Fighting the Good Fight

Today we visited the Radiation Oncologist to discuss Thursday's MRI. On the day of the scan itself, all we knew was that there were new spots (worms, except not really - it's cancer!) on the brain. We found out that the spots are "teeny tiny" and that they're not an immediate concern, considering I am on treatment for the lung and other mets (bone and liver) via chemotherapy.

We're giving copies of the MRI to my current oncologist to see what he thinks. Right now, the verdict is that the brain metastases are so minor and non threatening at this point, that the Radiation Oncologist wants to follow up in two months and see if anything has grown. My guess (as well as the doctor's) is that the liver is a greater risk/threat and should be stabilized/treated before we'd do anything for the brain. I'm excited for next week's scans to see what has happened. All I know is that overall (aside from the occasional nausea/pukefest) I'm feeling pretty good!

There was a time before I started this trial where I wondered if I'd ever know what it was like to not feel pain again. After two infusions and an adjustment in my pain medications, I started to feel better. Now, I'm exercising and am able to walk a lot more. Today, we walked quite a distance within the hospital and I walked with my husband to the parking garage, instead of having him pick me up. Right now I feel like I've got a little cold or something, because I'm sniffling a lot and it's been a little harder to breathe, but it doesn't feel like it's in my lungs. My O2 saturation is 99/100 and I don't have a fever at all. I'm treating that and just relaxing today.

I honestly expected the worst, today. It's easy to be pessimistic when you've been diagnosed with lung cancer only a day after a routine office visit. Nowadays, I prepare myself for the worst before every visit. I don't think of it as being negative, I think of it as being realistic. Today was a bit of good news, in my mind. Even if radiation is in my future, I feel like I know what to expect. I know if I get radiation, it's possible (if not likely, depending on the type of treatment) that I'll lose my hair. Big deal. All I really want to do is live - and if I have to deal with unpleasantries to survive, then that's what I have to do.

Either you accept that it's truly going to be a battle, or you don't. There really is no middle ground.

I have a lot to say, apparently.

Sorry, this got kind of long.

I hung up my cleats for the season (Did I even put them on? Can't recall.) effective last Friday. We did a short bike ride of about 4 miles last Friday evening and while I felt fine at the end, the pain in my leg turned up a few notches and I was in agony for the weekend.

I had chemotherapy on Thursday (10/2) and am working today. I'd kind of hoped any stiffness or pain would hold off until tomorrow, but it has started already. It was interesting - for most of Thursday (after chemo) and Friday, I was pretty much totally pain free. I thought it was the steroids, but now I'm thinking it was the heated chair I was in for treatment on Thursday afternoon.

Tonight there's a party for the cycling team I rode for during the National Bike Challenge. I rode 248 miles over 58 days this summer. While I am in awe of those of my friends whose own numbers were in the thousands of miles, I'm pretty damn proud to have been able to get on a bike and ride at all. Unfortunately, my health did not allow me to ride more than I did, but that's okay.

That's not to say it hasn't been hard not to ride - physical limitations aside, it hurts me not to ride mentally. There's a Critical Mass ride? I want to go. I want to be there with my friends. I can't. Team ride? Same thing. I feel like I'm letting people down, and I don't know why. It's hard for me to put my health first, sometimes.

So anyway yeah, this party. My leg is so stiff right now, it's crazy. If I make it to this shindig I will warn you now - I'm not getting up once I sit down. I apologize in advance. Right now, I have to endure about a split second of excruciating pain every time I get up. Then, I can kind of walk. So if I wince, please don't panic. I'll be able to take some pain meds too - I'm a little less worried about being looped up at a party than I am about being looped at work.

My oncologist informed me that since my previous labs on 9/18, that my hemoglobin was low (it went from 10.6 to 8.2. I am to watch for shortness of breath and other symptoms, and labs will be re-drawn next week. If my hemoglobin drops again, I'll need a blood transfusion. I also have an MRI and a consult with Radiation Oncology to discuss how the CyberKnife treatments worked, and what my next step would be. Think happy, tumor melting thoughts okay?

The weather has turned cold, and I mean drastically. Yesterday it was in the 70s. Now, it's in the 40s. This could also be contributing to my "old lady hobble" as I like to call it. I feel kind of like hiding under the covers, but that's boring. Less than an hour to go at work, and then I can rest for a while.

After this cycle ends, I will have a PET scan to see where the cancer is active, or if it's active. A CT scan will show spots where cancer has been active, but will not display current activity. There will likely always be spots, even if the cancer goes completely away in an area - it's kind of like a scar. Then, I will have one more round of my current treatment, and then I will begin some form of maintenance therapy in hopes to continue controlling the cancer.

They found another mutation but it's not serious. I will update later.

Greetings, from infusion!

My internet connection isn't great, but I'm going to try and post a blog.

I've been at the cancer center since about 9:45 this morning (I had to meet with my oncologist) but the appointment to see her was super delayed and we didn't get in until 10:30 or so. She explained the chemotherapy medicines (Carboplatin/Avastin/Alimta) and possible side effects.

We also got information back from Foundation Medicine - there are two more things (mutations?) that were found in my biopsy. There are some clinical trials that involve those new mutations, but the information on them is very limited, and we do not feel it's a good idea to deviate from our current chemotherapy plan. It's very good to have this new information though, because should newer treatments or trials arise in the future, we know that I could be eligible for them.

It's about 1:45 now and I have not gotten my first chemo infusion yet. We had to wait on some labs to come back, and they're ordering medicines to take before I start infusions (anti-nausea I think). I have to ramp the steroids back up today - but only for a couple of days. I was told I'll get tired, but that most side effects (if I have any) will be in a few days, or when we're supposed to be moving stuff. I know nobody will judge me for not doing much/anything in the way of moving but I still feel bad about it.

We went to a BBQ place last night for dinner, it's about a 60 second walk from our new place. It was really good, and we got to have dinner with two of our friends. We picked up some hard candy and snacks on our way home. I bought some lemon drops and some Kind bars (those are yummy). The lemon drops are great!

They did come in to set up my first infusion (Avastin) a little while ago. This first one will take about an hour and a half. I'm about to eat a sandwich that my husband brought over. This infusion is slow, because they have to monitor my blood pressure closely. I'll post more later!

Radioactive

Today was the setup appointment for my CyberKnife sessions. I was told it would be a full day, but ended up leaving the hospital after only 3-4 hours. I met the nurse who I'd usually be dealing with on treatment days (she's wonderful) and we talked about the schedule. Treatment sessions will last about two hours each - there is a stereo in the chamber and I was told I can bring in any CDs I want. Time to make some mixtapes!

I got fitted for my mask, and had a CT scan and MRI. They do these scans at a finer detail to make sure they don't miss any little tumor "seeds" that they can target during sessions. The mask wasn't bad, the MRI was annoying... You do what you have to do. You carry on, or you don't. Those are the options, and I choose to carry on!

It was established that sessions would begin in July - but I've since gotten a phone call and radiation begins next Tuesday. I will likely have two consecutive sessions next week, two more the following week and then a fifth the following week. It's not exactly jam-packed. During radiation therapy, I will not take chemotherapy medication. I will not resume it for three days after radiation ends.

All in all, today wasn't that stressful but I'm still pretty tired. The weather decided to warm up and even our ground floor apartment isn't impervious to 90 degree heat and the humidity. It's gross, I feel slow and exhausted. I'm doing laundry (don't worry, I am not lifting anything heavy) and then plan to take an extremely cold shower.

I'm curious about how radiation will affect me. Most things I read say that side effects with CyberKnife are minimal and don't usually show up for weeks (as the tumors start to dissolve/die) if at all. I'm anxious for business as usual.

Look what I can do!!

This is my husband with me, at a break point in a social bike ride called Cleveland Slow Roll. Slow Roll is a weekly Monday night group bicycle ride. Started by Detroit Bike City Co-Founders Jason Hall and Mike MacKool back in 2010, Slow Roll has grown into Michigan's largest weekly bike ride and has expanded to 5 cities so far. Slow Roll is for everyone, all ages and types of bikes, with a slow pace that's geared to keep everyone together and safe.

A good friend of mine is the organizer of the Cleveland ride, and I try to make it when I can. The ride usually ends at a restaurant, and last night was no exception! We got crazy amounts of delicious soul food, but I'm just not as hungry. Have you ever wanted to tear into a plate of food with reckless abandon and NOT feel guilty about it later? Yeah, I want to do that. I still kind of want to do that. Not on a daily basis or anything, but I want to. I still drank Kool-Aid out of a giant mason jar, though. Pretty sure it had a full cup of sugar in it. I'm not sorry.

This is the first Slow Roll my husband tagged along for, and I know he already knows this but it really made my day for him to go with us. I feel like I'm predominantly a social rider (though I have done plenty of distance tours and even a few time trials) and he's not - so it was sort of a big deal to me for him to ride along. Riding a bicycle is a huge part of my life, and my marriage is also a huge part of my life - it is nice when the two come together.

I'm really impatient about starting treatment, I don't want to wait anymore. I feel a little weird for actually wanting to be radiated - but I'm anxious. Not having any cancer treatment right now feels like using a computer you KNOW is full of viruses. You could do something about it, but for some foolish reason you are not. I know there are procedures in place - steps that have to be taken. I know this. But a creeping fear sets in every time I feel myself wheeze a little when I take a breath.

Let's get moving, already.