Month: March 2023

I was just sitting here, and I noticed the date on the calendar —  3/29/2023.  It was two years (and 2 days) ago that I underwent a procedure that confirmed I had cancer.  It was, technically, the beginning of my cancer journey. 

I had been sure of it several weeks earlier, in early February, when I unexpectedly started bleeding vaginally, almost 12 years after menopause.  The first words out of my mouth were “Oh my God, I have cancer!”  I don’t know what brought those words out of my mouth, but I knew, without a doubt, I had cancer. 

I only bled for one day.  Imagine if I had just ignored it. Imagine if I had just “waited to see.”   Imagine if I hadn’t followed up, even though my insurance company made it almost impossible for me to follow up.

I knew this was serious, and I was tenacious in following up.  I think a person less used to having to advocate for her medical rights would have given up simply because of all the ridiculous hoops the insurance company made me jump through. 

Because of my altered anatomy (my pelvis has been reconstructed, plated, bone grafted, and pinned over the years) the only way to do a pelvic exam (at this time of my life) to confirm the cancer was to do it surgically, under full anesthesia, in an OR with a special platform for people like me – with musculoskeletal deviations. 

I wanted to get an appointment with a well-known oncologist gynecologist, but the insurance company wouldn’t allow it.  They said I had to go to my PCP and have a pelvic exam done there.  I explained to them it wasn’t medically or physically  possible, but they would not relent.  So I waited a few weeks to get in to see my PCP, all the while knowing cancer was pulsing through my body. 

When I went to my PCP, I explained the issue of my pelvic reconstructions and the difficulty of doing a pelvic exam.  She looked at me (and I do mean “looked”) and said, ”I can’t possibly do a pelvic exam on you.  I don’t have the right equipment, and I don’t have experience with your disability”.  I said, “I know, but the insurance insisted I come here.”  

She documented that I needed a gynecologist with experience with people with musculoskeletal deviations.  Then, of course, the insurance insisted I go to a standard gynecologist.  They couldn’t get me in for 6 weeks.  I personally called all over town until I found a gynecologist who knew how to do a pelvic exam on me, had hospital privileges at the only local hospital that had the special platform, and he worked me in quickly, and my PCP helped me appeal the insurance company’s decision.

This male gynecologist had just recently gone into practice.  He knew a lot about gynecology.  He knew very little about cancer.  When he did the exam, he knew what he was seeing was very abnormal, that it was some kind of cancer, and that it was invasive.  He called me into his office when the pathology report came back.  He told me I had cancer, and he gave me a referral to the oncologist gynecologist I had wanted to see in the first place.

I went to see her.  Of course, she couldn’t do a pelvic exam in her office either, so she relied on the other gynecologist’s report.  When she read it, she said, “This doesn’t seem too bad.  It looks like you just have endometrial thickening.”  I stopped her and said, “I don’t know what that report says, but I saw the look on that doctor’s face when he told me I had cancer.”

My oncologist gynecologist was a very smart woman, and she said “The best way for me to figure out what’s going in is to just call him directly.”  And she did, right there in the exam room.  He explained to her, in detail, what he had seen (which wasn’t clear in his report at all.)  When she hung up, she said, okay we need to get a PET scan on you, and then we’ll plan the next step.  I was relieved.

Guess what?  The insurance company wouldn’t approve the PET scan.  They said I had to have an MRI.  I tried explaining to them that an MRI would be of no use, since I have 9 ½ pounds of surgical metal in my pelvis.  They still insisted.  (Obviously, the metal streaks, blurs,  and physically blocking a huge section of my reproductive organs would make it unusable.) 

I asked my oncologist gynecologist to appeal the insurance’s decision, but she explained to me that they could tie up the appeal for up to 4 weeks, and that was not what we wanted to happen.  She said to go ahead and do the MRI, and when it came back as unusable, she could get the PET scan approved very quickly.  She said it would be quicker this way, so I had the MRI and exposed myself to unnecessary contrast, which is incredibly hard on my kidneys (I also have CKD.) 

Of course, all the metal in my pelvis and well as bone in strange places, made the MRI unusable and caused an issue we didn’t realize yet.  The MRI said my tumor was 1.4 cm.  The PET scan said it was 2.4 cm.  Based on this information, my oncologist gynecologist recommended a radical hysterectomy and removal of my pelvic lymph nodes for testing. 

I agreed.  This sounded reasonable.  A small 2.4 cm tumor is very operable.  If only we had known how wrong we were!

My bladder was prolapsed, so the surgeon (my oncologist gynecologist) removed it from its attachments, and moved it over, out of the way, and pinned it into place.  When she removed my uterus, she was shocked to see that tumor was tightly packed and over 4 cms, which technically means it was “inoperable.”  She had great difficulty even finding my pelvic lymph nodes (they were located so much deeper in the pelvis was typical, and 5 of the 11 she removed were not even functional.  (They remove the lymph nodes to send them to pathology to see if they have cancer spreading through your lymphatic system.)

I was in the hospital for 10 days, and my surgeon came to visit me every day.  Then I was sent to a nursing home for 4 weeks (I signed myself out against medical advice after two weeks, because the care was so poor.)  It was during my 2^nd week in the nursing home I was “called in” to my surgeon’s office.  The nursing home arranged a handivan to transport me.  This is when my oncologist gynecologist told me that the tumor was more than twice the size that the imaging had indicated and that I was going to need very aggressive chemo and radiation, followed by brachytherapy. 

I did ask her why she didn’t tell me any of this when she was visiting me in the hospital.  She simply said, “I wasn’t sure you could take it then. You were so weak, and you were completely alone.”   I think she was probably right.  She said I needed about another 4 weeks to heal from the radical hysterectomy (it was an open incision, so recovery was fairly long) 

So, then I started the second part of my journey – 45 sessions of radiation, 6 weeks of chemo, and two weeks of brachytherapy (which is internal radiation and  was incredibly difficult because of my anatomy.) 

All of this started — my cancer journey — two years and two days ago.  I never thought that two years later, I’d still be recovering from the damage done by radiation and chemo. 

Who knew two years and two days ago that I’d lose eleven lymph nodes, my ovaries, my fallopian tubes, my uterus, 2/3s of my vagina, 3 feet of my small intestine, several bowel loops, my cecum, my appendix, part of my ascending colon, and finally, my gallbladder?  Who knew my sigmoid colon would be damaged to the point it could not be repaired, that my rectum would be damaged, and that I’d suffer an anal fissure and internal hemorrhoids?.  Or that I’d contract a serious recurrent colon infection, constant B12, and vitamin D deficiencies, frequent malnutrition due to my remaining intestine’s inability to absorb vitamins and nutrients, and bile acid malabsorption? 

Lastly, who knew I would end up with dietary limitations which meant eating only low fiber, low fat, low residue, bland foods to almost the exclusion of almost all vegetables, fruit, all whole grains, seeds, nuts, beans, and dairy? But here I am – alive, and well, and waking up to sunshine almost every day!  Who knew?

You may already know my story, but for those who don’t, I’ll recap the basics and tell you the latest developments. 

I couldn’t keep food down, I had near-constant diarrhea and would simultaneously vomit bile because I had bowel obstruction after bowel obstruction where the intestine was burned and the tissue scarred and twisted.  They put me on hospice and said my condition was “incompatible with life.” 

I made my end-of-life plans, wrote my will and had it notarized and witnessed, double-checked my beneficiaries, planned my funeral and cremation (and paid for it), and even wrote my own obituary.  I posted my DNR order and registered it with the local hospitals.  I assigned a medical power of attorney and a financial power of attorney and chose my executor.  I put my affairs in order and even found a retired couple who agreed to adopt my elderly dog when I passed so I wouldn’t worry about what would happen to her once I was gone.  (They also cared for her every time I was in the hospital or when I was too weak from radiation and chemo.) 

Long story, short, after 12 weeks in and out of the hospital with basically nothing passing through my bowels, I was so weak, and I literally had only days left.  The surgeon the hospital had assigned to me said it was hopeless – that I was far too weak and too deconditioned to survive any attempt at surgery. 

He even stopped coming to see me.  I didn’t see him once during the last 8 days, no matter how many times I asked for him.  I knew the end was near.  I could barely lift my head off the pillow.  Physical therapy didn’t even bother to come anymore, because I was too weak and deconditioned to even stand on my own.  I had a PICC line put in, and since I hadn’t been able to keep any food down for months, they hooked me up to TPN, which is when they pump nutrients and electrolytes directly into your bloodstream. 

There was the added complication that a colostomy bag was out of the question.  You see, I have severe arthritis and enthesitis in my hands and wrists, and it wouldn’t be possible for me to open or empty a colostomy bag.  If I had one, it would have meant spending the rest of my life in a nursing home or care facility.  I was in my fifties, had been fiercely independent all my life, and honestly, I would rather die than spend the rest of my life with a colostomy bag I couldn’t care for and living in the never-world of a care facility decades before my time. 

Somehow, as weak as I was, I found the strength to realize I had no confidence in the doctor the hospital had assigned to me.  He had long since given up on me.  There was no compassion from him.  There was no hope.

I felt my body shutting down, but I just wasn’t willing to let go yet.  I was very confused by it all.  I didn’t know if I should pray to die or try to live.  One second, I’d hold on to life with everything inside me, and the next, I was ready to let go.   I was overwhelmed by it all.  As weak as I was, I still had just a sliver of “fight” left in me.   

It took every ounce of strength I had, but I picked up the hospital phone and told the operator I wanted a patient advocate, and I didn’t have time to wait.  I needed an advocate now. 

The patient advocate listened to my concerns and agreed that I had a right to feel that my needs were not being adequately addressed by my doctor.  She explained the process to fire that doctor from my case.  With what seemed like my last ounce of strength, I fired him.  I barely had the strength or state of mind to go through the process, but somehow, I did it.  For some reason I have never understood, God and the universe have always looked out for me. 

I asked for a surgeon I had seen earlier in my enteritis battle.  He came immediately to the hospital, and said he knew he couldn’t “fix me,” but he was willing to go in surgically, do an exploratory, and if he saw any way to improve things for me, he would do it.  He promised me that there would be no permanent colostomy.  He scheduled my exploratory for 8am the next morning.  He gave me hope.

He was very upfront that it was a high-risk surgery and that there was a good chance I might not survive it.  He said he’d do his best for me.  I prayed that night that he was successful, but that if the life I would have wasn’t worth living, that God would keep me from waking from the surgery.  I chose to trust, both the doctor and the universe.

I made a good choice.

I woke up from the surgery to find he had removed over 3 feet of my intestine, including my ileum (and terminal ileum,) my cecum, and about half of my ascending colon.  He explained that he didn’t try to repair my sigmoid colon because he doubted he could make it better, and he was concerned he might make it worse. 

I felt better when I awoke from surgery than I had felt in over eight months.  Even with the three new incisions, my pain was so greatly reduced.  I spent ten more days in the hospital and then went home, and spent the next six months recovering from the surgery, and learning to live with my “new normal.”  I understood my eating and bathroom habits would never be the same, but at least I could eat some things and I didn’t have a colostomy bag I couldn’t open or empty. 

What I did have was a constant battle with bile acid malabsorption.  In case you don’t know, when you no longer have a terminal ileum or a cecum, your intestines get overloaded with bile that can’t reabsorb into your body and return to your liver.  Your body, realizing you have too much bile, tries to push it out of your intestines by flooding them with water.  It causes you to anally expel huge quantities of watery diarrhea and the mucous lining of your colon, often up to 20 plus times per day. 

The loss of all this fluid also leaves you dehydrated no matter how much water you drink, causing frequent trips to the ER to have your labs and electrolytes determined, and have several bags of fluids administered.  It leaves you with fecal urgency and often, fecal incontinence.  The explosive watery stool you expel is so watery that it immediately soaks through pads and incontinence briefs, leaving a horrifying mess multiple times per day, and per night.  This constant flooding with watery stool also leads to frequent UTIs, no matter how often you shower and change your clothes. 

To help reduce this, you can take a bile acid sequestrant. It is a resin powder you mix with juice and drink, in my case, twice to three times per day.  This mix is thick, grainy, and gritty, and you have to use bleach on the drain in your kitchen sink weekly or the resin will coat and clog the pipes, and the sticky sweetness will attract drain flies and fruit flies.  

Without the ileum (a section of your small intestine) you can’t absorb certain vitamins, no matter how much of an oral supplement you take.  It just passes through you without being absorbed.  I’ve had constant B12 and D deficiencies, which left me weak, fatigued, and low on energy. Biweekly B12 injections and weekly vitamin D sublingual gels, along with large quantities of vitamin K, E, and O supplements, and a good multivitamin are helping to prevent ongoing malnutrition. 

Not only do I have a difficult time absorbing many vitamins, but my food choices are also extremely limited.   The list of foods I cannot eat is 14 pages long.  The list of things I can eat is a single page of bland, low-fat, low-fiber, and low-residual foods.  For many foods, the only way I can find out if I can tolerate them is by trial and error.  The error part can be very painful, to say the least. 

Things like dairy products (including sour cream, cream cheese, milk, ice cream, and yogurt,) whole grains, beans and legumes, seeds, nuts, greens, raw vegetables, baked goods (like cakes, croissants, and sweets,) cream soups, popcorn, rich sauces, tomato-based products, processed meats, fatty foods, fruits with skins or husks, anything with high fructose corn syrup, spicy foods, vegetable oil, butter, margarine, and cruciferous vegetables, are all on the “never eat” list.  My digestive system simply can’t process these things.  Even the few vegetables that are left have to be cooked until they are soft and mushy.  (This “diet” makes it hard to avoid malnutrition.) 

After months of living basically on Rice Krispies, scrambled eggs, plain untoasted English muffins, poached skinless chicken breast, and unsweetened applesauce, my condition ebbed and flowed, but left me basically medically homebound.  After about eight months, it seemed to get much worse, but I had no idea why.

I had recurring Enterococcus faecalis (E. faecalis) and Escherichia coli (E. coli) UTIs and infections.  Just to add to the “fun,” I got a call from the lab that I had a very serious colon infection called C. Diff that is contagious through contact and can be deadly.  They immediately started me on a course of very specific antibiotics.  This infection can be easily spread, so I had to be very careful and avoid physical contact with others.  I had my home thoroughly cleaned with bleach to help as well and had to clean my bathrooms at home with a special bleach cleaner at least twice a day.

This infection, the partially clogged bile duct, and abdominal inflammation, all added to my worsening diarrhea and fecal incontinence no matter what meds I took or how careful I was with my diet.  Nothing seemed to help.  After a while, I just learned to live with it.  I stayed at home, and my world became very small.

Then I started having unexplained pain in my abdomen and lower back that would leap from just barely bothering me to 10 out of 10 on the pain scale.  I’d have seriously low blood pressure and almost pass out, and then as the pain spiked, my blood pressure spiked to over 180/100, which required me to take Clonidine to level it off. 

Eventually, CT scans and ultrasounds named the culprit.  It was a medical term I had never heard – “gallbladder sludge.”  It was most likely also caused by my cancer radiation treatments, and this sludge was causing my bile duct to be partially blocked, and my gallbladder itself to be distended and spasming. 

Believe it or not, the ER sent me home with an anti-spasmodic medicine and didn’t even recommend follow-up of any kind.  I casually mentioned this to my rheumatologist at my next appointment, and she was shocked they hadn’t sent me to a specialist. 

She gave me a very good piece of advice.  She told me, “If your abdominal pain goes up and you spike a fever, call an ambulance and get straight to the hospital.  Don’t hesitate.  Have them remove your gallbladder.  It’s going to have to go, so do it sooner rather than later.” 

A week later, that is exactly what happened. Abdominal pain, lower back pain, pain by my right shoulder blade (all classic signs of gallbladder pain) and a 102.5 fever.  I called.  I went.  She was so right!

This was the same hospital where my life-saving surgery had taken place ten months earlier.  When I got to the ER, I asked the head ER nurse if the doctor who did my previous surgery was on-call.  They told me he was off that weekend (it was a Friday morning.)  They told me the name of the surgeon on-call, and at least it wasn’t the doctor I had fired before.  I wasn’t happy about it, but I resolved to let a doctor I didn’t know remove my gallbladder.

In one of life’s unusual twists, the head ER nurse popped his head into my room a few minutes later.  He said, “I texted the surgeon you wanted, and he said that for you, he would come in on his weekend off.”  And that is exactly what happened.  He came in later that morning and removed my gallbladder the next morning.  The relief I felt when I found out he was going to be my surgeon again is beyond words. 

After the surgery, he told me it was a good thing I had my gallbladder removed, that it really needed to come out.  It was inflamed, distended, and infected.  I stayed a total of four days in the hospital.  I came home and spent about two weeks taking it easy and recovering from the surgery. 

The strangest thing happened during my recovery.  The horrendous bile acid diarrhea slowed down, and then almost stopped.  Days have gone by, and now that I no longer have a gallbladder to flood my intestines with bile, I started to have fewer bowel issues.  (After your gallbladder is removed, the bile just sort of drips a little at a time in smaller amounts throughout the day.)  

I’ve finished my course of antibiotics, so my C. Diff infection has resolved.  I’m not having such horrendous bile acid malabsorption.  I’m staying hydrated.   I’m almost afraid to mention how much better I feel because I’m afraid I will jinx things, and it will go back to the way it was. 

Sometimes, you don’t even realize how sick you are until you are halfway recovered.  It feels like this is what has happened to me.  Without the constant bile acid malabsorption, I’m not constantly fighting dehydration, my skin has stopped looking like crepe paper, and I’ve stopped losing layers of skin at the tiniest bump or scrap to my arms. 

I’m only two weeks out of my gallbladder surgery, so who knows how this story will end?  I’m glad to say I will be here to find out. 

I realized a few days ago that I’ve become depressed since my gallbladder surgery. (I’ve fought depression my entire life, though not many outside my immediate friend group would know that.) When I’m depressed, I just quietly sit and stare, and my life and heart feel very “blank.”

I had my emergency surgery, everything went well, I came home, and I’ve been recovering well, so I have no reason to be depressed, but sometimes, when I’m alone for any length of time, and recovering keeps me tired and uninspired, I find myself drawn into a very blank, empty state of mind that I have a hard time putting into words.

I’ve tried to push through this for the past three days now, but instead, I’ve just been sitting here, staring aimlessly, and wondering why I feel this way. Sometimes, the best way to push through it is to “fake it ’til you make it.”

So finally, around 3pm today, I said to myself, “Enough!” I took a long, hot shower, washed and dried my hair, put on clean clothes (instead of staying in my nightgown all day) and went for a fairly long walk with my upright rollator. It’s 77 degrees, sunny, and bright here today, and I let the sun and its warmth surround me.

I felt the sun surround me, and before I knew it, I was smiling and feeling good. Never underestimate “faking it until you make it.” Sometimes, your soul is begging to be happy, but you just can’t find the way to start. That fake smile turns into pure joy before you even realize it.

I have lived in the Gulf Coast of Florida for 3 ½ years now, and yet, I have not seen a single beach here.  I spent 28 years living in Virginia, a stone’s throw from Virginia Beach and Ocean View. Seven years prior to that, I lived near Buckroe Beach and Grandview.   I started thinking about it today.  The last time I recall walking on a beach was in 2005, when I met my parents at Myrtle Beach, SC for a week’s vacation. 

You see, I can’t walk across soft sand without assistance, and I’ve had that problem since I was in my early thirties.  Back in 2005, my dad was at Myrtle Beach with me, and he knew just how to help me traverse the powdery sand.  I could walk by myself on the hard, wet sand at the water’s edge, and feel the water and grainy mixture of sand, shells, and water engulf my toes.   

My parents went for a walk down the beach, while I stood on the firm, wet sand, watching the sunrise and the gentle waves bank, ebb, and flow.  At one point, they turned toward me from down the beach, and my dad waved at me.  I snapped a picture, and in my head, I thought to myself, it’s as if they are leaving me and saying goodbye for the last time.  To this day, I have that photo, and it brings tears to my eyes because they are both gone now.  I still imagine them walking away forever, and when no one is watching, I wave back at them.

And so, it has been 18 years since I have walked on a beach – any beach.  I long to go and spend just a short while, splashing my feet at the edge of the waves. 

I’m very good at thinking of ways to do things.  I know they have beach wheelchairs, but that is not as simple a solution as you may think. 

First of all, you have to have someone to push that chair.  Second, you have to be able to find a parking place close enough to pick up that chair.  Last of all, you have to be able to get the chair back to where you got it, and get back to the car.  None of these are easy things in Florida, where the parking lots are always full of tourists, most everyone has a handicapped placard, and where I’ve become quite intolerant of direct sun. 

They even have motorized sand wheelchairs over on Anna Marie Island.  However, they only rent those by the week or the day (not by the hour) so it would cost almost $200 for that pleasure, and it still has all the parking and returning issues.  They assume you are renting a beach house, so those are the only places they deliver to and pick-up from.  Beach houses are, of course, only rented by the week or month.

Even without a sand wheelchair, if I had someone able to help me walk on the sand, I could probably still do it.  But that would also mean bringing a folding chair (a very specific one that is high enough for me, because I can’t sit on the ground or the sand and get up safely.)  Once I got there, I wouldn’t have the strength or the tolerance for the sun to stay too long.  And I don’t, stupidly, think the world revolves around me.  It would be quite an expedition to make this happen, with anyone who helped me finding little or no pleasure in the journey.  So instead, I look at the two photos I took the very last time – back in 2005 – one of the foamy water rushing forward, and the other of my parents turning and waving goodbye as they walked away. 

I spent so much of my life struggling to live independently and to rely only upon myself, while simultaneously distancing myself from things I loved because they forced me to be dependent.  With each thing you can no longer do, your world becomes smaller and smaller. While walking on a beach, or swimming in the ocean, lake, or gulf, are distant memories to me now, they are so close that they call my name even when I squeeze my eyes tightly closed, and try to think of mountains, or boats, or bicycles whizzing down a steep hill.  Somehow, it all becomes the sun rising, or setting, across a darkened sea.  And suddenly, I am washed-away, to where the horizon lies.