If it's not one thing . . .

I am sitting here staring at my computer hoping the words will come easily. It has been awhile since I have written on this blog, or anywhere, really. COVID isn't the only thing in my life that has made 2020 an extremely crap ridden year. I sit. I stare. I wait. I know that if I would just let go and allow words to spill onto this page, I could then shape it into what I want to say. It is hard but here goes.

After genetic testing revealed that I have Lynch Syndrome, see this post, and because of it I am at a greater risk for certain cancers compared to the general population, I had to make a decision: keep my uterus, cervix, ovaries/ tubes, or have surgery to remove them. I chose the latter. 

I also was advised to have a colonoscopy. So, I did that too, in October. I had been avoiding having a colonoscopy because my oncologist and I talked about it years ago. At that time the thought was breast cancer would kill me before colon cancer would and surveillance was occurring anyway every three months by the CAT scans. I finally caved when a gastroenterologist from UNC-Chapel Hill thought it would be a good idea. One precancerous polyp was found, so I do feel better about having it done. The two-day prep was awful, and if I am still around in 2 years I am supposed to have another.

The newest doctor(s) in my life, a GYN oncologist and her team, recommended I have a complete hysterectomy and an oopherectomy. I waffled back 'n' forth, trying to figure out what was best for me. The possibility of being diagnosed with another type of cancer or my breast cancer metastisizing to my uterus or ovaries helped me decide. I want to live as long as I can, so under the skilled hands of a surgeon doing robotic surgery, I sit here now with no uterus, ovaries, or fallopian tubes. My belly has finally returned to its normal size. 

Two days before the big event, I was asked to go through pre-op which involved collecting my blood to look at white blood cell and platelet counts. A nurse collected blood from the inside of my elbow. I have never had a nurse who was so forceful at collecting those vials of blood. I mean she shoved the needle in and pressed hard in order to get the blood to flow quickly. When she was finished, she placed a piece of gauze where the needle had penetrated my skin, added tape to hold it in place and sent me on my way. I had another appointment during which I would learn about the procedure. When I reached a desk for check-in, I felt a warm, wet sensation coming from my left arm which was inside my coat. Separating myself from my coat I discovered blood spilling out from under the gauze. Since this was not a little bit of blood, I panicked just a wee bit. I asked for help and the young woman sitting at the desk ran to find someone to help me. She seemed to be taking way too long in her quest that all I could do was apply pressure to the area with the small blood saturated gauze taped to my arm and cry. Yep, stood there and cried. The help I needed arrived, and after leading me to a back room, the bleeding was stopped. 

my arm the day after the blood draw

November 25th arrived--the day before Thanksgiving. The day of my oophorectomy and complete hysterectomy. 

Afterwards, a doctor came by my room. I was told about the complication which explained the need for the catheter to remain in my bladder for a week. While the surgeon was telling the robot where to cut and when to cauterize a blood vessel, I learned that a small puncture wound occurred damaging my bladder. She explained that I had a lot of scar tissue from the two c-sections that brought two of my children into the world. There was so much scar tissue she said that my bladder and uterus were "cemented" together. The hole was repaired, and I was so grateful to be alive--one of my greatest fears is not waking up after a surgery. I stayed overnight in the hospital and was released the next day. As you can imagine, walking around in public with a foley bag attached to your leg does not equate to feeling good about yourself. And yes, I wore long pants.

I was discharged from the hospital on Thanksgiving day. All went well over the next week--so thankful I didn't have to work. Soon I was back at UNC for a voiding cystogram where a contrast was injected into my bladder. The technician asked me to hold as much of the contrast inside my bladder as I could in order to make sure there was no leakage. My bladder inflated as it was supposed to and no leaks were found, so the catheter was removed. Ah, freedom!

The next Saturday, I had an infusion. It had been six weeks since my last one--delayed in the hopes my platelet count would increase prior to surgery which it did.

By Sunday, I had burning and pain with urination that actually had started as soon as the catheter was removed, but now it was affecting my quality of life. The pain was tremendous and getting up through the night and feeling like I had to urinate every hour caused me to go to a clinic on Sunday. There I was given antibiotics for a UTI (urinary tract infection). I should have found relief a few days later, but no, I was still in pain. 

My UTI wasn't getting any better causing me to make an appointment to see one of the doctors on my surgeon's team. Before addressing my UTI, she examined me and found an area in my vagina that was irritated and not healing as it should. (I wonder if the the tools used to remove my uterus via the vagina may have caused this injury. When you don't have a lot of estrogen in your body, the vagina does become dry and less pliable--purely my speculation since no one has offerred any explanation, but it makes sense to me.) Also, the doctor found a small blood clot of which she removed. Then she placed some silver nitrate on the wound to try to control the bleeding. (It was not heavy bleeding, thankfully.) The antibiotic I was taking was changed. Within a few days, I thought I was getting better, although ever so slowly. 

But alas, my UTI proved to be complicated. I received a phone call few days later from one of the doctors on the team. She said my urine culture was back. It showed that the particular bacteria causing my UTI was oral antibiotic-resistant. She asked that I come to the hospital and be admitted for IV antibiotics that night. So, I took care of a few things, and away I went back to the hospital. 

Oh, the miles my newish car was traveling. (I bought it October 19, 2020.)

I spent one night in the hospital where I received two doses of the IV antibiotic. The rest of the medication was to be given by me through my port at home. Once I was cleared to leave, I hurried home. The drugs were to be delivered to my home at 8pm that night. I waited and waited. Eight o'clock became eight thirty. I tried calling the company responsible for the delivery but despite the internet telling me this business was open, no one would answer the phone. I then decided I would go to my 24-hour pharmacy, CVS, and pick up another prescription drug I needed. Well, for some reason unknown to me now, I decided to call the pharmacy. That is when I learned CVS's pharmacy is not 24-hour right now (thanks COVID) and would not be open after 9pm and due to my waiting for my drug delivery, I missed the chance to arrive at CVS in time. So I went to bed, mad.

I called the company responsible for the drug delivery the next morning. For whatever reason, no one would answer my call at 8:30 a.m. They, again, were supposed to be open. Out of frustration I called my GYN's office and asked for help. A home health nurse was supposed to be coming to show me all the steps for administering the drug. But, what good would that do me if the items needed had not arrived?

An hour later, I heard back from my doctor's assistant. She was getting things moving since some miscommunication (or actually no communication) between people had occurred. The drug was now scheduled for delivery by 1 p.m. 

In the end, the problem was resolved. The drugs were delivered and a home-health nurse came to see me. (She was notified at the end of her shift that she had one more patient to see, me.) I am grateful she went out of her way to help me. When she arrived, she apologized for the what should have never happened with my care.

She then proceeded to explain what I should do concerning administering the antibiotic, the saline, and the heparin through my port. I admit it was unnerving. I didn't want to do it wrong and something bad happen to me because of my own stupid mistake. Once I got the hang of it, it wasn't hard to do. By Saturday, I gave myself the last dose. A different home-health nurse came by late that afternoon and de-accessed my port. It was nice having that tubing that dangled from my port gone. Now, I could take a long, hot shower without worrying about getting my port wet.

delivery of my drugs

prep--work done before injecting drugs: saline, 
antibiotic, saline, and heparin plus all necessary 
alcohol wipes used at the end of the tubing.

me taking care of me

The picture below shows the bruise that no one has any idea how I got. The only conclusion is that someone may have had the blood pressure cuff too tight during my surgery. It is the worst bruise I have ever had.

During this time I began wondering what is going to go wrong next. It is 2020 after all.

I had a CAT scan on December 7th to check for any progression of cancer in my body. My oncologist called me the same day but not with any results concerning cancer. She wanted me to begin taking Eliquis for three months because a small blood clot was found in my left lung caused by deep vein thrombosis (DVT). Not an unusual complication after abdominal surgery. Precautions against this happening were taken. I sported lower leg messagers while in bed. Plus a blood thinner had been given. Yet none of that helped. Eliquis is now added to my growing list of drugs to be taken daily. In three months I will no longer need to take it, so I am told. It is supposed to prevent any future clots and to help my body break-up the one in my lung. Since I was still bleeding from my vagina, it was decided I wait a few days before I begin taking it.(Another thing to worry about. Whew! I need a break.)  During our conversation, I asked if she could call me about my scans even though I was scheduled to see her on Monday. I expressed that scans done on the 7th and then discussion of them not happening until the 14th is way too long to wait. I have never had to wait that long, ever! For years now I have done the scans then saw her to discuss the preliminary scan report and if all was great, I would head to infusion. All of this was done in one day and now she wanted to do it over two days. She was quite resistant about calling me. Instead she wanted to see me in person on the 14th. Of course this made my brain jump to all sorts of conclusions. (Surely she already knew what was going on in my body. I mean she spoke to the radiologist over the phone. Why would they not speak of any cancer spread?) Somehow, in the end, she agreed to call me when she had the completed report. As it turned out, the telephone appointment would have had to occur anyway. I was in the hospital for the UTI on the 14th--the day my appointment with her was scheduled. 

News of my scan report came a few days after my telephone call about the blood clot. The words enlarged lymph node in the front of my chest along with some plueral thickening of my right lung suspicious for metastatic spread just takes the joy of believing there is a future I can continue planning. All my dreams began to vanish. And, now I must wait for another scan to confirm progression or not. That will be done on February 5th. I will meet with my oncologist a few days later for the results. The year 2020 has truly sucked for me and not just because of COVID. Just one bad thing after another. 

• February-- Radiation to medistinal nodes 
• January--I was told I had Lynch Syndrom which is a genetic condition which makes a person more susceptible than the general population to certain types of cancers.
• March--I left my husband. 
• August--Human Resources and my principal were trying to figure out what to do with me during my school's shut-down. I was offered half my disability for one year (no one could live on that). I am only eligible for half since I haven't worked there long enough for full benefits. At one point I felt like I was being pushed out of my job after my doctor said I needed accommodations made and that working from home was her recommendation. I submitted what accommodations would be needed showing everything I could do from home, but those were rejected by HR. During the conversation that seemed like they were telling me I would be let go if I could not work on campus. I mentioned--through tears--I had a BA in elementary education. With that the woman I was speaking with said she would call back. Well, instead of her calling it was the Chief Officer. Their tune had changed and accommodations were made. So, for the first part of the new school year I worked at home calling parents, providing technology assistance, and working with students on-line until mid October.
• Hysterectomy and Oorechtomy 
• Possible progression

With all the trouble my hysterectomy has caused me, I was told no cancer was found in the uterus or ovaries. That is great! except for the one part of me thinking, "Wow, if I had known that I wouldn't have gone through with the surgery." But, hindsight is 2020 in this crazy year of 2020. 

The day after Christmas, I had another infusion. I truly need Kadcyla to get to work and not allow any cancer cells to be resistant to it. The word "worried" isn't adequate to explain how I am feeling about the possibility of moving on to the next in-line drugs. At this point, radiation to the enlarged chest lymph node or the thickening of the pleura in my right lung isn't a possibility nor is removal of these tissues. In the past, when progression occurred, I had radiation as an option to stop the cancer cells. This time I feel like I am falling into the abyss with no way out. All my future plans are a fantasy even though my oncologist said she wasn't convinced that progression was occurring. I am trying to side with hope. But lately, fear has been in charge. 

I will end this post with the three things that have truly made this year bearable: My youngest daughter, my pupster, Dashiell (aka Dash),  and my newish car that replaced my 17 year old van with 400,109 miles driven.

HAPPY NEW YEAR!!

Lynch Syndrome

digitphotos.com

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.

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?

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!

Abdomen--clear!

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.

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.