Update 12/29/2013

December 29th, 2013 § 66 comments

IMG_8015No news isn’t always good news. A lot has been happening in the last few days. On Tuesday they successfully drained 2 liters from my left pleural space after the unfortunate failed attempt last Friday. There is still about one liter remaining in there (the doctor can only safely remove about 1.5 liters at a time). Think about that: two liters. The size of a soda bottle… a few pounds. From one side. It’s astounding how much space and weight that is. Those are the actual bottles of fluid in the photo.

Everyone kept telling me how great I would feel after the thoracentesis. I did feel like I was breathing easier, but I didn’t feel great. In fact, I had quite a bit of pain. They checked for an air leak by x-ray as they always do after this procedure. There were no visible complications. But there was still tremendous pain starting that day and increasing into the next. It was more than the pain from the reinflation of a lung that had been compressed by half its size. But exactly what it was we weren’t sure.

By Thursday when I had to go back to Sloan-Kettering for my PET scan, echocardiogram, and EKG I was in agony. One of the doctors I met with could see how much pain I was in and prescribed some narcotics. I can’t take anti-inflammatories because I am having a liver biopsy next week and they put patients at risk for bleeding. I am so grateful a doctor seeing me about paperwork reached out to offer assistance and relief.

My father met me in the city. After I completed the required tests he drove me home. I can’t think of anyone better qualified to keep an eye on me than a retired cardiothoracic surgeon. Unfortunately, the pain continued. In all likelihood it is a combination of the cancer causing inflammation in the pleura and some nerve inflammation now that some of that fluid is gone and the lung is reinflated. It’s really all conjecture. We will see if the scans and tests reveal any additional information.

Oxycodone couldn’t keep the pain under control so yesterday I had to combine it with a Fentanyl patch. This duo is definitely helping me more; I’m still in pain but it’s more manageable today (Sunday). Each of these patches lasts for 72 hours and will deliver a constant stream of medication to me. I am pretty much bedridden.

It’s looking like Tuesday (New Year’s Eve) will unfortunately be a tough day. I was already scheduled to have a liver biopsy (This is not to check for malignancies; we already know there are metastases here. This procedure will be for repeated genomic sequencing analysis and other testing to make the best choices about chemotherapy and future clinical trials). Now, given all of the events this week, the team has decided that I need to have a PleurX catheter put in. This is a drainage system that will allow me to remove excess pleural fluid at home rather than having to have it tapped with a needle each time it builds up. The catheter will stay in place only as long as I need it, which will be as soon as treatment starts working and the fluid stops being produced in such copious amounts. I assume this will be at least a few weeks.

Having these two procedures and pain control issues means I will need to stay overnight in the hospital for observation. It’s amazing the lengths some people will go to to be in NYC for New Year’s Eve fireworks, isn’t it? Maybe Anderson Cooper will swing by while I’m recovering.

Once we see the results of all of the tests I’ve had and have these two procedures behind me, we will re-assess the plan to start the second clinical trial on Thursday. The most important immediate tasks at this point are to treat the two symptoms and get my breathing and pain under control. Immediately after that we go to work on the metastases to stop the problems at their source.

Thank you for all of the support I’ve had over the last few days including local friends who have been so kind and some friends who came from quite a distance to keep me company this weekend. I’m just putting one foot in front of the other and doing everything I can to gather all of the information I need to make a decision about what the best next step is.

Of course, as much as I can, I’ll keep you posted. Twitter is always the best way to keep up to date on daily happenings. It’s a lot easier for me to get quick bursts of info out in that medium. So many have asked: I have all of the help that I need and respectfully ask for no visitors or gifts during this time.

I would like to wish you all a happy and healthy 2014 if I don’t post again here before we all ring it in.

Mama said there would be days like this

December 21st, 2013 § 44 comments

IMG_8009When I was growing up and there was a particularly tough day my mom would use the expression, “Mama said there’d be days like this.”

Yesterday was one of those days.

My husband and I left the house before dawn. At about 8 AM I started my appointments. First was a physical exam with vitals taken and a review of symptoms. I met a new oncologist who was filling in while so many of the doctors were away (Friday of a holiday getaway week). We arranged this match because she is the Principal Investigator on a new clinical trial the team has been discussing as a good fit for me. As regular readers know, in my last post I explained that my cancer has progressed in some spots (stable in others) so we need to try to find something better now.

We reviewed my scan results and what she and my regular onocologist think we should do next. A slot in a new trial opened this week and it seems to be a reasonable next step to try another non-chemotherapy method. I’m going to save the details of that study for a later post but for those of you who know and understand the jargon, this one involves a Novartis drug called LEE-011 which is a CDK 4/6 inhibitor in combination with an anti-hormonal agent. This clinical trial is what I’m signing up for next.

The protocol for this drug is very challenging. It involves many trips to the city, especially in the first month where it will be once or twice a week, sometimes just for a blood draw. Some of those visits will be 8 hour sessions where blood is taken a few times to check drug levels in the blood before and after taking the pills. None of the blood draws can be done near my house since the conditions and testing all must be carefully controlled as part of the study. I’ll enumerate side effects and other details in a later post but this one looks to affect me more in daily functioning than I’ve had to deal with in the last few months. I’m definitely nervous.

We talked for a long time about the study. I had already gotten word from my oncologist about her own recommendation. I signed consent forms. I scheduled the necessary tests. They require a CT scan (I just did one, though it falls 2 days outside the testing window. We should be able to get an exemption for that so that I don’t need to redo it). I will need a PET scan, likely need a repeat bone scan, an echocardiogram (this drug can have cardiac side effects), an electrocardiogram, blood test, urine test and, (rats!) a liver biopsy. All of these must be completed in the next two weeks during my “washout period” (interval of time where you are not taking any chemotherapy agents and so you are starting with a clean slate to measure effects in a new clinical trial). Of course, the holidays are not an easy time to accomplish all of these.

I then went to get chest x-rays to monitor my pleural effusion (fluid in the sac around my lungs that makes breathing difficult). After those x-rays and fasting until almost noon I had 40 minutes to finally grab a quick bite. Then I went to the main hospital to meet with a pulmonary physician to decide what to do about the pleural effusion and find out how bad it actually is.

I had a full medical history and symptom assessment with a nurse and then met my new pulmonary doctor. He told me that my left lung is compressed to about 50% of its usual size from the fluid that is there. He estimated 1.5 liters of fluid have accumulated. He said it “layered” on x-ray which means it’s still flowing and therefore would be easier to extract. We decided to do a procedure called a thoracentesis to drain it. One of my morning blood tests that had to do with clotting had come back high, something that would mean we couldn’t do the test. We figured out it had been drawn from my port, which should never be done for clotting tests because they use an anti-clotting liquid called Heparin to flush the port each time and that would lead to inaccurate results.

Through a lab snafu it took 2.5 hours to get the new results rather than 40 minutes. By the time we finally had the all-clear to proceed it was about 5 PM. I still had barely eaten or had anything to drink. For the draining they sit you on a table with your feet dangling and have you bend over a stand for support. It is very much like having an epidural placed. They use local anesthetic to numb the skin and then stick a needle between your ribs, insert a catheter and vacuum extract the fluid (which should take about 10-15 minutes). The doctor got the catheter in, got a small sample of fluid going and…

My blood pressure plummeted. My heart rate dropped. I got hot and woozy and clammy. Yup, I passed out. They had to remove the drain and get me on oxygen and lay me down. I revived quickly, but we could not continue. So, I have the pain from the needle in my back but nothing to show for it. I will now have to go back on Christmas Eve to try again (fully hydrated and fed, hopefully this will be the key). I was obviously disappointed and emotional by this point. I had to go get the X-ray you need to confirm that no damage was done by the needle, and we made a train that got us home at 8 PM. It was a long exhausting day without too much to show for it in terms of relief.

It’s hard not to feel defeated on some of these long days when it just seems the mountain is so big to climb. Right now we are making a change to try to get better results in controlling cancer progression. I won’t be able to to travel for the holidays anyway, but now I will be spending time in hospitals rather than resting at home and taking a break. Cancer doesn’t give a damn about Christmas. Or families. Or anything that matters to me. But my doctors do. And they continue to show caring and concern and work so hard to try to make things better. Without that help and support this would be so much harder. Even when mistakes happen (and yesterday there were quite a few with blood draws and lab tests and so on), every doctor apologized. I definitely shed tears many times yesterday out of frustration, which doesn’t happen too often.

As I waited for my results I watched the office staff exchanging gifts, talking about holiday parties and Christmas cookies. One by one they packed up their belongings and turned out the desk lights. I was the last patient left in that department. That was hard. But I also know that I got to walk out of the hospital last night. I still got to go home and sleep in my own bed. And when I got home I made it just in time to hug my children and see Tristan’s artwork, all sparkly and smile-inducing. He asked me at bedtime why I couldn’t go on vacation with the rest of the family again this year. I explained to him that altitude makes it harder for me to breathe. The air is thin, and I would not feel well. I asked if he understood. “Yes, but I am still sad you can’t come.” “Me too, honey. Me too.”

I’m going to need to dig deep over the next 6 weeks. I’m going to need to ask for help with child care and logistics while I’m recovering from procedures and having so many trips to Sloan-Kettering. That’s not easy either. I find it very hard when I feel that I’ve not been strong enough, or that I’ve complained about the way a hard day has gone. I know it’s normal to need to just cry and complain and say to the cold night-time sky, “This isn’t fair. This isn’t how it is supposed to be.” Sometimes you just need to vent, though.

I need to be strong for the next few days and what they will bring. I want to make the holidays joyous for my family to the degree I can. These are the tasks that make me feel like me. The family shopping is done, the teachers’ gifts distributed, the tips for those who help during the year have been handed out, the holiday cards sent. These are the things that I know I could get a “pass” on. But they are the things I value. I will always try to show my gratitude to others.

Yes, Mama said there’d be days like this. But tomorrow is another day. And I don’t lose hope that it will be better.

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