How Do We Monitor? Let Me Count the Ways ...

As many of you know, we are back to square one after the Taxol quit working. Why? Because we didnt know when the Taxol was no longer effective.  Because my cancer does not show up on any of the traditional cancer markers in the blood work and we can only do imaging every couple of months; (1) insurance won't cover more than that and (2) there is only so much imaging a body can take in a lifetime; rationing is important, especially since I did major radiation 20+ years ago to get rid of thyroid cancer. Somewhere between my PET on 12/2 and the CT on 1/31, the Taxol quit working. All of my tumors grew some bigger than where they started, including our baddest of bad, Voldemort.

When I met with Hannah last week, I talked to her about my frustration in how we are monitoring my cancers response to treatment. We know my cancer does not show up in any tumor markers, so take that off the table. I told Hannah it's time we think outside the box.

I suggested we use Ultrasound. Voldemort was initially discovered using Ultrasound, it is far less expensive than other imaging options, it is less harmful to my body long term. To me its a win/win to be used in between PET or CT scans. Hannah agreed. Hannah says my arguments are valid and my suggestion is a reasonable request. Hannah will talk to Dr. Kocs.

Less than 30 minutes from my chat with Hannah I am getting a call from the nurse. Dr. Kocs agreed with me! YES!! I see it as a small victory and a great collaboration between patient and doctor. Peeps …. sometimes you HAVE to be aggressive about your own health care. This was one of those times, and it paid off.

The Ultrasound has been approved by insurance. I am waiting on ARA to get back to me on scheduling the baseline Ultrasound, then a second one a month later. I don't believe we will be looking at all the tumors, but we will definitely be looking at Voldemort because he is the one that is most dangerous, location and size wise. With this new monitoring strategy, we will definitely know sooner rather than later when a treatment quits working so we don't lose too much headway. I hate losing ground!!

Tomorrow is my second round of shots. Plus labs. Can't wait! I am curious how my white and red blood counts are doing. I looked over last week's blood work and I am seeing a slight drop, still within normal range, but a drop. I was told they expect "stay away from crowds" levels after three weeks. That's why I only do Ibrance for three weeks, then have a week off; to give my body a chance to recoup. Fingers crossed I amaze the doctors again!!

And the Winner Is ..... SAM!

See Sam. Sam is smiling. Sam is dressed up in his tuxedo. See his trophy? His rose? The occasion? The Barkie Awards! Sam "won" for best vocals. Sam is very happy! Congratulations, Sam!! This deserves a treat.

God is Everywhere!!

Yesterday my friend (also a cancer patient) and I went to Mass at St. Mary's in downtown Austin during lunch. Although my friend is Catholic, I am not. No matter. We are both welcome. We scheduled an anointing of the sick ritual after noon Mass.

First, can I just say that this older church is absolutely beautiful. One day I will come in a bit early, look around, and take pictures. I love the big heavy doors, the beautiful altars, the ornate ceiling. Gorgeous!

Okay, back to the story. After Mass, we weren't sure where to go, so we headed to the church office to ask. We were instructed to go back to the sanctuary and sit in the first row. The Father will be with us shortly. So we did.

The anointing of the sick was relatively short. The Father said a few prayers for us, a read and response portion, and then anointed us on the forehead and hands with holy water. He ended the ritual by placing his hand on our foreheads and whispering a prayer I couldn't really hear. No matter, I felt instance peace … and empowerment!

After the ceremony, we walked out of the sanctuary. Sitting in the last row was a young man. He got up as we passed, put a hand on my shoulder and told me he would pray for me. I thanked him, then told him my friend needed prayers as well. He smiled, shook my friends hand, and said he would pray for him as well.

We left the sanctuary. Before leaving the church we both decided to dip our fingers in the holy water bowls that were everywhere (exaggeration, but there were a lot of them) and put the holy water on our tumors. Just another piece of armor against this nasty disease, right?

Out into the cold, back to the car, and prepare to head back to the office. After navigating out of my parking spot, we are heading out of the garage. And then we witnessed a miracle ….

I heard a song playing about God having my back "(I got your back, I got your back"), I look down and see that my car radio is on a Christian station. My car was NOT on a Christian station when we parked. In fact, it was on classic rock or oldies station (60-70s) when I parked. I don't remember the exact song that was playing, but I know it was a pop or classic rock song.

I looked at my friend and said "my radio was NOT on a Christian music station when we parked". He agreed. Then I said "did you hear the lyrics?". He did. Then he smiled and said "I told you God is everywhere"!

I've gotten validation in my life that God is listening, but nothing as big as this. It was like a whack in the head. Like God was saying "Pay attention!! I'm here!". If that isn't validation, I don't know what is!

One of the most amazing and empowering experiences in my life!  We got this!! How can we not?

Latest PET Results

I've been late in updating my blog with the promised PET results and conversations with my medical team about the results.

First, the results are not great but they are not catastrophic. In summary, all tumors have grown. Voldemort is a little larger than when we first started. The spot on my liver we found January 31 is slightly larger (1.3 instead of 1.1) but nothing to be concerned about. I have a new tumor in a lymph node on my chest. Exactly where, I am not sure. I'm not gonna lie. When I first read the results and re-read the results, I was a pile of mush for a bit. About speaking to my super nurse, I am not happy with the results, but I don't feel I need to get the will updated immediately either. Sigh …. this is my life.

I am not pleased that we are back to square one. I'm told that this is part of MBC. They treat with one protocol until it quits working, then move on to the next. I get that. But what concerns me the most is how do we monitor this stuff going forward? I don't want to be at square one every time a treatment quits working. I want us to make headway in killing these suckers, not lose ground! I know the doctors look for tumor markers in the blood work and perform scans every couple of months. That isn't good enough for me. Why? Because my cancer has NEVER shown up in any of the blood work. Some cancers have more protein or a certain protein in the blood that indicates there is cancer. My cancer does not .... so why use tumor markers (protein in the blood) as a monitoring option for me?

Some day I am going find a good picture of the human body, map out the tumor locations, and update them with red/green arrows as they shrink or grow. 

I go in for blood work this morning to see how I am handling the new treatment and to meet with the PA. I am going to insist that my team find other monitoring options so that we know as soon as a treatment protocol stops working. I think that is a reasonable request.  Update: I brought this up during my appointment today. They agreed with me! Scheduling a baseline ultrasound for as soon as possible, then rinse and repeat every month. This way we shouldn't be starting from scratch when the Ibrance quits working. Whoop!

On a more positive note, the warrior in me is definitely back. There are a lot of things I cannot control, but I will be controlling those things I can … like taking care of my mental health, doing things that feed my soul, look into dietary changes. I am also checking out non-conventional  treatments to use in conjunction with my current treatment. MY goal is to get to NED (no evidence of disease) and stay there for a while. I know I will always have a battle on my hands and I need to remain vigilant. I'm ready! LET'S DO IT!!

Here are the actual PET results:

PET/CT scan

Exam: PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH Patient: BISHOP, VICKI Exam Date: 02/13/2020 DOB: 12/06/1956 At the Request of: Patient Age: 63 DARREN KOCS MD Patient Sex: F 2410 ROUND ROCK AVE ARA MR #: 2113432 SUITE 150 Exam Status: STAT ROUND ROCK, TX 78681 Accession #: 30465177 PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH: 2/13/2020 SKULL BASE TO MID THIGH PET/CT - CLINICAL HISTORY: PET is for re-staging left breast cancer.. RADIOPHARMACEUTICAL: 13.3 mCi F-18 FDG was administered intravenously. The blood glucose level was 56 mg/dl. TECHNIQUE: The F-18 FDG injection was followed by an uptake period of 109 minutes. CT was then performed from the skull base through the mid thighs for attenuation correction, followed by positron emission tomography (PET) imaging in the same distribution. PET images were viewed in axial, coronal, and sagittal planes, along with reformatted CT images for anatomic correlation. COMPARISON: 12/02/2019, 10/10/2019. CT chest, abdomen dated 01/31/2020. CT neck dated 01/31/2020, 09/24/2019. CT chest, abdomen and pelvis dated 10/30/2019, 09/26/2013. FINDINGS: NECK: There is a focus of increased activity that corresponds to a focal area of soft tissue within the posterior midline nasopharyngeal mucosal space that is bounded posteriorly by the longus coli muscles. These findings may be related to an inflamed Tornwaldt cyst. Clinical correlation and direct inspection is recommended. For example: *Nasopharyngeal mucosal space lesion: 11 x 11 mm with an SUV max of 6.4. Previously, 11 x 11 mm with an SUV max of 3.6. There is some nonspecific asymmetric activity within the right oropharynx without an anatomical correlate identified. Visualized portions of the brain show normal metabolic activity. Brain parenchyma is normal in appearance. The orbits, intra and extraocular structures are normal. Visualized sinuses are well aerated, with no air fluid levels or abnormal activity. The salivary glands are symmetric, and have physiologic uptake. There is again slight asymmetric activity within the right true vocal cord. Surgically absent. CHEST: There is biapical scarring and small emphysematous cysts within the upper lungs, unchanged. There are again areas of right basilar atelectasis and scarring. There is no new pulmonary nodule, mass or infiltrate. No pleural effusion, pleural mass, or pneumothorax is noted. No abnormal FDG activity is seen in the pleura. There is again nonspecific activity within the proximal third and distal third of the esophagus and a hiatal hernia is present. This may be inflammatory activity. Clinical correlation is recommended. The heart has normal metabolic activity. No evidence of pericardial effusion. Right-sided Port-A-Cath with distal tip unchanged in position. Bilateral breast prostheses, unchanged. Reference background activity (mediastinal blood pool): mean SUV is 2.1. ABDOMEN AND PELVIS: There is a new solitary focus of increased metabolic activity within the right lobe of the liver compatible with hepatic metastatic disease. For example: *Segment IVb lesion: 11 x 13 mm with an SUV max of 16.3. The gallbladder is normal. There are no gallstones. The pancreas is normal in appearance and has physiologic uptake, without mass or inflammatory change. The spleen demonstrates physiologic activity without splenomegaly or mass. The adrenals are normal, and have physiologic uptake. There is atrophy of the left kidney, unchanged. Physiologic FDG excretion is seen in the kidneys. No contour deforming masses, calculi, or hydronephrosis. Normal physiologic activity is seen in the bowel. No evidence of bowel obstruction. The uterus and adnexa are normal in appearance. The bladder is normal. Reference background activity (liver): mean SUV is 2.8. LYMPH NODES: Neck- There are numerous metabolically active left sided cervical lymph nodes that have increased in size, number and activity in the interim. For example: *Left level IIa node: 9 x 15 mm with an SUV max of 9.2. Previously, 8 x 13 mm and an SUV max of 3.4. *Left supraclavicular node: 27 x 32 mm with an SUV max of 14.4. Previously, 25 x 32 mm with an SUV max of 8.9. Chest- There are numerous bilateral metabolically active axillary and internal mammary lymph nodes that have increased in size, number and activity in the interim. In addition, there is a new metabolically active cardiophrenic lymph node. For example: *Left axillary node: 9 x 18 mm with an SUV max of 11.3. Previously, 8 x 13 mm with an SUV max of 4.3. *Right axillary node: 7 x 10 mm with an SUV max of 8.5. Previously, Lymph nodes in the abdomen and pelvis are normal in size and demonstrate no abnormal radiotracer activity. BONES AND SURROUNDING SOFT TISSUES: Physiologic FDG uptake is seen in the bone marrow. Stable 5-6 mm sclerotic lesion within the posterior right T11 pedicle/vertebral body, unchanged. There are no new sclerotic or lytic lesions. PET/CT IMPRESSION: 1. Findings compatible with metastatic adenopathy in the neck and chest that has progressed. 2. Findings compatible with hepatic metastatic disease, as above. 3. Stable appearing sclerotic lesion within the right T11 pedicle/vertebral body. There are no new lesions identified. 4. Nonspecific activity within the posterior midline nasopharyngeal mucosal space, as above. Clinical correlation and direct inspection is recommended.

Mind, Body, and Soul

When patients battle cancer, not only are we waging a physical war, we are waging a mental war as well. For me, I have been struggling, from a mental health perspective, for several weeks now. Putting on the brave, strong face is very difficult for me right now. Recognizing that I am not in a good place, I started looking for a variety of strategies to help me get to a better head space:

• I signed up for a beginner yoga series starting the first Saturday in March
• I reached out to the Breast Cancer Resource Center in Williamson County, asking to hook up with a MBC support group
• I am looking to take advantage of free counseling offered to state employees as part of the ERS system.
• I am scheduling activities or get togethers with my good friends that "get it"
• I invested in CBD oil to help with anxiety (testing it out this weekend)

There is a great article from the mesothelioma group specifically about mental health. What I've copied is specific to the cancer patient, but they have information about care givers, how to deal with loss, etc. The whole spectrum of mental health issues associated with cancer. Please honor me and others you know facing a serious illness by reading the text below and educating yourself about the mental struggles many of us go through but rarely talk about. 

https://www.mesotheliomagroup.com/our-mission/resources/mental-health/

CANCER’S EFFECT ON MENTAL HEALTH

Any serious illness can impact mental health. For patients, caregivers, and their loved ones, going through cancer can be a devastating experience. Receiving a potentially fatal diagnosis, going through treatment protocols, and learning to live with limitations can cause depression in many patients, as can side effects from the treatment itself. Managing mental health needs is a crucial part of the treatment process, and may even impact prognosis.

How Cancer Impacts Mental Health

Some patients may lose the ability to be independent. Others find that energy levels plummet and activities that were once a source of enjoyment are no longer possible. Care must be given to allow the cancer patient to experience their disease in whatever manner is best for them.

Patients frequently experience a process similar to grieving after diagnosis and during palliative or end-of-life care2. There is evidence3 to support the existence of PTSD within both cancer survivors and cancer patients. This is a direct result of traumatic experiences associated with the disease, and because the potential for a fatal prognosis is high.

A study looked into the prevalence of mental health conditions diagnosed in cancer patients of working age; the study identified that nearly 30 percent of the patients in the study were diagnosed with a condition prior to the end of the study. As the national statistics for diagnosed mental health conditions is approximately 26 percent, this points to a noteworthy increase in patients.

Cancer treatments can also cause depression and anxiety. A side effect of chemotherapy known as chemo brain can cause fatigue, depression, mental fog, and other forms of cognitive impairment. An article by the American Cancer Society shows the link between depression and chemo brain, and identifies that both should be considered. Radiation can also lead to fatigue, nausea, and depression.

Treating Mental Health Conditions in the Cancer Patient

Treating mental health conditions in the cancer patient requires several special considerations5. Depending on the prognosis the patient has received, it may not be possible to simply encourage a positive attitude, and it may not be possible to remind the patient that it will eventually get better. This does not mean that treating cancer patients with mental health conditions is not valuable or necessary. Because mental health conditions are believed to be underdiagnosed in cancer patients, it is wise to take a proactive approach to detecting these conditions.

Common Conditions

The most commonly diagnosed comorbid mental health conditions for cancer patients are conditions that fall on the affective or adjustment scale6. This includes both anxiety and depression, as well as several different stress adjustment and coping conditions. PsychCentral has an article available that details adjustment disorders, and how they reduce the ability to handle traumatic situations.

Psychotherapy with an experienced therapist or psychotherapist can be helpful, even to patients who have not yet been diagnosed with a condition. A licensed therapist or psychologist who is trained to work with cancer patients will be able to provide guidance and a listening ear to the patient, right from the start.

Treatment Options

Cognitive Behavioral Therapy (CBT) or Dialectical Behavioral Therapy (DBT) have both been used to treat mental health issues successfully. Each patient will require an assessment to determine which approach, if either, will work best for them. Basic self-directed mindfulness exercises are a large portion of Dialectical Behavioral Therapy. The website DBTSelfHelp details several such exercises for the public. Treatment strategies may include breathing exercises, discussion therapy, behavioral modification, medication for depression or anxiety, or even coping skills development.

Meditation may be an appropriate choice for some patients. Antidepressants and anti-anxiety medications can help to handle symptoms when they become overwhelming, although care must be taken to monitor the patient for interactions. Generally, medications are chosen if depression or anxiety is protracted and does not dissipate after two to four weeks. For depression, Zoloft, Paxil, Wellbutrin, and Prozac are commonly used. Benzodiazepines may be used to treat short-term anxiety or sleep issues, but they are addictive. Benzodiazepine drugs have also shown some ability to reduce the side effects found within chemotherapy.

The Next Chapter - Thank God for Insurance!

We are heading into a new phase in my treatment to prolong my life while maintaining quality of life with MBC.

This week has turned out to be a busy one, appointment wise. After meeting with Dr. Kocs on Monday, I had to go back Tuesday for what is termed a "chemo teach". This is when I find out that Ibrance is a form of chemo, even though the chemo is targeting specific cell characteristics. I had a PET scan Thursday morning, then my first shot of Faslodex on Friday.

The first few appointments were pretty routine and describing them would probably bore you to tears. But my first dip into my new treatment was an eye opener.

First, I get to the office, check in, and wait to be called back. The Infusion nurses give me the shot. Huh - that's a surprise. So back to the infusion room I go, sit in one of the familiar recliners so they can take my vitals and draw three vials of blood for lab work. While waiting on the labs to come back, I get a visit from the financial people. Got to discuss the money. Geez! Turns out the shot cost for 6 treatments (I think I will actually have more than that) is $21, 980; my portion would be $971 per shot. Fortunately, this shot comes out of the $2000 max out of pocket that I've already hit. Amazing how that works with 5 rounds of chemo and a CT, all within the month of January.

Once the lab results come back, I am invited to the "shot" room. I am accompanied into the shot room by not one but TWO nurses. WHAT?! Turns out the Faslodex shot is actually two shots, one in each side of my hips. I am not a fan of shots so my anxiety level was pretty high. I was invited to partially drop my drawers and bend over. The ladies were masterful at injecting the shots at the same time, same pace. It's like they've done this before. Actually, it really didn't hurt. More like a pinch.

After the shots, they had to massage the area to help avoid hardness. I was also told that I needed to keep moving for a while once I got home ..... do not sit down and start watching TV. Walk around the house, take a hot bath, etc. I did both. It still didn't stop one side from stinging like crazy when I finally sat down on the couch about 90 minutes post shot. After massaging my hip for a bit, the pain and stinging went away. This is going to be fun every two weeks.

Now that I'm done with the shots, off to the in-house pharmacy to pick up my Ibrance prescription. My out of pocket every month is only $70. Texas Oncology offered co-pay assistance if I needed it. Some day I may, but I'm okay for now. The actual cost billed by the drug company? $15,088 for a 21-day supply. Mind blowing! Thank God I have insurance!

I thought I would begin Ibrance on Monday. Nope! I started it tonight. Patients get the shot, then need to start the Ibrance the same day as the shot. Since I was in the office late in the day, I will need to take the pill every night at dinner (you must take with food).

Actually, I am not disappointed that I started today. This gives me the three day weekend to see how I am going to react to this new medication. I am told that some of the more common systems will be experience fairly soon, like nausea, vomiting, fatigue, etc. It is encouraging to read "if you vomit after taking the medication, do not take another dose of the medication that day". Oh my! What am I in for?

I can do this. I can do this. I can do this. I can do this. I can do this. I can do this. I can do ....

Dr. Kocs and the Revised CT Results

Mike and I met with Dr. Kocs Monday afternoon to discuss the revised CT results. To say the days leading up to this appointment were nerve wracking is an understatement. I was a basket case; I've been a basket case for the past few weeks. Waiting five days to have this discussion is brutal. I made the mistake of googling prognosis of MBC and liver mets. Don't ever do this …. the resulting articles aren't exactly accurate and they carry the most dire predictions.  Mike and I were prepared for Dr. Kocs to say "get your affairs in order". Stupid, I know. Okay, here goes ....

Mike and I created a list of questions we wanted to be sure to ask during our appointment with Dr. Kocs. We also decided to record the conversation so we don't miss anything. For those that have never been in a similar situation, it is quite common for the patient and/or their support person to totally shut down when they hear "cancer" or "it's spreading". Everything after that is a blur .... it's like the whah whah whah you hear in the Charlie Brown movies; you can't make out a word of what is being said. Here is a high level summary of what we discussed:

• What about the T11 and the liver? There are three things on the scan that concerned Dr. Kocs: the liver (we are all pretty sure that it is cancer), the T11 (the density of the bone is different but it bears watching and may include more bone scans in my future), and Voldemort (the radiologist had a difficult time discerning where the margins were on this tumor, but it appears that it is growing, which is not good).
• We both agree that a liver biopsy is not necessary, since we all agree that it is cancer, so the results of the biopsy will not change my overall prognosis or the new treatment protocol
• Taxol has quit working. We started on Taxol to quickly shrink the tumors in the neck as they are the biggest risk to me; Taxol did its job. We are fortunate the Taxol worked as long as it did.
• We had always planned on moving to an endocrine based therapy soon anyway, which is an option for me because my cancer is still hormone sensitive.
•  What is the goal? To maintain the cancer or to kill the cancer. Dr. Kocs wants to kill the cancer. I'm down with that! 
• When diagnosed with metastatic breast cancer, the overall goal is longevity and quality of life. We have a long list of treatment options available to us. 
• The endocrine based therapy is a targeted treatment; Ibrance blocks an enzyme that helps hormone sensitive cancers grow; along with a hormone suppressant
• Ibrance is the standard treatment based on the characteristic of the cells itself and not specific to ILC or IDC 
• The expectation is that the new treatment is will kill the cancer in the liver
• We are lucky in that I don't have a lot of cancer in my body - his words, not mine. Good to know.
• My three year plan is realistic - this is the closest he has ever come to give me a timeline that isn't only a month or two out. Makes me very happy!
• How do we monitor the cancer going forward? Imaging and blood work; pushing for PET

The new treatment? Ibrance (targeted therapy because it is targeting specific enzymes within the cell .... but it is still chemo, just in pill form) plus Faslodex (shots). I have the Faslodex shot every two weeks, the Ibrance pill every day for 21 days, then 7 days off. Blood work throughtout to see how I am tolerating the treatment. 

So what are the side effects?  They are numerous, some can be severe:

• Nausea
• Vomiting
• Loss of appetite
• Diarrhea
• Tiredness
• Weakness
• Hair loss
• Mouth sores
• Numbness or tingling in legs and hands
• Lower ability to fight infections (low white blood cell counts)
• Lung issues

Because of the strong possibility that I could experience low white blood cell counts (79% of patients experience this side effect), the doctor's office suggested that I either take time off or work from home if the blood cell counts become an issue or if we have a lot of viruses or other illnesses going around the office. For me, a bad cold could land me in the hospital. Here is hoping I handle this treatment as well as I handled the Taxol and that my blood levels stay strong!  

Overall, I remain hopeful.

Be My Valentine

See Sam. Doesn't Sam look cute? Sam and his friends had a Valentine party at Action Pack Dogs this week. Many of the dogs had on silly hats, glasses, or heart leis. Not Sam. Sam dodged the bullet this time and only had to pose with the "Love" backdrop. He still wants a treat for posing. Can you see it in his eyes? He is saying "So, where's my treat?".  Sam will do whatever it takes to get a treat!

On The Move?

If you've read my previous post about test results, you know that I was concerned that the comparison was done against a CT from October. I spoke with wonder nurse, Stephanie, about my concerns and she agreed. She wasn't happy with the lack of information on the CT results. Fast forward a few days. Not only do I have updated results compared against both the 10/10 CT and the 12/2 PET, but the data has changed …. in ways I didn't expect. The good news is that the tumors in my neck are stable and some are still shrinking, just not by much. The not so good news? My cancer may be moving to a new location, namely my liver. Stephanie calls me Wednesday afternoon to give me the news. She indicated they wanted to get me in for a biopsy as soon as possible, hopefully by Friday but no later than next week. Early turned out to be Thursday morning. Note: I received three calls in the course of a couple hours late afternoon/early evening on Wednesday from a number I didn't recognize; I don't answer calls from numbers I don't know. I decided I better check voice mail, only to find I have four messages: one from Dr. Kocs office and three from the hospital on pre-biopsy instructions. Luckily, hospital staff where still around when I called back early Wednesday evening. 

I find out I can't have anything to eat or drink past midnight, not even coffee. Oh no!! Arrival time is 9:30 AM. Bring a driver and don't expect to go to work for the remainder of the day as I will be mildly sedated. Wow! What a shock! Hubby and I notify our employers that we would not be in on Thursday.

Mike and I get to the hospital a little after 9. There was no one around at the outpatient surgery registration with at least three patients waiting to check in, me being one of the three. I am ready to get this show on the road! We finally get checked in and taken to my pre-op room, number 13. My anxiety went up a notch!

I had the best pre-op nurse. His name was Clay. A big red-neck country boy. We had so much fun joking around and trying to get a reaction out of Hubby. Anyway, he took very good care of me and a great time was had by all before they whisked me away to get the biopsy.

The biopsy room was equipped with a CT scan and ultrasound. The doctor was planning on using the CT, the ultrasound, or both to perform an image guided biopsy. First, they did a quick scan on the CT to make sure they could see the spot on my liver. Then they found the same spot on the ultrasound. They turned ultrasound monitor so I could see the little sucker responsible for my Thursday AM date; it was pretty cool. The spot is very, very small.

After looking at the images, Dr. Johnson came to talk to me. Because the spot is so small he isn't sure he can even get a good sample to test. Add to the fact that the "mass" is next to an artery and a vein (why do all my tumors have to be near structures?!) increases the risk of the procedure. Odds are good, based on location, that we could have bleeding issues post biopsy, which would put me in the hospital for a couple of days to monitor and stop the bleeding. What?! Hospital?! Do we proceed or do we wait?

Dr. Johnson called Dr. Kocs to confirm that, if the spot was indeed cancer, that my treatment protocol would change. He also wanted to get Dr. Kocs take on the options laid out in front of us. At the end of the day, the decision was mine. Dr. Kocs agreed that the treatment protocol could change if cancer was found, but he also agreed that waiting a month or so would be beneficial as well. What to do, what to do? My gut told my safety first but I wanted to chat with Hubby. He agreed. Let's make sure we can do the biopsy safely without risking hospitalization. All in all, whether the spot is cancer or not is not going to change my diagnosis. I still have MBC, I am still stage 4, and I am still terminal.

So we call it a day, they take me back to room 13, take out the IV, I get dressed and I am free to go, only to return in a month or so. I still have a chemo session scheduled for Friday, which I will keep, then an appointment with Dr. Kocs to discuss treatment options late Monday afternoon.

The raw data of the revised scan results is below. In additional to some shrinking lymph nodes, mostly stable lymph nodes, and the liver spot, it also shows a 6 mm lesion on the T11 that is consistent with previous scans. How did I miss that? Anyway, my take is that Taxol has done all it can and we are probably ready to move on to the next treatment option, whatever that is (there is a long list). Even without the biopsy, I want to chat with Dr. Kocs about moving on to the next step. I don't want to give the cancer a chance to get a good foot hold in any other part of my body, nor do I want it to start growing again in my neck. I am also going to ask for anti-anxiety meds. I find I am really struggling with anxiety like never before. I am feeling a bit overwhelmed these days and I can't shake it. I am not afraid to admit I need help.

Isn't it amazing how different the results were reported after a more thorough look. Kinda scary, actually. Can you imagine what could have happened? The initial results indicated that the tumors were getting smaller, which isn't exactly true; they were stable with some shrinking. To me it is obvious the Taxol is not working anymore. What would have happened? Would my bad boy grow again and put too much pressure on the carotid artery? Scary stuff. The lesson here? Trust your gut! Be aggressive about your own health care! Ask questions and push for what you need/want!

I will post again after my conversation with Dr. Kocs on Monday. Keep the prayers and good vibes coming!

Exam: CT CHEST AND ABDOMEN WITH CONTRAST Patient: BISHOP, VICKI Exam Date: 01/31/2020 DOB: 12/06/1956 At the Request of: Patient Age: 63 DARREN KOCS MD Patient Sex: F 2410 ROUND ROCK AVE ARA MR #: 2113432 SUITE 150 Exam Status: Routine ROUND ROCK, TX 78681 Accession #: 30423940 CT CHEST AND ABDOMEN WITH CONTRAST: 1/31/2020 HISTORY: Left breast cancer. COMPARISON: 12/02/2019, 10/10/2019, 10/03/2019, 09/26/2013 TECHNIQUE: Contrast-enhanced images of the chest and abdomen were obtained. Dose lowering techniques were utilized which include adjusting the mA and/or kV to protocol and/or patient size. Total contrast administered on date of service: 150 ml Omnipaque 350 - IV. CHEST: LUNGS: There is biapical scarring. Otherwise, the lungs are clear. MEDIASTINUM AND HILUM: The heart is normal in size. Coronary artery calcifications are present. Normal caliber of the thoracic aorta and arch vessels with atherosclerotic changes. There is no evidence of pericardial effusion. PLEURAL SPACE: No pleural effusion, pleural mass, or pneumothorax is noted. ABDOMEN: LIVER: There is a new 1.1 x 1.1 cm hypoenhancing lesion in hepatic segment IVb. No additional focal lesions are present in the liver. No biliary dilatation. No radiopaque calculi are seen in the gallbladder. SPLEEN: Normal. PANCREAS: Normal. ADRENAL GLANDS: Normal. KIDNEYS: Appearance of the atrophied left kidney is stable. The right kidney is normal. GI TRACT: Small hiatal hernia. Minimal colonic diverticulosis. No obstruction. AORTA / IVC: There is minimal calcific arteriosclerosis of the abdominal aorta without evidence of aneurysmal dilatation. The IVC is unremarkable. OTHER FINDINGS: Right Port-A-Cath in place. LYMPH NODES: The left supraclavicular lymphadenopathy is not significantly changed from most recent examination 12/02/2019, measuring 3.2 x 2.2 cm, previously 3.2 x 2.5 cm. Left Rotter's lymph node has decreased in size, measuring 0.8 x 0.7 cm, previously 1.3 x 1.0 cm. Level I left axillary lymph node measures 1.5 x 0.7 cm, previously 1.3 x 0.8 cm. Change in size is believed to be secondary to positioning and measurement technique. Additional abnormal left axillary lymph nodes are stable. There is no new lymphadenopathy in the chest and abdomen. OSSEOUS STRUCTURES AND SOFT TISSUES: There is a 6 mm sclerotic lesion in the right T11 posterior vertebral body/right pedicle, unchanged from prior examination. There are no additional suspicious osseous lesions. No acute fracture. Postsurgical changes of the bilateral mastectomy with implant reconstruction. Posttreatment changes in the left neck and axilla are stable. IMPRESSION: CHEST 1. Stable left supraclavicular and axillary lymphadenopathy. No new lymphadenopathy. 2. Decrease in left Rotter's lymph node. ABDOMEN 1. New 1.1 cm hepatic lesion in segment IVb, concerning for metastasis. 2. 6 mm sclerotic lesion at T11.

Results are In

The CT results are in. Not as thorough as PET results would be, but results nonetheless.  In short, it looks like stuff is still shrinking. But, I am concerned that the comparison is being made to a test I had in October and not the latest CT/PET from December. To me, the results are misleading. I haven't talked to Hannah yet to get medical clarity but I have left a message. I promise not to panic or jump to conclusions until I speak to someone who knows what they are looking at.

Regardless, here is the raw data. If you are so inclined, feel free to go back to 12/2 and look at the CT/PET results then compare them to this one. Maybe I need to do another spreadsheet on tumor sizes and scan dates. Sigh …. Gotta be aggressive about your health, peeps!

COMPARISON: PET/CT 10/10/2019, CT neck 09/24/2019. TECHNIQUE: Axial post contrast images were obtained with coronal and sagittal reformats. Dose lowering techniques were utilized which include adjusting the mA and/or kV to protocol and/or patient size. Total contrast administered on date of service: 150 ml Omnipaque 350 - IV. FINDINGS: The previously described infiltrative nodal mass in the left supraclavicular fossa is again identified and appears to have decreased in size to approximately 45 x 40 x 52 mm (CC x AP x TRV) previously measuring 70 x 53 x 60 mm in the same dimensions. The margins are difficult to evaluate given its infiltrative and curvilinear nature. There is likely involvement of the brachial plexus as multiple nerves extend through the mass. There is displacement if not infiltration of the adjacent vascular structures. Complete occlusion or intravascular thrombus is not identified. Intracranial Structures: Visualized intracranial structures are unremarkable. Skull Base: Normal. Salivary Glands: Normal Nasopharynx: Normal Oral Cavity and Oropharynx: Normal. Hypopharynx and Larynx: Normal Trachea, Aerodigestive tract: Normal Thyroid: Normal Lymph Nodes: Previously described left level IIa, IIb, and lower left level V lymph nodes have decreased in size, not number. The left level IIa lymph node measures 9 mm short axis, IIa lymph node measures 5 mm short axis; two left level V lymph nodes measure 7 mm short axis. Multiple smaller nodes are seen along the left jugulodigastric chain similar to the previous exam. Vessels: The carotid arteries and jugular veins are patent. Osseous Structures: No destructive changes are found. Paranasal sinuses: Visualized sinuses are well aerated. IMPRESSION: 1. Evidence for interval decrease in size of an infiltrative nodal mass in the left supraclavicular fossa. 2. Interval decrease in size of previously described left-sided adenopathy. 3. No adverse changes are identified.

Strong? Brave? It's a Facade!

I have been told by many how "strong" I am, how "brave" I am. The truth is, it's all a façade!

It's true that I chose not to dwell on my cancer and the unseen dangers that lurk beneath my skin. What's the point? It won't change anything. I try to live my life as close to pre-diagnosis as possible. But deep down, I'm scared to death! I can't see or feel the one tumor that will probably kill me if we can't get a handle on him or keep him in check. So when I hear that the insurance company is denying the best test to monitor my cancer, it is unsettling and upsetting, to say the least.

Then, I call to reschedule my follow-up appointment with Dr. Kocs to discuss results of the CT (not the PET we requested) so I wouldn't have to wait 10 days, I was told there is no space available, there is no waiting list, and the nurse will NOT call me if they get a cancellation. I will have to call the doctor's office several times a day to see if something opened up. I LOST IT! Started crying .... no bawling .... uncontrollably. 

To top it off, after that phone call I see a meeting invite about a project I asked for, where my manager and the new team leads (we just had a re-organization in IT, causing some anxiety on its own) want to discuss THEIR vision of the project. Considering I have a good handle on the project and I am heavily engaged, this hit me wrong .... very wrong. Total basket case now. I felt like the rug was getting pulled out from under me on all fronts. 

This just added to my crying, no bawling, jag. It lasted almost an hour. I was able to pull it together just minutes before a meeting with my business team on another project. Sadly, I still could not talk about the scans and having to wait 10 days to discuss results without getting emotional for at least two days. 

See? I am really mush underneath the brave face I put on for the world. It is a facade! Every cancer patient knows this. But the lay person doesn't want to see.

Who is the Chemo Rock Star?

Chemo #17 is on the books!  Once again, my blood levels continue to hang tough. Hannah still calls them "perfect". I asked if they see others that are handling Taxol as well as I am.  The answer is a resounding "NO"! Can you explain it? NO! Hannah asks if I live a healthy lifestyle. Not really, but I am not necessarily unhealthy either. However, in general I am healthy. I don't get sick. I get cancer …. but I don't get sick. That has to be it because there really is no rhyme or reason why I am doing so well. Shut up, girl! Don't question it, just be thankful things are going so well. Many others are not as fortunate! 




Hannah and I also discuss insurance and their denial on the PET. Sadly, this is nothing new to them but very, very frustrating. They don't look at the individual, but only at an algorithm. Any help they can get from the patient is appreciated. Since I will have to do scans the rest of my life to monitor Voldemort, it is important that the insurance companies are looking at ME and MY CANCER! It is critical, even life threatening (from the docs, not from me but I agree), for me to get the proper scans so we can determine the best treatment options throughout this journey.

I told Hannah that the scan was this afternoon (Friday). She confirmed that I have an appointment with Dr. Kocs on 2/10 to review results and discuss treatment. I told her I tried to move it up since my scan was on Friday but there were no appointments available and the nurse will not call me if there is a cancelation. I told her I cried (cried is an understatement - I bawled; more about my meltdown in another post). Awwww! Hannah was so sweet. She agreed that 10 days is a long time to discuss test results. Hannah told me we should see the results by Monday or Tuesday. She will be happy to discuss the results with me. SHE GETS IT!! For a cancer patient, waiting a day is excruciating. Multiply that times 10 … the anxiety is through the roof. I am definitely taking her up on her offer. 

Later in the day, I had a CT scan, not the PET we requested, but the CT they approved. Note: If they see something on the CT that they think warrants a PET, then they will approve (more money, another day off … where does this make sense?!). In and out in 15 minutes. Now we wait! Ugh!!

BTW - I'm not done fighting this. I will meet with a co-worker on Monday to discuss strategy. I have an expert that offered to help with the fight. I can't have this battle every two to three months. I am healthy now and have the energy. There may come a day when I don't have the energy to fight it.

This is MY LIFE, dammit!