Still in limbo

I really want to say the waiting is killing me, but it seem too close to begging a question of figuratively or literally.

In other news, if there was any doubt that my immune system is sick, I’m on my second round of antibiotics this month. Strep earlier, and a UTI this week. Ugh. And that’s too much antibiotics, so I just had to ask for difulcan. I’m a mess. Lol

This can’t be real

About 20 years ago, there was this one night where I was at a party and (shockingly) drank too much.  I ended up having a bit of a mental breakdown, and my The bf/now ex found me sitting on the side of the bathtub, rocking back and forth, repeating “this is not me.” I don’t talk about that night much, suffice to say, I was in a very dark place then, which was not helped by alcohol.

Yet that’s how I feel right now. Like I want to sit on the edge of that bathtub again repeating “this is not real.” I haven’t shed a single tear over any one this, but I kinda want to. This was made more real by the call I got today, from the pharmaceutical company that makes the targeted therapy I was supposed to get, the $31,000 one. I learned that I had been scheduled to start yesterday. I knew I had been on the schedule until the Hopkins “hold-up.” But, that got me a bit “shits getting real.”

I’m still behind that therapy, and I suspect it’s where we will end up.  But it’ll be 6 cycles, at 3 weeks each. The good news is that not starting yesterday means I can go see one of my favorite bands, which is playing in 3 weeks. Yay! The bad news, is that starting next week is likely to interfere with a show later this summer.  I just bought the ticket last weekend, because I was tired if putting everything on hold. And now I might not get to go! We had to cancel our summer vacation, so it was something to look forward to. But we are still hoping to hit the beach, if we can still find a beach house by the time I have a schedule.

I did something out of character. But I bought a t-shirt with a purple ribbon on it. This is something I’ve never done before. I tended to view that as a phase of my life, a sucky sucky one, but just a phase. I don’t go around all “I’m a survivor!” Nope. That’s not me. But it’s possible this time around... maybe. And I am almost guaranteed to have my usual piss-off pink fit in October.

At least it was a beautiful day!! Perfect skies, perfect temperature. And Kyle is putting up my dart board tomorrow, so I can throw pointy things.

Stump the expert

Had my consult at Johns Hopkins today. And I am no closer to a plan. The ESTJ in me is screaming.

I thought I was going to go in, and we’d go over my oncologist’s recommended course of action, which I have thoroughly researched and agree is a good one. He would bless that, and then tomorrow, I’d see my regular oncologist and we would start scheduling and moving forward.

Instead I heard things like “the book on late relapse is very thin” and “I think we’ve done a different course of treatment for each on we’ve seen.” Plus the “if you were 70, this would be much more straight forward, zap you with some radiation and be done.”  Way to be difficult, Ruby!

So, he is going to get all the hodgkins folks at Hopkins together, and discuss. I though they already did that when they accepted me, but I guess not. That will be next Tuesday. The one thing we all agreed on is that a stem cell transplant (most would know of this as a bone marrow transplant) is not on the table right now. Although it’s typically round 2, we will save round 3, and hopefully will never need it. The best thing I heard is that the risks of treating it wrong are much higher than any risk from sitting on it for another few weeks. Because I want to get started! I think I asked about the delays 3 times, and each time I heard not to worry about it. Easy for him to say!!

So it’s way too late to cancel my appointment for tomorrow, since it is the first one in the morning. I guess it will end up as a therapy session instead lol

Dates

May 15, 2004 - found lump above my collarbone
June 16, 2004 - official diagnosis
July 1, 2004 - started chemo
Dec 2004 - ended chemo
April 22, 2014 - my “have a nice life” (i.e., “last”) oncology follow up
March 17, 2019 - stuttering lacunae stroke
March 19, 2019 - CT showing enlarged lymph node. “Reoccurrent lymphoma cannot be excluded”
April 1, 2019 - PET scan with glowing in the mediastinal area
April 25, 2019 - biopsy
May 2, 2019 - official diagnosis #2
...

I finally got in to Hopkins. Next Tuesday. Saw radiation oncology today, and she was able to talk me down from my ledge. She pointed out it’s very small and localized. I almost said still small, but it’s been 6 weeks since we saw it.  But another week probably won’t matter. And yes, I’m doing radiation this time. We skipped it last time for multiple reasons (read old posts from July 2004). Since I’m now older than 35, the risks aren’t as high anymore. Plus, I don’t want to leave one cell behind this time. I don’t want to do this again in another 15 years!

Maybe this weekend I’ll break out the real computer (instead of the iPad) and write up my lit review, because I can give you all sorts of details about late relapse and chemo response rates.

I feel like things are starting to move

compared with 2004, this has been going at a snails pace. I’m slightly to blame since I was all blazé and “I’m out of town next week, and it’s just hodgkins, it’s slow and can sit.” Yes, my oncologist cringed a bit at that and kindly pointed out it’s sitting in the middle of my chest and getting close to things like the aorta. But anyway, typically hodgkins is a nice, slow grower and it’s not a huge rush. But I’m ready to get on with it! Last time, I went from diagnosis to chemo in 2 weeks, and given that is my frame of reference, and it’s been 2 weeks. Enough already! But really, I just need a start date so I can start planning things out. For example, if I start May 24th, I can layout a schedule and commit to things. As it is, I can’t even plan a meeting for mid-June because I don’t know where/how I’ll be.

In cost of healthcare news, back from a July 2994 post, my biopsy genetic cost $4400 last time (and was denied).
4,360.00 was denied with the following code: 256 SERVICES MUST BE PERFORMED BY A PARTICIPATING PROVIDER. CLAIM IS DENIED. MEMBER MAY BE BILLED. 

Same tests at the same lab billed roughly $10k this time. But it was paid with no fight. Yay? I could not find my cost spreadsheet. Alas.

Radiation oncology tomorrow. Johns Hopkins next Tuesday. I have about given up on the clinical trial, and I’m ok with that.

0.66% and Hopkins

So, you can like your doctor but hate his office staff, right? Because I’m feeling that now.

I called Hopkins on Monday, and it turns out they were still waiting on records. I tattled, and was promised it would be handled. But as of 4pm today, my current records have yet to be found. They do seem to have enough to do something right now. You know why? Because *I* sent them what I had. And then I found out I may have the only copy of my original records. I called up Dr A’s office, who kind of cringed and said they would see if they were in the archives. But I think I have about 95% of them.  I’m debating stopping by their office on the way to work tomorrow and pulling a front desk sit-in. It’s works for hotels who piss me off! But, I don’t want to lose my reputation of being nice...

My case will be presented to the lymphoma doctors tomorrow. And hopefully one will agree to see me. I think I’m fairly interesting, so we shall see. What is interesting is that, because I reread my whole blog, I now “remember” that May 15, 2004 is when I first found the lump just above my collarbone.  And then, 15 years to the day, my relapse case will get presented to a world renown, major research cancer center.

In good news, I found out today that my treatment plan has been approved by my insurance. It’s going to cost me (and them) a lot. One dose is $31,000. My coinsurance is 30%, but I have an out of pocket maximum, which I will hit in one dose. They put in an application for copay relief for me, but I’m not holding my breath. I suspect our household income in too high (DINKs in a NE metro area). So, since our summer trip to Yellowstone was already canceled, I guess I’ll get lifesaving drug instead.

At one point last time, I was keeping track of the costs. I wonder if that spreadsheet still exists? I quit part way through because it became clear I wasn’t going to hit the % required for a tax deduction, so I don’t know how high I got. If I can find it, it’ll be interesting to see the difference. I’m pretty sure the only copy is on a doorstop downstairs.

For the record, it still doesn’t feel real yet. I still can’t believe I’m sitting here. When I was talking with Hopkins today she was asking about records for some recent years. I reminded her that I was followed by oncology until 2014, but the it was “good luck, have a nice life.” Because ITS NOT SUPPOSED TO COME BACK AFTER 15 YEARS. The German Hodgkins Study Group found 45 relapses after 10 years, in almost 7000 patients. I did the math, 0.66% relapsed this late. Yay for outliers! Or something. There is another lottery I would have rather won.

Developing a game plan

I don’t have much, if anything, new this week. Hopkins pissed me off because they got much hopes up calling so quickly last Friday. Now, it’s a week later and they haven’t called back to actually schedule anything. 

That said, I’ve taken a crash course in the past 5 years of lymphoma research this week. It’s actually pretty amazing how much progress has been made with hodgkins over the past few years. Which is so awesome because it means there are options now. Also frustrating because we have to chose an option, and there are so many options. Targeted therapies, checkpoint inhibitors, immunotherapy... so much. Whatever I do, it’s going to have something called brentuximab v-something. Biggest issue there is peripheral neuropathy. Which I got from bleo last time, so I’m expecting it’ll hit again. Boo. But, there isn’t too much else. And I think I keep my hair. Woo! This blog has some old pictures of my without hair. Kinda scary. The hair thing bugs me because it’s what makes me look sick. 

I went to see my primary today. I had a sore throat last night and she wanted me to come in for a strep test. She is pretty awesome. It’s not strep, I think maybe a tonsil stone. But whatever. We did have a short conversation about how I’m not sick now, but friggin chemo will make me sick. That is so frustrating. I’m. It sick! Just this deadly thing lurking in my chest. Meh, details details. 

I’m hoping to start something next week (BVB). I’ve decided and I’m ready, but I’m not sure if oncology is ready or wants to wait for Hopkins. I’m someone who needs a plan and a schedule, so this lack of plan not working for me.

Too nice for ICE

So, turns out, when you relapse FIFTEEN YEARS later, things aren’t as straight forward. There are multiple options, all of which qualify as best standard of care. My oncologist spent an hour (over his lunch break) with me on Friday going through the options. He had emailed several lymphoma specialists, which each gave a different recommendation. Great. In the end, he decided to send me up to Johns Hopkins for a consult.

Based on the emails he showed me, I think Hopkins is going to want me for their clinical trial. Reading about it, I think I might be game. It is an immunology based treatment, and early stuff shows very promising results. As a backup plan, I think his plan is a good one. We’lol see what Hopkins says. They have already been in touch, so hopefully I’ll get in toward the end of the week. Meanwhile, work travel, radiation oncology consult, and getting another port installed are on the agenda.

For the port, I’ll be going back to the guy that did the mediastenospy. We should be able to just go straight to surgery, since a) he just cut on me 10 days ago. I still have the steri-strips and 2) I know he has already considered where he’d put a port on my because he was critiquing the location (scar) from my previous on. My biggest concern is that I’ll schedule that on Monday, and then Tuesday, Hopkins will call and only have an appointment the same day.

I’m still wrapping my head around everything. I’m kinda glad this blog was still around since I never archived it or anything. But I’ve actualy been re-reading it. It’s funny what you forget after 15 years. In my head, chemo wasn’t so bad, I worked virtually full time the whole way through, and never threw up. But looking back, it did kinda suck. One of the options now, is a pretty brutal combo that given inpatient. Technically, its the standard line of treatment for relapse, but for relapses in the first 5    years. Not 15. My oncologist said I was “too nice for ICE” and he didn’t want to do that to me. Reading about patient expierences on ICE vs ABVD (what I did last time) vs the new options (Brentux... + brenmustine = BVB) or other combos with Brent, it’s a toss up. Some people sail through, other have horrible allergic reactions to Brent. And we are looking at 16 3-week cycles. Almost a year of this shit!

Non-officially official

So pathology isn’t that conclusive yet. They saw a few RS cells, which means hodgkins. But the genetics tests aren’t behaving. Like it just didn’t give an answer. So, it’s unlikely to be done tomorrow. And we canceled the appointment. Just for fun, I have to spend next week out of town for work, so my oncologist will spend the week figuring out what to do with me, including consulting Hopkins. And then I’ll be back and we will make a plan.