I'm Alright ...

I'm Alright by Kenny Loggins

I'm alright …

We got the high level PET results today. The difference between May 1 results to now couldn't be more different. Even Dr. Kocs seemed a bit surprised. Here goes:

• The liver is enlarged. She's angry. I would be too if I had a 2.5 cm tumor taking up space.
• New tumors in lymph nodes around the liver
• New tumors in lymph nodes in my chest
• Tumors in the lymph nodes in my neck have grown since the last scan
• I asked specifically about Voldemort
• Dr. Kocs is more worried about the liver than he is Voldemort
• The chemo has quit working .... DUH!!
• No travel
• Don't even think about going to the office; he will write a note to that effect but in medical terms

So now what? Well, I told Dr. Kocs I wanted a kick butt treatment that won't kill me before the cancer does. We have about 8 to choose from. We are going with Eribulin. I will be back in the infusion room with the ladies once every week for two weeks, then one week off; rinse and repeat. We will be testing tumor markers during my off week. After three cycles (I think) we do another PET to see how treatment is working …. or not working.

Side effects are typical chemo stuff: hair loss, neuropathy, nausea, weight loss (YES), and more. I haven't lost my hair yet, but I think third time is a charm. I won't go shaving my head just yet; I am saving that for when my hair starts falling out … about 4 weeks out.

This is protocol number 3 in 9 months. I think this will be my life for a while until we find something that finally stumps my sneaky and resilient ILC cancer. Sigh! I told Dr. Kocs I wanted to get to NED (no evidence of disease) so I can take a breather! We have another 20+ things to try, including genetic therapy and immunotherapy. We are saving that for later.

All in all, the Bishop family is handling the news okay. I think we still need a day or so to process. Who wants to hear that more and more tumors keep attacking me? Not me, but that's my new reality. So, give me a day or so to feel sorry for myself and eat "Pity" ice cream. I am alright. I will be alright. I just know I need to be diligent, know my body, push for tests, and be fierce in being my own advocate until I am too sick to do it.

I don't have the full PET results; they aren't posted yet. As always, I will share as soon as I have them. I will also post some information about my new chemo and all the fun I can expect. Stay tuned for an update this weekend.

I will be happy to answer any questions you may have, but I will know more in a few days. Now off to eat my pity ice cream and take a hot bath.

Ooh Child, Things Are Gonna Get Easier

Ooh Child, Things Are Gonna Get Easier

This is the phrase I need to hang on to over the next few days, possibly weeks.

Let's recap,  My CA 27-29 cancer markers have been going up since April. Sadly, that trend continues today. Now we add the CA 15-3 into the mix. Something is not right. Here is a snapshot of these numbers over the past few months:

Lab Range 19-Jun 5-Jun 22-May 8-May 10-Apr CA 15-3 0 - 32.4 42.5 #N/A 29.7 25.5 20.7 CA 27-29 0 - 38.6 90.3 69.3 61.8 62.8 46.2 What does this all mean? Well, nothing good, I assure you. Generally, the higher the CA 27-29 level, the more advanced the breast cancer or larger the tumor burden. [4] If the tumor produces CA 27-29, then tumor marker levels tend to increase as the tumor grows. The highest levels may be seen in metastatic breast cancer, particularly with metastases to the liver or the bones. However, CA 27-29 can be low or absent in all of these settings since not all breast cancers produce CA 27-29, or it may be too early in the disease process to detect CA 27-29 levels. Normal levels, therefore, do not ensure absence of localized or metastatic disease. CA 27-29 levels, in conjunction with the history, physical examination, and diagnostic imaging findings, are typically used to monitor treatment response of metastatic breast cancer. A decrease in CA 27-29 levels can indicate tumor response or regression of disease. Stable or increasing CA 27-29 levels, despite adequate treatment, can indicate tumor nonresponsiveness or tumor recurrence.
Higher CA 15-3 levels have been correlated with more advanced stages of breast cancer [1] or with larger tumor burden. If the tumor produces CA 15-3, marker levels will increase as the tumor grows. The highest levels may be seen in metastatic breast cancer, particularly when metastases to the liver or bones exist. However, CA 15-3 can be low or absent in all of these settings, since not all breast cancers produce CA 15-3 or early stage breast cancers may not produce detectable CA 15-3 levels. Thus, normal levels do not ensure the absence of localized or metastatic breast cancer. Elevation of CA 15-3 levels can also be seen in healthy individuals, in benign conditions, and in other malignant conditions. However, CA 15-3 levels tend to remain relatively stable over time in benign conditions; thus, elevated levels need to be interpreted within the context of the patient’s history and physical examination, diagnostic imaging, and laboratory workup.
There is a chance that these levels can be elevated for benign reasons, but the odds are not in my favor. I suspect the liver is involved, as we know I have a tumor on my liver. And I can feel my liver more these days: when I cough, when I laugh, sometimes when I bend over. Does it hurt? Not yet; it's more like a cramp or feeling tight.  What's strange is you would expect my Bilirubin levels to be high. They aren't. They remain in normal range. So now what? After the June 19 results came in, I received a call from the doctor's office. Up 20 points in two weeks. I cried for a few minutes when I heard the news. I'm scared ... seriously scared. They want a PET done STAT! Texas Oncology was able to get approval from my insurance company very quickly (no small feat when it comes to PETs, I assure you; it typically takes days, sometimes weeks), but ARA did not have any slot available until late next week. Now what?  We look for another provider (like TX Oncology) We schedule the PET for Wednesday morning. Come to find out, switching providers requires a new approval. Seriously?! Needless to say, they called to cancel because we don't have approval yet. It rocked my world. I see you rolling your eyes. Oh the drama! For a terminal cancer patient facing rising tumor markers without a clue as to why, delaying testing and/or treatment is very, very scary. Remember I have a tumor that, if it gets too big, can kill me before the cancer does because of its location. So .... bite me if you don't get it! And then the skies part, rainbows appear, birds are singing! I get a call from Blue Cross Blue Shield. I've been assigned my own personal nurse, Esther. "I've been assigned to provide you with resources and provide any help you may need. What can I help you with Ms. Bishop?". God has shown me, many times during this journey, that he/she is here for me. Bringing me Esther at this moment is one of those times. I explained the situation with the PET, the approval, and the importance of getting it done before my oncologist goes on vacation starting Wednesday, July 1. We talk a long time, about my diagnosis, my mental state, etc. Esther was planning on calling it a day, as she only had a couple of minutes left before quitting time …. but she decided to contact one more patient - ME! I told her God works in mysterious ways. She agreed. Esther is now on the case to get approval quickly. God isn't finished yet …. I receive a call Friday morning from ARA. They have me scheduled for Monday at 8 AM, arrival time 6:30. I contact TX Oncology to advise. Apparently, TX Oncology JUST received approval for the PET to be done at TX Oncology on Tuesday in South Austin. Now what? I have two PETs scheduled, one at ARA in central Austin, one at TX Oncology in South Austin. My preference? Duh … ARA on Monday. I call Esther. She puts me on hold and pulls in a specialist. BOTH PET approvals are still good …. for one month. I can go to either one. Whoop!! We talk a few more minutes. Esther will call me again on Wednesday to see how the PET went, the results and where we go from here. Told you God wasn't finished yet.  There's more ... I contact TX Oncology to advise I can go to either, so we pick ARA. TX Oncology will cancel the Tuesday scan. While on the phone, I ask if I can meet with Dr. Kocs on Tuesday to discuss scan results until waiting to meet with the PA on Thursday. Guess what? It just so happens he had one telemedicine slot left …. for Tuesday morning. Thank you, God!! So, here is the plan for next week:  PET on Monday, meet with Dr. Kocs to discuss results and any change in treatment Tuesday mrorning, then in the office for treatment on Thursday afternoon. I love when things fall into place, even if it took some divine intervention. Now, what to do about the results. In my opinion there is bad news and really bad news, with the bad news being my treatment quit working; the really bad news means I have a brand new cancer. I am hoping for the bad news. Here's the deal … and I'm keeping it real …. as scary as this seems, I am still at peace. It doesn't mean I won't cry for a bit when I hear the results. I am sure I will (after we get off the phone with Dr. Kocs; I'm getting pretty good about keeping it together until after we hang up). My overall philosophy is I can't change it, so there is no point on allowing myself to live in a dark place. Will I visit it initially? Of course - I'm human, after all (note: some may challenge that 😏). But I will not allow myself to stay in that space. Why? I can't change what is. I have a choice:  wallow in self pity and despair or put on my big girl panties and kick ass. I prefer to kick ass!  So …. I am ready for whatever comes my way. This cancer will probably kill me some day, but that day isn't here yet. I will do everything I can to stick around as long as I can. BRING. IT. ON!!

Hello

Hello? It's me...

It's Fabulous Friday! What a glorious day! Make it a good one.

So, what's been going on? Pandemic still raging. People still thinking only of themselves and not the public at large. But … I can't change that. I can only control me. I will continue to err on the side of caution, wearing a mask every time I am in public, exercising social distancing, wiping everything down with sanitary wipes at every turn. Stay safe, everyone!

I heard about a Happiness Challenge. It is to make a conscious effort every day, all day to be happy. I can't think of a better time to do that than now. Our world is changing and emotions are running high: the Pandemic, protests all over the world, my butt is spreading, and my cancer is misbehaving (more on that later).

So... I have accepted what I refer to as the Pandemic Happiness Challenge. One way I am spreading the cheer is through music. Who doesn't love music? Everyday I am posting a new song that always makes me happy, whether it puts a dance in my step, a song in my soul, or a smile on my face. I can't think of a better way to start the day.

I also bought a stand up desk for my home office (still have my huge built in for times when I want or need to sit). When I was in the office, I rarely sat down, unless in a meeting in a conference room. I would put on my ear buds and dance all day. People made fun, but I didn't care. It made me happy. Which is why I bought a stand-up desk for my office. And I dance the day away. It makes me happy.

I also started online Yoga and Zumba classes. I must admit, Yoga is harder than people think. Of course, most of that is one me cuz I am so out of shape. The meditation and relaxation is nice; provides an overall calming effect. I do my first Zumba class today. I know I will love this one ... I can dance for an hour with an instructor but no one will see me look like a goober ... except for my family, but they are used to me looking like a goober.

On to the cancer front. This is where Debbie Downer comes in (but I don't let her stay long ... just sayin'). My CA 27-29 tumor markers are up. What is alarming to me is that my cancer has NEVER triggered tumor markers. It is not uncommon for this to happen when starting a new chemo, but then it settles down in a couple of months, or so I've been told. Regardless, it is alarming.

The tumor marker started going up in April. Normal is in the 30's; mine was at 46 in April. From last Friday, I am now at 69. So...I messaged my doctor to see when we needed to start taking this stuff seriously. Obviously, something is going on. We just don't know what. Solution? I go in for bloodwork again on 6/19 to check the tumor markers. If still on the rise, then we try to move my PET up from end of July to end of June. We need to show this progression to give us more ammunition with the insurance companies on approving the PET. I must say, my insurance company is approving these more now that they've fired their third part company that was handling approvals in the past (approvals is misleading; this company's typical response was deny, deny, deny. It was always a battle).

My biggest fear is a new cancer. After all, I am a cancer magnet. Or that my current chemo protocol quit working. Remember when that happened last time, we lost all progress and had to start over? I don't want to repeat that again. So, I have been fierce about being my own advocate. There will be a point and time when I won't have the strength. We are not there yet and if I have my way about it, we won't be there for a long time.

Thanks for listening to the ramblings of an old woman!

Back to Fabulous Friday - Go out and have a great day!