk the dogs and L made us both lunch, but I did have both morning and afternoon snoozes.

Some highlights of my hospital stay:

In the surgery prep and waiting area there was a new touch. Instead of warm blankets, the gurneys are covered with a Bair Hugger. It looks like a down comforter made of channeled "paper" with a hose in the middle. Warm air blows into the "blanket" and the heat keeps the patient toasty, so you put energy into healing instead of into shivering. Rik and I laughed out loud when we saw it, but I LOVED it!

Rik went home to feed and walk the dogs, then came back to the hospital around 5 PM.

The anesthesiologist tried hard to access my port but was unsuccessful. He then tried to start a line in my arm -- twice -- with no success. At this point he said he wanted to give me ether to relax me and then he would start an IV in my hand. (I had warned him that my veins were crappy.) The ether worked great. I immediately relaxed and the next thing I know I was in recovery.

By the time I got upstairs to a room it was past 6 PM. Dr. F had already spoken with Rik, who then called my mom, his mom, my sister and several close friends. He sat with me until about 9:00, by which time he was asleep in a chair and I was drowsing on the bed, so he went home.

I needed assistance to get into the bathroom the first couple of times, and then I was good on my own. But I was on the toilet every hour all night long! My pain appeared well controlled; I just had to pee all the time. The good part about being a patient at Swedish is the 24-hour meal plan. I called down for a snack at 4 AM and enjoyed vanilla yogurt with Cheerios and a decaf mocha, then went back to sleep until the next time I had to pee.

The next morning they removed the IV line and I was able to take a shower. I had a second breakfast of mashed potatoes, turkey sausage, a whole wheat roll and some fresh fruit. (I saved the espresso shake as a snack before discharge.)

When Dr. F came in on her rounds, she agreed all was good. When I told her about my having to pee every hour, she checked the rate on the IV pole and it was properly set. The nurse then chimed in that they had just lowered the rate from 50 to 25. "50!" said Dr. F. "I ordered 25!" No wonder I was in the toilet all night long. I had been getting twice the recommended fluid amount.

The morning ended with an unexpectedly pleasant surprise when the room telephone rang. It was the anesthesiologist, Dr. Max Lucero. He was calling to make sure that the port site was okay, and that I had managed well with the IV in my hand.

I gotta say, I have had a number of surgical procedures over the years, and in my experience the anesthesiologist comes in a few minutes before the surgery starts, introduces himself (it's always been a him), starts a line, and I never see him again. That Dr. Lucero called to make sure I was okay is a testimony to his being a caring, concerned medical professional and to Swedish Medical Center, who hired him. Kudos to Dr. L! He can put me to sleep any time.

Home again

Just came in, greeted the excited dogs and have unpacked from my one night hospital stay. This is a quick note to say that the surgery went well and I feel fine. The pain has been easily controlled with oral pain meds, but I slept only a bit at a time due to overly ambitious hydration and so was up to pee every hour on the hour all night long.

I plan to take a big nap now and will post more details later. It feels good to be home!

Going in for surgery

I have been a little stressed about the surgery. Over the weekend Rik and I snapped at each other. He still doesn't feel well from the sinus infection and I was evidently more stressed than I realized.

However, I slept reasonably well last night and got up before the crack of dawn to make and eat breakfast so that I didn't have to fast for as long. A one-egg omelet with sauteed mushrooms, toast and two big glasses of water should stop my tummy from growling too much later on. Imagine if I had gone without eating or drinking from dinner the night before to dinner time today? It would feel like Yom Kippur.

Maybe that's why they make you fast before surgery -- to recreate the feeling of atonement? Nah, it's some medical reason. Still, it gives one cause to think.

Pre-op talk with anesthesiologist

After talking with the nurse for the pre-op conversation, I asked her about the likelihood of the anesthesiologist using my brand-new power port for the surgery. She gave me the number to the anesthesiologists' staff room, where I was connected to Dr. Jonathan Maron.

Dr. Maron was great. He listened carefully to my question, gave me a complete answer, and all on the fly. I have no idea what he was doing at the moment I called, but he had no way to expect a call from a patient he hadn't met.

He told me that they absolutely could use my port for anesthesia. But if they found during the procedure that I needed fluids more quickly than the port could provide, they would then start a line. Of course, I hope that won't be necessary. I am a hard stick on the best of days and when fully hydrated. Given that I can't drink or eat after 7 AM, my veins will no doubt have shriveled up. And given that there was trouble starting an IV line for the insertion of my power port in late December, who knows what kind of condition my veins will be in?

At least I learned that there are limits to the speed with which a port can bring in fluid.

Dr. M also answered my questions about how best to prep my lymphedemic arm for surgery. We agreed that I should bandage instead of wearing my sleeve and glove. I like this not only because I can leave my arm wrapped for longer periods of time (and can sleep all night this way if needed). It would completely freak me out to find, for instance, that they had to cut the very expensive sleeve for any reason. In a situation like that, who cares about the cheaper fleece and padding?

Pre-op phone call

I really don't remember going through all this pre-op stuff in advance of scheduled surgery the last time I had a procedure. yesterday I had booked 30 minutes to take a phone call from a nurse. She wanted to review my entire medical history as known at Swedish, which goes back to 1988, before I moved to Seattle. (I imported medical records from my time in Washington DC.)

The nurse also reviewed my current meds, did a screening for domestic violence ("Are you safe where you are now?"), asked if I take any recreational drugs, and generally kept me talking for almost an hour.

The funny part was that even with all the information this nurse had available, much of it was wrong. Wrong date for a procedure. Wrong procedure, right date. Same procedure entered three separate times but listed differently each time. I realize some of this was due to the merger between Swedish and Providence hospitals, but really! Why wasn't the confusion cleared up the last time I had surgery, in 2005?

Pre-op appointment

I met with the GYN for a pre-op conversation today. There's been some hoohah. It was tough to get an appointment within Rik's travel plans but they were able to fit me in. I learned yesterday that they needed to draw blood for labs and had just had my port accessed for zometa on Monday. If they had told me when scheduling, it could all have been done in advance. Yesterday's mail contained the hospital's pre-op instruction sheet. Thankfully it arrived in advance of today's visit with the doc so I could review and ask the appropriate questions.

Dr. F has a good bedside manner and lots of experience, so I plan to trust her with my life. I like how she looked at my tummy and said, "Oh, you have a tiny belly button. It'll be a bit bigger after this." And "I didn't hear a heart murmur. Let me listen again." She listens well. When I told her I was prone to infection, she was able to change her usual practice regarding antibiotics and bump up the dose for me.

I think I am as ready as can be. I bought the special pre-surgical scrub, Hibiclens. I have to take a shower the night before and the morning of the procedure (so I will be very clean). Because the surgery is scheduled for 3 PM, I can get up early that morning and eat some breakfast. Otherwise it would be a long fast from midnight until late afternoon. I am allowed to take pain and anti-anxiety meds with a sip of water if I am uncomfortable or stressed that day. I will be cleared to drive as soon as I feel well enough to do so.

It's hard to prepare for surgery but I think I have done my part. And my doc told me she appreciates a patient who takes charge!

Surgery scheduled

I just got the call from the surgery scheduler with a date for the hysterectomy - luckily, well before Rik is supposed to lead that student tour to northern Ireland. I'll stay overnight in the hospital and have been told to expect a quick recovery since this will be a laparoscopic procedure.

I am relieved to have a date and glad to have this settled sooner rather than later!

Port update

Well, everything went smoothly today. Check in was on time at 6:30 AM, followed by a walk to the surgical prep area, where I got undressed and out on a hospital gown and robe and was asked numerous questions. An IV nurse started a line in my right hand, after saying that she didn't think she was allowed to touch my (bandaged) left hand. So the bandaging really works as a noticeable deterrent.

The interventional radiologist (IR) doc came in for a visit. We hadn't seen him in years, since he placed my first port. When we asked if he knew how long it had been, he told us it was before the hospital got a new computerized records system, so the best answer we can arrive at 4-5 years.

They were a little late taking me to the IR procedure room, where three nurses and techs descended on me. I transferred from the gurney to the scanner bed. They cleaned and draped the area on my right chest and placed a surgical drape over my face (on a frame to keep it away from my eyes). I was able to turn my head and look out the left side. No claustrophobia issues there. They placed an oxygen mask over my nose and mouth when the cannula up my nose bothered me. Then they gave me an antibiotic and started the Versed and fentanyl.

I became VERY relaxed but didn't fall asleep. I didn't notice them giving me local anesthetic. I could hear them talking to each other throughout the procedure but I didn't know what they were doing or understand the terminology, so it didn't bother me. The whole thing went very smoothly and I was well cared for the entire time.

An orderly wheeled me back to recovery, while the IR went doc spoke with Rik in the waiting area to reassure him I was fine. Rik promptly called my mom, his mom and my sister. He came back to my recovery room and spoke with the IR doc about Canada and photography while I devoured a tuna salad sandwich on whole wheat bread, potato chips (baked not fried, it's a hospital after all), water and apple juice. The red Delicious apple didn't appeal to me, and I saved the cookies for later.

Once they let me up and about, we went to the Ambulatory Infusion Center yo get my zometa. The IR team had left my port accessed so it was the work of moments to hook up saline and the drug. Rik brought me a decaf mocha and a huge chocolate-chocolate chip cookie and then got himself some lunch. (The Swedish-Cherry Hill hospital has the best hospital cafeteria in the area.) The zometa finished around 1:30 PM and we went straight home.

I've been napping on the sofa for the past three hours, tossing and turning a bit and snuggled with dogs much of that time. But at 4:30 PM the dogs were telling me they were too hungry to wait any longer for dinner. After all, they'd had breakfast at 6 AM! Rik fed them and I decided I was awake enough to blog.

Post-op care: No driving or alcohol for 24 hours (no hardship there). No shower until Friday (that could be a stinky problem). Take pain meds as needed. Be aware of signs of infection such as redness at the site, elevated temperature, etc.

I believe I will recover quickly and will keep all informed!

New port

I'm off this morning before the crack of dawn to get a new port. Had to bandage my arm so that no one gave me a needle stick in the left hand or arm by accident. Or tried to take my blood pressure. I'll say one thing for the bandaging -- it's hard to ignore.

The new power port should be an improvement over the current portocath. Still, there is risk associated with any anesthesia and procedure. I hope to be blogging again later today.