From Bright Eyes, “We are Nowhere, and it’s now.”

In our wheels that spin around

As we move over the ground

And all day it seems we’ve been

Between the past and future town

We are nowhere, and it’s now

We are nowhere, and it’s now

You took a ten-minute dream in the

Passengers seat

While the world it was flying by

I haven’t been gone very long

But it feels like a lifetime.

In my pre-diagnosis life I was blissfully ignorant of a great number of things:

• Blissfully ignorant of the nature of cancer itself.
• Of the differences in stages. And just how different survivability levels can vary based on so many different factors.
• How the length of survival for terminal patients can vary based on so many different factors.
• How primitive diagnosis tools are when it comes to getting the right answer to apply the right treatments.
• How to react when someone you care about is hit with tragedy: I realize how often my default approach was avoidance because I didn’t know what to say or do. I have since learned how that kind of reaction feels to the person on the other side of things, and that awareness helps me to be more understanding of others who do the same.

And what is the biggest things that I have discovered about human nature over the last year? Just how often we tend to speak about the past and the future. Especially the future.

My kids tell me yesterday that they want to still do camp next summer, even though I will not be working. All I can respond with is, “Let’s see how things are as we get closer to next summer and go from there.” What I am not saying (although they are old enough to read between the lines) is that I don’t know for sure whether I will be here next summer, and if I am how healthy I will be.

My husband has noticably curbed any discussion of the future because he knows how much it hurts me. He is the only one. It’s just too habitual of others. The future is so much a part of people’s lives, that they can’t NOT talk about it. For my part, the sting is getting duller. For the sake of full disclosure, however, I will have to admit that I still haven’t let go of irrational resentment of older people. Especially those who complain about minor annoyances not realizing how incredibly blessed to still be here at all. Perhaps that will start to get duller as well.

In the world of today, I went in for a PET scan last Friday. Given my tumor marker spike just prior to and shortly after re-starting chemo, I wasn’t expecting positive results. I read it online with my husband at my shoulder for support in case it was really bad.

Short, vague, and to the point, it was like a Cliffs Notes summary of the highly anticipated suspense novel “What Happened in My Body During My Break From Chemo Recovering from Surgery.”

While the detail was sorely lacking, I was at least able to tell that at a minimum, my largest liver met grew from 3 to 4 cm in the past six weeks, alongside the 5 cm ovarian met growth from 7 cm to 12 cm.

Thisis is not exactly good news. However, for me the biggest headline was all of the other potential axes that could have fallen in that report but didn’t.

I am focused on the fact that other than the obviously not great factors above, there were a few silver linings here. There was no evidence of dramatic spread of metastasis through my peritoneam (abdominal cavity) or elsewhere in my body.

This was the third PET scan since diagnosis, and the first that didn’t mention “high FDG uptake” in my small bowel loops or near my rectal stump. Although the area around my ostomy, previously mentioned did still glow a little this time), the absence of the statements even dared to give me a small sliver of hope. This means that other than the travesty of my ovarian tumor growing like gangbusters, the HIPEC surgery did some good after all.

And that, along with my overall reduction in liver mets (17 removed in surgery) means that my gamble had some payoff to go along with the price I paid. If my ovaries had been removed like they should have it would have been a clear net positive.

In summary, there is nothing here so terrible that I am being told to pack it up and make final arrangements. For that I am grateful.

So now we have a baseline, as I continue forward into my next line of treatment and focus on the GINORMOUS next hurtle: Is my new line of chemo going to work? If it doesn’t, that will be very bad news. I have no second-line standard of treatment options, so standard of care would dictate that I go to end of line treatment intended to only slow growth and perhaps buy a few more months. This means that my real next step after this will be trying to get into clinical trials, before I am too weak to participate.

We will have a better picture in two months. Four more chemos. Enough to give it a chance to kick in and work, and to find out whether I can stave off of that next step for a while.

Of course, even as I type that, I know better. I know that there will be tumor marker readings to give me some clues. I know that if it isn’t working, my ovarian tumor could keep growing and cause more problems. I know that at any time, my two month reprieve could change direction.

I’ve added three new specialists to my team locally to address the ovary met- a gynaecologic surgeon, a urologist and a radiologist. They will attempt to work some magic next Tuesday to try to replace the nephrostomy tube with a stent and perhaps drain some fluid from the tumor for palliative reasons.

So there is definitely a lot still to happen. As I have learned, the picture can change at y moment. We never know whether the road ahead will stay straight or take a sharp turn.

As I alluded to in my last post, I am- in measures- beginning to accept the reality of my mortality. I have for now done everything that I can do. I also know that what is going to happen is going to happen. I am back to driving in fog and I need to make peace with the fact that I can hit a tree at any time. I am getting closer to that peace. At least I think I am.

In the meantime, I am continuing to try to savor today as much as I can, so that they do not become the 10-minute dream in the passengers seat alluded to in the opening lyrics from the Bright Eyes classic.

This is my story’s ending. I know that I can’t change it. But I have needed time.

I have needed time to absorb the shock.

I have needed time to grieve.

I have needed time to discover, in my own way, how to navigate this final chapter.

I have needed time to process what it means for MY story.

And finally, I have needed time to decide how I write my final ending.

This is a process, and may change as the circumstances change, but I suspect that I will be writing about this topic a lot as we move forward.

Tomorrow is uncertain, but I still have today. And my todays have been getting better since I started to shift my focus. I am absorbing myself into the moments. Playing poker at the casino. Singing along to a song with a friend at a Sarah Mchlachlin concert while my daughter sways with me. Board game night with friends when I am feeling up to it.

I will continue to advocate for as many more tomorrows as I can squeeze. But I realize that today is still very good. And when the indeterminate axes decide to fall? I can only hope that I will be strong enough to face them, and to have the best concluding paragraphs that I can still lift my pen to write.

No time

To plant our feet

These things they always

Come from nowhere

El Vy, “No Time to Crank the Sun”

“How are you doing?” my housekeeper asks. “You look good!”

I give him a quick update on the details of my hospital stay the week before last. I tell him that my ovarian tumor grew 5 cm in 6 weeks. I tell him that we switched to the second of only two non “last line” chemo cocktails available and that we are trying to sort out what to do next about the ovary tumor, assess any other damage done, and hoping that my cancer will respond to this new line of treatment.

He looks crestfallen. He was hoping for good news. A couple of months ago, he placed his hands on me and prayed out loud that the cancer would go away while I sat frozen like a deer in the headlights.

This had worked for others in his church, or so he had said at the time. “But you have to believe”. I guess that the problem is with my faith.

Juan’s well intentions aside, he isn’t the only one taken aback. Having a metastasis grow so quickly after my surgery, and ending up in the hospital with a tube running out of my back and another bag attached to that tube to carry around served as a jarring wake up call for me as well.

Seemingly overnight, my prognosis changed. Seemingly overnight, a few more simple little joys are taken away from me. No more soaking in baths to relieve cramping or nausea, no more massages, or dangling any more than my legs in a swimming pool. You know that feeling when you turn on the hot water in the shower and let it run over your shoulders and back? I can’t do that either because I have to keep the tube coming out from my kidney from getting wet.

Tomorrow’s PET scan will assess the full damage of the past couple of weeks, and based on the information I have, it’s likely that no good news will come from it.

What if the mets in my small intestines have exploded? I can’t take those out, as they are all that I have left. When they no longer work it will be the beginning of the end and I will get hooked up to be fed through a tube (TPN) for my last days.

That axe- as well as countless others- could fall at any time. How silly of me to think that any path along this cancer journey would be predictable. How silly of me to think that any next step that I take won’t crumble beneath my feet.

All of this has had me thinking even more than usual. I am coming to a slow conclusion that expectations are my enemy. No matter what I expect from here on out, there is a pretty good chance that cancer is not getting the memo. It’s going to do what it’s going to do regardless of what I am so bold as to expect or assume is going to happen.

When you expect that someday you will turn your head to the sound of a child calling for Grandma, you mourn the loss of that expectation as if you had already held it in your hands. And so I’ve been grieving the loss of these expectations of time, of plans, of future versions of my children as adults that I won’t see.

But when I linger here too long, mourning tomorrow, I lose sight of how shaky even TODAY is. In order to make the most of the days I have left, I have to force a change in perspective. I need to begin thinking less about everything that is being taken away. I need to think more about what I have today. All of the joys, the freedoms, the dignities that I am blessed with today are not guaranteed to still be with me tomorrow.

I am sitting on my back deck, watching the trees today. I am not in a dark, cramped hospital room.

I was able to go out to a concert last night, and to experience the communal joy that comes with a couple of thousand people gathered in the shared activity of enjoying a favorite band.

I slept in my own bed, and was able to get up and climb into my daughter’s bed for morning snuggles. I got hugs and kisses from my son and ate a good breakfast.

I catch my husband looking at me, trying to take me in and impress moments to his memory. I am blessed enough to know that love. I will never have to be alone in this.

We have friends and family who support us, and who have dropped everything to make sure that the kids are being taken care of when I have to go to a doctor’s appointment in Cleveland, or go to the emergency room, or have a night out with my husband.

It’s a beautiful day, and I have the luxury, clarity and energy to write this all down.

Today, I am wealthy beyond belief. And for each day left like this that passes by me? I will soak in all of this wealth as best as I can. Because tomorrow, the robber may come and steal it away.

I will eat the cheeseburger. I will have dessert. I will even have the occasional drink when I am not in active treatment. Because tomorrow lunch and dinner may be a tube.

I will take the trip. Because tomorrow I may no longer be able to travel.

I will say the thing out loud and in writing that I’m not supposed to say. Because tomorrow I might not be able to express myself at all.

I will go outside and stay outside when the weather is nice. Because tomorrow I may be confined to a hospital room or bed.

And as I do this, I find that in measures, I am becoming less angry.

In measures, I am coming closer to a place of accepting an early death. In measures, it is registering less as an injustice that I am powerless to bargain my way out of, and becoming more of a fact of my existence.

In measures, I am becoming less afraid of death, and more afraid of pain and suffering.

That doesn’t mean that I am done trying. I am just trying to find a mental loop hole to relieve me from struggling. I will need to be as free as I can from them, if I have to balance myself and continue to walk for as far as I can on this shaky ground.

Baby, I know death pro’lly hasn’t happened yet

‘Cause I don’t remember living life before this

And darling, our disease is the same one as the trees

Unaware that they’ve been living in a forest

Vampire Weekend, “This Life”

Part III- Your evolving story: Read Your Reports, Keep Documentation, and Ask Questions.

Scans

Before your diagnosis, if being strapped to a board and rolled into a dark tube was not on your list of fun things to do, I have bad news for you.  Scans are a part of your new normal.  CT scans are the easiest.  You will graduate to MRIs and PET scans soon after.

What most people do after these scans is wait to go see their doctor, who will then quickly summarize for the patient what THEY think is important (usually anything that says cancer).

What you should do is immediately request a disk with your scan and written report along with a hard copy of your written report (in case the hospital software used is different than that of your home computer), which you can then pick up usually within a day or two after your scan is completed.  I never look at the scans by myself, because I am not qualified to read them; nor are you.  But you will be going or should be going to other hospitals and doctors for second opinions; and when you do, they will want the disk so that they can download it into their system and review them.

If you are not good at reading scary news and would prefer to get it from the doctor, there is definitely an argument for waiting until the doctor’s visit.  You can still do that.  Get a copy of your report anyway.  And then once you get the doctor’s read, open the written report.  You will be shocked at how much information is in this report that your doctor will not even mention.

For one thing, your doctor will not pay much attention to anything found in those scans that doesn’t specifically say “Cancer.”  And he or she will not tell you about it.  Not only that, but after that initial visit with you, that scan will become forgotten altogether as your doctor is now focused on the cancer-y parts.

Here is what you, as a smart, informed patient need to do:

• Read your entire report.
• Put together a binder.  Title it “scan history” and keep all of your written scan reports in those plastic sleeve thingy’s.
• Keep reports in chronological order.
• Look out for ANY discussion of lesions, hemangiomas, cysts, nodules, inflammation etc.

But why would you need to know about those?  Three reasons:

• Because your oncologist or surgeon probably won’t tell you about them.
• Because you will want to compare these from scan to scan.  Are they stable?  Have they changed size?  Your doctor will not.  You, the patient, have to be able to spot warning signs and bring them up.
• Because they often are not “just” lesions, cysts, and inflammation.

I have had to learn this last lesson in a very hard way.  And I am not the only one.  If I had a dollar for every story I read online and in community forums where something was ignored for a while because it was labeled in a scan report as “only” a cyst, I would probably have a hundred by now.  First, it was a liver tumor that my first surgeon decided was a hemangioma when he had me open, and boldly declared that to me despite scans he had available to him suggesting the contrary.  Second, it was spots all over the outside of my small intestines with areas of “high FDG uptake” on the scan that was labeled “probable inflammation,” that later turned out to be spread of peritoneal metastasis, and of course the “cyst” on my ovary that is now a very large mass and causing all of my latest problems.

If this binder seems like it’s a lot of work, I can assure you that it isn’t.  I’ve never rated my organizational skills as my strongest trait and I found this to be very easy to assemble.

I put my genomic testing report in the front, and bring these scans to any appointment where I will need to share with a new doctor or remind my current ones as to my history.  You can see how in this case, I’ve placed stickies to highlight which scans and areas reference my ovarian “cyst.”  I can tell you when it appeared, what size it was at the time of my last surgery, and when it started growing and suddenly became a “solid mass tumor.”  My oncologist could not do this if you asked him.  My surgeon definitely could not do this if you asked him.

This is where I learned a lesson, once again, in a very difficult way.  I did not make a special appointment with my surgeon just prior to surgery to discuss this cyst.  I was aware of it.  I thought about it.  I decided to instead step back and trust my doctor’s prior words that he would “remove anything suspicious that he saw while in there” and that he would actually review the scans in the system prior to my surgery.  He did neither.  He didn’t remove the cyst.  He didn’t remove the ovary.  I now have a 12 cm tumor in my pelvis cutting off the flow of fluids from my kidney, a tube in my back, and a bag of urine to carry around with me every day.

Never, ever, ever just trust a doctor to know something in your scans or in your history without specifically discussing it with them.  I won’t ever again.

Second Opinions

Always get second opinions.  It is usually good to get one local opinion (baseline) and at least one other second opinion, preferably from a major center.  The first “no” doesn’t have to be a final “no.”  And when you find yourself surrounded by doctors with an “oh well” attitude and no solutions beyond riding SOC chemo until death?  Find some new doctors.  I know the odds are against me, but I refuse to just settle in to fulfil my doctor’s pre-ordained prophecy.  Odds are odds, but I need a doctor that is at least TRYING as hard as he or she can to beat those odds.

New Biopsies/Genomic Testing and Liquid Biopsies

I’ve been trying since April to get a doctor to put in for Genomic Testing of the liver tumors removed during my April surgery.  The surgeons in Cleveland don’t want to do it.  The local oncologist is too far removed.  I now have to go visit the oncologist in Cleveland with the hopes that SHE can put in the order.

It’s a bit of a long shot, but new testing might reveal new genomic mutations that I can use to advise my treatment.  While I am there, I plan to also ask about a liquid biopsy.  I am still learning about these myself, but my understanding is that these can measure circulating tumor DNA and pull up much of the same information to help guide treatment decisions, and in some cases be used to monitor the effects of treatment.

Find Your Community

For me, it has been the private ColonTown Groups on Facebook.  It is a rare and unique community devoted to educating colon cancer patients and providing support for patient advocacy.  If you have cancer of any kind, you are never a single tree.  There is a forest somewhere out there filled with other people going through what you are are going through.  Go find it.

Know What You Don’t Know

And when you don’t know, ask questions.

Advocate, Advocate and Continue to Advocate. Even on the Small Things.

Bring up ALL of your symptoms to your doctors and make sure that they put them down into their notes.  It’s unlikely, but possible that your oncologist might be able to link a string of symptoms to something specific.  At the very least, ensure that your notification has been documented in the record.

Insist that orders get put in and that treatments get scheduled in a timely manner.  This is another thing that I’ve had to learn the hard way.  My current oncologist is a nice guy.  So is his nurse practitioner.  My oncologist went on vacation and then apparently started working on plans to leave the practice.  During this time I went 6 weeks with bi-weekly appointments with ONLY the nurse practitioner.  Well, I guess out of sight is out of mind because the doctor’s orders for Avastin (a drug that helps cut off blood flow to tumors) never got put in and were delayed one full month (two treatment sessions).

I still haven’t had it, since my next chemo has now been delayed by the antibiotics I’m taking to fight off the infection caused by the GIANT TUMOR on my ovary.  Would it be as big right now if I’d been treated with Avastin?  I guess that we’ll never know.

Here’s what I do know.  When I see my oncologist next Tuesday, I will be telling him that I do not want any more appointments with the nurse practitioner through the remainder of the summer that he is with the practice.  Because when I see the NP necessary doctor’s orders don’t get put in.  And that is unacceptable.  Not getting the doctor’s order in can literally and has literally made a difference in my quality and length of life. This isn’t lawn care services. Why do those in the health care industry casually act as if it is?  I’m convinced that whatever people are surrounded by, day in an day out, tends to make itself mundane.

These are lessons learned through what I’ve personally experienced.  It’s YOUR job to get their attention, and to ensure that your life is NOT mundane to them.  Nobody else is going to do it.  And that is the key to surviving, for as long as you are able to, with your Stage IV cancer diagnosis.

Baby, I know hate is always waiting at the gate

I just thought we locked the gate when we left in the morning

I was told that war is how we landed on these shores

I just thought the drums would all be loud warnings

Vampire Weekend, “This Life”

Part 2: Know Your Data, Know Your Story

Past and Future

The future of cancer care is in individualized care and precision medicine. That is what all of the headlines and top researchers are saying. Treatments are being developed now that target cancer mutations, and not necessarily the type of cancer itself. New immunotherapy options have been approved, and are being tested in various clinical trials across the country. And then there are vaccine trials, where they test an individual’s tumor biology and then use that to develop individual vaccines. There is a lot going on right now.

The current of cancer care is what is called standard of care. This is literally a textbook that your oncologist has that serves as a step-by-step manual for how to care for your particular type and stage of cancer. The day that you enter your oncologist’s office, the first thing that he is going to want to do is order some scans in order to finish staging you. If the cancer shows up anywhere other than the primary source, your disease will be considered to be metastatic and you will be classified as a Stage IV cancer patient. If not, you will be staged at a subcategory of I, II, or III, depending upon a number of factors, such as the size of the initial tumor, number of localized lymph nodes positive for disease, etc.

If you have Stage III or lower, there is good news for you. Standard of Care will most likely still be your best option for success. This means that the treatments that you will be receiving for the next few months up to the next year will be in the book and will most likely carry you successfully to the other side. Generally speaking, the higher the Stage at diagnosis, the more likely it is that you will have a recurrence. If you have, for example, Stage IIIC colon cancer the chances of the cancer coming back in the next two years after achieving NED are greater than even and you need to stay vigilant in your screening and protections against recurrence.

Know YOUR Data

If you have Stage IV, I’m sorry to inform you that your outlook is looking bleaker. How bleak depends first upon the type of Stage IV. Oh, and dozens of other factors that will be unique to you. This is where personalized treatment suddenly becomes very important. You need to know YOUR data.  The baseline (agnostic) 5-year survival rate for Stage IV Colon Cancer is in the 10-15% range.

Here are all of the things unique to my cancer that I am aware of:

• My Primary Tumor revealed a KRAS G12V Mutation
  • This means that my cancer is likely more aggressive
  • This means that my cancer has a known resistance to two approved chemotherapy options for colon cancer: Erbitex and Vectibex.
• My Total Mutational Burden is 5
  • This is considered to be on the high side of “low,” with “medium” kicking in at 6.
  • The higher your burden, the more likely you are to respond to immunotherapy and individualized vaccines.
• My tumor was Micro-Satellite Stable, and opposed to Instable (MSS vs. MSI).
  • Most CRCs are.
  • This means that I am less likely to respond to immunotherapy, and am not eligible for Keytruda, which has been approved for MSI-H only.
• 11 out of 18 of my regional lymph nodes were positive for adenocarcinoma at diagnosis.
  • This means that it is far more likely that there is microscopic cancer floating around in my system and increases my likelihood for recurrence or spreading to another location.
• My primary tumor was found in the sigmoid region of the colon.
  • This is technically considered to be a “left-sided” tumor and therefore carries a better overall prognosis than a “right-sided” tumor.
  • Hey! I got one good thing!
• My cancer has progressed into my liver and my peritoneum.
  • The liver is the most common location of metastasis for CRC
  • Spread to the peritoneum occurs in only about 15-20% of cases.
  • Any peritoneum involvement is considered to darken prognosis. The reason for this is because peritoneal mets are very hard to treat and many oncologists and surgeons believe that no matter what, “they always come back.”
• My CEA (most-commonly used cancer tumor marker for colorectal cancer) was 1.0 at diagnosis.
  • This is considered to be in the “normal” range. This means that it cannot be used as a reliable indicator for success of chemo treatment.
  • If your CEA number is elevated at diagnosis (higher than 2), then it may be useful as a reliable indicator for you.
  • Prior to my surgery in Cleveland, they took a measurement of a different tumor marker: CA 19-9, which was revealed to be elevated. This marker is usually more associated with the peritoneal/ pancreatic area. A subsequent drop after surgery revealed that this is a marker that I now can begin using as a means of measuring the effectiveness of treatment on my peri mets.
  • Knowing this prompted me to advocate for regular CA 19-9 measurements from my oncologist’s office and it correctly spiked to signal the ovarian met was increasing. The last reading indicated that CA 19-9 had begun to drop. Now the question. Do we stay the course, and see if shrinkage begins to occur or bail and move on to the next treatment?

That’s a LOT of information, but you must know it. All of it. Because your doctors will not review your record before you walk into the room. They will not remember your profile. This means that the readily-prepared treatment response that they have when they walk into the room WILL NOT be taking all of these things into consideration. They will be based, primarily, on Standard of Care.

When I look at all of the data above, however, I see a story. It’s a story of someone who is going to quickly run through the reduced Standard of Care chemo options available. It’s the story of someone who is going to ride SOC to a date that falls short of the 27 month median life expectancy.

• Because I don’t have as many chemo options.
• Because I need to be more strategic about lengthening the capacity of the chemo options I do have.
• Because I will benefit the most by looking out for trials in development specific to my tumor mutational profile.
• Because trials might reject me due to my peritoneal involvement.

In summary, this is the story of someone who HAS to be both more strategic and aggressive in order to buy themselves more lifespan. And the best way to get me that additional lifespan is surgery.

Your surgeon will not be thinking about that. Your oncologist will not be thinking about that. This is why you have to.

Only YOU know all of your data. Only YOU can tell that story. If I don’t tell that story I will not get the surgery. If I don’t tell that story, there will be no discussions about how to maximize and stretch out the chemo options that are available. The doctor will see an allergic reaction and move me on to the next treatment instead of coming up with a strategy to reduce or eliminate the allergic reaction and stretch out the current cocktail.

Getting the Data

Some of the data listed above will be on your biopsy report. Don’t have a copy? Ask, insist upon getting it.

Some of the data listed above will be on a second report, which is only typically ordered if you have Stage IV cancer. This is a Genomic Testing report. It tests for any number of Genomic mutations in your tumor that could impact treatment decisions. There are only a couple of companies that due this testing, but the most common name is Foundation One. If you are Stage IV and do not have a copy of this report, you need to get a copy, study it, and keep it in your records. If you are Stage IV and your oncologist has not ordered this testing, REQUEST THAT GENOMIC TESTING BE DONE IMMEDIATELY:

• If you have a KRAS mutation, you can actually be harmed by taking Erbitex and Vectibex, which are currently in the SOC book as second-line CRC treatment options.
• Knowing your tumor mutational burden and your entire list of mutations will be critical to knowing what trials will be best for you and most trials will require that you have this testing done.

If you don’t have information on your CEA level at diagnosis or the location site of your tumor, ask your doctor. All of this information should be clearly explained to new Stage IV patients, but sadly is often not.

Part three will be about continuing to monitor your data throughout treatment, such as knowing your scans, keeping records and continuing to update and advocate with your physicians.

Baby, I know pain is as natural as the rain

I just thought it didn’t rain in California

Baby, I know love isn’t what I thought it was

‘Cause I’ve never known a love like this before ya

Baby, I know dreams tend to crumble at extremes

I just thought our dream would last a little longer

There’s a time, when every man draws a line down in the sand

We’re surviving, we’re still living, are we stronger?

Vampire Weekend, “This Life”

Part I: Realizing that Cancer is Messy, and May Only Get Messier.

Oh, but what a fine mess it is. Forget that picture of the smiling, happy, turbaned woman in the magazine ad with plump limps and rosy cheeks. Cancer is ugly. Cancer is messy. Cancer breaks your heart.

I’m home from yet another hospital stay. This one was because the tumor on my ovary has now encroached upon my kidney area, blocking fluid from traveling down my ureter and into my bladder and causing fluid build-up in the kidney itself. This caused an infection, which revealed itself to me in the form of two days of what I thought was just extra-lethargic chemo recovery, followed by a night of cold sweats and shivers and a 104-degree fever the following morning. On to the ER, and subsequent admittance to the hospital where I had a nephrostomy tube put in and they pumped me with IV antibiotics for 2-3 days before releasing me.

I’ve danced around some of these terms in the past. But today, I think that I will just be more blunt. What this means, friends, is that I get to carry a bag of my urine, drained directly from a tube in my kidney through a tube in my back. How long do I get to carry this around? At a minimum, weeks. Possibly months. They will most likely go in and put in a stent at some point, but first, they want me to discuss with my oncology team ways to reduce the size of the tumor, because that will be the best way toward a more permanent solution. If we can’t find a way to reduce the tumor size within a few months, they may not be able to do the stent and the tube in my back and urine bag become my permanent solution.

So, I now have a bag of urine safety pinned somewhere in my clothes that I get to carry in addition to the illeostomy bag. Oh yeah, that’s the bag that catches my stools as they emerge from a stoma in my abdomen because I no longer have any tubing connecting my small intestines and the other end. And then two days out of every two weeks, I get to add a fanny pack that carries my take-home chemo pump, which pumps poison in through tubing into a huge needle taped to the port in my upper right chest.

But, at least I still have my hair, right? Well.. about that. You haven’t noticed because I started with masses of hair, but I’ve been slowly shedding it into shower drains and hair brushes for months now. I now have a nice bald spot on the back of my head, that I have still been successfully able to hide. But that will likely be all for naught, as a likely change in my upcoming treatment from FOLFOX to FOLFIRI will probably swiftly take care of the rest. Bit by bit, chunk by chunk, the disease comes and takes away little pieces of your dignity. Little pieces of your sense of self.

It’s hard to resist the thought that with the addition of this latest bag the cancer is just cruelly laughing at me now. I’ve been here trying like hell to not let these things and this anger drag me down into the dirt too long. I’m worried that if I do I won’t get back up. And then this comes along, seemingly just to taunt me.

It doesn’t help at all that this is being caused by that ovarian met. You know, the one that could have so easily been taken out during my last surgery? That maybe wouldn’t have grown as quickly, had the drug that helps cut off blood supply to tumors been added to my cocktail two months after my surgery as promised? Instead, my oncologist threw me to his nurse practitioner for a month’s worth of visits and the order never got put in.

But, of course all of that is just crazy talk. I’m just some emotional lady that asks too many questions. Like a fly buzzing by the side of your ear.

Side note- I actually got copies of all of my first oncologist’s visit notes, and he makes a point of describing me this way (emotional, asks a lot of questions). Note to dumbass: this was the visit where I learned that I had stage 4 cancer, and you had the bedside manner of a man annoyed that his commute had been delayed by a funeral procession. I yearn for my buzzing fly to take up residence on the wall to witness your Clint Eastward-esque stoicism should some day you receive similar unfortunate news.

But I will tell you something else. I am used to it. There is no end to the code words for “Bitch” that can be pulled out and used to successfully invalidate and marginalize any intelligent woman calmly but firmly asking a question or expressing concerns that you don’t like. These include: ‘Emotional, Irrational, Aggressive, and my personal favorite (directed toward me on more than one occasion by the former boss I mentioned in my mid-year check-in)- “Martyr.”

We use labels because they serve a purpose and carry power. Apply the label and you’ve successfully made that person “other.” It’s like magic. Use this term once against me and I am successfully marginalized. You no longer have to listen to me or deal with the uncomfortable truth that the concerns I am expressing are valid.

It should be noted that in all of the instances I have heard these terms directed at me, I have never once used similar language to respond when these words are casually cast my way. Are they in my head? Of course. But you learn- especially as a woman in a professional environment- that the second you react or stoop to that level you have lost. The standards for YOUR behavior will always be higher.

Here’s the good news. You don’t have to care what people think about you being informed, asking questions and providing input. Put all of that aside right now and ask yourself an important question: What is more important to you- getting individualized care and staying alive longer for yourself and your kids, or your doctor liking you?

If the answer is staying alive longer, good choice, because your oncologist will probably forget about you long before your spouse and family will. Now, get ready. You will need to do a lot of research, and be as educated as you can before you can even begin to walk into that room and advocate for yourself.

Which brings me to the subjects to come next– If you want individualized care as a Stage IV Cancer Patient, you 1) have to be willing to be educated about every aspect of your individual cancer prognosis, and that 2) you have to continue to educate and re-educate every doctor you meet about your continuing story in order to ensure that the right care decisions for you will be made.

Up to my knees now/ Do I wade, do I dive?

The sea has seen my like before

Though it’s my first and perhaps last time

So I swim, until I can’t see land

Swim, until I can’t see land

Oh swim, until I can’t see land

Are you a man, are you a bag of sand?

Frightened Rabbit, “Swim Until You Can’t See Land”

It started with cramps.

Sitting by the pool on a Sunday afternoon at extended family’s house nearby I had hoped to enjoy the weather, and to just sit and watch as my kids played and had fun. I wait for it to pass, but then nausea kicks in and I realize that it is only getting worse.

I turn to my husband to ask if he can just drive me back home, so that the kids and he can still enjoy the rest of the afternoon. As soon as we begin driving, a blanket of heat envelops me from the face down.

Arriving home, I try to lay down, but quickly realize that my body has other plans. I run to the bathroom, throwing up in my mouth and only make it to the sink before expelling everything. Immediate nausea gone, I draw a bath to alleviate the lingering cramping. As I lay in it, my husband comes in and does what no husband should have to think about doing. He cleans my vomit out of the sink for me.

In my head, I am doing calculations. This is the second time in two days something similar has happened (cramping, nausea, heat- knocking me out of commission). It’s Sunday, I disconnected from my chemo pump on Wednesday. Four days ago. I have never felt this sick this far out from chemo. What is going on?

Then it dawns on me. It’s not the chemo causing the pain and sickness. It’s the cancer. To be specific- my largest met, the tumor sitting on my right ovary.

It’s been there all along, hiding out under the label of “cyst” from my scan reports, and therefore not really mentioned or paid attention to by my doctors. First showing up in October and remaining stable through my first 7 chemo, then began growing again while off chemo sometime between the end of January and the time of my first post-surgery scans at the end of May.

In October (around the time it showed up and I started chemo) I had bleeding and cramping for three weeks straight. I was told that it was just chemo throwing me into menopause. In April, after my surgery, I started cramping and bleeding heavily in the hospital, despite having finished my cycle only a week and a half prior. At that time, the surgical resident informed me in front of three eager students on rounds that it was probably just my body’s response to the trauma of the surgery.

I’ve been irregular and spotting ever since, only getting worse since starting back on chemo.

And so of course now here I am. We’re pretty sure that it’s a tumor now, and it’s starting to cause bigger problems because it’s a bigger tumor. I worry whether it will keep growing, and if so how the pain associated with it will get worse. And if it comes out of nowhere, do I now have to worry about it hitting in the middle of the supermarket? Or while driving somewhere?

I guess that I have plenty to worry about these days. But I’m not the only one. My husband confides that he sometimes feels so overwhelmed by this that he just shuts down altogether. Will he be able to take care of both me and the kids? How can he keep going and keep making all of the right parenting decisions when he’s doing this himself? When I am no longer here?

And then there is my son. ADHD, anxiety and giftedness are his baseline. And all of this is throwing him into a tailspin. More troubles at school and summer camp. Issues that we thought that we had gotten him over are coming back.

A snuggle with him attempts to coax out some answers, and ends up being a stream of consciousness of all of the anxieties in this little boy’s head coming out at once:

– “I have random aches and pains all over my body, I am scared that I have cancer too.”

– “I am scared to go to the doctor to get an x-ray, because they might make me have surgery like you.”

– “I feel like I have no friends and that I am just one of those kids that nobody likes except for their own parents.”

– “I’m always messing things up. You should sell me to another family.”

– “All of the joy just got sucked out of me this year, Mom. You got cancer, bullies at school..”

All of this from a 9-year-old boy. More weight than he should ever have to carry.

All that I can think about is that I have to stick around for as long as I can for my son, for my husband, for my girls. All I can do is feel powerless over how little control that I have over any of this. How little control we all have.

In the words of my husband, “All that I do every day is try. But no matter what I do, I can’t fix anything. I can’t actually solve a damn thing. All I can do is be there.”

And he is. As he’s cleaning up my vomit, I think about all of the weight on his shoulders. He worries about carrying my weight. I worry about carrying his. Some say that you can find a bright side and some humor in everything. Please tell me when we get to the punchline in all of this, because I haven’t found mine yet.

If you hadn’t gleaned from my recent blog posts, I have let myself sink a bit beneath my own weight. The weight of my own worries of pain and sickness and bad things to come. The weight of powerlessness. It’s understandably pretty easy to go somewhere dark and feel sorry for myself.

But.. I don’t get to do that. I have to get up, put on my big girl pants, live, be present, and put in my fair share of the labor of what life has been since diagnosis. Because my husband has been doing it, because I can’t let him drown and because my children need me.

But I am missing something. We are missing something. Hope for the future. What it feels like to be care free…

I can’t get those back, I will put on my big girl pants and keep trying. I have to keep swimming with my head above water for as long as possible. Even if I still can’t solve anything. Even if all it achieves is not sinking. Even if it just achieves being here, for as long as I can, while I am here.

Take all your reasons and take them away
To the middle of nowhere, and on your way home
Throw from your window your record collection
They all run together and never make sense
But that’s how we like it, and that’s all we want
Something to cry for, and something to hunt.

Are we gone
Come on yeah, we know we’re gone
Bye bye bye
Bye bye bye we know we’re gone
We’re out looking for astronauts, looking for astronauts
We’re out looking for astronauts, looking for astronauts
It’s a little too late, too late, too late for this

Isn’t it a little too late for this?

The National, “Looking for Astronauts”

I did my best and all the rest is hidden by the clouds/ I can’t carry you forever, but I can hold you now…

Vampire Weekend, “Hold You Now”

There is a scene from more than ten years ago that occasionally comes back to my mind. My oldest daughter was maybe a little over a year old, and we were walking back to our car from an aquarium with my Mom and Dad.

Abe had my daughter up on his shoulders, holding her hands around his neck. My Mom was anxious, “Aren’t you scared that he is going to drop her?”

The thought had never even crossed my mind. I turned to her and immediately said, “I trust Abe more than anyone in the world. If he’s got her, she’s safe. She’s not going to fall.”

The conviction with which I made that statement says a great deal about the relationship that I have with my husband. Someone like me- who has always had trust issues- has unwavering faith in the individual that I chose to spend the rest of my life with.

It comes from knowing someone so well that you don’t ever have to doubt. It comes from knowing his values and needs. Knowledge aquired through deep conversations. Knowledge gained through actions witnessed and repeated.

The summer after we started dating, he went on a three week class camping trip to the Hawaiian islands. One evening, while sitting on a beach and staring at the ocean he decided to marry me.

How many high school relationships survive four years at different colleges? We were lucky to be only a little over an hour away. He would faithfully drive back to come see me every weekend or two.

When he moved into a house (an alternative to frats) with a group of both men and women (dubbed ‘the House of Spirituality”) I suppose that I had ample reason to be concerned. I had no doubt that there would be opportunities for unfaithfulness. But those worries only take flight if you don’t trust the partner you have.

He despised college guys who went through women like trophies, and one in particular who prided himself with taking as many girls’ virginity as possible. I knew (and still know) that intimacy is anything but casual for him. I did not worry.

He proposed to me during our senior year via email while up all night with Nodoze finishing a paper at the last minute. Apparently, he had been struggling for a while to figure out the best way to do it and in a moment of frustration and panic just let it out in a long, rambling email which I read groggily the next morning.

Is he perfect? No. But I wouldn’t ever have it any other way. I hate perfect people anyway. He’s perfect in his values and in his intentions. And when he says something he means it. That’s worth more than than all of the chiseled features and grand romantic gestures in the the world (and for what it’s worth, he’s made a lot of progress in the romance department after a decade or two of practice 😂).  I refer to him often as “my knight in flannel boxers”.  And he is ❤️.

A week after we both graduated from college, we got married. Neither of us knew how to plan a wedding. This was one of those moments where I was happy to let my mother do what she did best – planning almost everything. She was proud of her one child who graduated college and was getting married and wanted to make everything right for her relatives. We married and had our reception at the Officer’s Club on base.

I did get to choose a few things of my own. My $99 wedding dress, who presided (the Chaplain from Abe’s college), and the vows, music and readings.

My favorite was this Shakespearean Sonnet.  To be fair, I majored in English Literature, so this was almost mandatory:

Let me not to the marriage of true minds

Admit impediments.  Love is not love

Which alters when it alteration finds,

Or bends with the remover to remove.

Oh no! It is an ever-fixed mark

That looks upon tempests and is never shaken;

It is the star to every wand’ring bark,

Whose worth’s unknown, although his height be taken.

Love is not time’s fool, though rosy lips and cheeks

Within his bending sickle’s compass come;

Love alters not with his brief hours and weeks,

But bears it out even to the edge of doom.

If this be error and upon me prov’d,

I never writ, nor no man ever lov’d.

William Shakespeare, Sonnet 116

Who knew that this language, written centuries ago, would still cling so closely to the truth today?  Love is not easy, nor is it perfect, but true love sustains through the hardest of times.  It weathers the stresses and fights between two people trying to work full time whilst simultaneously raising small children.  We both have adapted.  We both have changed.  But the underlying love and trust have not.  The love and trust have carried us through the hard times.

We began our relationship as a marriage of true minds and will end that way.  Rosy lips and cheeks will yield to the bending compass of time, and of sickness.  And we will bear things out until the edge of doom.

I am forever grateful for my husband’s patience and courage.  For his humor.  For his dorkiness.  For him being an amazing father.  For taking on the challenges that no man should have expected to have to take on this early in life.  For being my partner and friend.

We celebrate our 19th anniversary on June 18th.  Happy anniversary, my love.

Where is her head?
What is she thinking?
Is she sleeping?
What did she say?
Is she looking out?
Is she standing up?
Where are her hands?
Where are her eyes?
Where is her head?
Is she looking out?
Is she sleeping?

The National, “Where is Her Head”

It’s the season of culminating moments.  Last days of school.  Talent shows.  Dance Recitals.  Graduations.  A season of celebrating accomplishments before growing up and looking forward to the next life event.

I view them from the vantage point of a Mom.  Cherishing the moments that I can.  Watching the ceremonial moment where my daughter walks through the halls of elementary school for the last time.  And the realisation hits me.  There’s a good chance that I won’t be here to see my son do the same thing two years from now.  In a second, the bottom fall out from beneath me.  A happy moment becomes sad, and I’m bawling uncontrollably in my husband’s arms in front of other parents.

The closest word that I can come up with for this moment is grief.  I’m grieving all of the precious future moments that I won’t get to see my children experience.  I’m jilted by how unfair it is that I don’t get to be here to see them.  I’ve spent all of these years growing them from babies into where they are now, and I don’t get to stick around to see how far they bloom.

This feeling runs like a river beneath the surface at all times.  Though it only comes up and boils over occasionally, it never leaves.  A knowing.  An end point that gets casually glossed over in so many conversations by the living, who can still see the future by the scale of decades.

It goes by so quickly. they’ll be grown up before you know it!  A phrase built into our common vernacular that takes for granted that we will get to stay around to see it.  And it so casually passes into conversation by those who don’t know or who forget that I won’t.

So my brain lives on two planes, and I let the moments swirl; I breathe and let the casual sayings pass.  A covert depression, hidden by someone who still functions.  Who still makes and laughs at jokes.  Who still smiles and looks “healthy.”  I can experience the world as it is today, but am forever trapped by the pressing truth that tomorrow is a locked door I eventually can’t go beyond.

Before my daughter’s recital, I take a moment to myself to gather my bearings before transitioning to who I must be for the day.  What better place to do this than sitting on a porch, watching the clouds move and listening to the birds?  But instead it hits me.  There will be so many other days ahead, right here.  With those same clouds and birds, and the wind.  But there will no longer be a “me” here to to witness them.  There will be laughter in this yard, and a rushed piling in to go to events. There will be honking horns and music blaring and driving teenagers heading out on dates. And all of these sounds will go unheard by me.

They will exist, but I won’t.  Perhaps as unreal to me as photographs of younger versions of family members before I was born.

And where will I be then?  I don’t know.  But I imagine that a bit of me will stay here in some way.  Because my family is and was my full heart while I have/had the opportunity to be among them.  Some of us just get to stay here longer than others.  All you have left is the gratitude that you got to experience what you did.  And you to try to let go of regrets for the time you wasted focusing on so many things that didn’t matter.

There’s not an adequate word in our commonly used language to describe all of this.  Yes, grief is close, but it is far from complete.  It’s not a grief for something that’s already gone, but something that will be gone.  It’s a grief for the loss of others to you and a grief for yourself all at once.  And it’s terribly more complicated than just an empty feeling.  Fear gets mixed in.  It weaves in and out to remind me of the scariness of death itself.  It likes to hide out and then step back in just when it is least welcome.  And it doesn’t stop there.  I fear being sick beyond comfort even more.  And I fear my kids seeing me that way and having those memories.

I am experiencing life before me while anticipating death within me.  I am happy, loved, appreciative, whole, sad, angry and fearful all within the span of a day.

We need a word to capture all of that.  But we are woefully lacking.  Because only those of us who have been struck by that existential slap get to experience it; that feeling can’t be appropriately captured and shared enough to become part of the language.  And those who haven’t?  They try not to think about death at all.  So I will continue to let it sit, underneath, as my secret unnamed emotion.

Sometimes I think this cycle never ends

We slide from top to bottom and we turn and climb again

And it seems by the time that I have figured what it’s worth

The squeaking of our skin against the steel has gotten worse

But if I move my place in line I’ll lose

And I have waited, the anticipation’s got me glued

I am waiting for something to go wrong

I am waiting for familiar resolve

And it’s strange/ They are basically the same

So I don’t ask names any more.

Death Cab for Cutie, “Expo 86”

Eventually that boulder will become so heavy it will fall back and roll me over completely. That day will come, but that day isn’t today.

I was genuinely surprised by the news of the liver mets. How could he miss 6-8 tumors, one of which measured 1cm by 3 cm?

Direct quote from Liver surgeon, post-op: “We removed everything that we could see, both by the naked eye and with imaging.”

Remember my pep talk in prior entries about letting go and learning to trust doctors? Yeah, I’m pretty much done with that.

To be clear, I don’t think that any of these doctors are outwardly malicious. What I do believe is that they all have too many patients. And none of them take the time and effort to study your whole case, or remember prior discussions. They make decisions sometimes based on personal reasons and not always based upon what is going to give that patient the best shot at survival or a longer life. They think about maintaining hospital stats. They think about working things around their schedules and plans. They have internal biases and pre-conceptions. And most of all, they make mistakes.

• My liver and peritoneum are less cancer-y than before.
• I have no mets still to my lungs or lymph nodes.
• My back pain appears to not be directly related to my cancer.
• I am going back to a chemo regimen that was previously working on my liver mets (though the jury is still out on whether it will help the ones in my small intestines).

And here’s another silver lining. I am pissed off. Pissed off enough to stay involved in my treatment. Pissed off enough to stay as healthy as I can for as long as I can. My familiar resolve has come back.

So I will keep sliding and run to climb again. I will keep pushing the boulder uphill. I will move forward, knowing full well that something is bound to come and push me back again. And the only answer I have to the eventuality of it all?

Not today.