Highs & Lows

Success!

The move is complete. My mom and our animals have safely relocated to eastern Maryland. If I pick up the phone and say I need her, she can be by my side in one hour and fifteen minutes flat. That gives me the piece of mind I’ve been missing since I was diagnosed more than two years ago.

The weather completely botched the move schedule and condensed an 8 day plan into 3. It wreaked havoc with our tasks and nerves; unfortunately this means a future WV trip will be needed to complete some little projects. But still – the move complete, and it’s coming off The Froglist!

We Now Return You to Your Original Programming

I still have cancer. No, that’s not news; but I’ve been distracted by planning and executing a very complex move. That said, I owe my friends, readers, and this chronicle itself many updates (or lowlights, as they may be.)

The Scans

After three months of Camptosar, I had scans in early January to see if it was working. The PET scan was unofficially stable: there is nothing significant enough that we have to deal with it. I think it’s a nice way to say “yeah, cancer may be growing/spreading in your lungs, but there’s nothing we need to tend to right now.” And it’s absolutely not measurable. (More on that later.)

In contrast, my brain MRI was a virtual shit-show. (My technical terminology, of course.) I have new spots. All are small, less than 1 cm, but the people who read the scans and write the reports didn’t even bother to count them. Dr. Roush told me about one or two old, zapped ones which may have shrunk; he seemed like he was desperately reaching for something positive to say.

Nothing is CyberKnife-able (boo) or surgical (yay), and for the first time I understood that anything we do from here on out is a chemical solution: pill or infusion, trial or FDA approved. Those are the tools that remain.

Trial Tribulations

Armed with crummy news, Seth and I prepared for the drive to Massachusetts General Hospital in Boston. We thought we would meet once again with Dr. Alice Shaw and enroll in the next available drug trial for ALK+ lung cancer. It’s good we called ahead…

There is a drug in trial that is showing promise for ALK+ lung cancer that has metastasized to the brain. Unfortunately, I do not meet the requirements for the trial. Specifically, the patient must show measurable tumor growth in the lungs. Not only are my lungs generally stable, I’ve never had the kind of lung tumors that could be measured in centimeters, for example. The drug company could change the rules and remove or relax this requirement in the future. But for now, there is no trial available to me.

For Now

At the end of January I began a chemo drug called Temodar. It’s used to treat primary brain tumors, which I don’t have, but both Dr. Roush and Dr. Shaw thought it was a logical next step. The key is that it is known to cross the blood-brain-barrier. Common side effects are messed-up blood counts and fatigue. So far my counts are acceptable, but I have experienced some other popular side effects like headache, nausea, and fatigue.

I have a growing list of other issues and concerns which are common with brain lesions and swelling, but I’m not ready to discuss those in detail. My oncologist and neurologist are adjusting the doses on a couple medications to try to mitigate some of my overall unhappiness.

It’s been difficult to stay in touch with my closest friends… to even know what to say. Many days I feel like I’m falling apart; some days I actually am! And I don’t have the energy or desire to lie when they innocently ask, “How are you doing?”

There have been many DIY projects associated with the purchase and move, and realizing all the things I can no longer do has made me feel very inadequate. Most of these are things Seth and I enjoyed doing together too. Now I just watch as he replaces electrical outlets or installs a new faucet (my fine motor skills aren’t very dependable lately). It’s also frustrating to require help to accomplish anything. (In other words, I’m obnoxiously needy!) I know Seth loves me and would do anything to help and include me, but I miss being his equal partner-in-crime during our DIY and other miscellaneous capers!

The H Word

On Monday my oncologist brought up the topic of “hospice” for the first time. Once a patient decides to stop curative treatment, they transition to hospice. As I understand it, insurance officially stops paying for anything meant to cure the person and instead focuses on what’s needed to provide comfort and symptom relief. (It’s not that we ever thought I was curable, but receiving CyberKnife, WBR, and chemo are considered such.)

I’m glad he brought it up. There had to be a first time, and now the door is open to continue the discussion. I’ve been able to deal with a lot by pretending my situation isn’t as serious as it is. And I know beginning hospice doesn’t mean I will die by a certain date. I’ve read a few stories where people flourished and even lived for a few “extra” years once they make the transition to hospice. It makes sense that some people thrive once they are out from under the thumb of constant treatment.

I feel that I should do some homework and interview a few in-home hospice providers. I’ve made a couple calls and left messages in the past, but I chicken out and never answer when they call back. My oncologist casually recommended a close, small place that has 10 “very nice” in-patient hospice rooms. I understand the benefit of having a nurse available 24/7, but I think the comforts of home will probably trump all!

Hopefully this conversation is premature. Hopefully new tumors stop appearing at such an alarming rate. Hopefully I stop becoming more and more symptomatic! I wish I knew my timetable, but there is no way to even guess. The immediate goal is to reduce the negative impact of chemo and other meds so I can spend more quality time with my loved ones. And hopefully Temodar will keep new tumors from sprouting while I’m busy enjoying life.

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9 responses to “Highs & Lows

  • Claire Philpott

    Jessica,
    I am taking Namenda following WBR. It is thought to help prevent cognitive decline. I hope it’s working, dont have any rhing to compare to. I would hope to be able to have Hospice in my home. I understand that you sign up for 6 months. Best of luck. Hugs♥

  • Cassandra Geary

    Thinking of you. So glad your mom is close. Animals are so comforting.

    Cassie

  • Kathleen Hoffman, PhD

    Thank you for sharing this with us. I’m so happy to know that your mom is closer to you! That is so important. I’m also glad you have Seth. I’m thinking of you, Kathleen

  • Craig

    I’m glad there’s something else that has hope of helping with the brain mets, and I hope circumstances evolve to let you to manage as well as possible for as long as possible.

    And for today, I hope you can enjoy the sight of today’s heavy white snow . . . and not having to shovel it yourself.

    Best hopes,

    Craig
    in PA

  • Kim Flatt

    You’re such a brave & honest woman, Jessica!! Your Florida family loves you & Seth more than you know!!!

    Kimmy

  • Mary Ann

    Jessica, thank you always for sharing your story. My hopes for you are the same as yours. I’m sorry for your suffering and worries, and hope that joy always finds its way in, every single day.

    Spring is coming and some fresh, warmer air will soothe you. I know it does me.

    Prayers to you and your loved ones. I hope your new home, close to your mom, brings you more comfort than you could have imagined.

    Mary Ann

  • Sabina

    Hi Jessica,

    Before giving you my comments on this blog, I just want to say I’m glad you liked my comment about “your old man” Shadow. I always read and appreciate your responses to me, even if I don’t reply to your replies.

    Above you said you sometimes “… don’t have the energy or desire to lie when they innocently ask, ‘How are you doing?'”. Good. Pretending to be “okay” when you are not just drains your energy and you shouldn’t do it. The way I see it is this. You are the one going through this shit day in, day out. The very least your healthy friends and loved ones can do is put up with a less-than-sparkling Jessica, or a bit of totally justifiable whinging. From what I’ve learned about you from your blogs, you don’t complain anyway. During the course of your illness, you may have discovered one or two friends/acquaintances who are uncomfortable with your condition. Most people acquire one or two fairweather friends who find excuses to be elsewhere when the going gets rough and you could use their support. Do not encourage these types to hang around by pandering to them. I jettisoned one of these last year and feel so much better for it. Wish I’d done it a lot sooner. Don’t drain your batteries trying to shield your friends and loved ones from your worries or bad days. So long as you don’t get carried away and act mean if you are having a really bad day, they should be able to handle it.

    DIY projects are fun aren’t they? I understand how irksome it must be to no longer be able to do the hands-on stuff like you used to. But you can still do the research and visit the shops, showrooms, hardware and garden emporiums with Seth. Finding and gettng the right stuff is a vital part of the DIY process. And you can pass the Phillips head screwdriver AND SUPERVISE of course. I don’t know Seth so I have no idea how “handy” he is (no smutty pun intended 😉 ) but some men need close supervision when installing or assembling anything. I remember helping my local handyman to assemble my newly purchased red cedar garden swing. I saw it in an outdoor furniture catalogue and fell in love with it because the back of the seat folds down to form a double bed so you (and a skinny partner) can lie perfectly flat and nap. While visiting the outdoor furniture showroom, I tried to convince the salesman to sell me the pre-assembled swing on display, but he refused. So we loaded our flatpak onto the handyman’s trailer and I mentally steeled myself for what was to come. We unpacked the box and passed the first hurdle of no missing pieces. I insisted we count all the pieces and check them off against the diagram before we assembled anything in case it had to go back to the shop. I also made sure all the small pieces like nuts and screws were counted and carefully placed into separate small bowls so none would be lost in the grass during assembly. Sadly, for a handyman, mine was not very good at reading instructions or following a diagram. Thank goodness I was hovering in between making cold drinks and snacks (only one set of powertools, so I couldn’t do much else) because he was about to screw one part of the frame on backwards. I found this out when I heard him grumbling that A didn’t fit properly against B, so I decided to check the diagram. I showed him his mistake as gently as I could, knowing that male egos bruise easier than an overripe plum. If he felt humiliated, he might botch the job entirely. Once fully assembled, I made sure to lavishly praise his tool wielding prowess and we admired “our” handywork. The result was pretty neat. After using the swing a couple of times, I added some improvements of my own. I bought a large heavy duty shadecloth for $20 to drape over the small canvas capopy that came with the swing. The shadecloth is large enough to come right down the back of the swing and about half-way down each side and the front, providing excellent shade on even the sunniest days. No need for sunglasses. And… I also bought a king-size mosquito net from a camping store which completely covers the swing and can be pegged closed with simple plastic clothese pegs for a complete seal. Once I hop inside the net, I am totally coccooned in a glare and bug free environment. An outdoor bed fit for a Queen. There is only one final missing component… peace and quiet. I’m still working on finding a way to get rid of my noisy neighbours who always seem to want to mow their lawn or make some other kind of ruckus just when I’ve brought out my pillows, drink and book. Maybe your family could rig up a nice comfy outdoor bed for you for when you visit the farm. Anyway, there’s a whole world of fun products out there for you to research. And once you find what you want – if you can’t afford it, you can research the best way to achieve the same result for less cost.

    Uh oh. As you can see, I like telling stories. Enough from me for now. Oh, I have one question. I believe we belong to the same online social club for rabbit lovers. What are the names of your buns so I can send them a “buddy” request. I realize you may not be spending much time there any more, but I would still like to do this.

  • Jacki

    Jessica, I am so happy for your family! Mommies are awesome to have close-by! Queen Anne’s county is quite lovely, I think your mom will love it. May I ask what area she is in? (If that information is something you don’t feel comfortable sharing, I apologize.) I totally get your love for animals. I am involved in rescue. In fact, one of my neighbors who is fighting liver cancer, took in a stray cat that I have acquired. So, if the new farm needs a spayed and vaccinated feline mascot, just let me know…..lol!
    My father just completed his first treatment for his IIIb lung cancer. He was depressed after coming home from Baltimore, but it turns out he decided to abruptly stop his Oxycontin! He is much better since that has been straightened out.
    I read a wonderful piece in The N.Y. Times last month. I don’t have the link, but it was entitled “How Much Time Do I Have Left?” By Paul Kalanithi. He is a 36-year-old neurosurgeon that was recently diagnosed with stage IV lung cancer. I imagine you have already read it, but if not, it is truly inspiring. Take care!

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