Chemo Round 4/Insurance Update

How can I be cold when my face is so red ... welcome to chemo.

Two-Thirds Done
On Monday I had my fourth round of chemo. I had a feeling that this round would be a little tougher than the last one since I actually felt pretty good after round three. I was correct. This round I felt more nauseous than in the others. This is a thing that seems to be building with each round. I take the anti-nausea meds but I still feel pretty sick to my stomach. This finally seemed to start getting better on Saturday night. I guess if I had to describe how I am feeling, it would be tired, sore, nauseous and run down. It's like having a flu that you can't quite get over. I would usually be on the up-swing by now (one week after chemo) but I am not feeling the bounce back yet.

I have been having terrible hot flashes/night sweats since the last round. I wake up every hour or so feeling like I am on fire. And the sweat--it's everywhere. My knees even sweat. One night I sweated through my pillow. As you can see in the above photo, my face is bright red. My oncologist prescribed Effexor to help with the hot flashes. Aetna refused to cover it initially and my doctor had to file some additional appeal paperwork to get it to go through. So, I didn't get the Effexor until Thursday after it was prescribed on Monday. I started it on Friday. So far, I'm still having hot flashes and haven't noticed an improvement.

I have a confession to make. I am starting to gross myself out. After the chemo, I can smell the chemicals on me--in my sweat, my urine--just everywhere. I can't shower it away. I can't get the stench of chemo off me. Chemo makes you feel so disconnected from your physical body. You lose all of your hair and look like an alien. The chemo and assorted drugs mess with your head so you can't remember things or think like you used to. And then all of the side effects make you feel so sick and unlike your normal self. Right now, it feels like I am sort of floating through a life I used to have.

This is becoming a test of my mental strength. I cry when I think that I have to do this two more times. And then I start to think, what if the cancer comes back? What if I have to do chemo again? The only thing to do is focus on the next two weeks that I have before the next round. I just repeat over and over: I'll bounce back. I'll be ready again.

Obligatory swimsuit photo. This is after Round 4. My tummy hurts.

Insurance
In my last post, I mentioned that I was having a number of issues with my insurance coverage and with scheduling an MRI. The MRI is now scheduled for the Friday after I finish chemo. My surgeon's scheduler called and made the appointment and the MRI scheduler who I spoke with is allegedly being "spoken to" about scheduling appointments with chemo patients.

I emailed HR/Benefits at my company and they are looking into the issues that I had with Aetna last week. I think that they are concerned with the customer service aspect but they are also looking into the Hoag/in-network issues. I got an update on Friday (a week after I had my issues) and they said that they are still looking into it. I'm moving forward as if Hoag is in network. I have a consultation with my radiation oncologist tomorrow.

I ran the four plastic surgeons that are in-network in my area by my surgeon, Dr. Coleman. Dr. Coleman indicated that these surgeons were probably not up for a "high-risk" person such as me who needs to have breast reconstruction after radiation. As such, I decided to go with Dr. Zetrenne even though she is out-of-network. I am going to petition Aetna since they said that they may cover her if there were no in-network surgeons within a 30-mile radius who do this type of surgery. I'm sure this will be an exercise that drives me nuts but it is worth a shot. I like to believe that I am a persuasive person.

Surgery Game Plan
After having met with Dr. Coleman and Dr. Zetrenne, I have a game plan for my surgeries. Yes, surgeries. I have learned that I will likely have to have three. Unless the MRI reveals that the cancer has spread into my left breast (which I have no reason to believe that it has), I am going to have a single mastectomy. There is some risk that the cancer could come back in my left breast but at this point, I don't want to cut off that breast if I don't have to. Triple negative cancer is much more likely to come back in my bones, lungs or brain. Super, I know. Due to my extensive tumors, there is no way that they can save my right breast or nipple, even if the tumors shrink a lot (which they are doing). Thus, on March 22, I will have a mastectomy. At that time, I will have a tissue expander put it my breast. Dr. Zetrenne will slowly fill it with fluid so that there is skin available for reconstruction. Beginning in May, I will start radiation. Radiation is every week day for 4-6 weeks. When radiation is done, I have to let my skin heal for six months. So, reconstruction surgery is planned for December.  Dr. Zetrenne said that I do not have enough excess skin/fat on my stomach so she plans to use skin from my back to make a new breast. (Thank you CrossFit and IIFMM, I guess?!?) Once that is done, the third surgery would be to make my breasts symmetrical. I'm calling this my Perky Boobs 2018 plan.

Thank you
Once again, I want to say thank you to my amazing friends and family. I cannot express how much it means to me to receive all of your love, thoughts, texts, emails, gifts, cards, well wishes, etc.

Even though I didn't feel the greatest, I got back to CrossFit on Saturday and on Sunday, I went on a four-mile hike. Nature and fresh air made a big difference ... not to mention the Green Bay Packers.

View from my hike.

Not a Warrior today ... but I will be tomorrow

This past week should have been cause for optimism and perhaps even happiness. I met with my surgeon, Dr. Coleman, to assess my progress and plan the next steps. But that meant that I had to think about the big picture. Not only did this force me to think about how far I have left to go, it meant that I had to deal with my health insurance company. Let's just say that Friday night ended with me eating a bag of potato chips and yelling at Seth.

[This is long but it felt good to write.]

But first, chemo and side effects update
This is my third week since my last chemo (which I had on December 19). So, in theory, this should be the week where I feel the best. But this round of chemo has been a little backward. I felt pretty good after chemo compared to the first two rounds. Less pain. Way less chemo brain and dizziness. I had a great Christmas. I felt a bit more winded than usual at CrossFit but I expected that to happen. But on the Friday, during week 2 after chemo (December 30), I experienced some intense chest pains. The day before, I hadn't eaten as healthy as I should have. I had an In n' Out burger for lunch and went out for dinner (salad and flat bread pizza). That night, I woke up in pain. I couldn't tell what it was--my chest, upper stomach, upper and lower back all hurt. I have also had hot flashes every night during this round so I kind of dozed in and out of the hot flashes and pain. I thought I had indigestion. I woke up in the morning and felt OK. I went to CrossFit and worked out with no problems.

Later that morning, I was sitting in the conference room for a work meeting. I had a portion in the beginning of the meeting where I was the main speaker. That went fine. About 20 minutes in, I started to get the most intense pain--chest, back, stomach, shoulder blades. I could hardly breathe it hurt so bad. I have no idea why, but I refused to excuse myself from the meeting. I guess it was because I didn't want my bosses to see me sick. I only wanted them to see me strong and kicking cancer's ass. So I sat there, sweating, turning white, gasping (although it must not have been audible). After 15 minutes, the pain started to come and go so I would have a few minutes with a dull ache before it became intense again.

The first meeting ended and every one agreed to a small break before we started the next. I went to the bathroom, locked myself in the handicap stall and laid on the floor. I was terrified. Was it just a side effect of chemo? Was I dying? Was something rupturing?

I went back to my office and then my boss's boss stopped by my office to let me know that the next meeting would just be three of us in his office. I got through the next 30 minutes and then called my oncologist. The office was closed.

So I did what any, 43-year-old would do. I called my Mom.

She has gone through chemo and said she did not have this happen to her but she also did not have Neulasta. She encouraged me to try to reach someone from my oncologist's office.

I called my oncologist's office and pushed the button for urgent matters. I got through to an answering service which, in turn, left a message for the on-call oncologist, who was not my oncologist. He called me back within 10 minutes. After we discussed my pain, he said that he thought I was reacting to the Neaulasta. He said that Neulasta causes bone pain and mine was now in the my sternum. During the second round, I had stopped Claritin after the first week with no issues. He told me to take it again and then to call him the next day with an update (even if I was feeling great). He said that lots of people end up in the ER because they think that they are having a heart attack but it's just Neulasta pain. Claritin is the non-medical, every-cancer-patient-knows way to counteract the bone pain caused by Neulasta.

I got home at 4:30 that day and took a Claritin. I had one more major attack about 4 hours later. This time I could lay on the lazy boy and moan. When the worst of it passed, I took a vicidon and went to bed. The next day, I just had a dull ache. I kept taking the Claritin. I had no more flare-ups. Hope that's all it is. Now, can these hot flashes stop!

My Meltdown
I saw my surgeon on Thursday (January 5). She did a manual breast exam and said that she could tell that the tumors were shrinking. She couldn't feel any lumps in my lymph nodes. She can still feel the lump that I found but said it was smaller. We still have some shrinking to do, tumors! She did say that  the difference between this exam and the one I had before chemo was "night and day." Super exciting, right?

She mapped out what would happen post-chemo: 1) Breast MRI to see how tumors look followed by an exam with her; 2) surgery; 3) radiation; 4) (3-6 months later) reconstruction. I told her that I was leaning toward just having a mastectomy on my right side if there was no cancer in the left side. Statistically, my kind of cancer is much more likely to come back in my bones, brain or lungs rather than the other breast and I'd rather spare myself the extra pain and recovery of removing a second breast. She supported this decision. I did not realize that I would have to wait so long for reconstruction, though. I guess they put something called an expander in after the mastectomy to prepare you for reconstruction. I have read that at best, it is uncomfortable, and at worst, painful. Three to six months with this sounds delightful.

I actually like to run but you get the picture. 

I started Friday with all this on my mind. I thought I would make a few quick calls to set up appointments and I would check with Aetna to see if the recommended doctors for radiation and surgery were in network. WRONG.

Dr. Coleman had said that she wasn't sure that the plastic surgeon she wanted me to see would be in network. But she wanted me to have a consult before we scheduled surgery. I checked, she wasn't. But when I first tried to find one that was, I couldn't get any options on the "Find a Doctor'"  benefits website. Then I got a list of about 100 names. So I called Aetna member services. I asked if there was a way to narrow the list to those who specialize in breast reconstruction after mastectomy. I was told I had to call every doctor on the list. After fighting with the rep for a while, she brought a nurse in who super condescendingly said "if it were me, I would want to call and make sure I had an expert and the right person doing my surgery." No shit, if I had 5 people to call. But 100? She told me that I could appeal and try to get the recommended doctor to be covered. So I asked what the criteria to overturn was and she said if there's someone else in your network that can do this surgery within 30 miles, you will be denied. But you can appeal that, too, she said. And what would overturn this decision? If there wasn't a doctor within 30 miles.

And then the rep said that she would stay on the line with me and we could call a few. I declined and hung up. Sigh.

I then checked the recommended radiation oncologist. I couldn't even find this person on our website in or out of network. So I called Dr. Coleman's office. Waited on hold. Ended up leaving a message. The nurse who called back said that the radiation oncologist was in network and that they only refer to this facility. So I called the radiation oncologist's office and they said that they would call and talk to Aetna. Aetna told them that they were now out of network. Ocologist's office gave me their tax ID number and told me that I should call and ask again.

So, I called Aetna again. I asked about the oncologist and the facility that they bill out of and provided the tax ID number.  Out of network. In fact, the rep told me that my employer had selected a crappier insurance for us that greatly narrowed our network in 2017 and now all of the Hoag system is out of network. Hoag is one of the largest hospital networks here. I had my mammogram, biopsy, MRI, pet scan, genetic testing done there. Oh, and my surgeon is part of Hoag. I freaked out. I asked if I was grandfathered in because I started treatment last year. Nope. I started sobbing. Like really sobbing into the phone at this point. The rep then put me on hold so she could double check. 15 minutes later she came back and said she confirmed it's all out of network.

I checked the website and said that that didn't make any sense since my surgeon is still showing as being in network and Hoag Hospital is showing as in network. She put me back on hold for 30 minutes. She returned and said that she and her supervisor both submitted mock claims for me and that Hoag is in network and that I can see the recommended radiation oncologist. She said it was a glitch in their system. She said that she was documenting everything in case they claim that these are out of network later. Super comforting.

She, unlike the first rep, however, was able to give me a list of FOUR in-network breast reconstruction plastic surgeons from the larger list. She was appalled that the first rep told me to call everyone on the first list.

I had one more call to make. All I had to do was schedule a breast MRI for one of the four days that my surgeon said I needed to have it on. OH BOY ...

Scheduler: what was the date of your last period?
Me: Um, a few months ago but I'm going through chemo so it's stopped.
Scheduler: Ok, call me back when you get your period. The MRI has to be 5-12 days after the start of your period.
Me: But it's not going to come back until after I need the MRI.
Scheduler: It HAS to be in the 5-12 day range.
Me: But I saw my surgeon yesterday and she wants me to do it during this particular week.
Scheduler: You need to call her and REMIND her that it needs to be 5-12 days after.
Me: But I'm not getting a period right now.
Scheduler: Well then have her write that on your order.
Me: But I'm telling you ...
Scheduler: Sometimes they forget about the 5-12 days.
Me: I can't deal with this today. I'll call next week.
Scheduler: Sorry but you really need to call when you get your period.

I can only assume that if you schedule breast MRIs for breast cancer patients for a living, you would be aware that chemo causes menopause and lots of patients never get another period.

After this, Seth texted and asked if I could please stop at the gas station on the way home and get him Diet Coke. I stopped and the line was at least 10-deep to check out. So I bought a bag of chips since I was standing next to them for quite a while and screamed at Seth for not getting his own effing Diet Coke since we live across the street from Target. I instantly regretted it. And then I just started sobbing that it was too much. WHY DO I HAVE CANCER? WHY? WHY IS AENTA SO DUMB? WHY IS THE SCHEDULER SO DUMB? And getting through this is not even going to be the worst part. The worst part is going to be knowing that this fucking cancer might come back. In my bones, my lungs or my brain.

So, no, I do not feel like a warrior today.

But I will find warrior me again. I will get up on Monday morning and go to CrossFit and then I will let them put an IV in my arm and slowly drip poison into my body in my strong belief that this is killing my cancer for good. This fight is on.

Warrior prep: Here I am after my Monday CrossFit workout. Twinning (hair) with my coach, Miguel.