She is survived by her husband, John Henry; her father, Charles Mears; and more relatives and friends than can possibly be named.

Julie was born in Kansas City, Mo., and graduated from St. Catherine’s School, Baptiste Junior High, Hickman High School and Rockhurst College.

She trained as a nurse and worked for the American Academy of Family Physicians before becoming a freelance writer specializing in medical topics, co-owner of a book publishing company, and owner of KansasCityontheCheap.com and MyrtleBeachontheCheap.com.

Julie, like her mother, brought people together. She loved to be surrounded by family and friends. When she moved to a new town, she actively sought out new connections.

As a volunteer, she cooked meals for children in a group home and worked for Alzheimer’s awareness in Brevard County through the Purple Balloon Guild.

In July 2015, Julie began chronicling her journey through cancer in a blog she titled “Facing My Mortality”. After several months of misdiagnosis, doctors discovered a tumor in her trachea, which turned out to be small-cell neuroendocrine cancer, which was essentially small-cell lung cancer.

During the next three and a half years, she wrote about her chemo, surgeries, radiation, immunotherapy, and numerous hospital stays, many of which took place only because her insurance wouldn’t cover a drug she needed to stay alive, and the only way to get it was to be hospitalized and apply for aid from the pharmaceutical company – which she was finally denied because she was deemed not poor enough.

Through her blog, she shared the difficulty of living with cancer and the extraordinary difficulty of navigating the medical system when you have a serious illness.

She wrote in May 2017:

“I’m angry. In fact, some days I’m pissed off at the world. I’m mad that this happened to me in the first place. That I can no longer hear music or sing. That I’m spending so much of my life sitting in doctors’ offices. That almost every moment of every day is a struggle. I want my life back! And then I feel guilty for being mad when there are others who have lost so much more than I. What right do I have to be angry? And that makes me cry more.

“I’m…human. I don’t think most people who have cancer (myself included) are the brave warriors people often make us out to be. We were thrust into a battle with inadequate ammunition. There was only one choice: Do you want to live or die? So we did what we had to do.”

She posted her last entry in January, after a family visit from all five of her siblings for Christmas. The day the last sister departed, she experienced a high fever:

“I actually thought I might die that night, but never said anything. It felt like 2016 all over again (That was the year I almost died for real.). Although I wouldn’t say I wanted to die, I felt okay about it. I’d just seen a lot of my loved ones, and I’d had a chance to travel more with my husband and do a lot of fun things in the two “extra” years I’d been given. So I was okay with it if God had decided it was time for me to go.”

In late February, she elected to go into hospice care and forego any further treatment.

A celebration of her life will be April 20 at her sister’s home at 1216 Lakecrest Circle in Raymore, MO. All are welcome to drop by from 1-4 pm to share food and conversation. Dress is casual (per Julie’s explicit instructions).

”I’m ready.” That’s what Julie told me today when I tossed out another, “Maybe you could ask your doctor about…” She doesn’t want to go back to the hospital, and she doesn’t want to try any more rounds of treatment.  She just wants the pain and nausea to go away. She is done, and she is ready.

While it was hard to hear (oh, it was hard to hear), I’m not surprised. Here’s the gist of what’s been going on since she posted in January.

• The tumor in her stomach has grown, resulting in pain and nausea.
• She went to the hospital seeking relief from that and to address the ongoing low sodium issue.
• While in the hospital, she had radiation therapy to try to reduce the size of the tumor. The goal was to relieve the pressure on her organs and get her sodium level back under control.
• She learned that now that she has Medicare, she no longer qualifies for free medication for the sodium. It has not been especially effective as of late anyway, so she went home from the hospital without it.

Since she’s been home, she’s gone on Hospice, and John has been constantly by her side. While the tumor seems to have shrunk some, she’s still in a lot of pain and the nausea is ongoing. She’s not eating, she’s jaundiced, and she sleeps a lot because she’s on high-dose pain medication.

When I talked to her today, she said she was looking forward to seeing Mom. I said maybe there would be a beach, but she told me there are no beaches in heaven (what do I know?), so there must be something even better than beaches. She said, “Whatever’s there, it has to be better than this.”

So, here we are. I feel like I should share some profound life lesson, like, be sure to say, “I love you,” every day to those who are dear to you. Isn’t that supposed to be an end-of-life lesson? It’s a thing. But, it’s not a Mears thing. We rarely heard that growing up, and we pretty much only say it to each other in times of tragedy. Like today.

But, it doesn’t have to be said out loud to be real. The Mears family knows it’s real. We love each other. We like each other. We don’t argue, we don’t hold grudges, and we assume good intent. We show up. We show up for holidays and birthdays and graduations and Chiefs’ watch parties, and vacations, and game nights, and moving days, and weddings, and funerals.

And showing up will be harder without Julie there, but we’ll keep doing it, because that’s what you do for the people you love. So, maybe that’s the lesson.

I’ll keep you posted. She’s in good hands. And, she’s ready.

So here goes…

I had a lot of family coming to visit over Christmas break. I was really excited to see them, so I did my best to tie up any health-related loose ends so I could free up time to enjoy their stay.

The biggest thing on my list was making sure I had enough Samsca to keep my sodium up until after the first of January. That would mean another trip to the hospital.

The last time I’d been in the hospital, the case manager had given me a blank copy of the form we used to apply for the free Samsca. There are three parts to the form:

1. Patient information: Patient demographics, insurance information, financial eligibility
2. Prescriber information: Doctor name and specialty, state licence and DEA numbers, Prescriber contact information, drug name and ICD-10 code
3. Hospital information: Hospital name, case manager name, case manager contact information

In order to be eligible or the free Samsca (which comes from the Otsuka Patient Foundation) I have to be admitted to the hospital with a diagnosis of hyponatremeia (low sodium). The case manager told me if I filled out my portion (and the nephrologist filled out his) before I got to the hospital, things would go much faster.

So I put together an “infallible” plan:

1. Make a few copies of the form.
2. Give the nephrologist’s office copies of the form.
3. Have my sodium drawn early in the week, and call for results as soon as they’re likely to be available.
4. Make sure whichever doctor was admitting me (PCP or oncologist) had received a copy of my sodium results and would be available to request a bed for me.
5. Keep a hospital bag packed and ready to go.
6. Pick up the signed paperwork and a prescription from the nephrologist’s office as soon as I got the call that it (and my bed) was ready.
7. Check into the hospital.

I figured once I got admitted to the hospital, I could:

1. Explain the situation (again) to my new case manager.
2. Give her (or him) the nephrologist’s portion of the form and the prescription.
3. Give her my portion of the form (which in a perfect world would already be filled out).
4. Ask her to fill out her portion of the form and fax it all to the number on the front of the form.

With this new “streamlined” process, I could be be in and out of the hospital as soon as they got my sodium back to normal (usually by the next day or the day after).

We only had two weeks before Christmas break, so the first week, I lowered my sodium dose from 45 to 30 mg on the day before I had my blood drawn. I didn’t want to lower it any further because even at 45 mg/day, my sodium was being checked twice a week and was consistently running in the low- to mid- 120s. And anything lower could be dangerous.

The first week, my sodium was 131, and none of my doctors will admit me until I’m under 130. Of course, on Thursday, it was back down to 126. Go figure. I didn’t think there was much point in getting admitted that late in the week because nobody does anything over the weekend. So I waited.

It would have been ideal to go in the next Monday (December 17), but I had an appointment at Moffitt in Tampa to talk to a doctor about any potential clinical trials that might help me get rid of the tumor in my stomach, and I definitely didn’t want to miss that. And my oncologist is out on Tuesday. So I decided I’d get my blood drawn on Tuesday, and on Wednesday, I’d call for results (after which my oncologist’s office would call the hospital to get a bed for me).

On Monday, we made the 2 1/2 hour trip to Moffitt to talk about clinical trials. The oncologist there was very nice, but he didn’t have much to offer. He said we could do an Opdivo/Yervoy combo. Those are both immunotherapy drugs. They have more side effects than Keytruda, but have been shown to work fairly well for people who initially had success with Keutruda.

I knew my oncologist could offer me those drugs himself, and the doctor from Moffitt agreed. I figured if my current oncologist had a lot of faith in that combo, he already would have offered it to me.

The only clinical trial the doctor from Moffitt had open for me was an Opdivo/Yervo combo with a vaccine component. I like the idea of a vaccine. It seems to be the next promising treatment after immunotherapy. But when it was all said and done, I’d basically be living in Tampa during the week for as long as the vaccine was working for me. Which really wasn’t ideal, but something to consider. The doctor from Moffitt said he’d discuss it with my current oncologist, but he thought just doing the Opdivo/Yervo combo near home was my best option. He didn’t really say why, but the next time I saw my oncologist in Melbourne, he said my SIADH would have gotten me thrown out of the clinical trial the first time my sodium plummeted. So the new plan for now is the Opdivo/Yervo combo near home. But we still have to work through the financials before we can get started.

So, on December 18, I had my sodium drawn again. It was 133. I was running on very little sleep, and by this time, I was feeling pretty stressed. What does one with SIADH have to do to get a bad enough lab result to get thrown in the hospital for low sodium?!!!

The oncology nurse suggested I skip Wednesday’s dose (which I hadn’t yet taken), and come back in on Thursday for another blood draw (my poor, abused veins…). She said if I went to their off-site lab and had a STAT order, she’d have the results back in about 30 minutes. It seems so ridiculous to spend all this time trying to lower my sodium so I can go to the hospital and get pills that will raise my sodium again. But we agreed this would be the best course of action.

The next morning, I had my sodium drawn again. When I hadn’t heard anything from my oncologist’s nurse by early afternoon, I called for my results. When the nurse got on the phone, she said, “I’m sorry. Your sodium was still 133.” That was on December 20, and my company would begin arriving on December 23. There was nothing else to be done until after the holidays except ration what was left of my Samsca and celebrate the Holidays with my family as planned.

We had a few bumps in the road (e.g., a prompt from one of my sisters to take another Samsca before I had a seizure; an off and on fever that was over 102, an incident in which I couldn’t get one of my pills to go down and had a bit of a breakdown). But otherwise, we had a very nice holiday. It was great to have us all together again (except for our mother who died in 2012). Then it was back to business.

On New Year’s Day, the last of my sibling left. A few hours before dinner, I started running a fever. I was hoping it would be minor, but no such luck. My husband brought me dinner (I slept through half of it), blankets, Tylenol, a thermometer, and cool wet cloths for my forehead. At one point, my fever was more than 102. I camped out on the couch, and asked my husband to call 911 if I started having seizures or went into a coma.

I actually thought I might die that night, but never said anything. It felt like 2016 all over again (That was the year I almost died for real.). Although I wouldn’t say I wanted to die, I felt okay about it. I’d just seen a lot of my loved ones, and I’d had a chance to travel more with my husband and do a lot of fun things in the two “extra” years I’d been given. So I was okay with it if God had decided it was time for me to go.

My fever broke in the middle of the night. So I got up, changed my clothes, and went back to bed.

On Tuesday morning, I got up and went for a blood draw. Not too long after, the nephrologist’s office called and said I needed to go to the hospital. My sodium was 123. So I called the oncologist’s office and asked if he would admit me. When I didn’t hear back by mid afternoon, I called the registration desk and asked what was happening. The guy I talked to said he didn’t have any beds left on the oncology unit. So I asked if he could get me in somewhere else. A few minutes later, he called me back and we were on our way.

The hospital was really busy, so I ended up with a roommate again. She was either on drugs or had some sort of psychiatric illness. She was on a rant about something, so I immediately asked to be moved to another room. While my nurse went to see about another room for me, my roommate came over with her arms full of Styrofoam cups. She yelled something like, “Do you know these are the only Tupperware containers I have in my entire trailer?” I didn’t catch the rest of it, but apparently this was somehow the hospital’s fault.

Her nurse tried to calm her while mine ushered me to the bed by the window and assured me she’d get me another room. Not too long later, the other patient was moved to the psychiatric ward. I didn’t blame this one on the hospital. The woman obviously needed help, and they couldn’t exactly put her in with someone else.

All was well until around 1 a.m. the following morning. I was fast asleep when I heard a lady screaming for help. She was loud…and she was in the bed on the other side of the curtain. The woman was cursing, begging for narcotics, and telling the world how awful the hospital was for allowing her to stay in so much pain. I know what it’s like to be in pain, so I prayed for her and did my best to go back to sleep. The woman continued to yell for most of the night. But once in a while she slept, so I tried to do the same.

The next morning, my sodium was 121, and we re-started the process to get it back up and to get my Samsca. I also told my doctor about the fever I’d been having off and on. He ordered a chest x-ray, followed by a CT scan of the chest.

When the case manager finally came in late that morning, I explained the Samsca situation to her (I ought to just record it.), and gave her the part of the grant application for her department to fill out. I hadn’t yet had a chance to fill out my portion since I’d been so sick the night before. And it was a new year, so we would need to get the doctor to do his part again, too.

The case manager sort of just started rifling through the papers. She looked lost as I tried to explain each piece to her. While we were looking through the nephrologist’s part, I told her I thought the people in the doctor’s office had filled out most of it the last time. So she suggested I might want to call them and ask them if they can do it again. I told her the case manager normally did that and said I’d quickly finish my part so we’d have everything together tomorrow. Then when the doctor came in, all he’d have to do is sign. Meanwhile, the woman in the bed next to me continued to scream.

The case manager thought since I had a “relationship” with the women in the doctor’s office, it would be better for me to call them. We just stood there and looked at each other for a minute; neither of us wanted to concede. I finally took the papers and said, “Fine. I’ll just do it.” And she had the nerve to turn around and walk out on me.

I was still stewing, and the woman in the next bed was still wailing, when my nurse came into the room. I had my hands over my ears as I told her she had to get me a bed in a private room. She said she was still waiting for one to come open, but she promised she’d get it for me. I felt really sorry for the nurses because the hospital seemed to be really busy. So I didn’t say anything more.

When transport came to get me for my chest CT (I’d had the chest x-ray the night before), I was happy to get out of my, room no matter what the reason.

When I got back, my roommate was still screaming, and her television was on full blast. My nurse said she had another room for me, so we quickly threw all my stuff on my bedside table and wheeled it down to a private room. Thank God!!!

The next morning, my oncologist showed up around 6 a.m. He said there was no evidence of cancer in my lungs, but there was something there he believed to be aspiration pneumonia. I’ve been having a lot of trouble swallowing lately (mostly pills), and had been wondering if it was time for another throat dilation surgery. He ordered an infectious disease consult to run some tests that would tell her which antibiotic(s) to use.

So the tests were run, and I’ve been put on IV Levaquin for five days, which means I won’t be released until at least Tuesday unless the infectious disease doctor decides I’m well enough to switch to an oral antibiotic on Tuesday. She also ordered a barium swallow to try and figure out why I got pneumonia in the first place.

The barium swallow is pretty simple. You sit in front of an x-ray machine while a radiology tech brings you small food samples of various consistency. When the test was over, the tech told me I was fine to eat any type of food, but I would need to add something with a honey consistency to my water. Which means I’d have to drink/eat? a thickened version of water indefinitely.

I told the tech in no uncertain terms I would not be giving up my water. For all those who have never had to drink thickened water, trust me. It’s disgusting. It’s like water-flavored honey. Until you’ve experienced it, you can’t begin to imagine how weird it is trying to eat water. I told her I’d like a second opinion from an ear, nose, and throat (ENT) doctor. I’d much rather do another surgery. If another dilation won’t work, maybe there’s something else that will.

So I asked my oncologist for an ENT consult. While I was talking to my oncologist, I also remembered something the guy who did my biopsy said (and yes, I do have small cell lung cancer for those who have been wondering). Before the biopsy, he’d mentioned he may be able to remove that particular tumor. When I asked my oncologist about it, he said, “You mean ablate it?” I said yes. He just looked at me for a minute, and I said, “I know he’s not going to be able to get it all, but that tumor is causing me quite a bit of pain, and I’d love to get back off the pain medicine (or at least reduce my doses). He said, “That’s fair. I’ll talk to him about it.”

By this time, it was almost the weekend, so it was decided I could do my ENT consult outside the hospital to speed things up a bit. Unfortunately, the ENT who removed my initial tumor and did my last few dilations had a stroke not too long ago and had to stop practicing. Once I get out of here, I’ll make an appointment with the woman who’s taking over his patients.

While all this has been happening, you may be wondering what’s been going on with the Samsca. My nephrologist was off when I came in on Wednesday, and the guy taking over for him didn’t want to fill out the paperwork. My case manager continued to walk around like a chicken with her head cut off and kept trying to push her work back on to me, and I continued to push back because it’s not my job and I’m tired of being asked to do it.

At one point, the office manager at my nephrologist’s office called me and swore up and down the nephrologist had never written a prescription for me for Samsca (or done any related paperwork) and that he never would. I told her I had a copy of both from the last time I was in here right in don’t of me. She just kept insisting it had never happened and never would. She said the oncologist was responsible for all that. FYI, nephrologist’s are the only specialists that are allowed to write for Samsca.

The office manager finally managed to get the application sent out minus the prescription. Then she wanted me to call Otsuka and ask about the status of my application. I suggested she might want to do that. After we went back and forth, she picked up my phone, turned the speaker on, and made the phone call. The woman who answered the phone said it could now take up to three days to process faxed applications. And she emphasized the word “faxed.” At this point, I almost felt sorry for the case manager because she was stumbling through the phone call while trying to sound professional.

When she got off the phone, I asked her if she’d checked with the Walgreen’s specialty pharmacy to see about the nine pills they usually send me through their bridge program. Since I now have zero pills left at home, I’m going to need some to take while I wait for Otsuka’s specialty pharmacy to send theirs. So she asked if I had a number for the Walgreen’s specialty pharmacy. I used to, but I don’t anymore. So I watched as she picked up my phone and stumbled through more phone calls with no results.

When she finally left my room, I called for my nurse. When she came in she said, “I know. I’m already on it.” What happened next was what should have happened long ago. The heads of the entire case management and nursing departments came down to meet with me. I told them my story (again), and they were appropriately dismayed that it had taken so long to fix this. But I’m hopeful that this time we’ll actually be able to fix it.

The head of case management said she would take over my case for this hospital stay and make sure I got what I needed. Now for the future…

She has an insurance background as well as case management, so I’m hopeful she’ll find a way to get me this drug without jumping through so many hoops. I’ll be eligible for Medicare February 1 (Thank God!), so she’s going to run some numbers and see if a Medicare Part D plan will help or if I’m better off with my current prescription drug program. She’s also going to see if she can get me an advocate from my insurance company to help with this going forward.

Although her help is much appreciated, I don’t think the head of case management will find a pathway that’ll allow me to afford my portion of the drug; it’s just too expensive. And when I asked my nephrologist how his other patients were paying for it, he said they were all on clinical trials for kidney diseases, so they don’t have to pay.

The Otsuka patient portal should actually make things much easier if I do have to keep coming to the hospital since the doctors can get their staff to do most of the work, and we probably won’t have to keep updating much of it once we’re signed in. Anyway, the head of case management is going to speak to all of my doctors and see if we all can’t just get along. I told her I was planning to dump my nephrologist, but she asked me to wait until the dust has settled on this stay, so I reluctantly agreed.

So…that’s where we are for now. Whew!

Thanks for sharing my journey with me.

Julie

Based on the scan results (and there being no recent improvement in my sodium levels) the oncologist decided it was time to give up on the Tecentriq. It just wasn’t working for me. Since I sort of knew that already, I’ve been looking at clinical trials at Moffitt.

Clinical trial outlines are pretty complicated, and there are so many that I might possibly be qualified for, so I asked my oncologist how I should go about getting started. He said to contact any of the clinical trial coordinators, tell them my situation, and ask for an appointment (at which time the doctor would tell me if they had any trials that might work for me).

Just a day or two before my appointment, I’d caught a news segment about FDA approval of a new targeted therapy for certain rare types of tumors, including those found in some lung cancers. So I asked my oncologist if I might be a good candidate for the new drug.

He said that drug was just one of many targeted therapies on the market, but none of them are for small cell lung cancer. Then he sort of started thinking out loud and mumbled something about my initial tumor being in my trachea (They have yet to find one in my lungs.) and said we should go ahead with the genetic testing. He also  ordered a biopsy of my stomach tumor because he thought it “might not be such a bad idea to make sure [I] actually have small cell lung cancer.”

He fired all this off so quickly, I didn’t really have time to process and react until after he’d moved on to the next patient. Between the low sodium, the chemo, and menopause (and the speed at which my oncologist thinks and responds), it took me some time to comprehend what he’d just said.

On the way home from the oncologist, I read through the results of my CT scan. In addition to the stomach tumor, it says something about a liver lesion, but that could just be scar tissue from a previous tumor. We can’t know for sure unless I have another PET scan. In reference to the stomach tumor, it also says there’s a “mass effect” on the adjacent structures, including the inferior vena cava (a large vein that carries blood from the lower and middle part of the body to the heart) and the pancreas.

I don’t really know what a “mass effect” is, but the word “mass” never sounds good to someone who has cancer. So, of course I was left wondering if the cancer in my stomach is spreading. And that’s when it suddenly hit me. My oncologist had said we were doing the genetic test and biopsy to see if I actually had small cell lung cancer!!!!

Was my oncologist now thinking the pathologist had made a mistake on my initial biopsy report? Could we have been treating the wrong type of cancer for more than three years now? If so, what type of cancer was he thinking I might have? Non-small cell lung cancer? Stomach cancer instead of lung cancer? Stomach cancer in addition to small cell lung cancer?

So (of course) I went to Google. My first thought was I couldn’t have stomach cancer because the only type of cancer associated with SIADH is lung cancer. Right? So I googled SIADH. And I was wrong. SIADH is not only associated with lung cancer. It’s also associated with cancers of the digestive system, which would include the stomach.

At this point, I’m trying to just go about my business as though I still have small cell lung cancer (which I most likely do). But it’s tough not to think about the possibility of a cure if the initial pathology report was wrong. And of all the pain and suffering I may have been able to avoid had I been given the correct diagnosis three years ago.

But if I allow myself to think about any of that, finding out I still have small cell lung cancer will be a pretty big let down when it’s all said and done. And I went back and forth about whether or not to include this part in my blog post for the very same reason. But it’s part of my story. Cancer is full of ups and downs.

So for now I wait. I’ve already had my blood drawn for the genetic testing, and my biopsy is scheduled for tomorrow (12/5). After that, I need to call for an appointment with the oncologist to get my results.

That’s all for now. Thank you for sharing my journey with me.

Julie

It turns out Otsuka now has an online application, so the print form on their website (which we initially sent in) was no good. My case manager was off the Friday I was in, and nobody followed up with Otsuka after our application had been faxed, so I was stuck there over the weekend. Sadly, I missed a chance to meet up with my cousins in Flagler Beach and the Kansas City Chiefs game. Needless to say, I wasn’t real happy.

Anyway, the online application requires me, the case manager, and the nephrologist’s office to sign up for some sort of Otsuka portal, after which we can all go in and complete our portions of the application (still only when I’m hospitalized). Since I can’t envision a world in which my nephrologist would bother to do any of that (but he may have a staff member who would), we were lucky to get a paper version of the current form to fax over. She gave me a blank copy to use next time around.

In the meantime, my Samsca dose had to be raised to 45 mg/day. So that’s what the nephrologist ordered. I got the approval on Monday and was able to go home, but was told since I’d already been given six doses while in the hospital, I would only be receiving 24 in the mail. Lucky for me, the specialty pharmacy didn’t know they were only supposed to only send 24 doses, so they sent me enough for 30 more days.

While I was in the hospital, I found out the appeal I filed with the insurance company had been successful, and they’d agreed to pay $5,400 per month for the drug. The Walgreens specialty pharmacy had told me if we could get my insurance company to cover their portion, they had some sort of coupon that would allow me to get refills every month for $10. So, yay!, right?

Not so fast…When the billing person from Walgreen’s called me this time, she said even after the coupon, I’d still have to pay around $1,800. That’s just a bit more than the $10 copay they’d promised me. It turns out the retail price for 30 (30mg) Samsca pills is $16,000. And I need 45 milligrams a day. Ridiculous. So I told the case manager to make a note in my chart to stop calling Walgreen’s for help.

My next oncology appointment and treatment were on Wednesday. I asked for the results of my abdominal CT. I still have the lymph node tumor in my stomach. When I asked if it had grown since my last scan, the oncologist sort of glossed over the subject and reminded me we needed to be looking at the sodium more so than the scans. I couldn’t find the results of my last PET scan in the chaos I call my desk so I could compare the two. But I’m getting a new CT scan next week, so I’ll find out what’s happening then.

I have an appointment to see the oncologist next Friday to talk about the new scan and whether he thinks it’s time to look at clinical trials. In the meantime, I called Moffitt, which is about 2 1/2 hours away, and asked about clinical trials there.

A few days later, I received a call back, and the guy I talked to e-mailed me a list of clinical trials for which I am qualified on paper. Only one is specific to small cell lung cancer, and it may or may not include chemotherapy. Which means my blood counts would drop, thereby zapping all my energy, and I’d lose my hair again (easy come, easy go). The other trials just say they’re for advanced metastatic solid tumors so they’re not specific to my type of cancer, but they may have fewer side effects. I’ll have to see what my oncologist has to say.

Since leaving the hospital, my sodium’s been running 124-125. My nephrologist doesn’t seem to be worried about it as long as I’m not having symptoms. I guess my body had become accustomed to the low sodium, so I may just have to learn to deal with it.

The last time I saw the nephrologist, I had a few questions that had been weighing on my mind lately. First, I asked him if the Tecentriq fails and we run out of acceptable treatment options, if he thought the sodium problem would take me before the cancer. He said he didn’t think so since my body seemed to be used to functioning well on low sodium. He thought the cancer would get me first. I’m not really sure yet if that’s the answer I was hoping for. On the one hand, I don’t like the idea of the seizures from the low sodium, but the coma part doesn’t sound like a bad way to go. On the other hand, I hear the cancer pain is horrendous, and toward the end, the cancer takes over your brain. So neither option sounds very appealing.

My second question was if I get to a point where I’m ready for hospice, will I still be able to take the Samsca for the sodium? My thinking here is if I decide to go on hospice, I’d like to enjoy the time I have left for as long as I’m able. To do that, I need to control both the sodium and the pain as much as possible. The nephrologist said since the Samsca’s not considered a cancer treatment, I should be able to stay on it. That was the answer I wanted.

That’s where things stand for now. Thank you for sharing my journey.

Julie

Once admitted, I told my story to my new case manager. And (of course) she didn’t believe me. She was actually a little snooty with me, and said I should have followed up with the Otsuka Patient Assistance Foundation after my last hospitalization to extend the grant for the Samsca. And if I’d done so, I would have then been able to keep getting the Samsca every month as an outpatient. I got the feeling in her mind, I was just too stupid to follow directions. So I handed her the paperwork and the most recent Samsca rejection letter from my insurance company, and let her go try to work her magic.

The case manager came back a few hours later shaking her head. She told me she’d spent an hour on the phone with the Otsuka people, and was told I could only get a new supply of meds every 30 days, and I had to be hospitalized with low sodium each time to get them. Big surprise. So she was waiting for the nephrologist to come by and write an order so she could fax that and my application to Otsuka and get the ball rolling.

While I was in the hospital, my oncologist ordered CT scans of my neck and chest. The next morning, I asked him for the results. He said my neck and chest were clear, but the radiologist had seen something in my stomach. So he wanted me to go back for a CT of the abdomen so he could get a better look.

I was out of the hospital before I saw the oncologist again, so I don’t have the results of the abdominal scan yet. I already knew there was something in my stomach from my last pet scan, so I didn’t see any real point in calling to get the scan results when I can just get them at my next appointment. And if I got the results before the oncologist had a few minutes to talk to me and they’re not good, I’ll just worry until my next appointment when it may not yet be time to panic.

Which brings me back to the Samsca/sodium issue. When I left the hospital (on Friday), the case manager told me my 30 Samsca pills would arrive on Saturday. Instead, I got a phone call from a specialty pharmacy asking where I wanted them shipped. So I gave the woman who called my address, and she said the pills would be delivered on Wednesday. It’s a good thing I always go back to the hospital when I still have some pills tucked away at home. Otherwise, I’d have had to go right back in.

On Wednesday, the pills were delivered as promised. There were 30 this time, but they were all 15 mg. They were supposed to be 30 mg. So instead of a month’s supply, I only had enough for about two weeks. So I called the Otsuka Patient Foundation to see what was going on. The man on the phone was very nice. He said the order he had from my most recent hospitalization was for 30 mg pills. So it wasn’t my doctor’s fault (or the hospital’s). So far, so good.

While he had me on the phone, the man from Otsuka called the specialty pharmacy and got someone on the phone with us. She said the only prescription she had was dated July 11, and it was for 15 mg pills. He said he’d send her the new prescription, and she promised to get me the rest of my pills by Friday.

After the woman from the pharmacy hung up, I asked the guy from Otsuka if there was any way to get around the hospitalization rule since I’d been on the Samsca for three years and had been hospitalized three times since July. He said it was unfortunate, but there was no way around it. So I’ve done everything I can from my end to try to fix this situation.

On Friday, I got another package from the specialty pharmacy. This time, they’d sent 30 mg pills. Enough for an entire month. So I ended up with an extra 30 pills; they’re only 15 mg, but I’ll take whatever I can get.

When I left the hospital, my sodium was 133. It’s been slowly dropping since then, and is now at 124. The nephrologist said I should now alternate my Samsca doses and take 60 mg one day, and 30 mg the next. I asked if I could try doing 45/30, and he said that was fine. Today was the first day I took 45. So far, it doesn’t seem to be working (still retaining water), so I may have to go up to 60 mg after all. This will mean another hospital visit in the next few weeks.

Tomorrow, I’ll see the oncologist, get the results of my abdominal scan, and see if he thinks we should continue with the Tecentriq or try something else. It took about six treatments for the Keytruda to start working (tomorrow is number five of Tecentriq), so I’m hopeful he’ll still think it’s going to work for me.

That’s all for now. Thanks for sharing my journey with me.

Julie

Bucket list cruise to Alaska. August, 2018.

There are two types of lung cancer: 1) small cell lung cancer; and 2) non-small cell lung cancer. And within those two types are many different subtypes. I have small cell neuroendocrine carcinoma. Neuroendocrine tumors can be very tricky because they secrete excess hormones. In my case, the tumors secrete excess anti-diuretic hormone, which causes me to retain water, which causes my sodium level to plummet – a condition known as Syndrome of Inappropriate Antidiuretic Hormone (SIADH).

Those who have been following my blog from the beginning know that my sodium level is the best indication of whether or not my cancer is under control. When tumors start growing, my sodium level drops.

My sodium has been steadily dropping since May. The only thing that will bring it back up is a drug called Samsca. The Samsca is crazy expensive. The drug manufacturer (Otsuka) has a grant that’ll get me a 30-day supply for free, but I have to be in the hospital in order to get it. And what constitutes a 30-day supply depends on whether or not I have tumors growing.

When I found out I had a cancerous lymph  node in my stomach back in May of this year, I began taking 15 mg of Samsca around twice a week. My dose has been steadily increasing since then. When I was up to 15 mg a day, I went back to the hospital and got 30 more 15 mg pills. That was in July. A few weeks ago, my nephrologist told me to increase my dose to 30 mg a day. I knew my supply wasn’t going to last very long at that rate, so I decided to go ahead and make a trip to the hospital. This was on a Tuesday.

I asked my nephrologist to call ahead and get me a hospital bed, but he told his staff to tell me to just go to the ER. I tried calling my oncologist to have me admitted, but he wasn’t in that day. So I spent six hours in the ER before I was taken to my room. And by that time, it was too late for anything to be done that day, so a huge chunk of my day had been completely wasted.

The next morning, I gave the case worker the grant paperwork that had been filled out last time I’d been in the hospital, so all she had to do was fill out a new form, get an order from my nephrologist for the pills, and fax it to Otsuka. Otsuka has to do an insurance pre-authorization, and once the insurance company denies the claim, they’ll agree to send me the drugs. Sounds simple enough.

So the next day (Thursday), my nurse told me my medication had been approved, my sodium was back up, and I’d be going home that day. Since they’d had to call my primary care physician (PCP) to admit me, he was the only one who could release me. And he wouldn’t let me go until after he’d made his rounds after office hours. So I was stuck for the day.

While I was waiting to be sprung, the Walgreen’s specialty pharmacy called me and said there was a problem with my order due to an insurance issue. I was confused because my pills should have been coming from Otsuka, not Walgreen’s, so I asked what was going on. The billing person at Walgreen’s said my nephrologist’s office was going to appeal the insurance denial so I could stop coming to the hospital every month or so to get my pills. In the meantime, they were going to send me nine pills to “hold me over.” I told her even if my insurance did cover their portion of the Samsca, there was no way I could afford mine. She said, “We have a coupon that will help.”

I was furious because I knew if I went home with only nine pills, there was no way my nephrologist’s office was going to file an appeal and get a response in nine days. My nephrologist couldn’t even be bothered to make a phone call to get me admitted to the hospital. So I called my nurse and asked her to send in the case manager.

I tend to cry when I get really angry, so by the time the case manager got to my room, I was in tears. I told her I couldn’t leave with only nine pills because I’d just end up coming back the following week. She told me the woman at Wallgreen’s was “like a little bulldog,” and she’d be on my nephrologist’s office to file that appeal. And with the Walgreen’s coupon, my share of the pills would only be $10. She said she was doing all this to stop the cycle once and for all so I could quit coming to the hospital for my meds.

Fat chance. I’ve been going through this for three years, and I knew this was going to mean another trip to the hospital in about nine days. But she wasn’t giving me a choice, so I was released from the hospital and the nine pills came via Fedex on Friday.

On Monday, I called my nephrologist’s office and asked for the office manager to see what was happening so far. He said he had just faxed my lab results and progress reports for the past few months to SAV-RX. That’s the drug company for my insurance plan; they do prescription prior authorizations and denials. Now we were just waiting for a response.

This has been going on long enough for me to know what the response was going to be. So I called SAV-RX and asked what I needed to do to file a formal appeal. The woman I talked to said, “We don’t do appeals here.” My insurance company has been telling me all this time that SAV-RX makes all the decisions about medications. So I asked the woman at SAV-RX where I should go to file an appeal. She said, “I don’t know. Look at your insurance policy.” So no help there.

Even though I’d done this more than once before with no success, I called my contact at the insurance company. She’s always been very helpful when I’ve called, even though she hasn’t yet been able to fix this for me. She referred me to someone else, and she said either I or my doctor needed to write a letter to the “appeals committee,” and I should just send it to her with any background information that would help my case.

So I gathered my labs and my progress notes, wrote a letter (My nephrologist would never have done it.), and am sending it out via Fedex in the morning. But there’s really no rush since the appeals committee just met, and it will be a few more months before they meet again.

In the meantime, I’m about out of Samsca, so I’m hoping to go back to the hospital on Wednesday so I can get some more pills to help get me by. I normally try to go to the hospital on a Monday so I don’t get stuck in there over the weekend. But I have an appointment with the oncologist on Wednesday for my next Tecentriq treatment. He seems pretty confident that the Tecentriq will work for me for a while, so I don’t want to miss my treatment and doctor visit. After this visit, we’ll do CT scans to see what’s going on with the cancer.

My hope is to have my oncologist get me a hospital room sometime Wednesday afternoon. Which is tricky because I have to do a balancing act between keeping my sodium high enough to be safe, but low enough to get me admitted to the hospital. That’s going to be pretty tough because I haven’t had it checked since last Thursday. It was 130 then, but now, who knows?

So I figured my safest choice is to only take 15 mg of Samsca today and skip it all together tomorrow. I’ll get up early on Wednesday and have my blood drawn at my nephrologist’s lab because he’ll get the results much quicker if I do it there. Then I’ll go for my treatment and have my blood drawn again (The oncologist’s office doesn’t get their sodium results until the next day.). Early that afternoon, I’ll call the nephrologist’s office (if they haven’t already called me) and ask for my sodium results. Then I’ll call the oncologist’s office and have him get me a bed.

That’s the plan anyway.

On a somewhat lighter note, I had a Skype call with some people from the CDC last Tuesday. I’m being considered for one of their anti-smoking commercials (Who would have thought…?). It will probably take some time before I hear back (being that they’re a government agency). If they do choose me, they’ll fly me to New York, pay for my hotel, and pay me around $3,000 for doing the commercial. I like New York, so that could be fun.

That’s it for now. Thanks for sharing my journey with me.

Julie

While I was still in the hospital, I asked my oncologist if he knew of any clinical trials for small cell lung cancer because I really didn’t want to continue with chemo. He told me he had a new immunotherapy drug for me to try and we’d talk about it the next time I came to his office.

The new drug is called Tecentriq, and I’ve had two doses so far. The main side effect is fatigue, but it also makes me a little loopy for a day or so after I take it. On the plus side, the drug company will pay for it as long as I’m on it, which is a huge relief. I asked my oncologist if this was an old drug or something new. He said the Opdivo came out first, followed by the Tecentriq, and then the Keytruda. So it hasn’t been out for more than a few years.

The Opdivo and the Keytruda are basically the same drug. They’re both checkpoint inhibitors. Tecentriq is a monoclomal antibody. For those who are interested, here’s an explanation of how both types of drugs work. It’s all Greek to me.

I asked the oncologist what he thought of me switching from the chemo to the Tecentriq in terms of efficacy. His response was that we’re again in uncharted territory. But we managed to get about a year and a half out of the Keytruda. And his hope is that we can get at least another year from this drug, at which time he believes there will be new drugs available. Sounds like a plan to me.

My treatments are every three weeks. The next one is on September 12. After the October 3 treatment, we’ll do another scan. The sodium is actually a better indicator of whether or not the treatment is working, but it’ll still be good to know whether or not my tumor is growing and if the cancer has spread.

In the meantime, my sodium continues to drop despite the Samsca, so I’m going to have to start taking more. If the Tecentriq doesn’t start doing it’s job quickly, I see a lot more hospital days in my future in an attempt to get more pills.

That’s all for now. Thanks for sharing my journey with me.

Julie

A day or two after my second round of chemo, my throat again started to burn, confirming my suspicion that the Navelbine was causing mucositis. I again wound up having to take a few doses of oxycodone to get rid of the pain. In the meantime, I developed severe stomach cramps. I called the oncologist’s office, and he prescribed dicyclomine for the cramps. It took a few days, but they finally went away.

One thing of note. Since I couldn’t remember to take the CBD oil four times a day, I had switched to four drops three times a day. It did nothing to relieve the throat or the stomach pain.

When I went to see the oncologist the following week, we decided the Navelbine wasn’t right for me. So he switched me to Gemzar. For this chemo, I was told there would be no side effects except for low platelets (so, bleeding and bruising). I asked about hair loss; he said he couldn’t make any promises. But that’s not a common side effect of Gemzar.

I started on the Gemzar last Friday (treatments every two weeks). When I got home, I ate lunch, then took a nap until it was almost time for dinner. The next day, I went to sleep right after lunch and pretty much slept the rest of the day. So much for no side effects.

I can feel my body growing weaker, which has caused me to wonder if I really want to go through the whole chemo thing again. Maybe it would be better for me to try a clinical trial (if there are any available for small cell lung cancer). The chemo drugs I’m taking now have been around for years, and they only have a 50/50 chance of temporarily controlling the cancer. And each one I try will likely have worse side effects. If I try an experimental drug, I might have a slight chance of survival. Or a better quality of life. Or the chance to help others survive.

Another thing I’ve considered is just stopping the chemo and enjoying what’s left of my life as best I can. My biggest barrier to that is the SIADH. If I were to go on hospice (which I would definitely want to do), I’d no longer be able to do any treatments that aren’t palliative. Without the Samsca, I’d likely be dead in a week or two. Maybe sooner.

This week started out with a blood draw to check my sodium. I was actually hoping it would be low because I’m about out of Samsca. My nephrologist’s office was never able to get me the last 24 pills, so I knew I would need a hospital stay to get some. And Monday is the best day to go to the hospital if I don’t want to be stuck over the weekend. I also needed to time my hospital stay on a week I don’t have chemo. And we have company coming on Thursday.

I guess I’ve gotten pretty good at knowing when to take the pills and when not to. My sodium was 120. My nephrologist had told me when I was ready for my hospital stay, he would call and get me a bed instead of sending me through the ER. That didn’t happen. So I didn’t get to my room until around 7 p.m., and I didn’t get my dose of Samsca until 9 p.m. And I’ve been up all night getting rid of the excess water. Believe it or not, I’ve lost as much as 7.5 pounds in a day after taking one Samsca pill.

My oncologist stopped by this evening, which surprised me because he usually comes very early in the morning. He said, “What do I need to do to get you these pills.” My mind drew a blank (happens a lot lately). I sort of stammered, “I need to see the…” My mind was thinking social worker, but I knew that wasn’t the term I was looking for. Lucky for me, he finished my thought “…case manager.” The case manager will have to get with the drug manufacturer. He (or she) will also have to run the drug through my insurance company (yet again), and wait for them to reject it. This usually takes around 3 days, so I’m hoping to be out of here by Thursday.

In the meantime, the chemo causes my entire head to ring, and I feel like I’m moving through a fog. And I can’t help but wonder what people see when they look at me. It seems surreal that I could feel so broken but look so normal. It’s like I’m walking around with this weird secret. Sometimes I just feel like blurting, “I’m dying. How can you not see that?” I don’t bring this up to be morbid or to garner sympathy. I’m just trying to be as honest as possible about what it’s like for me to face my own mortality.

That’s all for now. Thanks for sharing my journey with me.

Julie

On May 23, I went in for my first new chemo treatment. I was pretty anxious and had a lot of questions about what the drug, vinorelbine/Navelbine, would do to me. My oncologist assured me the drug had virtually no side effects, but offered to give me an anti-nausea med before my chemo in case I was worried. I took him up on his offer.

I felt fine when I first left the cancer center. But when I got home and went outside to walk, I started to feel like everything was moving in slow motion, including my brain. So I finished my walk, then took a 2-hour nap. It seems like I do that fairly often these days. When I got up, I felt fine again.

The next day, I tried the CBD oil (medical marijuana) again. Even though the doctor who prescribed it said vaping is best for people with lung cancer, I wanted to talk to my oncologist before doing it because I didn’t like the idea. My oncologist said it was okay. So I gave it another try.

By Friday night, my entire mouth and throat felt like they were on fire. I initially thought it was from vaping the CBD oil. But I also knew from past experience it could be mucositis from the chemo. Since I couldn’t be sure, I put the CBD oil aside again.

By Saturday night, I couldn’t take the pain anymore. So I broke down and took a few doses of oxycodone (four hours apart). It took the pain away, but for me, that’s not what I’d consider a long-term option. Fortunately, by Sunday I felt better.

On May 30, I went for my second round of chemo. One of the nurses accessed my port and drew my labs. Then I went down to see the oncologist. When he walked into the room, he said, “No treatment today.” What??? It turns out my WBC was really low (Normal is around 3.9 to 11; mine was 1.03.). One of the reasons we’d chosen the Navelbine is because it wasn’t supposed to wipe out my blood counts. Since WBCs usually come back on their own, my oncologist told me to come back the next week and we’d try again.

The next day. I went to see the nephrologist. I was hoping to get some sort of plan as to how often I needed to take the Samsca, and how often to have my blood drawn. I felt like he’d left me hanging over the holiday weekend. On the Sunday before Memorial Day, I felt really sick. So I took a pill that day and another on Monday. And I felt much better by Monday afternoon.

While we were discussing the Samsca, I told the doctor I was about out of pills, so I was planning to go to the hospital the next time my sodium dropped because up until this point, that’s been the only way I could get more pills for free (My insurance company won’t pay for them, and I think they’re about $4500 for 10 pills, if I’m remembering correctly). Anyway, they’re way out of my range. My nephrologist said he thought one of the women who works in his office could get them for me without the hospital trip. I had my doubts because we’d tried it before, but I was all for trying anything that would save me from a hospital visit. Especially with my WBC being so low. I told the doctor to make sure he ordered the 30 mg pills instead of the 15. That way I could take half a pill each time and they’d last twice as long. He agreed.

The nephrologist told me to sake a Samsca the following Sunday and to have my blood drawn weekly (so still no real plan as to how often to take the medication), then he took me out front and asked one of his employees to see if she could get me the free Samsca. She went through the drill (Insurance would have to deny my claim before I could be considered for the free pills…). I asked her how long all this would take because I was down to my last few pills, and she said about a week. That would work. So I went home feeling pretty good overall.

On June 6, I went back to the cancer center fully expecting to finally get my second chemo treatment. But my WBC was only up to 1.17, so again no treatment. Obviously, something was going to have to change. So the oncologist suggested we try Zarxio, which is similar to Neupogen in that they are both designed to improve WBCs between treatments. The Zarxio is given in five injections (one a day for five days). I asked about the Neulasta, which they attach to your stomach, and it automatically gives you a shot the next day. But that can only be given every two weeks. Since my chemo is weekly, Zarxio is our only option. So I agreed.

The next day, the Walgreen’s specialty pharmacy in West Palm Beach called and said they had six Samsca pills ready to ship to me at no cost. They said they had to wait on the insurance denial before they’d be able to send me the other 24. I was happily surprised. They came by mail (someone had to sign for them) the next day. At first, I was pretty excited, but when I looked more closely, I discovered they were only 15 mg/each (great) instead of 30. That means the other 24 pills will also only be 15 mg if I do end up getting them. But six free pills is still better than none.

On June 7, I had my blood checked again. Later that afternoon, I got a call from one of the women at my nephrologist’s office. She said my sodium was only 123, and the doctor wanted me to start taking a Samsca pill every day. At that rate, I’ll be out in just a little more than a week. I told her I had only received six pills so far, and that they were only 15 mg, when I had asked for 30. So she looked at the prescription, and it was for 30 mg tabs. But the instructions say, “Take 1/2 tab every day…” Seriously, this is not rocket science. Nor is this the first (or second, or third) time we’ve been through all this. So, I told her to tell the doctor I was only going to take the pills every other day. Then I decided later to just take them twice a week like I have been, and see what happens.

Today was my fourth Zarxio shot, and having appointments six days a week is already wearing on me. I’m not a morning person, so setting an alarm every day, including weekends, isn’t going to work for me. If this is how it’s going to be every week, we may need to discuss other chemo options, especially if the sore throat returns with my next treatment.

In the meantime, I went back down to the medical marijuana dispensary in Vero Beach to exchange the inhaler for the drops. The place is pretty creepy. It’s always packed, and most of the people there are either really young or look like middle-aged hippies. But I know I shouldn’t judge because I don’t really look ill myself right now, so I have no idea what any of these people are going through. There’s an armed guard standing at the entrance to the back of the building, which is where you actually buy your CBD oil. You have to give the guard your driver’s license and your state-issued medical marijuana card. He looks at it, tells you to have a seat, and gives it to another guy to enter your information into the computer.

When you get to the back of the store, there are about 3-4 employees standing behind a large deask with a couple of cash registers (They only accept cash.). There are no products visible, just samples they use to demonstrate how the various dosing methods are used. And pamphlets you can take home with you. The place I go to only sells oils and inhalers, syringes, etc. No edibles. The cost of the CBD oil with THC is $70/bottle, and one bottle should last 3-4 months if I stick to two drops, four times a day. Which was just a guess based on how the doctor had told me to use the inhaler.

After all that, the drops are working better for me than the inhaler because they don’t make me cough, and I don’t feel the THC as much as I did with the inhaler. But I’m not use to taking anything four times a day, so most days I forget. So on those days, I try to do three drops, three times instead. I’m sure the doctor will probably tell me I need more. But I’m not made of money, and that place is really creepy. So I don’t want to go down there any more often than I have to.

My next chemo treatment is on Wednesday, if the Zarxio has done its job. We’ll see what happens from there.

On Thursday, I’ll take my next blood test and see how my sodium’s holding up. My insurance denial letter came today, so I’m hoping I’ll get a call about the other 24 Samsca pills in the next day or two.

That’s all for now. Thanks for sharing my journey with me.

Julie