I needed that.

February 23, 2019. Having a week off from treatment was the best thing that has happened in months. I almost feel like my old self…or at least the edges of what my old self felt like…and I like it.

I don’t feel quite as run down, although I do tire out easily. I actually felt like doing a few things around the house and I’ve cooked a couple of dinners. I got out of my bed-clothes and got dressed because I wanted to, not because I had an appointment or someone was coming by. I walked out to the box and got the mail a few times. The smell of clean, fresh country air was wonderful. Sometimes I’ll step out on the front deck for the pure joy of deeply breathing in that amazing air.

My biggest goal for this time off is to put on a few pounds. Earlier in the week I was a few pounds shy of 90. My target for Tuesday’s appointment is 92. Right now I’m sitting at 89.5. I’ve added a plant-based protein powder to my daily smoothies that is gluten-free, vegan, non-GMO, and 200 calories a serving. I’ve also been eating a lot of pistachios. So when you think of me, think fat. Envision me with a little extra padding on my bones. (Now that’s a request I bet you don’t get every day!)

Half-way there. Six down, six to go.

Here’s my schedule for Tuesday, February 26:

  • 11:40a – Blood draw
  • 12:30p – MRI
  • 1:45p – Infusion #7

If everything goes as scheduled, we could be on the road before 5p and home by 8p.

One last thing, a simple yet heartfelt thank you. All the support through emails, cards, care packages, phone calls, word of mouth and texts after my last post was such good medicine. You really did help make me feel so much better. If genuine kindness, authentic caring and bona fide love could cure cancer…well, you know where I’m headed.

Optimist: Someone who figures that taking a step backward, after taking a step forward is not a disaster, it’s a cha-cha. —Robert Brault

 

I had a rough week

February 12, 2019. Today was my half-way point in my chemo treatments. But after last week, I was really wondering if I could go on.

I’m guessing the port implant and the anesthesia just exaggerated all the side effects from the chemo. The day after chemo, I’m typically pretty hyped up and have a hard time sitting still. But this week I slept most of the day and my appetite was not very good simply because everything tasted like cardboard. Food that I usually enjoy, like fresh veggies and fruit, I could barely bring to my mouth. Plus with the port needing to heal, I slept propped up to try to keep myself from rolling over on my left side, the side the port is on. Thursday was no better. Food-wise, the best I could do was smoothies and poached eggs. By Friday I was shuffling from the bedroom to the bathroom like an old woman, the port felt like an alien invader in my body, the nausea just never subsided, my intestines were in a knot, I have chemo brain which affects my concentration and memory.  I felt like the Lana I know was disappearing. In my brain I was saying, “Where’s Lana?” I found myself crying a lot, and wondering how I could continue with the treatment. Finally on Sunday night I said to Steve that I was considering asking Dr. Rugo if I could take a week off from chemo. The truth is for the first time in my life I was depressed.

I’ve come to dread Mondays, the day before treatment. Gathering things together, planning what time we need to leave. This week I just didn’t have the energy to care. So, today, Tuesday morning, I was doing everything I typically do on Monday night. We planned to leave by 8:30a, but it was really closer to 9a by the time we drove out our gate.

This is the first time I would have a blood draw through my port. Two hours before my blood draw appointment, I need to put prescription Lidocaine and Prilocaine cream on the port and then apply a Tegaderm film-type bandage over the top. The cream numbs the skin, so when they do the blood draw it shouldn’t be too painful of a poke. So about an hour into our drive, I applied the cream and the bandage as we sped along at 70 miles an hour. And it dawned on me, this will now be one of my new routines. Fun.

We arrived in plenty of time for my 11:40a blood draw appointment in the infusion center, where they also took my vitals — weight, blood pressure, oxygen and heart rate — all good except I had lost 3 lbs since my last infusion. As for the blood draw, it was as promised. I did not even feel the needle going into the port. They left the IV line in the port for the chemo treatment which was scheduled for 2:40p.

My next appointment was at 1:00p with Dr. Rugo on the 2nd floor. First we met with Dr. Rugo’s medical assistant Robin. She talked to me about how my week had been, my weight loss, my labs. She examined my tumors and then Steve brought up my depression. She gently suggested that I start taking a very mild anti-depressant to which I surprisingly agreed. Me on an anti-depressant? I never saw or imagined that coming. Then Dr. Rugo came in. It was a good appointment except for a couple things. She was concerned about my weight loss and my platelets had dropped from 136 to 83 in one week. She suggested that I not do chemo today. Steve reminded her we drive 3 hours one way to be there, and I asked if we could go forward with the chemo and take the following week off. She agreed, but would only give me Taxol this week. No Carboplatin. I would take next week off and she would reduce the dosage of Carbo for my future infusions. I asked if I could get the Benadryl orally rather than through the IV, as suggested by chemo nurse Lisa. The Benadryl directly into the vein really messes me up. She readily agreed.

So no chemo on February 19. I am so relieved. I felt instantly better. The other good news is that the tumors are a bit smaller. By April 2, my last chemo, these damn tumors should be barely detectable, if at all. Then surgery.

We stopped at Em’s desk on our way up to the 5th floor infusion center to let her know I wouldn’t be having chemo next week and that Dr. Rugo wanted me to have another MRI when I came for my treatment on February 26. She expertly, efficiently and with kindness and caring quickly made all the necessary adjustments to my schedule. We love Em. She came around her desk and gave us both big hugs.

So we head back up to 5th floor for chemo. Taxol only. Benadryl orally. And of course the usual Pepcid, steroid, anti-nausea medicines were administered.

thumbnail_LanaChemo-1My nurse was the lovely young Madeline. A truly delightful traveling nurse from New York who has had been in San Francisco less than a year. The infusion ended around 5:45p, I thanked Madeline for taking such good care of me, and we finally arrived home about 8:45p.

Listen, having chemo is not for sissies even though it can turn you into one. I’m not saying I feel like a sissy. I don’t. But I do feel human. I feel vulnerable. I feel tired. I feel old. I feel lost. I feel alone. No one can do this for me. There are no pitch-hitters. Even though I feel enveloped by love and support and caring, it is still a solitary journey that I’m on. Each time I hear from someone who is just finding out about my disease, or who has read my blog for the first time, or has known but just hasn’t known what to say, I’m touched to my core. My eyes well up with tears out of appreciation and a bit of sorrow for having this be the situation that brings us all together is such a profound way.

But this is what I am reminded about cancer every week when we step out of the elevator into the 5th floor infusion center and see everyone sitting in the infusion chairs, getting their treatments just like me. Cancer is blind. It is blind to age, ethnicity, gender, religion, fitness level, height, weight, economic status, political point of view. Cancer doesn’t care if you are mean or kind, meek or fierce, apathetic or extroverted, educated or illiterate, employed or unemployed. Cancer does not discriminate. It tries to own us. Cancer will not own me.

If we don’t believe the things we put on our agendas will come true for us, then there’s no hope for us…We’ve got to believe in our beautiful impossible blueprints. —Doris Lessing, The Golden Notebook

 

Lana gets a port

February 5, 2019. Chinese New Year – The Year of the Pig. The Day of the Port.

Because I had to be at UCSF by 930a to get a blood draw, Steve and I decided to get a room closer to the City on Monday night, knowing if we didn’t we would be on icy roads at six in the morning fighting the commuter traffic on Tuesday. We stayed at a really nice Best Western in Novato and ate a wonderful meal at the Wildfox. Totally worth it. The room was spacious. The bed comfortable.

The next morning we were on the road by 815a, and the traffic was not horrible, thanks to the diamond lane. We were at UCSF by 915a, so got the blood work done. While we waited for the results, Steve grabbed a latte and I tried not to be too nervous about the port I was about to get implanted.

We checked in at 10a, and within a few minutes a sweet nurse named Marietta ushered us back to a room where Steve waited while I changed into hospital wear—one size fits all (men and women) pajama bottoms and an open-at-the-back top that hung past my knees. She also gave me two pairs of skid-proof hospital socks and a warm blanket that I wrapped around my shoulders. With my shaved head and hospital get-up, I looked a bit like a circus clown sans make-up.

I joined Steve and Marietta, and she began to explain to me a little about the procedure and what to expect. I would be sedated, but awake. I would be able to hear the surgeons talking. She said that my surgeon Dr. Lokken would tell me more about the procedure before they took me to the operating room. Within a few minutes Dr. Lokken arrived and talked to us about the port, how it would be inserted, where the incisions would be made, when I might feel a bit of discomfort during the procedure (lidocaine injections), and about how long it would take. He talked about possible, but unlikely risks, too. Dr. Lokken showed us a sample port with the line attached so we would know exactly what would be residing in my body during the course of my treatments. By the way, this is not just any old port. It is a Smart Port®—power-injectable port. They gave me a packet with an ID card to keep in my wallet, as well as a little one to put on my key chain, AND a silicone ID bracelet so any medical provider I might encounter would know that not only did I have a port, but it was smart.

Soon Marietta escorted me into a very spacious and brightly lit operating room. She led me over to the table, and I stepped up onto a stool and sat and then laid down on the bed. They put in the IV, and I was introduced to the anesthesiologist, Dr. Ng, who as it turned out, was very excited about the Chinese New Year. The Year of the Pig. Not the Year of the Golden Pig, when, he said, many Chinese couples try to get pregnant. Rather it was the year of the wooden pig or something less significant. It was a very upbeat operating room. That, in turn, made me feel at ease and relaxed, plus the sedatives were kicking in.

They created a small tent to block my view of the operation and had me keep my head turned to the right since the port was being implanted on the left side. The entire process went as smooth as silk and before I knew it, I was moved to a gurney and wheeled back to the room with Steve. Marietta gave me some juice and a cracker, which I sipped and nibbled on. Soon she had me sitting up and helped me to the locker room so I could change. She let Steve come with me to help me get dressed. We said our goodbye’s. It was 12:15p so we headed down to the cafeteria for a quick lunch and water before heading upstairs for my 1p chemo treatment.

Chemo through a port (if you want to see what my port implant looked like after the dressing came off on Wednesday, click on “a port”) is so much easier than the weekly IV process. Wow! My chemo nurse EJ, was a beautiful and kind-hearted young woman with a warm smile. Dr. Lokken had left a needle in the port, so all EJ had to do was start giving me the pre-meds and then finally the nasty stuff. We had a short visit with Nurse Evelyn and then Nurse Carolyn who is British. She was a wealth of information about ports. She was amazing. I wish I could remember everything she said, but of course I had chemo brain and Benadryl brain and I was recovering from the implant. I might ask her for a refresher when we go back on the 12th.

Wednesday, February 6. The day after chemo has typically been a hyper-busy day for me. I turn into the Energizer Bunny. But not this week. I slept on and off all day. And I slept a solid 8 hours last night. The port takes about two weeks to heal. So I’m not supposed to lift anything over 5 lbs. and keep my activity to a minimum. So far, no problem. The side effects of the poisons are increasing including fatigue, the tissue is bloody when I blow my nose, my intestines aren’t happy and, of course, my buzzed hair is getting thinner and thinner. My weight fluctuates from 89 to 92 lbs. But, I believe, my tumors are continuing to shrink in size. I’ll know more on the 12th, when I see Dr. Rugo again. It’s a wild ride, my friends. Just got to keep on, keeping on.

The lowest ebb is the turn of the tide. —Henry Wadsworth Longfellow