The Balance Between Good and Evil

The good news...the red circles shows
more reduction in my Antigens

I have had a few data points since the last update. First, we did more antigens. Antigens 15-34 and 27-29 measure breast cancer tumor proteins in my blood. I feel the charts say it all. They went down by half again! I think we can definitely hang that drop on the Lynparza. That’s great news.

Then I got the CT scan.

Well, it wasn’t bad news. The liver seems to be improving, for sure. Many tumors smaller, nothing bigger, nothing new. Ok, I’ll take that.

My chest looks much better post-radiation.

Bones, on the other hand...well, those bones.

There is diffuse sclerosis of the osseous structures which is worsened from prior examinations. Additionally, a few of the more focal appearing sclerotic metastases appear mildly increased in size and density from prior examination. This is a nonspecific finding by CT and could relate to treatment related changes/partial healing response. Osseous progression of disease is difficult to definitively exclude.

Translation: It looks like there are more numerous and more intense bone mets, but it's still hard for them to decide if they look active because they are coming or going.

The rest was unchanged or normal. But there was another troubling finding:

There is new subtle diffuse groundglass opacity throughout the lungs which may relate to a mild acute infectious/inflammatory process including possible drug reaction.

Translation: My lungs may be developing a bit of inflammation due
to the drug, most likely. And yes, I have had symptoms, including an odd spasmodic cough.

Well, that’s not great news. And it came just as I was ready to give up. I struggle so much with Lynparza. I had had yet another bout of painful cystitis -- I have one every other day -- and I have a version of chronic anemia that is odd and annoying. I was tired just walking up the stairs, which may be from the drug as well. There were other symptoms. I was a bit afraid to go out.

My onc completely understood. She knows that this is taking its toll. She's concerned about how I'm feeling. Not only that, but she floored me by telling me that Astra-Zeneca is calling to find out how I'm doing as well. Imagine that, so-called Big Pharma, taking a somewhat personal interest in my success. How can I not give it another go?

Life is a balance, like the
balancing rocks along
the roadsides of Northern Ontario.

The doctor wanted me to take a break for testing, and I was more than happy to. I’ve now been off for two weeks, and I am beginning to recover. (I still want to nap today!) I have seen my urologist: everything is as it should be, so we just have to manage the symptoms. We're trying some different strategies. In some respects, the drug is aggravating something I would deal with when I'm 80; it's making it all happen now due to hormone changes. I have to figure out what I would have done then, now.

I will see a lung specialist for the ground glass, and a gastro doctor, just to see if the chronic tightness in my tummy when I eat can be improved easily. I’m already breathing better, so I think we can attribute the appearance of my lungs to treatment. I admit I'm able to eat better, so it's still the drug. But let's see, just in case.

We weigh costs and benefits, the good with the bad. No treatment has made much progress in over a year. I think we can manage the bad of this treatment, at least I’m going to keep trying, on a doctor-approved lower dose. I'm also going to go easy on me, plan some fun things to do, some travel, and live the rest of my life. The last quarter wasn't great, and I want to catch up with life again.

Cancer Cures, Hope and Ethical Reporting

A Real Cure? Really?

I think I’ve joined all of the metastatic breast cancer communities I can find. They are wonderful, so helpful and full of support and information. The sisters help so much -- we share wisdom and tears every day. But we are a jaded lot! We see people posting baking soda cures and miracle clinics in Germany, and we hop on them pretty fast. We guard our vulnerability to false hope. There are many evil folks making money on false hope. Last week's news was different; yet events still provided a serious challenge to my well-trained sense of journalistic ethics. 

Ages ago, I graduated from Michigan State University with a bachelor's degree in journalism, and the skills I learned never failed me. Among the great classes I took: how to spot a fake research story, also known as Advanced Reporting. “Be skeptical,” they taught me; “ask if the sample is large enough, if the study is controlled by an untreated group, and most importantly: follow the money. Who paid for the study, and who profits by it? If it looks too good to be true, the money will tell you.” That tutelage really kicked in last week.

The Miracle Cure

 T-cell Therapy Process
By Simon Caulton - Own work, CC BY-SA 3.0,
https://commons.wikimedia.org/w/index.php?curid=29559885

Many of you saw the news story: a woman has been “cured’ of breast cancer through T-cell immunotherapy. Thank you all for not immediately copying me on it. The National Institute of Health (NIH) released the story, and brought our hero, Judy Perkins, in front of the public, causing a huge ripple through our various communities.

Here are several versions of her story; note how different each are:

CBS News:

https://www.cbsnews.com/video/how-personalized-immunotherapy-saved-one-woman-from-cancer/

NPR.org:

https://www.npr.org/sections/health-shots/2018/06/04/615673436/therapy-made-from-patients-immune-system-shows-promise-for-advanced-breast-cance

The BBC:

https://www.bbc.com/news/health-44338276

The National Institute of Health press release:

https://www.cancer.gov/news-events/press-releases/2018/immunotherapy-targets-breast-cancer-case-report 

The Guardian:

https://www.theguardian.com/commentisfree/2018/jun/06/cancer-cure-immunotherapy

One of the better blogposts:

https://www.linkedin.com/pulse/metastatic-breast-cancer-apparent-triumph-thoughts-from-o-brien/?published=t

Ok, now here’s a quiz for you: 

• What is the current success rate for this treatment?
• What is the sample size of the study?
• How does it work?
• What are the risks?
• Who benefits from this story going public? Where’s the money?
• Knowing me, which is my favorite story, journalistically speaking?

First, Some Observations

Judy Perkins is a pioneer and we are proud of her contribution to saving our lives. We are so happy for her. But, with my finger on the pulse of our mood, I noted how this affected everyone. The old warhorses like myself pumped out a few cautions, but this news story changed us. It gave us hope. I am struck at how much and how quickly it affected some of us. This is one of our forum sisters:

I really need to vent. I’ve been telling people about the exciting and hopeful results of Judy Perkins’s trial, and so often the listener tries to burst my bubble. “Yeah, but we’re so many years away from that being a reliable treatment...blah blah blah.” People can be a great comfort, but I’m so disgusted with people lately. It’s the FIRST time I’ve had HOPE in YEARS. It’s a great feeling, and I don’t want anyone to take that away!!

I have to admit this: I’m one of the skeptics. I reminded the sisters that we’ve seen this before, with the vaccines that didn’t work, and the targeted therapies with big side effects and low response rates. This is just a case study and a small sample. I explained that this is the therapy everyone is struggling with: solid tumors are hard to address with T cells in the body systems. I reminded my sisters that we can’t call anything cured until about a decade out. Cancer is a sneaky thief that knows how to hide out for so very long, that two or three years is a very short time to trumpet success. To her credit, Judy herself says the same; she did not call herself cured. It was the director of the NIH who used the term before Congress.

We are very sensitive about the word “cure.” There are no known cures yet. Time tells us cancer is cured. However, they do use the term for other cancers with this therapy.

Quiz Answers

In the letter published in Nature Medicine, we learn that Judy is the only one of three patients to survive. One of our sisters died from the disease, without adequate response, and one developed a staph infection. Judy tells us the path wasn’t simple either, from her posts over the years. Her situation was dire, but the response was quick. She reports being on no therapy right now, which is very much Mets Nirvana: being normal again, even for a time.

Right now, T-cell therapy is FDA approved only for certain leukemias and soft tumor cancers like lymphoma. The price tag is staggering: about $300,000 to $500,000 if it works. (This is considered a fair price, given the expense of continued treatment. They are probably right.) The process involves removing a sizable tumor, looking for successful white blood cells (Tumor Infiltrating Lymphocytes or TILs) that attacked the tumor, sequencing their genes (much like my genomic study) and growing billions of the successful cells, returning them to the body to use its normal systems to fight back.

You can see where this would work for soft cancers; they are already in the blood and lymph systems, so they are easy to find. But is there really hope for the more difficult cancers?

My favorite article is the Guardian, as well as Katherine O’Brien’s blog post on LinkedIn, because they offer us a realistic viewpoint; one with greater integrity from an ethical standpoint. There are many who do not respond across all cancers right now; the response rate over all cancers is around 15%, but the sample is so small there are no conclusions to draw yet. There may be a risk of a life-threatening immune response from the body called Cytokine Release Syndrome (CRS). My CRS-like response to Kadcyla was the impetus for obtaining a second opinion from MD Anderson. My second opinion oncologist said CRS is much, much worse -- and I thought I was dying, so I can only imagine how much worse CRS is. One of my sisters reports that her cerebellum was affected by an earlier study, and she is permanently disabled. This is an advance but it’s fairly tricky, no matter how much hope we gather from this story.

So, why did they publish this story now? Judy does truly represent a breakthrough, for one. She is a first. For another, the National Cancer Institute and the National Institute of Health need better funding from Congress. Having a direction for treatment and real hope for advancement, gives Congress impetus to fund more. I truly hope they do. Please be sure to encourage your congress member to fund metastatic research.

Historical funding for NCI. Source, American Society for Clinical Oncology, CCA Report 2018 https://www.asco.org/sites/new-www.asco.org/files/content-files/research-and-progress/documents/CCA-2018-Report.pdf 

What about Hope?

Despite my misgivings, I, too, have been changed by Judy’s story. Maybe there is hope. Maybe I’m not dying quite so quickly as my deepest fear suggests. Most importantly, maybe there is hope that I’m not going to be in misery for the rest of my days, trying to survive instead of live. 

I’m almost surprised that I feel that way, given my realistic point of view on life lately. I may even explore joining the next phase trial. Meanwhile, I’m no longer posting cautions about this study. We deserve some hope.  

Markers Go Down, Myths Go Up!

Update

My first real data since radiation and Lynparza is in and it is remarkable. The tumor markers in my blood, known as Cancer Antigens (CA) 15-3 and 27-29 are steeply down. To fight cancer, we produce antigens, and these two have been  identified with fighting breast cancer. The greater the number, the greater the concern. My last set before this, as you can see, seemed dire, with results near or above 7000s. Of course, normal levels are under 35 and 32, and mine are still in the 800s, but the tumor markers in my blood have gone down by the thousands. 

My historical tumor markers for  CA 27-29

Is this the radiation? Is the Lynparza working? Is it the unreliability of the test I have been warned against in every previous draw? I’m not really sure, but I am happy to see this; it’s the first decline in my tumor markers since I received my stage IV diagnosis.  

The Lynparza is still a bit tough, but some of the difficulty has evened out. I still have an ever-present tendency toward cystitis and UTIs, and a strong and rather disgusting taste of metal about three hours post-dosage. Because I’m tracking these things, I know that the pH of my, um, various fluids becomes rather acidic at that point, until I am able to flush or change it. (Ironically, hydration is a poor solution to the problem — water tastes like battery acid.) Avoiding UTIs is like balancing on a pH tightrope, so I now have prophylactic antibiotics and Cystex, which help.

My historical tumor markers for  CA 15-3

My bloodwork shows I am clearly and chronically anemic, although my numbers seem to have evened out. I also end up taking a nap at least once a day. But this fatigue is a little different: while I feel fine and even energetic just sitting, I wind myself walking up stairs. My red blood cells can’t seem to get oxygen to recover from effort. I'm not as tired as I am unable to do things.

Looking for Support  

I had joined a support group for those taking my drug, but I left it when it was suggested that we shouldn’t post negative outcomes. Apparently, some folks are really enjoying success, and they don’t want to hear from the nabobs of negativity (Spiro Agnew reference for you history buffs.) I’m just not one of them, or at least one with an easier path. I am not wholly alone, but the cheerleaders of the group will brook no negativity. I rely on support groups for learning and camaraderie, so I left. I’ve been invited back, but I haven’t rejoined as of yet. I’m just not sure I want to criticized for honesty by the passive-aggressive. I have a few other forums to fall back on.

I did call Astra-Zeneca, as I mentioned, and learned a bit from them. Their pharmacist was right: some of the symptoms got easier about six weeks in. I’m not going to be as critical of “big Pharma” as I used to be; they have been very helpful overcoming some of the difficulty with this drug. I will still be critical of the hedge fund owners that are jacking up prices. My drug is in the middle of the new therapies: only $13,000 a month. But hey, insurance covers it, once my out of pocket is reached. And AZ may help with that. I am grateful.

Mythbusting for Cancer

That brings me to my subject today: cancer myths. I see so very much quackery out there. And the stuff lands on my Facebook timeline regularly. Someone reposted the “there’s a cure for cancer but Big Pharma won't tell you to make money” nonsense again. Other times, I see miracle cures through diet (no sugar, no phytoestrogens, take baking soda…no asparagus? I love asparagus!) Although I didn’t challenge the latest Big Pharma post directly, please let me emphasize that most of this crap is pure drivel. In a sort of rebuttal, I posted this wonderful article:

http://scienceblog.cancerresearchuk.org/2014/03/24/dont-believe-the-hype-10-persistent-cancer-myths-debunked/

I like the article because it links to the science behind each debunking. No, diets don’t cure cancer, and there is only a weak relationship to prevention (like alcohol and breast cancer.) Big Pharma isn’t sitting on some miracle cure for cancer in order to make money. Cancer can be prevented if you get a mammogram. (You aren’t preventing — you are detecting early, which may or may not help you survive.) I see these almost every day on my Facebook timeline or worse, in Messenger. My heart hurts from the number of good people I know who fall for it.

Interestingly, one of my Facebook friends brought up the positive outcomes she’s had with a no-sugar diet. The blogpost specifically refutes that outcome, although I’m sure eating well helped her grapple whatever cancer she fought. But the words “a tumor is sugar” is a gross misstatement of what a tumor is. A cancer tumor is a grouping of cells, the descendants of perhaps one evil stem cell, that have (usually set of ) specific genetic mutations in their DNA, causing them not to die as they should, but instead turn into voracious, rapacious killers, replicating and demanding resources, converting others to their evil ways. There are between 100 and 200 human cancers out there, depending on whether you are in the US or the UK, and their different definitions. There is no one solution for any of them, sometimes no one solution for even one of them. 

And as proof that Big Pharma doesn’t sit on cancer cures, there is one that can be cured, potentially. Childhood leukemia, considered a soft tissue cancer, has a new treatment the holds the potential of a real “cure.” There is also risk for a major set of side effect: reactions that are nearly as lethal. There is an ironic twist, however; it costs nearly $500,000. Now, that’s how you turn a profit on a drug! (Note: this therapy, called CART-T cell, is a long way off for solid tumors like breast cancer, if we can make it work at all.)

As a reminder, I expect no cure for my metastatic cancer, but even in earlier stages, “cure” is a misleading outcome. Regardless of any treatment, at least prior to the leukemia cure, any of us who develop an early stage cancer of any kind faced a 30 to 40% chance of developing metastasis, sometimes years or (in my case) decades later. A large portion of metastatic cancers are detected first at this stage as well. We don’t have a good handle on the numbers and the outcomes, but we know that 609,640 US residents die each year — and of those, they die from complications of the cancer that kills: metastatic cancers. Read more: https://seer.cancer.gov/statfacts/

This is especially true of solid tumor cancers like breast, colon and so on. No one has a handle on a specific why, partly because there are 200 cancers that may do this awful, metastatic deed, and each behaves so very differently. And once you are metastatic, they stop trying to “cure.” The doctors move, instead, into survival mode, seeking to extend the patient’s life with treatments that will reduce the cancer and tame it into submission for a time. New therapies that target the genetic mutation in the cell are becoming commonplace. Time will tell (about 10 years, to eliminate short term bias) if they help.

I want to make it clear that cancer treatment is no longer just nausea, chemotherapy and hair loss. It might also be pills, a series of weird side effects (SEs for short) like cystitis, hand-foot syndrome, fatigue, anemia and vulnerability to pathogens. We may also extend our time considerably — or not. Nor is the extension a walk in the woods. It all sucks so far.

We are making progress, but I honestly wish we had Star Trek technology. If we could transport, we could also transport cancer cells into oblivion, cell by cell. No more broad brush strokes that affect everything. 

Now that would be a real cure.

Lynparza -- Still Parsing!

It was quite a journey, this new medication! If it works (still no objective data) it will be so worth it, but it was a struggle reaching this point.

After about a week on the first round, I developed a fairly painful UTI, if you recall. Then my numbers took a nosedive: white counts down, red counts down, but especially a hemoglobin below 9.0, when the average is 11.0 to 13.0.  The good news was that my liver enzymes and calcium were both looking better. Calcium blood levels are a sign of cancer activity; I hadn't seen anything in the normal range for years.  After I got my UTI treated, and because my hemoglobin was so low, my doctor said "take a break." It took 2.5 weeks to recover sufficiently.

Santa Elena Canyon on the Rio Grande,
Big Bend National Park

Well, that was just fine, because I managed a trip without meds to Big Bend National Park. Ah-mazing, and the joy of being there with nature and beauty is still with me. I guess all of my trips to wonderful places create a space in my heart, and I treasure them in memory as much as I love being there.

It was hot there: 102°F. Yet somehow, I found that temperature to be fine. I couldn't hike far; I couldn't do much at all but drive or ride, but it felt comforting to be so warm, somehow. The third day was slated for a trip to Marfa, home of aliens and artists, but a haboob made the trip a bit fraught. We topped off the trip with a visit to San Antonio, but we ended up celebrating our daughter's birthday back at our Texas home, Cedar Park, enjoying Ready Player One at the Alamo Drafthouse. My appetite and energy were still a bit impaired, but all of this trip spent without major side effects. It was a mini-blessing.

As soon as I returned to taking the Lynparza, one week to be precise, the UTI hit again. In fact, for the next three weeks, I could tell you the exact location between my right kidney and everything that goes out the door from there...it was all inflamed and painful. I visited the doc but she really pushed for me to stay on; my bloodwork was within parameters. That calcium and those liver enzymes looked so promising.

But three weeks of pain had me at that point I get to so easily these days: how much of this is worthwhile and meaningful? All of my issues so far seem to point to my medications, not my cancer, as their source. I am truly miserable at times, and this was another dance with the devil. My doctor had referred me to a urologist, though, so I had to hang out. I had to keep trying with the meds.

I began to doubt that I could.

Meanwhile, my bloodwork crashed again. Just as it did, I went out for a few hours one night, and came home with something bacterial. I was supposed to be traveling again that week, but the numbers were dropping even lower, except for the hemoglobin. I was in cystitial pain constantly. I had to make a decision: risk traveling 800 miles for a very important event for someone I truly loved, or hunker and nurse my condition, waiting for the urologist. I had just a few days to cancel without costing huge amounts for my hosts (I hope) and myself.

I gave up trying to travel. Instead, I connected via video during the reception. That helped me feel less piteous. But I was determined, as well. I could not live like this, long term. First, I began a hydration regimen: over 100 ounces a day. That wasn't very comfortable either, and definitely not conducive to travel.

Nerd that I am, I began to measure everything. I ordered a home testing kit. I watched my pH, and measured the nitrites (a sign of bacterial infections) and the leukocytes. Sure enough, I was off-the-chart acidic, with white blood cells present constantly. No wonder I was in pain. I took readings about four times a day, and recorded them with photos for the doctor. Yes, I am a nerd. Data rules.

I reached out to forum sisters: had you had this problem? Not too many, a rumor of one or two. No great ideas for handling it, except one, by a newbie with her spiffy packet they send you: call AstraZeneca. I began to adjust my meds on my own: instead of taking two twice a day, I took one every four. Hydration, rinse, repeat. The adjustment meant more time spent tasting metal, but less urgency and sensitivity.

I called AstraZeneca and talked to their pharmacist. My problem wasn't a common one. Adjusting my dosing schedule was better than not taking it. And while this was an unusual result (yeay, Josie and her side effects!) he had noted that other side effects encountered initially seemed to ease off after six to eight weeks. The conversation had the effect of a pep talk with me. I kept on. Baking soda water, meds, Pantaprazole again...and I kept adjusting.

And then, just in time to see the doctor: voila! Not so sensitive or painful. Still acidic, but not as bad. Bloodwork coming back up, at least a bit. (Yes, there was a correlation between bloodwork and pain. I have no idea why.)

Here's where the urologist was awesome: she looked at my data (along with an ultrasound and other data points) to make a diagnosis. We came up with a plan, and I am overall doing better. Less cystitis (although I'm afraid it may return, deep down) but still lots of fatigue. The fatigue is odd. I feel fine until I exert myself in anyway, then I get winded. I suspect the hemoglobin could be better, so I'm working on iron intake.

I am once again feeling more like a human being. Impaired and limited, but human. I still won't go out much, I lean away from sick folks, and I still won't have much of a party life (ha!), but I am not in constant discomfort. That's good.

We will learn if it's working in June. Fingers crossed.

Parsing Lynparza, Update

I've now been on BRCA-inhibitor Lynparza for three weeks. Scans won't happen for another month or so, so I don't know if it's working. Here's what I've learned so far:

• Energy is a little better
• Appetite is worse, to be honest. I eat three bites and the knot in my tummy says "Full!"
• GI is really minimal, but still a thing.
• I had another UTI, probably medicine-induced (Stay hydrated, travellers!)
• I have a somewhat funny metallic taste that lasts for a few hours after each dose

I have to admit that the taste one, for the rest of my life, would be a bit unfortunate. The possibility does exist that I will get to taste everything weird from now on. But it's nice not to have hand/foot battles, and I've done some walking and -- gasp! -- I even golfed indoors one day.  The UTI was a setback; they seem to be getting worse and more painful.  But it was cured quickly enough. I wish they'd prescribe prophylactic meds so I didn't have to wait. I know what I have, but they don't do that anymore.

Mountain Laurel smells wonderful

The radiation worked well enough, but not completely, so far. We may still see some more improvement; I still have some healing to do. But my skin looks and feels quite promising. The skin is my visible connection to the disease; my daily reminder, so it's encouraging to see improvement.

The other issue that needed to be addressed was my thyroid medication. I'm back on traditionals. I have no idea how it's going either, but since I feel better and my hair looks ok, I'm guessing I've returned to a more normal response.  I plan to try to move toward T3 dominant treatment when I can be monitored more closely.

Things to look forward to:

• RenFest tomorrow for a short bit
• A trip to Big Bend National Park in spring; driving, but that's fine.
• Wildflowers and migratory birds -- there are tons here. Added a Canyon Wren to my list.  And this lovely mountain laurel, that smells heavenly. Stop, smell and listen, folks. You never know. 

Parsing with Lynparza

The BRCA2 Mutation

I have finally settled on treatments and calendars, at least mostly.  My genomics testing says that the things that are most likely to be effective are PARP inhibitors targeting the BRCA2 gene mutation that I have, and that my cancer shows as well. My doctor, however, held out for a FISH assay of the liver tumor, because the original HER test was equivocal. The FISH Assay is negative. That means I am now HER2 negative, no more doubt. 

So, what will work? The genomics study says that PARP inhibitors should. They target BRCA1 and 2 damaged cells, causing their death without reproducing. From BMC Medicine:

"Poly(ADP-ribose) polymerases (PARP) are enzymes involved in DNA-damage repair. Inhibition of PARPs is a promising strategy for targeting cancers with defective DNA-damage repair, including BRCA1 and BRCA2 mutation-associated breast and ovarian cancers." Read more at: https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-015-0425-1

The Lynparza side effects not unlike the ones I've been dealing with already (I've bolded the ones I deal with now):

• A risk of bone marrow problems, including a form of leukemia
• Nausea or vomiting 
• Low number of red or white blood cells
• Tiredness or weakness
• Sore throat or runny nose (buying stock in Kleenex soon)
• Diarrhea
• Joint, muscle, and back pain
• Headache
• Constipation
• Changes in the way food tastes
• Loss of appetite
• Mouth sores (yeay, Biotene)
• Respiratory infections 
• Changes in kidney function blood test
• Low number of platelets
• Indigestion or heartburn (Also, stock in Alka-Seltzer and Phazyme)

The ones I appear to be giving up are dry eyes, and hand-foot syndrome. This syndrome happens when your hand and feet capillaries break down with the chemo, and was becoming a bit of a concern, although I fought it off with Udderly Smooth cream. But I am likely to have some of the numerous GI issues, and I'm not crazy about the joint pain either -- I'll bet that's related to the low blood cells. I am worried about a rehash of the Kadcyla. But let's see what happens. I corresponded with one woman who had none of these but some energy problems. At four naps a day (Ok, that's a little better with better thyroid function), I can relate.

Speaking of thyroid, my TSH was recorded at a record 45 a few weeks ago (it should read 1 or 2), so I've switched meds to the old synthetic meds. It appears to be working at the moment. My numbers are heading down, thankfully.

I should be able to begin the Lynparza when the insurance company clears the way. It's two pills, twice a day, no break. I'm hoping to be starting next week, mid-week. I promised to stay in Michigan for side effects and doctor monitoring. But after that, I am Texas bound, if all goes well enough.  Hell, even if it doesn't. I can't stop living.

What scares me now? Well, aside from the usual new med anxiety, I looked at my Explanation of Benefits, currently pending with Blue Cross Blue Shield. That genomics test cost $8100.  It will be totally worth it, if this works. But if I have to foot it myself, that's the end of my savings. (Yes, I know, I still have savings. But I also still have credit card debt, so it's not a plus, really. Being chronically ill in America means you'll die poor. The end.)

Meanwhile, my study also revealed something else: I have the genetic mutation associated with Marfan Syndrome. It's autosomal dominant, and often inherited. My daughter has already paid it's awful, demanding price, but I'm worried for the rest of the family now. Even if someone doesn't develop Marfan's they may develop familial aortic dissection -- basically your main artery blows right out of your heart, like a hose out of control. That happened to my grandmother, but she was in her mid-70s...I wonder how many more of us?  Grandma, I love you, but I think you may have lost the gene lottery and passed that on.

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Ode to the Caregivers

This is Thursday of an extra long week. I’m finally getting my radiation treatments, and that’s going well. I’m making friends with my fellow travel companions on the cancer journey; with radiation oncology, you tend to see the same people everyday, so you may as well have a party while you’re there. The doc thinks I’m going to have quite the sunburn, but the chest was already red and angry; I think there’s an improvement over no treatment.

The reason the week is extra long isn’t because of radiation, however. It’s because my caregiver -- my husband -- is taking a week to get things in order down with our RV. He was worried about leaving it alone, and he was right to do so: we ended up having to have repairs done and things that needed attention right at that moment.

But my hubby has been my constant companion since I retired. He has been right by my side. Things really stepped up when the Kadcyla made me so sick. Suddenly, I was a bit helpless, and even now, I tend toward reclusiveness. He’s doing my dishes (doc orders), cleaning a bit, and even shopping sometimes for me. On the long trips, he has to do most of the driving now; I get fatigued too fast, so three or four hours is all I can do. I sleep a lot now. (Those who know me know that this is a big thing, not being able to drive. I love to drive.)

It was tough to say goodbye. He took the train down, in order to leave me the car. It was fun sharing the trip by maps and geopositioning apps. But I miss him, and there’s just no denying that. We are cuddlers (sorry hun) and we are physically close often. I cook for him, but I have much less interest in cooking for just me. I’ve been trying to comfort myself by having the foods he’s not crazy about while he’s gone. I keep busy. I can handle this just fine. He deserves to be free of responsibility -- at least, this one -- for a time. He needs respite, too.

Our caregivers are amazing people. I am lucky to have mine, and don't I know it! But I also see the toll this whole misadventure has had on him and my daughter. It’s almost as hard to be the caregiver as it is to be the patient. Yeah, I have awful days and big problems, but he has the weight of the world on his shoulders and I can see it in his eyes. The same for the kinder, although she swears she’s fine. I still know that she’s thinking about things a woman her age shouldn’t have to contemplate.

My friends (if I may) on Imgur have had a discussion about this and it really got me thinking. Someone posted, “Be strong” to a newly minted caregiver. I know every caregiver wants to be. But I posted a somewhat contrary (though not entirely) opinion, that said, to this effect: “Nah, be you. Tell me what you’re going through. I already know anyway, and I don’t want some “positivity” barrier between us. Don’t worry about talking about death and dying; about how you hate the yucky things or how frustrated you are; you don’t have to put a happy spin on things. I’d rather share the real journey, whatever it is.”


Don’t misunderstand: I don’t think anything is to that point yet. Yes, the liver is now involved (liver biopsy next week.) As I mentioned, this is a met that can lead to...well, eventually, yes, to death. But I still think something is going to work; I know many people on my forums have liver mets and brain mets and they’re “not dead yet” as Monty Python would say. But, as some say, “sh*t’s gettin’ real.”

So every opportunity I get, I push that hubby of mine out the door. Go golfing, go to band practice, go have fun. Without me; without worrying about me. I’m fine. We’ll still have plenty to do together; there’s plenty of fun and adventure to work toward. It’s just more challenging, and you deserve a break from that.

Fellow travelers, love your caregivers today, but see if you can give them the day off. They deserve it. Caregivers, don’t treat us like china; we already know you’re suffering, too. We love you for that.

In fact, we could not love you more.