Hit Me Baby, One More Time

Hit Me Baby One More Time

Great PET results, right? RIGHT! Don't get too comfortable in that happy place. You are about to get another gut punch!

About a week after my telemedicine call with Dr. Kocs, I get a call from Super Nurse (Stephanie). Dr. Kocs wants me to come back in for more blood work. WHAT?! I'm on a "once a month" track right now for meds, shots, and blood work. What's up?

It turns out that some of the cancer markers are up. Now, before you say … awww, no big deal.... remember this: my cancer has NEVER, I repeat, NEVER shown up in cancer markers in my blood work. So now what are we dealing with? Is this a new cancer? A false positive (it happens)?  Who knows. This cancer crap is getting old!! Did I tell you I hate cancer? Well, I HATE CANCER!! I wanted to leave no doubt on my feelings about cancer.

I go in Friday afternoon for the blood test. Scheduling that was a ride in itself. Stephanie scheduled it for this Friday afternoon when she called me. Fast forward to this week. I get no less than three … count em …. three calls from Dr. Kocs office to schedule the blood work. One nurse even scheduled an appointment for next Friday. When I called the nurse back and told her I already had an appointment for this week, she told me there was no appointment for this week and Dr. Kocs' orders read to schedule the blood work for two weeks from 5/13, which would be 5/29. She said the notes in the chart showed conversations back and forth between Stephanie and Dr. Kocs on how quickly to get me back in. I told the nurse, "Fine, schedule the appointment for the 29th, but please go talk to Stephanie and confirm with her, because what you are telling me is different than what we discussed". Ten minutes later I get a call back from the nurse. My appointment for this Friday stands. Guess Stephanie won that battle on timing!

Truth be told, I think Stephanie is probably the one that found that cancer markers in the first place. It wouldn't be the first time Stephanie picked up on something and pushed the doctors into action. The first time this happened was post surgery while I was in the process of reconstruction. She called to ask what are we going to do about the close margin. What close margin? Next thing I know, I am sitting in my plastic surgeon's office, he gets a call from Dr. Kocs, then they conference in my surgeon, and the boys start talking close margins and what are our options, the whole time I am sitting on the table, waiting on my next "tissue expander fill". In hindsight, it was quite comical. Turns out any further treatment posed more risks than benefits, but then again I may not be in this situation had we done radiation then. Oh well. Can't second guess medical decisions.

Stephanie caught it again when she noticed the January 31 CT scan results were being compared to the first CT I had when I was first diagnosed with MBC; that was October!! The more Stephanie looked the more concern she had. That's when we found out that they read the scans incorrectly. Instead of everything being stable, the chemo quit working somewhere between 12/1 and 1/31; my tumors were back to their original size or bigger.

The point is, Stephanie is my guardian angel. She looks out for me. Always has since I was first diagnosed with breast cancer. God only knows where I'd be without Stephanie!

Anyway, I go in Friday, they do the blood work, and then I wait. I don't expect results until Tuesday because of the holiday. It's going to be a very long 4.5 days. So what to do while I wait? What any PM would do …. download all the blood work results, pop it into a spreadsheet, highlight the tests that could indicate cancer, and start comparing them beginning 12/6 to present. At a minimum, I will highlight those things to discuss with Dr. Kocs or Stephanie when they call with the results.

For now, we stay the course. If they don't like what they see? I'm not sure. Take a wait and see approach? I'm ot much of a "wait and see" kinda girl! Change the protocol? Possible. I know we have about 20 or so in our pocket now, not including new stuff coming up all the time. But, if we do start a new protocol, that's 3 in 9 months that we've burned through, roughly one every three months or averaging one a quarter. Hmmm. My prefence is we stay on a protocol for 6 months, a year, before switching, if possible. We all know cancer could care less about my "preference"!

Dr. Kocs and PET results discussion

I had a brief telemedicine visit with Dr. Kocs during lunch on Wednesday to discuss the PET results.

Overall, the results are good. Lymph nodes in neck and chest have been shrinking. The liver is larger; more on that later. There are possibly two new problematic lymph nodes in my right upper abdomen. The larger liver and new areas of concern triggered a brief panic and pity party. Then I talked to nurse Stephanie; she always helps "cool my jets". This was all pre-Dr. Kocs conversation.

The real story here is the overall drop in metabolic activity, some dramatically so. Dr. Kocs and I discussed this, but it wasn't until I was updating my spreadsheet today that I realized just how much has improved. Regarding the two new lymph nodes that showed up? Dr. Kocs is not convinced these are new, mainly because of the misreading of the last CT results and the timing of the previous scan. We are taking a wait and see approach on the newbies. The liver? Yes, it has increased, but the drop in metabolic rate is indicating this sucker is dying.

Some think I am a bit "cray-cray" for tracking bloodwork and scan results on my spreadsheets, including members of my own family. HA! Seeing the changes in the suv rate side by side is what made it real for me. I love my spreadsheets. I am a very, very happy girl today.

Here is the comparison:

Description/Location	12/02/19 - CT/PET	2/13/20 - CT/PET	5/1/20 - CT/PET
IIa Lymph Node	8 x 13 suv max 3.4	9x15 mm suv max 9.2	suv max 9.0
Iib Lymph Node		suv max 8.4	suv max 2.6
Left supraclavicular bulky adenopathy	25 x 32 suv max 8.9	32 x 27 suv max 14.4	suv max 6.6
Left axillary node - Voldemort	8 x 13 suv max 4.3	9 x 18 suv max 11.3	suv max 2.7
Left pectoralis intramuscular lesion	13 x 10 mm
Nasal Thing (inflamed thornwaldt cyst?	11x11 suv max 3.6	11x11 suv max 6.4	decreased suv max 3.7
Liver		1.1 x 1.3 max suv 16.3	20 x 19 max suv 10.9
Right Axillary node (Abdomen and Pelvis)	Previously normal	7 x 10  suv max 8.5	suv max 1.7
New bilateral metabolically active axillary and internal mammary lymph nodes		Increased in size, number, and activity	No mention
New metabolically active cardiophrenic lymph node		From this scan	No mention
New porta hepatis node right upper abdomen			max suv 9.9
Preval node right upper abdomen			max suv 4.5

So .... we stay the course! Whoop!!

PET/CT Scan Results

PET/CT Results from 5/1 PET/CT scan. I highlighted changes in red; bolded the final results. Discussion and other ramblings in the next post. Stay tuned!

Exam: PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH Patient: BISHOP, VICKI Exam Date: 05/01/2020 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 #: 30634097 PET - TUMOR IMAGING W/ CONCURRENT CT, SKULL BASE - MID THIGH: 5/1/2020 SKULL BASE TO MID THIGH PET/CT - CLINICAL HISTORY: Left breast cancer, subsequent treatment strategy. RADIOPHARMACEUTICAL: 12.0 mCi F-18 FDG was administered intravenously. The blood glucose level was 105 mg/dl. TECHNIQUE: The F-18 FDG injection was followed by an uptake period of 52 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: 12/13/2020, 12/02/2019. FINDINGS: NECK: 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. Focal nasopharyngeal uptake has dramatically decreased. SUV max 3.7; previously 6.4. Larynx is normal, and has physiologic uptake. The thyroid has normal parenchyma and normal physiologic uptake. CHEST: New left upper lobe nodular airspace opacity demonstrating low level uptake, likely infectious/inflammatory. * Left upper lobe nodular airspace opacity: 14 mm, SUV max 1.5. Stable apical pulmonary scarring. No abnormal uptake. No pleural effusion, pleural mass, or pneumothorax is noted. No abnormal FDG activity is seen in the pleura. Esophagus is normal, and has physiologic uptake. The heart has normal metabolic activity. No evidence of pericardial effusion. Reference background activity (mediastinal blood pool): mean SUV is 2.3. ABDOMEN AND PELVIS: Medial segment left lobe hepatic metastasis is larger, although uptake has decreased. * Medial segment left lobe hepatic metastasis: 20 x 19 mm, SUV max 10.9; previously 13 x 11 mm, SUV maximum 16.3. 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. Physiologic FDG excretion is seen in the kidneys. Atrophic left kidney redemonstrated. Normal physiologic activity is seen in the bowel. No evidence of bowel obstruction. The reproductive organs are normal in appearance and activity. The bladder is normal. Reference background activity (liver): mean SUV is 2.8. LYMPH NODES: Lymph nodes in the neck, chest, abdomen and pelvis are normal in size. No abnormal radiotracer accumulation in the lymph nodes. BONES AND SURROUNDING SOFT TISSUES: Most neck lymph nodes demonstrate decreased activity. Axillary and supraclavicular adenopathy has improved. Significant misregistration of activity is present, although new foci FDG activity in the porta hepatis region appear to be related to new lymphadenopathy. * Left submandibular nodule: SUV max 8.1; prior SUV max 9.5. * Left cervical level 2A node: SUV max 9.0; prior SUV max 9.2. * Left cervical level 2B node: SUV max 2.6; prior SUV max 8.4. * Left supraclavicular adenopathy: SUV max 6.6; prior SUV max 14.4. * Right axillary node: SUV max 1.7; prior SUV max 8.5. * Left axillary node: SUV max 2.7; prior SUV max 11.3. * New porta hepatis node: SUV max 9.9. * Precaval node: SUV max 4.5. PET/CT IMPRESSION: 1. Although neck and chest adenopathy has improved, a couple of new lymph node metastasis are seen in the right upper abdomen. 2. The left lobe hepatic metastasis is larger, although uptake is lower. This could be explained by inconspicuous necrosis. 3. New nodular left upper lobe pulmonary airspace opacity demonstrating low level FDG uptake, likely infectious/inflammatory. Follow-up recommended. 4. Decreased focal uptake in the nasopharynx.

New Horizons .... Literally!

My oldest son, Tyson,  has wanted to get into the wind industry for quite some time. Life kept getting in the way. I am happy to say he starts his new job in June! Tyson and his wife are beyond excited!

Tyson isn't really sure what he will be doing, but he doesn't care. He wants to do it all .... and he is smart enough to do it all!  He loves the serenity .... and the gorgeous views .... of climbing up a wind tower to do his thing. He can see for miles, hence the new horizons.

Most wind farms are in remote locations. He is hoping to buy a truck and a 16 ft trailer to haul around from job to job. He will most likely work 6 wks on with one wk off, up to 70 hours per week. But when you are doing something you love, it doesnt' feel like work, right?

The ultimate goal? To move closer to his wife's family and live on the waterfront, river or lake. He has been checking out lake front property in New York. It is amazing how affortable it is. He has shared some of the properties he is looking out .... definity a chill vacation destination!! I am not sure I could handle the cold winters, but the fall? Make room! I'm coming!

Dad and I are so proud and so excited for this new chapter in his life!!

Congrats #1 son!!

Chick Comes Home to Roost

Matthew finished his doctorate in Health Education from the University of Cincinnati. He won't officially be Dr. Bishop until he receives the official paperwork later this month. He is still working for the University of Cincinnati, teaching several online classes. The Spring semester classes are over. Next week, he starts teaching summer online classes.

Matthew has a job lined up at James Madison University as a tenure track professor. But he does not report to work until August 5th, That, coupled with the fact that his lease was up in late April, prompted us to help move him back home until the end of July. No small feat in the coronavirus pandemic!

Once the boys got back from their two-day trek from Cincinnati, I told my son he could be a "guest" for the rest of the weekend. After that, he is a resident. Momma spoiling him stops there (yeah right .... who is kidding who?).

Anyway, it has been a delight having Matt and his girl Sadie home for a few months. The boys trade off cooking (notice I am not in the mix? there is a reason for that), I clean up the cooking mess. I have the better end of things!

Sam is thrilled to have Sadie here. He could barely contain his excitement when he saw her come in the door. We  expected a scuffle or two, but it hasn't happened. Besties for life, now! They both go to doggie day care on Wednesdays and come home happy and exhausted. Here is Sam and Sadie on the first day back at Action Pack Dogs:

Sam looks bored but he is waiting on a treat. He thinks sitting long enough for a picture is deserving of a treat. He is wrong, but it doens't stop the anticipation.

Sadie is smiling. Some may think she is growling, but that is her happy face!

The staff said Sam was so happy to have Sadie with him at doggie day care.They played hard all day!

Matthew and Sadie are planning on moving to the Shenandoah Valley (Virginia) in late July. That could change.





Univerisities across the country will be deciding soon if they will reopen in the fall or not. Matthew expects that decision to come down sometime in June. One or tlwo major universities will announce their intention to open or not and the rest of the universities will probably follow suit. If schools choose to stick with online courses in September, odds are Matthew will stay and teach from here. He can set up and teach online courses anywhere. Of course that depends on James Madison.

We are already planning on making the 20-hour drive to Virginia the last week in July. Matthew will have to rent an apartment or house site unseen. Scary, huh? He donated all of his furniture when he moved here, so he will shop and order furniture online for delivery the day after we get there. Dad and I will then probably fly back home.

Anyway, the situation is a little fluid right now, but isn't everything. We will roll with whatever comes.

Hair? Where? There!

When I was first diagnosed with metastatic breast cancer and started on my chemo treatment, I was told I would lose my hair. As many of you know, I took matters into my own hands and shaved my head …. three times. My hair has thinned out a bit, but I have never been bald except after I went to the barber (which is a cool experience, if you are so inclined to shave your head).

I have lost most of my eyebrows and my eyelashes. They look weird. I can pencil in the brows (ha! I can't wait to see how bad I botch that!!) and I can buy fake lashes. Problem solved on the eye front.

But …. my hair is growing back. With a vengeance! And the strangest thing? It is coming in dark! I look like a reversed skunk … white with a dark stripe down the middle of my head.

I feel like an old man with a comb over!

Even though my hair is growing fast, it isn't long enough for a cut or even shaping. But it's getting there! Can't wait to see my favorite hair stylist Amy Salas! Maybe a couple of months? We'll do something fun. I see pinks, purples or blue in my future!!

Can you see the hair sticking out from my neck or behind my ears in this next picture? Sometimes is sticks out everywhere. It is out of control. Patience ….

I look like a turtle!

Calm in the Chaos

Wow!  The past couple of weeks feel like a year. How quickly things can change. To say this is stressful is an understatement. Surprisingly, Mike and I are rather calm and taking things in stride. It doesn't mean we aren't worried. We choose not to live in that space. I think we are adjusting to our new normal quite well. I actually enjoy the fact that we are both home all day. We both enjoy taking five minutes here and there to check in on each other and pamper Sam. I think having separate offices is why we are handling being home together so well.

Nothing new on the cancer front. I finished my second cycle of Ibrance. I just started my off week. As with Taxol, I am handling this chemo with little to no side effects. Am I the chemo queen? With all the crazy, I am anxious to see how my blood levels are holding up. I go in on Friday for blood work, shots, and Ibrance refill. I think I see Josh again, aka Doogie Houser (that's what the staff call him because he is a young blonde PA). Anyway, how often do you hear someone excited about getting blood drawn? I am a strange woman!!

Hubby and I are weathering the Corona storm fairly well … so far anyway. Mike met with his surgeon for final follow-up from his appendectomy. He told Mike we were doing all the right things to protect ourselves:

• Wash hands frequently
• Wipe down all packages and mail with disinfecting wipes
• We let mail and cardboard boxes sit couple of days before we touch them, even though we wipe them down
• We pick up mail wearing gloves
• We wear gloves when pumping gas
• We practice social distancing when we take Sam for walks
• We use curbside pickup or delivery for groceries and other food
• Mike and I are committed to supporting our local eateries, so we've been ordering take-out and delivery. Here are some of our local favorites:
• Bow Ties 2 Blue Jeans Catering Company - they make 100 meals for a family of 4 every day; the menu is up for the next week or so; you need to order 48 hours in advance; well worth it!
• Green House - a farm to table restaurant. Great food; you need to order in advance here as well
• Both are about $10 per person; we easily spend that getting pizza ... and this stuff is soooo much better than pizza!

The doc suggested a few more things we can do to protect ourselves:

• Wash our hands and face as soon as we come in the house from walking Sam or being outdoors
• Be sure to wipe down our cell phones on a regular basis (duh - why didn't I think of that?)
• Start wearing a mask when we leave the house

Okay, the last one is a bit problematic. Masks are in short supply and are needed most desperately by those on the front lines, so buying them is out. Sadly, I have two boxes of masks I bought a couple of months ago for the office (a box of blue and a box of purple). They are sitting in my cube in my office. Great! I can head into the office and pick them up. The building is practically deserted. But am I putting myself at risk by doing so? 

My other option is to make some masks. That is more realistic, but I am not known for my sewing skills. Regardless, I think that is the direction I need to go in. It appears that Joanne's has curb side pickup. I will look into that tomorrow. If so, I will order fabric and needed supplies to make masks for me, hubby, my kids and grandkids, and for the others on the front lines. Why so many? Please … I know me! I can't just buy 1/4 yard of cute fabric. Plus, there are so many colors and patterns to choose from that would make cool masks! I will see what I can do. Will post pictures of my creations, but it may take a few days.

Meanwhile, stay safe everyone! Wash hands, practice social distancing, use common sense, minimize news coverage, be kind to everyone, a nd look for the silver lining.

Update: I ordered tons of fabric, thread, bias tape. All but 6 yards of fabric were canceled because they were out of stock. They were not out of stock when I ordered them. Wondering how soon they reverse the charges on my credit card. I also shopped for groceries on line. There are no curbside pickup or delivery times for ANY of the six HEBs in my area. None, nada, zilch. WTH?!! So, I am keeping my list full and checking delivery and pickup times frequently. If still no confirmation by mid-day Sunday, then I will be forced to shop elsewhere. Ugh! THIS is what prompts people to hoard groceries!!