Let’s Chat, But Where Do We Start?

Dear friends,

Karen and I have quite a lot of information to share, so this will likely be a long post, and contain information that we’re not pleased to share. When compiling my thoughts for this post the list of topics kept getting longer and longer. We have many dear friends who are clearly in pain, just like we are, and there are lots of great ideas, and lots of concern. Because we’ve spoken to so many people throughout Karen’s battle, it’s hard to remember who knows what. I’m likely to cover a little ground we’ve covered before, but I’m betting that there will still be new information here for everybody, particularly since I’m sitting here at my desk and have test results and time to consider how to frame my thoughts.

To start, I’ll provide a quick summation and then a little blog trick called a “read more tag.” I realize not everybody wants all the answers, so will try to respect that, and you’ll have to click through for more information.

Karen is very ill, and her health has been declining, particularly over the last few weeks. The cancer is growing despite treatment, and the situation is rather urgent, all things considered. In this blog I’ll quantify that statement, talk about the treatments she’s completed, other treatments that might or might not apply to her cancer, how we’re coping emotionally, what some of our thoughts are, what we’re planning next, and as always, do my best to express my gratitude. I’ll start and end with that.

The outpouring of love and support for both of us has been awe inspiring. Words don’t always flow naturally for me, so I usually get stuck at this point. Even now I want to stop and use better words. But there’s lots of other things that need to be said, so I’ll move on for now, and come back to this.

If you read the next few parts, don’t stop until you’re done with the post. It’s not all terrible and bleak. I’ll end the post with some hopeful thoughts…

The Diagnosis:

You’ve probably heard Karen and me refer to her type of cancer as ovarian cancer, or perhaps primary peritoneal cancer, or even more generally as a gynecological cancer. The latter is probably the most accurate, since it is much more encompassing. We don’t really know where the cancer originated, but are pretty sure it’s gynecological in nature. If so, it’s really all the same to the docs when they are choosing conventional treatments. Chemotherapy that works on ovarian cancer tends to work on peritoneal cancer or other gynecological cancers (cervical, uterine, etc.). Karen was already stage IV when initially diagnosed late 2016. This means that it started one place and then spread to other organs further away. The cancer had already metastasized, and spread throughout her abdomen. The cancer had spread so significantly that they could not tell where it started, and lab testing has not been able to determine the origin with absolute certainty. The tumors they’ve tested show markers of being gynecological cancer, but don’t have sufficient exclusionary traits to nail down the origin. Testing indicates there is a 90% chance that it is a gynecological cancer.

So why is that important? The fact that they don’t know the cancer’s origin, for a fact, prevents Karen from getting into a wide array of clinical trials.

About Surgery or Radiation:

Our friends sometime ask whether they can remove all the tumors, or use radiation. Unfortunately, the tumors coat the lining of her organs (her peritoneum). Tumor reduction surgery combined with radiation (and/or chemotherapy) is performed when there are tumors that can be singled out, where the removal would be helpful. In Karen’s case, she has hundreds (thousands?) of tiny tumors coating everything in her abdomen like little polka-dots, plus an array of larger ones. The Cleveland Clinic did surgically remove any significant growth in April.

What the Recent Scans Showed:

Karen had a CT scan in August, and then had a new one a couple weeks ago. April of last year the surgeon very carefully removed tumors larger than a dime in what’s called a “debulking” surgery. By the August rolled along some had grown back to about 3/4″ or so (nickel size). The newest scan from December 19th showed that these tumors have now grown to around 2″, and that there are new tumors that were not previously singled out (just some of the polka-dots then), that have grown to over 3″, or just larger than a baseball. The size of any one tumor isn’t the worry, but the fact there are so many of them, and how fast they grew. I think that Karen’s doctor used the term “aggressive” to characterize this tumor growth.

The scans also showed a fluid build up in her abdomen called “ascites.” This isn’t worrisome in itself, but the tumors are growing, causing abdominal pressure, and the fluid exacerbates that. She has a small hernia that has progressed in size, but not to a level that causes concern, or any side effects or blockages. This hernia was probably a result of the surgery and made worse by the pressures in her abdomen.

Finally, there is a new dime sized mass in her chest area that may be cancer, but they don’t know conclusively, so plan to watch this on future scans.

The Symptoms Karen’s Experiencing:

The aggressive tumor growth is causing pressure in her abdomen. This is pushing up and making it harder for her to breathe, and making her get full more quickly when she eats. She is having some pain in her left and right side which she quantified at 5 on a 10-point scale. She still has a cough she picked up just before Thanksgiving, and when she eats she sometimes gets sick and throws up. We’ve reduced this occurrence by smaller more frequent meals. Over the last couple weeks she’s developed a general queasiness that reduces her appetite and makes her feel ready to throw up even when she’s not eaten. All in all, she is keeping most of her food down, and is throwing up every other day.

The fatigue has gotten a lot worse. On most days she forces herself to be up and doing things about the house, despite how she feels. Other days she is only up and around the house a few hours. A walk up or down the stairs can leave her struggling for breath.

The Newest Treatment Yesterday:

The doctor hopes to find a more traditional chemotherapy for Karen, to stop or slow the growth. We traveled up to the Clinic yesterday for Karen to start a drug called Doxil (the “red devil”), but Karen had an adverse reaction with muscle spasms and throat restriction. They cleared up the symptoms and sent us home, but the doc will start her on something new next Tuesday.

Keeping Up the Good Fight:

Karen is a bit depressed that she had a reaction to the drug yesterday, and feels like she failed somehow. I’m not sure if people can appreciate that feeling, if they haven’t gone through something like this. I’m sitting right next to her, speak with her about it, and still hope to gain more understanding of how to help her with it. When people battle serious illness, and a treatment fails, it can feel to the patient like a personal failure; Like they are failing those around them. So, what do you say to somebody in that position? Fight harder? You can do it? Stay Positive? Those are all things we want to say, but suggest that the patient can affect some sort of change, or places some other sort of burden on them. You shouldn’t start a sentence with “You should.” [See how it feels when I just did it?] That introduction to a conversation fails even normal litmus tests for effective motivational conversation, let alone in a situation like this. When trying to get a grasp on how I should express myself to Karen, or to our friends, and just now here for this blog post, I’ve come across an array of articles that have helped me. Here’s another one I just found that has some good information, and isn’t too long. Check it out here if interested.

Therapies In General:

I started to write about the therapies (conventional and alternative), but this seemed a bit tangential, so I’ll post that separately, another time. We’ve looked at a lot of them, and have opinions on them too. But that’s not really germane to this post, so it seemed better to set that aside for now. Please know that we are actively looking at these too.

What’s Happening Next:

Karen’s next treatment is Tuesday, but we don’t know the medication(s) yet. Like usual, her doctor has options lined up. The first is a conventional chemo of some sort to try to stem the growth. At the same time, he’s investigating another surgical procedure, more immunotherapy trials, and T-Cel treatments.

The surgical procedure he’s considering is hyperthermic intraperitoneal chemotherapy (HIPEC). This involves performing a debulking surgery with the addition of heated chemotherapy applied directly to the tumors topically, instead of intravenously. This allows the doctor to use a much higher dose of a chemotherapy since exposure is more direct, and doesn’t expose the rest of the body to the effects. This procedure has been shown to be more effective in some patients than in others, so the decision to proceed with this is more subjective. Before following this course of action a panel of surgeons will evaluate Karen’s case to see if the majority think it beneficial. The risk is that Karen would be recovering from the surgery for an extended period, and the aggressive tumor growth makes the risk to reward evaluation complicated.

The Cleveland Clinic has additional immunotherapy trials coming up early next year, and he’s looking at those as options. It’s a bit hit and miss with trials. Because of Karen’s other non-cancer conditions, she is automatically excluded from phase II and phase III trials. The doctor is ready to pounce if the right one comes up.

The next option is one that will take a larger commitment from us, but may also be the best hope. The T-Cel treatments are revolutionary. The other immunotherapy treatments we’ve discussed are one-size-fits-all treatments, and are more generic in nature, and less effective. There are several trials where the docs extract the patient’s own T-cells, grow more in a lab, and inject large quantities back into her. The human body does fight cancer, but in Karen’s case it’s not generating enough of a response. In the generic treatments the medications try to get the body to make more. In the T-Cel treatments the mad scientists take them and put them into the Xerox machine for her. Definitely mad scientist level here. They gather all the xerox copies and shove them back in to kill the cancer.

The down side to the T-Cel treatment is that it’s more experimental, and is out of state. The Cleveland Clinic doesn’t have this type of treatment, so we’re looking elsewhere in the country. I’ll let you know what we find. Karen’s doctor has corresponded with the lead researcher in one of the centers, and will reach out to see if he can get Karen into it.

In the Mean Time:

We’re a bit worn out, not always in the best of spirits, but doing as well as we can. We did find a local cancer support group, and intent to attend the next meeting to see what it’s all about. I can’t think of anything we need now, but know we have plenty of people willing to help when we do. Don’t worry, we’ll definitely reach out when we need. All your words of support are wonderful, and Karen gets a copy of all your heartwarming comments  to posts in her email.

Something Extra:

When I take Karen up to the Clinic, it ends up being just short of four hours each way. In an effort to make those trips more comfortable, Karen had me build a little nest for her in the back of my Explorer. The first layer is several MCR Medical brand kneeling mats duct taped together, with a thermarest camping mat on top of that, then a comforter, then a sleeping bag. I’ve offered to improve the next with mattresses or other things, but she won’t let me. Here’s a quick pic for you!

 

I planned to write about more things, but it looks like this post went a little long as it is. I’ll try to pick a few smaller topics and perhaps make a few posts next week. In the mean time, be safe over the holiday. Thank you for what you’ve done to make 2017 easier to handle. May 2018 hold better things for all of us.