Sunday, August 2, 2020

Lynch Syndrome
Three years ago, my genetic code was studied to look for possible inherited mutations that could explain my family's cancer history: maternal grandmother-uterine cancer, mother-ovarian and colon, me-breast. New scientific information is constantly moving forward bringing to scientists, doctors, and the general public a better understanding of our genes. Two years ago I was informed I had no inherited genes. That has now changed. The variant with unspecified significance listed in my genetic test result from 2017 has become a trouble maker.

At the beginning of June, I received a call from a geneticist from UNC Hospitals. She let me know that she had been contacted about new information concerning my genetic testing. It is clear now that I in fact have a defective inherited gene which makes me more prone to a few different cancers compared to the general population. This defect is part of a group of genotypes classified as Lynch Syndrome.

I wrote about BRCA 1&2 PALB2 here and Lynch Syndrome here in 2017. 

The Lynch Syndrome genotype that I inherited is MSH6. The other genotypes involved in Lynch Syndrome are called MLH1, MSH2, PMS2. Depending on the genotype found depends on which cancers are more likely to occur. As is the case with BRCA 1 & 2, just because someone has inherited the defective gene does not mean the person will get breast cancer. Cancer will only occur if the other gene paired partner (one gene from the mother and one gene from the father)--mutates that cancer will develop.  Since my mutated gene, MSH6, can cause a few different cancers, cancer will only occur in the tissue where the partner gene mutates. Here is the breakdown and percentages of lifetime risk of particular cancers for all four genotypes:

The chance of getting any cancer in my life-time related to the genotype I carry varies greatly. In looking at the chart, you can see colorectal cancer has a 10-26% chance of occurring. Endometrial has a range of 16-71%. Those ranges are quite large. I have read that breast cancer may be a cancer related to Lynch Syndrome as well, but I am not familiar with which genotype. (I need to do more research.) 

With this new information concerning my inherited condition, I had appointments with a gastroenterologist and a gynecologist last week. For colorectal cancer, all that can be done to try and catch this cancer early is to do screenings. The doctor recommended colonoscopies every two years. As for gynecological cancers, that doctor believes a prophylactic approach is best. I am not opposed to this since my reproductive organs are doing nothing for me now. (If they are producing any hormones, it feels like the amount is minuscule. My thick, unruly hair of my youth is thin. My eyebrows and eyelashes are barely visible.) 

The doctor also said I am a good candidate for robotic surgery. (Seems strange to think of a robot cutting my organs out.)

The procedure could already be scheduled if not for my platelet problem. The doctor wants my count to be 100,000 platelets per microliter--normal is 150,000 to 400,000. Since platelets are what make our blood clot, they are important in surgery for obvious reasons. Unfortunately, because of my current treatment, mine swing from the 50,000's to the 80,000's which means for my platelet counts to recover enough for surgery, I have to stop treatment for several weeks. And, even then, there is no guarantee they will recover. I am not opposed to forgoing treatment for a few weeks, I have done it before for radiation and a few times to let my platelets recover, but not knowing how long it will take my platelets to get to the magical 100,000 is uncomfortable and perhaps not even possible.

Once surgery takes place it will be four weeks before I can lift anything heavier than a 1/2 gallon of milk. That complicates my working, but the risk of COVID19 infection currently has me not working in the classroom anyway so why not tack on another complication.

I must admit I am hesitant about surgery. Unplanned events can happen, including death. If I have a complete hysterectomy and then breast cancer decides it is time to do me in then I would have gone through an unnecessary procedure. If I were to live another seven years then it would be worth it. This is a good time to have a crystal ball telling me how long I will live with breast cancer except no such thing exists. 

Instead of the surgery, surveillance can happen with ultra-sounds of the uterus and ovaries. The blood test CA 125 can be performed to try to detect ovarian cancer. However, ovarian cancer is sneaky. It is often not detected until the late stages so probably not a good strategy. Tough decision for me to make. And to think, I was under the impression breast cancer would kill me before any other cancer could, but here I am, seven years later, now having to worry about other cancers, crazy.

Just another day in my not-so-normal life.

Sunday, June 7, 2020

A Guessing Game

It never fails. With each scan, there is such an enormous weight of emotions that sit on me waiting to crush every hope and dream I have.

All those painful, scary, heavy, and unwelcome emotions got up and walked away on May 25th after receiving the phone call from my nurse practitioner. Phew! 

She said, "There is good news! The spot on your pelvis did not show up on the bone scan."

What a sense of relief I felt!

Then she says, "But . . . ."

Gotta say I have had enough with the word BUT!

She tells me there are two hot spots on my ribs: One on my anterior of my 2nd rib and one on my anterior 5th rib.

She states she and my doctor spoke with the Radiation Oncologist in charge of the radiation treatment I recently received. (That explains why it took some time to let me know the results.) It was decided that those spots may be from inflammation caused by the radiation to the mass of lymph nodes in the mediastinum--the radiation had to exit the body somewhere. I can continue treatment with Kadcyla! A bone scan will be ordered in three months and will be compared to the CAT scan to be done during the same time period. For now, it is another watch and wait situation.

She also mentioned that she wanted to talk to me before I went to My Chart and read the report. I see why, and so will you. It is not very comforting.

Foci uptake in the anterior left second rib 
and anterior left fifth rib 
are favored to represent metastases.

I was hoping for another "nothing to see here" moment, but instead, it is nothing more than the old guessing game of cancer.

In the scheme of all things cancer, this is a good report. I am going to believe that this is not cancer spread and do my best not to worry. The ride of doom and gloom that I will eventually have to get on left without me today, thankfully.

In other happy news, a new buddy is coming to live with me. I am so excited!! He will be here on the 11th. Not sure of the name yet. Any suggestions?

Friday, May 15, 2020

May Scan Update

On May 4, 2020, scans were done of my chest, abdomen, and pelvis.

Here are the results:

Chest--decrease size of conglomerate soft tissue involving upper mediastinum currently measuring 0.9 cm in short axis in the paratracheal region previously 1.8 cm. Significant improvement of mass effect upon the right lateral wall of the trachea.
Radiologist is pleased and says this mass should continue shrinking over the next few months.
I am relieved!


Pelvis--New sclerotic osseous lesion measuring 2.2 x 1.0 cm in the right sacral ala--(near my tail bone). See picture below.
My pelvis has been clear since the beginning, so this is VERY concerning. Sclerotic osseous lesions (blastic or bone-forming) are areas of hardening of the bone. Radiologist suggests a bone scan (scintigraphy test) to confirm or disprove cancer spread to the bones. Oncologist says typically lytic bone (deterioration or decrease in bone) is seen with breast cancer of the bone. It could also be healing from an injury or infection or contrast uptake in that area at the moment the scan was done, not cancer-related. All of the research I have done is not so optimistic. First: how would I have injured this area of my pelvis? Sure I moved a lot of things into my apartment and also started jogging for short distances, but this doesn't seem likely--to me at least. Second: breast cancer can start out as hardening (increase in bone) and then become lytic (decrease in bone). Cancer metastasis can also have components of both.  

With not being able to work during this Covid19 pandemic because of my compromised immune system, the stay-at-home order from my state's governor, leaving my husband, and now this "new" lesion of possible cancer spread, I must admit my world is not on solid ground. Still hopeful though.

Bone scan is scheduled for May 26th. I will give an update then.  

This was sent to me by a friend.

Fate whispers to the warrior
You cannot withstand the storm
The warrior whispers back
I am the storm

                                                                           Jake Remington

Literally my body is the storm; I won't give up until there is nothing else that can be done.

Tuesday, April 14, 2020

Life Everchanging

I would rather not write about this part of my cancer story, but I have held off long enough.

I always knew progression would happen, again. Having had over four years of stable disease, I had become happily less fearful about my scans showing my disease was active again. I would never describe this lessened fear as thinking I was cured. I did, however, want to believe in that possibility. Just like I wanted to believe that my marriage would never fall apart yet it did.

Two devastating events happening at the same time is . . . well, I am sure you can imagine how difficult my life has been over the last 6 months.

For the past 8 months, my oncologist and her team would review my chest scans. They were never in complete agreement that the one mass of lymph nodes—that has been my nemesis since the beginning—was enlarging. The growth was a few millimeters each scan every three months, but that tiny increase did not warrant a drug treatment change. There was the nature of a CT scan to consider, and the fact I had been ill with whatever germs I had picked-up unknowingly from a third grader which might be causing those lymph nodes in the middle of my chest to enlarge. There were times I thought maybe my oncologist was being kind and not wanting me to worry. But, she has never been that way—always direct, never sugar coating anything regarding my disease. Time was needed to conclude true progression.

The most recent impression from my CT scan was stated this way by a radiologist: minimal interval increase in size of conglomerate soft tissue involving the upper mediastinum with slightly more pronounced mass effect on the lateral wall of the trachea. This mass, considered fused together lymph nodes, is located between my lungs, snuggled against my trachea, and in an area with important blood vessels making it hard to reach surgically. Its increase in size has caused my normal tubular trachea to turn into a “C” shape at the location of this mass. Now, as you might have guessed, the time had come to face reality. My mass was in fact progressing. A treatment change was in my future.

Years ago I wanted this area of death radiated. It was decided, though, that it wasn’t a good idea due to my prior radiation treatment having occurred around that location. Too much radiation to one area is not good. I have had two so far. The first radiation I received happened after my stage 1 diagnosis. Those beams were directed to the lymph nodes under my right arm and to the location of the 5 mm mass that was removed a couple of inches below my collarbone in 2009. The second was to the single nodule that progressed in my right lung in 2015.

The troubling result of this mass essentially working toward crushing my trachea prompted me to ask that we revisit the possibility of treating this mass with radiation. Years have now past since this area was radiated making it safer to radiate again--hopefully there would be minimal to no crossover when the plan was executed. Plus, the drug Kadcyla has been wonderful to me in terms of side-effects and control of my disease therefore I wanted to avoid moving to other drug treatments.

I met with the radiation oncologist at UNC Hospitals. She was warm and made me feel like she would do everything she could to help me. She made me feel I mattered. As any patient knows, that is crucial. Radiation was going to happen.

The following three weeks, (Feb 24 through March 13), I worked four hours and then traveled to UNC Hospitals (2 hours 15 minutes one way) Monday to Friday. My secret that I have kept from my team and the administration at my school is no longer hidden. Never did I want them to know, but with having to receive treatment for 15 consecutive days, minus weekends, they had to be informed.

My next scan is May 4th. That will be a nerve wracking day.

The rest of my life has been emotionally charged as well. On March 23rd I moved out of the house I have lived in since 1999. I raised my kids there. The memories inside those walls fill every single crevice. I am heartbroken to leave it all. The decision to move away from my husband of almost 27 years was not easy, but I had to do it, for myself. The reasons are many, but the most difficult one to deal with is this: an alcoholic will always choose alcohol over you. If I wasn’t the priority, if I wasn’t being respected then why would I stay? Why would anyone?

So, today, during this Coronavirus Pandemic, I am forced to quarantine in my new place because being a cancer patient in active treatment puts me at high risk for contracting that disease. Being trapped within my four walls has allowed my stress levels to come way down as I work my way through my things finding new places for them to reside. Despite my worries about the economic consequences of this pandemic on individuals and society in general, my being able to wash away so much of the stress I have been experiencing has been a great relief for me personally.

In the next few months, I want to be able to sit back and happily proclaim I made the right decisions concerning my treatment and my future divorce. This combination of events has been so very hard. Only the passage of time will I know if all my decisions were the right ones.

By the way, April 1st marked seven (7) years since I found out my disease was still trying to kill me with the CT showing the mass that was just radiated--along with lung nodules in both lungs that have disappeared. Seven years!! Fifteen years since my diagnosis of stage 0. I think that is amazing.

Thursday, December 26, 2019

My Sweet Precious Tucker

My dog died. For anyone who has ever loved a pet you know how unbelievably sad those simple words can leave you feeling. This isn’t the first time I have had to say goodbye to a dog, but it is the first time I felt the dog’s survival was connected to mine.

Tears still fill my eyes during quiet moments when I think about him. I knew he wouldn’t make it through the summer. He was sick because his body no longer worked as it should, and there was nothing I could do to fix him, just like I can’t fix me.

As I was recovering from treatment for stage 1 breast cancer in 2010 with the only visible clue being the shortness of my hair, I began rescuing puppies and kittens from the local animal shelter. Through an organization called Adopt-n-Angel I provided these animals with veterinary care. Once they were de-wormed and spayed or neutered, I would take them to PETCO in Wilmington where the public could meet them and when just the right person met the right dog the magic began and off they went to their new home.

It was on a trip to the shelter that I glanced down into a cage and saw an ugly mutt in need of grooming. At that moment I knew that the new arrival to the shelter would be mine. He didn’t shy away from me when I opened the cage to meet him. One of the staff members of the shelter told me the shaved area on his side was their attempt to cut the mats of hair that covered his body. The plan was to do a little at a time since this poodle mix was in such bad shape, fur wise, and wanted nothing to do with the process of shaving.

After I brought him home, it took three days to rid his body of the matted fur. Underneath I found hundreds of fleas. Poodle fur is not the best hair to have for a young dog traipsing around a muddy hog farm from which he was supposedly found. The dachshund in him—or so we thought--found tremendous enjoyment digging in mud. After the cutting and the bathing, the dog was now clean, white, and huggable.

This new dog brought such joy to my life right from the start: from taking a tennis ball up the stairs in our house and dropping it so he could chase it down the stairs and then doing it all over again, to following me everywhere I went throughout my house. My favorite antic that my new little buddy did involved my socks. He would come into the bathroom as soon as he heard the shower running. Pushing the door open, he would go directly to my socks piled on the floor with my other worn clothing stealing one of the socks and taking it to his bed in the living room. He would chew on it for a few minutes and stop and lay his head on it. It was adorable! at least to me. My youngest daughter discovered that he would bark and shy away from a book she was holding that had a golden retriever picture on it. If shown another book of the same size, he did nothing, but put the front of that book in front of him—just the picture side—the barking began.This new dog to our household, now known as Tucker, was my new friend, and the beginning of 9 years of joy for me.

In time, I found myself thinking—irrationally—that if I kept this dog alive then I would keep living as well. Why I thought this simply baffles me. I am not superstitious or believe in outside forces controlling my destiny, but I was so desperate in my need to stay alive that I wanted to grab onto something that allowed me to imagine having some sort of control of my continued living even if it was logically ridiculous. That is where his survival became connected to mine. It proved to be futile in time, my silliness revealed. I progressed to stage IV. Now Tucker would outlive me, or so I thought.

About a year ago, I noticed my buddy was having trouble getting up and down our front steps. He had been heavier than he should have been for a while, but I never connected it to what I was about to learn. Based on his symptoms of lethargy, overeating, and difficulty maneuvering the stairs plus the noticeable change in how much water he was drinking causing him to urinate in the house, I took him to the vet. A blood test was ordered. The result crushed me. My sweet 8 year old boy had Cushings disease. It is a disease common in poodles and dachshunds affecting cortisol production (stress hormone). The cause is either a tumor in the adrenal glands under the lungs or a tumor in the pituitary gland outside of the brain—didn’t matter where it was; treatment was the same. My research revealed his life expectancy was 1 to 3 years. Treatment with a drug could extend his life, but no way to know for how long. He was dying, just like me.

Drug treatment began. His food intake was monitored and he lost weight. Due to his disease and the added diagnosis of a thyroid condition his hair thinned, his skin darkened and flaked, and his excessive water drinking continued. Urinating on the floor became the norm—luckily our floors are not carpeted. I began laundering towels everyday because of the clean-up required. 

He looked worse and worse as the months moved along. Weekly baths became necessary. Overall he didn’t appear to be in pain though I have no way to know for sure. Then one morning in July, he didn’t want to move upon awaking. A few days before, he had not finished all of his meal. On this morning he didn’t want to eat at all. I hated what I felt I should do at that moment. I knew this day would come. It hurts so much to think of it now as it did then, but I was terrified to watch him suffer as he died. The call to the vet was made.

The next afternoon, I took him. The emotional pain was building inside of me as each moment passed. The needle to relax him entered, he yelp from the pain of it. I couldn’t turn back. All I could do was hold his sweet face in my hands telling him how sorry I was and how much I loved him. It has been many weeks. My eyes still spill from the sadness of it all.
My Sweet, Precious Tucker

When it was over I was such a mess. So much so that the vet tech asked me not to drive home until I could do so safely. My sweet, precious friend was gone. I sat in my car and wept. Tucker lie in the back. The drive home was quiet with an occasional sniffle and an, "I love you, buddy".

I’ve missed many months of blogging and writing. For the first time in my life, writing wasn't my go to in order to deal with my emotions. I avoided it simply to avoid feeling my emotions. Sadness has been hanging over me since my scan showed possible progression then the loss of Tucker making my sadness greater. In September, my married life became . . . well, I will say "unpleasant" but that is too kind a word. From that point, I became determined to keep myself busy. That way I could limit how often I thought about it all. Having stage IV cancer and all that surrounds that is bad enough but throw in more of life’s struggles on top of that and I start to wonder how long I can continue to keep pushing through it all without crawling in my bed and just saying, “To hell with it”. I love life, however, what I don’t love is how sad the events of living can make me feel. Somehow, though, I keep going. Work keeps me busy and focused instead of drowning in self pity. My kids are the best--I now lean on them more than they lean on me.

Another post will be up soon telling of my latest scan results and continued treatment. And, I will probably touch on other significant events that have and will be happening in my life.

Before I end I must extend a huge "Thank you" to one of my followers. She sent an email to me because she was concerned about me not posting anything since June. Her words helped me return to this blog and finish this post that I began in July. Someone caring is the best gift a person can ever receive. I am so thankful she took the time to tell me her thoughts and to check on how I am. It felt good to sit down and write again because the last six months have been hard. Once again, thank you, Michele.

Saturday, June 29, 2019

June Scan Report

After 2 months of waiting, the results are in.

Two months of wondering if the lymphadenopathy reported by the radiologist in April was due to some kind of infection (my trying to reason that this was not progression), I have learned—again—that CT scans are never 100% accurate. The multiple x-rays are put back together to form an image that can be slightly different with each scan. This follow-up scan proves that statement. I will feel much better about the most recent radiologist’s impression if that same impression is reported by the professional reviewing my next scan in September. For now, I am moving forward with my life. Happy doesn't touch how I am feeling about remaining on my current treatment of Kadcyla (TDM-1). Just had treatment #87!!

Here are the impressions of the radiologists reading my scans:

April 15th 2019
Right paratracheal node measures 1.4 x 2.3 cm on 4:21 versus 1.2 x 1.9 p.m. on the prior. *Increase is determined by the shortest axis which is the first measurement.

Impression--Progressive nodal metastasis as evidenced by increased high mediastinal adenopathy—increased size of lymphnode.

June 17th 2019
Undefined nodal tissue throughout superior mediastinum with largest measuring 1.5 cm in short axis (rt paratracheal station) similar to prior examination. (short axis difference of 1mm on this scan)
Was 1.4 x 2.3 cm on 4-15-2019.

Impression: No definite progression of disease. 

Yeah, not seeing "No Evidence of Active Disease (NEAD)" or "No Evidence of Disease (NED)" jumping out at me any longer on my reports is deflating, but "No Definite Progression of Disease (Stable)" is tremendously wonderful in the world of metastatic disease especially when compared to "Progressive Nodal Metastasis". I will take it!