Tag Archives: ALK+ lung cancer

Bits of me: an update

I got a call from Alice (Dr. Shaw) last week with some news per my molecular testing. As luck would have it, I was trying out a new edible (delicious, weed flavored lollie) and was starting to feel the effects. I probably should have left my phone untouched but when Alice calls, you pick up.

So I did. And…I was pretty flipping stoned so trying to make sense of what she was telling me (while also doing my darnedest to maintain decorum) took a lot of effort. Going over the conversation in my mind the next day, I wasn’t quite sure I’d understood correctly and so I emailed her, fessing up as to my state of mind at that time and asking for clarification.

I didn’t hear back from her until Monday. In the meantime I had requested that she prescribe an antibiotic as my left lung has been really boggy and my energy level exceptionally low. Obviously it could be my cancer but I was hoping that my symptoms might represent a concurrent infection. So Alice called to discuss and this also provided that opportunity for clarification.

I heard what I thought I heard, which is basically this. Evidently my biopsy was contracted and paid for by the sponsor of my trial, which meant that they also ‘owned’ one of the core samples. Another went to MGH, another to research, another was used to attempt a mouse model of my cancer.

As my tumor is highly lepidic (lace like in its spread) it is difficult to biopsy. And, as it turned out, the samples that Alice had access to actually had no viable cancer cells for molecular testing. So she asked the sponsor if she could have some of me back and they–graciously–said yes.

The hope is that this last sample will hold the holy grail and will provide some information useful to guiding my next treatment option.

If it doesn’t, we might have to consider another biopsy. That is, unless my friend the mouse (sorry little guy, I had no idea) grows my tumor, in which case the mouse will be biopsied.

In the meantime we must rely on how I am feeling in combination with a scan two weeks hence in order to assess the speed at which my cancer seems to be progressing. Given the change in histology, there is the distinct possibility that it will now be more aggressive. I hoped there might be a silver lining here, as more aggressive cancers are typically more responsive to chemotherapy, but Alice did not feel that would be true in my case 😦 Always trying to look on the bright side, I am.

Oh–and at the end of our conversation on Monday Alice asked, on behalf of one of her other patients, about the steps required to apply for a medical marijuana card. Discussing this all later with my nurse practitioner (who found the entire episode highly amusing) I told her that given the fact I was able to help Alice, we could consider my personal research as community service. πŸ˜‰

And, on another bright note, I am feeling significantly better–I believe the antibiotic was exactly what I needed.

xo

ps: check out this great Health Stories Project article about my friend and fierce fellow advocate Andrea Borondy Kitts. I get to play a small cameo πŸ™‚

Threading the needle

So. For me, this, right now, is the most difficult part of dealing with my own cancer. The mind fuckery of waiting. 

My friend Tom Monks replied to a previous blog with a comment that could be a little Haiku poem:

Waiting for results
Waiting anxiously
Waiting patiently
Waiting ……..

Yes. As I remarked to Tom, waiting is such a part of this journey they even have designated spaces for it: waiting rooms.

Unfortunately there is no such space in your head. Bills come due, plans are made, the Holidays happen with or without you. 

It is such an exquisite balancing act. Talking down the fear, the angst, the worry. Staying positive in the face of a level of uncertainty that is, at times, almost incomprehensible. Making myself walk and go to the gym regardless of the fact that I already feel a physical diminishment. Rather, going explicitly because I do. 

Getting my warrior on even as I look around me with ever greater tenderness; I love this freaking world. Readying myself to battle an enemy who I am familiar with in a way that borders on contempt, and yet still at a loss as to how to go about it.

Trying to be at peace while simultaneously preparing to wage war. 

Threading the needle.

xo

Where do we go from here

inked

Prior to my biopsy, this mystery mark was made on my left shoulder. Not certain as to the significance, but hopefully it aided them in getting the right (make that left) side of me.

Aside from that, I am left with two tiny entry points high on my left breast as well as parallel tracks on my left cheek—a red mark from lying face down on top of the oxygen tubes for more than four hours.

Unlike my previous biopsies (there is a benefit to scar tissue), my lung did not partially collapse this time. Diane was able to take me back home with her with the caution that I was to have no alcohol. Therefore, I only had a small glass of wine that evening πŸ˜‰

What I know thus far is that they were able to get adequate tissue, including a sample for the sponsor of my trial (a token of appreciation). Over the next four weeks, results of genetic testing should start trickling in. This is the watch and wait part of cancer.

Alice called me yesterday (as well as once the night of the biopsy and she also came to see me twice on the day of—goddess that she is). This was a CT assisted biopsy and the surgeon/radiologist who performed the procedure is  also the radiologist who reads my scans, so he is extraordinarily familiar with my body/cancer. He told Alice that the tumor around my heart (which they did not biopsy–too proximal) has grown very little and that the tissue that they did sample–along the chest wall–is growing rather slowly. She feels radiation may be an option there but not for the cancer hugging my heart. 

Aside from that, there is nothing concrete to discuss yet. I am optimistic, she is cautiously so. 

It really is pull the rabbit out of the hat time. And as important as the magician (Alice) is, I am focused on that rabbit.

Nice-ness

So life might be bonking me on the head a tad but there’s some mighty fine shit going on as well.

Take my birthday. Child number two, my son August, took his mama to dinner. Sushi boat and Mai Tais. Yummy yummy ice cream. Paid for by my spawn (a term of endearment in our family). Really quite special and a rite of passage for us both.

Aug and Aug’s mom Linnea

And then there’s the Advair situation. My friend Lynda mailed me an inhaler pronto with the promise of another to follow and a whole bunch of other folks offered to send some as well. However, just the other day I received a package from another friend, Ginny, with six of those puppies inside so I am all set. 

She who prefers not to be named (but thank you) set me up with a massage which I’m going to be taking advantage of in the next couple of days and I am STOKED. I’m the sort of person who likes to go to the dentist because it means someone is touching me and there’s been all too little of that going on as of late. If you know what I mean πŸ˜‰

Got a guardian angel out there as well—who out of discretion will remain unnamed but he’s friends with some of you as well. Several months ago he just went and made a large deposit in my paypal account. A loan to be paid back when I am able. Unbelievably kind, generous, and knowing. Asking for assistance is not easy for me and frankly the only way this could have happened is the way he chose to do it.

I’ve also got some other loose ends to tie up getting rid of my vintage clothing and replacing the floor in my little airstream. Local friends have offered to help me with both. 

A neighbor paid the fee for my key to be replaced when I lost those. Another friend (girlfriend of a friend but now my friend too πŸ˜‰ ) is keeping me on track with my book. She is just what the doctor ordered—sassy, smart, incredibly organized. Exactly the sort of task master I am in desperate need of.

And of course I have received many, many messages of support and encouragement.

So, as you can see, I am RICH in friends. Almost obscenely wealthy. And there is no form of plenty I would rather have.

And the overcome

Because we all need a can-do story now and again.

So. If the part fourteen years have taught me anything, it’s how to power through. Not saying that such an approach is 100% effective but then again, sometimes scrappiness and un utter lack of hesitation is key.

My son Peter and I have our inside version of the joke is on the universe (not us). It goes like this: ‘It’s impossible, now let’s do it.’ Oh, and we have. Both alone and together.

A couple of prime examples. When I began my first clinical trial in October of 2008, I was three months into ‘you have three to five months left to live’. In other words, officially a dying woman. I also lived up past Lake Winnipesaukee in New Hampshire, a good two and one half hours from the hospital without traffic. I drove myself both to and from the hospital in the same day for all of my trial visits. And yes, I was married at the time and it wasn’t until much later that I would feel angry about the fact that I made those trips alone. However, more importantly, I did it. And, of note, I am no longer married πŸ˜‰

Getting Peter into private school was a monumental effort as well. I was going through chemo and I would lay on the couch as he wrote essays and then when I was feeling better, we would go on tours and interviews. When he got into Phillips Exeter Academy it was an immense sense of accomplishment. And when it was time for him to apply for college, we repeated this routine, as I would go and hang out in his room at PEA while he wrote, just to offer support. Of course, it was his own academic prowess that got him into MIT.

When I left my marriage, I was post chemo and pre lorlatinib, my health again failing. Some close friends helped me move the heavier items but I drove the 26 foot truck myself—a first. The day it was due to be returned I had one more load and a seemingly impossible deadline but I simply told myself that failure was not an option and I got the job done.

Of course, some situations truly would be impossible without assistance. I own a little airstream trailer, and the parking lot here at the lofts is being hot topped. That meant I had to move my trailer but when August and I tried to hook up the hitch, we discovered the mechanism was rusted into place. One of my neighbors suggested that if we got enough people, perhaps we could simply lift the the hitch onto the ball. So, the next day, we did just that. Six people lifted a 3500 pound trailer by the hitch, gently placing it on the ball of my truck as I deftly (yes, deftness was mandatory, failure not an option) inched it into place at just the right moment. Not probable, but possible.

Where do I go from here

It’s an interesting question contingent upon several prepositions.

See, I have a problem and the fact that it is a good problem (all things considered), makes it no less daunting.Β It would appear that I am going to live. Appear being the supposition here, as one can never be too sure.Β However, if the current trend continues, well, than I have at least a rather immediate future.

This is not something I planned on.

Nope. Stability is a concept I am only beginning to embrace. However, keep in mind, it remains a contingent, suppositional stability. Which is about the same degree of stability that one would experience sleeping in a tree.

Here are the basic facts. I am fifty-eight, almost fifty-nine years old. I am currently in fabulous physical shape but remain in treatment for advanced–aka terminal–lung cancer. That treatment has proved remarkably effective and although my cancer is not gone (70% response) it is gone enough. Better yet, I’ve had a sustained response to my current therapy–four years, three months and counting. The rub? At the moment, this is the end of the road for me–treatment-wise. When (do I dare say if?) this one fails, there is no other. Been there, done that as each time I’ve started a new treatment it has been with the understanding that there were not yet any others. Medical science has thus far managed to keep apace with my cancer but I’d be lying if I said it didn’t weigh on me–life with limited options.

So, there’s that. Cancer. And then there are the side effects of treatment. In my own case, the most debilitating have been the cognitive issues. When it comes to short term memory, I’ve got shit for brains. My own children were skeptical of the severity of my issue. That is, until my son August tried to teach me something. It took his repeating directions countless times and finally writing it down as well before I caught on. This concerned him enough he shared his experience with his younger brother and now I think they both have a little better understanding of what I face.

And although I am not nearly as anxious as I once was (perhaps an inadvertent blessing that goes with loss of short term memory), I am incredibly worried about finances.

I may be one of the few people with terminal lung cancer who does not qualify for disability. This is due to the number of years that had elapsed (stay at home mom) between my last paycheck and diagnosis. Alimony is my income; in an amount insufficient to actually get by and so each month my credit card bill steadily grows. And those checks stop arriving fifteen months and three weeks from yesterday.

I have started reading the classifieds looking for gainful employment. Unfortunately, my own work history is heavy on waitressing, with some other odd jobs mixed in. And although my work in advocacy should qualify me for something better, I am terrified that my short term memory issues are going to make any job difficult to maintain.

Take a deep breath. These are good problems to have.

I

can

do

this.