Cancer’s Ugly Turn

 My cancer has taken an ugly turn. I will update more if able. Been in hospital since Oct 20th. Hoping things are turning back around. 

Featured on Everyday Health Website

At the end of January, a video production company interviewed me and my daughters for a possible feature on a website called Everyday Health. It was quite a surprise when I was contacted a few days later to inform me I had been chosen. My daughter, Audrey, spoke for the family.

The first video is called What my Mom's Metastatic Breast Cancer Means to Me; the second is called Diagnosed with Breast Cancer the Third Time Around.

The videos produced were released on March 18th. There are two.  Click the links below to see the videos. You will be redirected to the website.

https://www.everydayhealth.com/breast-cancer/women-with-metastatic-breast-cancer-videos/#what-my-moms-metastatic-breast-cancer-means-to-me

https://www.everydayhealth.com/breast-cancer/women-with-metastatic-breast-cancer-videos/#diagnosed-with-breast-cancer-the-third-time-around

While you're there, explore the website.

Thanks for watching!

Implants No More

 A few weeks ago, after showering, I noticed a dark area underneath my artificial breast on the right side. I wasn't actively looking for anything, I just happened to notice it when I glanced in the mirror. Of course, I immediately touched it. The darkened area was soft where the implant was pushing outward. It didn't hurt unless I pressed really hard. The rest of the implant felt hard. The skin on that side had a darker hue than the left.

"This has to be bruising," I thought, "but I haven't bumped into anything recently to cause it." 

To the internet I went. This had to be Capsular Contracture. 

Here is the definition of Capsular Contracture from Wikipedia: The occurrence of capsular contraction follows the formation of capsules of tightly-woven collagen fibers, created by the immune response to the presence of foreign objects surgically installed to the human body, eg. breast implants, artificial pacemakers, orthopedic prostheses. . . . Capsular contracture occurs when the collagen-fiber capsule shrinks, tightens and compresses the breast implant. (It is the immune system trying to protect the body.)

The right side of my chest had been tighter than the left for years. However, recently, I had noticed some minor pain that would come and go. Plus, now the right side implant sat noticeably higher than my left.

After some thought, I decided to call the plastic surgeon's office. It was a Sunday meaning I would have to speak to the surgeon on-call, which was fine. All I I needed was someone to tell me this was not an emergency situation. 

My implants were placed in 2005. Since then I have had radiation over the whole area and two other more targeted radiation treatments in that same area. Radiation is probably the reason for the implant's demise.

The doctor on call that day made me feel at ease; there was no hurry to get them removed. He asked that I call the office to make an appointment.

The appointment was made.

As I put on the fashionable paper vest and waited, I thought about how I wished I wasn't there. Yeah, the mask was hiding my looks, somewhat, but I couldn't forget what my plastic surgeon said in 2005 when I was early stage.

He said, "I am so glad you don't have to do Chemotherapy. So many people look so old afterwards."

Isn't that a nice memory to hold on to?

My plastic surgeon arrived, took one look--didn't even touch the bruised area--and said, "Yeah, that needs to be removed." 

Good grief, it seems like every time I think I am through with medical procedures on my scared-up body I have to undergo another one. 

"We could do this or that," never entered the conversation. I had one choice for my capsular contracture: take it out. 

I did have a choice about the left one: take out it out or leave it. I am a fan of symmetry, so I chose the latter. 

The procedure was done on March 12th. Now my 90 pound frame, looks like a prepubescent female. Thanks, cancer.

When I got home, I again revisited 2005 when I underwent bilateral mastectomies. I had forgotten how unpleasant it was to have drains inserted under the skin. Any fluid made by my body as it healed traveled down a plastic tube and into a collection bulb, gross. I wasn't in a lot of pain, thankfully--only took one prescribed oxycodone pill, but boy did my skin itch. I was miserable! Since the procedure was done Friday afternoon, I had a few days to figure out what I was going to wear for work to hide my shrunken chest and to figure out how to hide those awful bulbs at the end of the drains. Monday came, and I decided the best thing for me was to remove the collection bulb at the bottom and tuck the tubes into my pants. I used the cap on the bulb to close off the tubes. 

Since there wasn't a lot of drainage, the two drains were removed on Friday. After the mastectomies, I had 4 drains. Those stayed in much longer. 

I know the image below is ugly, and I might regret showing it--but this is the Cancer Classroom. I wanted to show what the tubing and the bulbs looked like. Images can be more impactful than words at times. I think that is true here.

Cancer treatments damage a person's body in a variety of ways. The bluish area at the center top is radiation damage. There is a lot more of that above it. The scars above and around my belly button area are three out of the four I have from the hysterectomy in November--for me, a cancer preventative surgery. 

As the following week moved along and the next week too landing me here, Sunday March 28th, I noticed and could feel my lymph system at work. There was fluid accumulating; my body couldn't keep up. The right one, in particular, felt like a balloon filling with water. Maybe I should have left the drains in longer?

On Friday, I called the nurse. An appointment was made. There, the fluid will be extracted. In the meantime, I am wearing a tight athletic bra. I have placed soft padding over the fluid filled areas to create pressure to hopefully slow down further fluid accumulation and the to help my body absorb some of the fluid already present. 

Just another day in the life of a metastatic breast cancer patient. 

Scan Update

Well, it is over. I  made it through another scan. 

To recap: Three months ago I learned that a lymph node toward the front of my chest had enlarged to 1.9 cm--that is huge! Those guys are usually not even a centimeter in size  Also, there is some thickening of the pleura of my right lung that the radiologist deemed potentially metastatic spread. 

As I usually do, my brain went through the different scenarios preparing for what could be the worst or even the best results of this scan. I would think about what my oncologist would say. Would she begin with: how are you feeling--an indication the news was not good. Or, would she jump right in with the only information that mattered--an excellent start for what will most certainly be great news. Then I would play my mind's movie, what I would say and how I would say it. In the past, I have had some kind of plan. A plan I could throw at her hoping she catches it in order for me to stay on my current treatment. Luckily, in the past, she has caught it, agreed to it, and the plan worked. But, my research and the knowledge that I have already had so much radiation to my chest made me painfully aware this time I had no plan. My sense of control--so needed by all of us--was gone.

The knock came, my oncologist entered. She seemed at ease, a good sign. She sat down and began talking. "Well, your scans look good". 

I say, "What?" 

She looked at me like: what do you mean, what? 

That followed with the best conversation. A conversation I was so sure I was not going to have. 

She let me know that the lymph node had decreased. Could have been some kind of infection causing the increase but really all that mattered was its size. It wasn't super small, yet, but it was down from 1.9 to 1.5 cm. As for the pleural thickening, it was stable. She didn't seem that concerned about the thickening having not mentioned it to me two months ago. I learned of it by reading the radiologist's comments on my report. 

We moved away from the scan report as our conversation continued. I asked her whether I should get the COVID vaccine. She said, "Yes", without hesitation. 

My next scan was set and will be at the end of May just before school lets out for the summer. And, I get to continue my treatments with Kadcyla. The burden was lifted. and I smiled all the way to the infusion room. 

Thinking of spring and all of life's possibilities as I continue to find my way in the world after leaving my husband made for a tremendously happy ride home. If Kadcyla can continue doing the incredible task of keeping those little cancer cells in check, maybe I will be watching my youngest graduate from college in 2025. Hope is still winning!

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.

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.

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!

Detox Explained

Saw this on Facebook from Vaccines R Us. I like its simplicity. 

Dream Crusher

Dreams: they are the things you think about and hope for when you believe you have a long future ahead of you. Some you plan and then work for; some just fall into your life with no effort at all; some you keep wishing for because why not, you might live to be 100!

Then a random event happens to you that takes all the thinking, planning, working, serendipity, and wishing that you did and dumps it all in a pile forcing you to watch it melt away with every tear you cry.

Then another unexpected event happens. One that brings you out into the sunshine again. You start to breathe and take in all the freshness that a spring day can give. Some may call it divine intervention. I call it luck. Whatever it is, your world opens up and you start to dream again.

I had dreams that ceased in April of 2013. Then, those dreams sprang to life again when my living was not halted as quickly as I expected. I began planning to see my youngest graduate from high school and began believing that seeing her graduate from college might be possible too. I planted daffodils expecting to see their beauty at winters end. I thought about the trips I would take to see my older children as their adult lives took root with the partners they have chosen. Working full-time wasn’t a thought any longer. It became a reality! I made plans--not the I gotta get it done before I die kind of plans. The happy kind of plans that only futures can offer. I began thinking in terms of years instead of months, or weeks, or days.

For 4 years after the first 2 progressions, my oncologist walked into the room after each scan telling me, “Your scans look great.” We didn’t talk about what could be done next. We talked about the side-effects I was experiencing from Kadcyla and what could be done to ease them. Each wonderful and unexpected scan report brought such jubilation.

My hugely important scan day approached hopefully marking 4 years of no progression. It had been many months since x-rays were shot at me from many different angles putting together the picture that defined my dreams. Though thoughts that my good luck might be ending existed, I tried to see beyond those and see only the ones where I continue celebrating. My oncologist for so long did not seem to believe that my living 6 years with stage IV breast cancer was possible. She eventually began cheering me on saying, “We don’t see many people on Kadcyla as long as you.” I've been on it for 5 years, 83 treatments in all.

The familiar knock on the door came. She walks in and says, “Your scans look good. But . . .”

I stared at her bracing myself for her next words.

“Five lymph nodes look to have each increased about 3mm,” she says. “There are four on the right along your trachea and one underneath your arm.”

Every plan, every hope, every wish vanished. The Dream Crusher has reappeared.

“I,” she says, “am not convinced this is progression.”

Was she offering hope? Did she truly believe the words she spoke?

The rest is blurred by my thoughts reminding me my good luck would end, someday, this day.

I heard her say something about the nature of how CT scans work, and the possibility I could have a virus or bacteria causing those lymph nodes to enlarge as they work to kill the tiny invaders.   

She said, “Let’s scan again in eight or nine weeks.”

“OK,” I said.

I want to believe the CT scan has it wrong about the five lymph nodes showing progression, and that my body is fighting some infection. Five lymph nodes enlarging, though, is no small number in the world of metastatic disease. I remember—oh too well—a scan in 2014 that showed a small increase in size of a few lung nodules. I left the treatment center that day not worrying about it. I don’t remember discussing progression. Taxotere was dropped from my treatment plan because I was tired of the side-effects. Herceptin and Perjeta were given every three weeks for another three months. I thought since she, my oncologist, allowed Taxotere to be dropped, it could mean nothing but good news. Looking back, I think she knew my cancer had found a way to out-smart the drugs. One more scan would be the truth teller. It didn’t matter which drugs I took at that last treatment. This feels hauntingly similar.

Sadness has again entered my world. What a crappy way to spend my spring break from school.

Update

Just before Christmas, I began working as an assistant for three 2nd grade teachers in a low performing public school. Not only do I pull small groups of students to work on reading and math deficits, I work as a substitute teacher throughout the school when no substitute can be found to cover a teacher's classroom in their absence. Needless to say, I am busy all day long. I love helping these kids, and since I learned several months ago that my certification to teach could be reinstated, I think about someday having my own classroom. This would be exciting, but at the same time probably would not be a great idea with my condition being so unpredictable. As it stands currently, weekends are what help me recover from working full-time hours. Teaching would require far more hours than my current 40 and weekends would not be for sleeping.

Yesterday, I had treatment #82 of Kadcyla! I find this amazing and unbelievable. Plus my platelets registered at 119,000--normal is between 150,000 and 440,000. Three weeks ago they were 117,000 which was the largest number seen since March of 2015. Usually they have been anywhere from 70,000 to 90,000 because of Kadcyla. My other blood work numbers have some highs and lows but nothing too far away from the normal range. Great news all around.

April 15 is scan day. I haven't been scanned in a while. Oncologists become more willing to allow for a longer time to lapse between scans when cancer is stable. It has been a year on April 22 since my abdomen has been scanned and 7 months since my lungs have been scanned. If this scan is clear, I am sure you can imagine how happy I will be. My oncologist promised a discussion about extending my treatments to every 4 weeks! That might help lessen this horrible tiredness I have been experiencing.

April 1st is 6 years of living with this disease. I would love another 6.

Kim

Though it is not what I had hoped, Kim Vogler Harris left this world without telling me goodbye.



We were cheerleaders together in high school. Though we were close friends for only a short whirlwind of time in our lives, there was a bond formed between us that would always be special to me long after we went our separate ways.

Those years of high school that brought us together were spent  practicing cheerleading routines afterschool, preparing the banner for the football players to run through at the start of each home game, performing at pep-rallies and cheering at the games for our school’s football and basketball teams, and of course there were the weekends. Friday nights we might go to Pizza Hut after a game. Eventually an arcade opened up close-by and we would go to people watch or put some coins into a machine to find out what all the hype was surrounding a game called Pac Man. On Saturdays we might go roller skating or walk around the mall with other friends looking at clothes and oohing and aahing at the cute puppies showcased in the pet shop. Once we had our ears pierced while at that mall—mine for the second time, hers done for a third. Keeping our eyes peeled for cute boys was ongoing though we didn’t actually talk to very many.  And why was a bottle of Boones Farm wine necessary on more than one occasion? Honestly, I have no good explanation for that. Sure it was cheap, but it wasn’t very good. We thought we were so grown-up.

After graduation, we did what a lot of people from our small town did—went to Myrtle Beach, SC for a week of fun in the sun. Those were the days when we didn’t care about protecting our skin. Our skin soaked in the sun’s rays, glistening from that layer of baby oil we had covered ourselves in. That week of freedom and relaxation seemed like the perfect vacation. It was until the unfortunate incident of a boy who Kim had been dating decided to split his time with her and another girl from our high school—yeah, it got ugly.

While I was lost in the land of “I don’t know what career to pursue”, she knew what she would become. She didn’t miss a beat completing her education and becoming a nurse. Seems like only a short time ago—although it really wasn’t—she let me know she was retiring from that 33 year career. It was time to enjoy life, though the decision was forced on her. Ovarian cancer had reared its ugliness upon her life. She, like me, had entered the final chapter of her life.

After my 3rd semester of academic performance failure in college, my parents refused to continue supporting the social-fest I was enjoying. I moved home and Kim and I reconnected getting together on weekends when we could. Soon I had saved enough money, working the breakfast shift at McDonalds and the lunch shift at a restaurant called Annabelle’s, to buy my first car. Kim was there for that $8,000 purchase; sat right next to me in the passenger seat of that 1985 red Ford Mustang with cloth seats that my dad was sure was the perfect car for me. I had dreamed of a Honda Prelude with the fancy digital speedometer read-out, but that would have been a financially bad move so that Ford Mustang became mine.

I soon moved back to the college city I had left to figure out what was next in my life. Kim and I stayed in touch but not as often as we once had. She stopped by once to see me after attending a Bryan Adams concert. The next time we crossed paths was not under such happy circumstances for me. My dad was ill and in the emergency room of the hospital where she worked. We stepped away from the chaos happening around my dad while the doctors evaluated his situation. He had been diagnosed with lung cancer recently, but this particular visit was for a bleeding stomach ulcer. We quickly caught up on our lives and she offered hope to me regarding his condition. Soon I returned to my dad, and she returned to her work.

Kim, Mistie, Me

It was slow, but eventually I entered the Facebook phenomenon. There we connected again.  Four years ago or so, posts let me know she had been diagnosed with ovarian cancer. The prognosis was good until it wasn’t. In 2016, I asked her if she would meet me and another close high school friend, Mistie. That same night we would have dinner with a small group of other 1983 graduates of Davie High School. At first she wasn’t sure she would meet us, but after some thought decided to join our small reunion. I am so glad she did. We had a wonderful time sharing the direction all of our lives had taken since leaving the world of high school and our youth behind.  It would be the last time I would see her in person.

October 2018 was a horrible month for her physically. Doctors suspected a rare side-effect from one of her chemotherapy drugs had caused her severe diarrhea. She was hospitalized for dehydration along with kidney function decline.  A month later she improved enough to go home but wasn’t completely recovered. On Facebook, she posted the picture you see here hoping the three of us could get together again. I thought for sure she had seen the recent plans for another class of 1983 reunion. She had not. Much of what had happened to her and all events in the world had been missed while she was in the hospital. I asked if she would be coming to the reunion telling her I would gladly push her around in a wheel chair if needed. She declined, still recovering and too weak to be able to enjoy herself. I asked if my stopping by to see her was possible, but she declined that too. Physically and mentally, I am sure she wasn’t ready.

Kim again entered the hospital a few weeks later for a blocked intestine. I thought for sure once the blockage was removed, she would recover, and I would see her at some point in the future. Not too long after that her youngest sister reached out to me to let me know several procedures were done which confirmed her ovarian cancer had spread to the lining of her intestines causing a nutritional decline. She was starving to death. Hospice Home Care was beginning the next day.

On January 12th Kim Vogler Harris died. Her cancer was slow and quiet in the beginning, vicious in the end. Her mother, 2 sisters, one brother, now 20 year-old daughter, husband, and others are now left to live their lives without her.

Though I wish she had talked to me like she did a few times over the course of her treatment--telling me that she was starting a new drug or that her daughter was starting college—she didn’t. I can only guess at the reasons.

People must do what is best for them and their families when an illness is robbing them of their life and happiness. I respect her decision; it wasn’t mine to make. She died her way; quietly to the rest of the world while maintaining a brave face as she said goodbye to her then 19 year-old daughter, and to the people that loved her.

My dear old friend, you are missed.

Unwittingly Cruel

Thursday, in Freeport Texas, a six year old girl was sworn in as an Honorary Police Officer by Police Chief Ray Garivey. The Freeport Police Department shared the story on its Facebook page. News organizations began reporting on the story as well. I caught the momentum of it on Friday. 

Freeport PD

While many people found this story heartwarming, I found the story troubling. Though I know the people involved had only good intentions, the words she was asked to repeat during the ceremony were ill chosen.

You see, Abigail Rose Arias has advanced cancer of the kidneys (Wilms’ Tumor also known as nephroblastoma.) It has metastasized to her lungs. There are no more treatments that could potentially stop its progression. She is dying.

The story has a “make a wish” charm with a young girl telling the Police Chief during their first meeting in December that she wanted to be a police officer. That prompted the chief to to make her dream happen. He and his department put together a police officer’s swearing-in ceremony with all the trimmings: a custom-fitted uniform and the eating of the stereotypical policeman’s favorite treat, a donut.

The highlight of the event happened, with her right-hand raised, as an emotional chief asked her to repeat the words he read to her. I could feel how the knowledge that this little girl’s life would end far too soon affected him, but I failed to see the words she obligatorily spoke as appropriate for this young girl’s circumstances.

You can see it here .

She spoke these words:

"I now, and forever, promise, to keep fighting the bad guys, until all of my cancer is gone."

I glanced at the television in disbelief saying out loud, “Did he really just ask her say that? Now that little girl is going to feel like it is her fault that her mommy and daddy are sad. In the end, she may even think she didn’t fight hard enough.”

It is nice there was a special day created especially for her, but the words chosen by the adult(s) should have been chosen more carefully. Telling someone, especially a 6 year old child, that they can beat cancer is unwittingly cruel wrapped in a promise that if a person just fights hard enough, they can beat cancer. Saying such words to a terminally ill victim that has no other treatments available to them might make the person feel like they have power over cancer and give them a renewed energy to press on, but we who have terminal cancer know it is a lie. Cancer cannot be wished away or fought away no matter how determined that someone is to stay alive.

This story will not have a happy ending. Another beautiful person will die too soon.

Does Sugar Feed Cancer? Yes, but . . .

For the most part I was able to forget that cancer is part of my life during this 2018 holiday season. Unfortunately, I still had to go to infusion on December 22rd, so I could not NOT think about it on that day. As I sat in “the chair”, I listened to a podcast and decided then I would share it here.

bing.com

Untruths bandied about in our society capturing the attention of intelligent or educated individuals bother me. One particular cringe-worthy statement in the cancer community is “Sugar Feeds Cancer”. These three words are truthful, but someone thinking that giving up sodas and sugar in your coffee will stop cancer is a failure to understand basic cellular and food science. Giving up all sugar is nutritionally inadvisable.

Here is where I hand-off the science behind sugar and our bodies to Julie Langford, thecancerdietitian, who is educated in the field of nutrition. One step of her education landed her at UNC-CH where I receive treatment. I was surprised to learn she now lives in a city in North Carolina close to where I grew up. I think you will find her podcast about sugar and cancer easy to understand and wonderfully educational. She is dedicated to dispelling the myths in our culture concerning nutrition. I am a fan.

Before I leave you, I want you to keep these things in mind:
1. All cells need fuel, healthy and abnormal.
2. Insulin from our pancreas opens the door for glucose to enter a cell.
3. Glucose (sugar) is fuel for our cells. Sugar comes in different forms. Simple sugars are: glucose, dextrose, galactose, sucrose (in the body as fructose and glucose). More complex include: fructose, maltose, lactose.
4. Carbohydrates are made of simple and complex sugars along with starches and fiber. Some carbohydrates have nutrients (fruits, veggies, grains); plain sugar—a simple carbohydrate—does not.
5. Our cells cannot pick and chose which sugars to use.
6. If you eliminate glucose, the body will have to work extra hard to make the glucose that it needs to function. If no glucose, the body will break down proteins from muscle.
7. Proteins are made of amino acids. Amino acids can be broken down into glucose for use by the body when necessary.
8. If a person does not get enough nutrients, the immune system will be compromised and cannot protect the body from bad bacteria and viruses.

Hope you enjoy her Podcast. The Cancer Dietitian

And, one more thing since it is December 31st, the last day of 2018 . . .

Happy New Year Everyone!!

Just Pretending I am Normal

If it were not for the help of modern medicine, I would not have celebrated my 54th birthday. 54! I have lived longer than my parents who died at 52 and 53. No rationale to explain why it was important to me to outlive them, but it was.

I made it passed 54 birthdays. I have been able to witness my face change as the gravity of our earth pulls without mercy causing me to agree that plastic surgery might not be such an over-the-top procedure of self-consumed vanity after all.

My birthday came without a lot of fanfare, but to me it was the greatest of days. And with the greatest of days come the other days where I am tired of worrying about dying. Every day it seems in social media someone has died. Poof! They are extinguished from existence. We are all so fragile.

Death is final. It is not like losing a job where you get to pull yourself together and start fresh and find an employer who sees something in you that others did not.

A person dying cannot say, “Hold up, I need a few more days”. Death comes and overtakes you without an apology—not that it can give one—and without any concern for what you needed to finish before your heart no longer beats.

I know death is all part of the circle of life and all that soft language that makes death a lighter subject to talk about. But, the unfairness of how some get to live into their 90’s and others don’t get to see their first birthday is simply extreme no matter what kind of reason some people try to attach to it.

Knowing I am dying—not because I am alive but because I have a terminal illness, does make me think sometimes that my exercise routine that I started in August is a waste of time. I mean, I could be doing something else with that time, but I keep doing it anyway for the “just in case I keep living” scenario or maybe it is partly because I want to pretend I am fine. 

Lately, the metastatic social groups on Facebook I follow have caused me to want to stop looking at my newsfeed. All the sad stories of struggle and sadness can be overwhelming. Since 2013, I have consumed as much information as I could about my disease, learning from others in my desire to keep hope alive. In the beginning I jumped right in and embraced those stories and let them be a part of my life, but I have noticed a change in me. I am finding I want to turn it off. Is five and 1/2 years of letting MBC be at the forefront of my thoughts simply too long? Have I reached the so-called “breaking point” where it is all more than I can handle? I have been slowly pulling away from it, no longer stopping for those stories of people needing help, needing someone to hear them. I feel guilty for being selfish in my needs when their needs are as important as mine.  Yet, I am finding I want to forget about cancer, pretend I am the old Lisa. I want to not be living day to day worrying about my every ache and pain, fearing that my coughing or my recent lower and upper back pain is my disease saying, “Ha ha, you are really screwed now”.

Over the last few months, I have been getting the momentary sense that I am paralyzed. I can’t move because I feel unenthusiastic or unmotivated to do much of anything—stupid thoughts of death creeping in to steal my joy, my sense of worth. It is short-lived, but I know that if it takes hold I won’t be able to find my way out. So I switch gears making myself get up and get going. I feel like I am walking too close to the edge of despair where a person finds they are drowning and can’t save themselves, a place I have never been and don’t ever want to be. So, I will find the comfort I need through pretending I am fine because sometimes a person needs a vacation from cancer.

Staying busy has always helped lessen the negative thoughts that go with my situation. So that is what I intend to do. Soon the decorations will come down from the attic and adorn my home, all my children will be physically here, and I will see another Christmas—my 6th since my induction into the metastatic world. I will enjoy every minute of it. For the next month, I am going to do my best to close the door on my disease, so if you don’t hear from me in December, don’t worry, I am just pretending I am normal.

Remembering Diagnosis #1 and #2

One thing is certain: I don’t need October to remind me of breast cancer. It is in my mind when I wake up in the morning, throughout the day, and in my mind when I fall asleep at night. But this October I got the added bonus of TaTa Tuesdays and check your “BOO”bies. To say those cutesy names annoy me would be a gross understatement.

Today I say goodbye to October. Tomorrow is hello to November! I get to prepare for birthday #54! Truly excited for that day.

On this final day of Breast Cancer Awareness Month, I will leave you with two entries that I found while recently looking through my old journal. I was a much younger me (13 years ago), so full of hope that I would be okay after my first and second diagnoses before things dramatically changed in 2013. Today, I am still hopeful.  After all, hope is all I have when it comes to my tomorrows. That is true for all of us, cancer or not.

From My Journal:
April 25, 2005. (Before I went into surgery)
Words to my children--ages 10, 10, 9, 2.

I’m writing now so you don’t forget that my whole life has been worth it because of you.
I write this on the following pages so you know what I experienced. Maybe it will help you understand what happened to me if I am not here to describe it to you.

Last June I experienced some pain just above my areola on my right breast. The pain was a pinching sensation that would come and go. The feel of my breast was not lumpy, but firm on the top. (I had an enlarged lymph node too.) A mammogram and an ultra-sound were clear. I was told it was most likely caffeine causing my pain. I went on with life until a woman told me about her cancer diagnosis and the bi-lateral mastectomy that occurred because of it made me wonder. A week or so later the pain started occurring again—the same pinching sensation almost like my breast was beginning to let-down milk for a nursing baby. I began feeling for lumps. Still had the same firmness as before. I did feel a little BB sized knot in the area of pain. I pressed and to my astonishment some milky fluid came out of an opening in my nipple. The fluid was yellowish, greenish and thick and a little sticky.

I made the appointment. with my doctor for Monday March 28th. (2005) She sent me to get an ultra sound and a mammogram--again. Those were scheduled for Thursday March 31st. She also suggested I see a breast surgeon. On Monday, April 4th, I was told the results were clear including the lymph node I was worried about. The next day I saw the breast surgeon. She was quite concerned about the “mass” located at 12 o’clock on my right breast. A biopsy was done in her office. Because the hole from which the tissue was taken wouldn’t stop draining, (the same yellowish, sticky substance) the doctor seemed relieved thinking it might be a delayed mastitis. (Really, though? It is 2005. My last child was born 2 years ago.) It drained until 3 am. On Wednesday, she called to say that there were atypical cells found and that the biopsy would be sent to a lab for further evaluation. I could do nothing but wait.

So we went to visit my sisters in Kentucky as planned. Just before we were going into Mammoth Cave the call came from the breast surgeon. Greg fumbled with the phone. The call was dropped as the cell signal was weak. I tried to call her back but nothing. We drove around the parking lot until we had a signal. Through my tears I somehow heard I had Ductal Carcinoma in Situ—cancer in the ducts of my breast--and that I would have to have a mastectomy. She said the diagnosis wasn’t 100% for sure, but she felt confident.

After returning from our trip, on the April 14th, I went in for a 2nd biopsy. More tissue was taken and after 5:00 that day she called to confirm the diagnosis.

On Monday the 18th, I went to see a plastic surgeon. Tuesday I went back to see the breast surgeon. She went over the amount of tissue she was going to take. The plastic surgeon would follow behind her and insert the expanders.

Friday, I was informed that surgery would be performed April 29th. (Things moved quickly.)

All kinds of emotions flow through you with this type of news. Mostly you cry because you don’t want to die and not see your kids grow-up. That is my biggest fear. Other people seem concerned about re-construction. All I care about right now is waking up from the surgery, going home and recovering. I am so scared and worried that cancer cells will be in my lymph node, and I will have to go through chemotherapy. So be it if I don’t have breasts. All I want is my life to spend with my family. I am so lucky to have you. Your daddy has given me so much. Sometimes I don’t tell him enough how much I love him. He has given me everything I have ever wanted or needed.

I love you all.

Dec 31, 2010 (Diagnosis #2 Stage 1, November 2009)

It is about 8 minutes till 12 midnight on New Year’s Eve. This year has been the hardest of my life due to chemo, radiation and Herceptin for a year. My treatments ended Dec 16th with my final Herceptin treatment. On Dec 17th, my port was removed. I am grateful it is over. PET scan showed no cancer!

4 minutes now to go and I am looking forward to a wonderful year. I will try to curse less, and realize that nothing is worth the kind of stress I often experience. The only times worthy of stress are due to the death of a loved one and a diagnosis that could end your own life. I will try to keep that in perspective when things go wrong in my life. 

A bad day is not a bad day when it is a day I lived.

3 seconds. Happy New Year! It is here!