Progress: Day 15.6 – Radiation Planning

Progress Update

My stats just seem to be getting better! I’m really happy and relieved that my sleep is returning to its normal awesomeness. I’m still feeling pretty tired at the end of the day, but that could be normal since I feel like I’ve been really busy. I haven’t had very much time to write this past week because of everything that is going on. My resting heart rate is returning to around 49-50, which is great. My VO2 Max is slowly going back up (but slowly). My stress (mostly a reflection of my HRV) is staying lower throughout the day. And I’ve been able to resume 5-6 bike rides a week and I walk Ginny almost every day. I am really happy with my progress and feel like I’m bouncing back better than I even expected.

The next step – radiation

I’ve had a lot of appointments since my last post. My initial radiation consultation was way back on October 3, which feels like a lifetime ago at this point. After talking with my radiation oncologist, Dr. Okoye, I also went and checked out the proton beam therapy at the Maryland Proton Center. Before I jump into that, I will give a brief aside about the differences between photon and proton beam therapy and what that means.

Proton vs Photons

Photon radiation is the “traditional” type of radiation that people are probably most familiar with. I’m going to try to avoid getting into a lot of physics partly because I can only sort of explain it myself. Photons are massless particles of electromagnetic radiation, like light. They have characteristics of waves and particles, which basically means that they propagate through space with some kind of oscillation around an equilibrium value while also having characteristics of very small, individualized objects (like atoms). Albert Einstein did a lot of work explaining the behavior of photons and is one of the first people credited with explaining photons as having these properties.

Protons are one of the subatomic particles that exist in the nucleus of an atom. They have a positive charge, unlike their cohabitating partner, the electron, which has a negative charge. In an atom of any element of material, there are an equal number of electrons and protons so that the atom has a neutral charge. This is actually really important and why photon radiation is so different.

Basically, the main difference between photon and proton therapy is that photon radiation travels all through way through your body. Some of the energy dissipates as it travels through your tissues, but it goes all the way through you. Proton therapy, on the other hand, goes to the tumor and stops. Keep in mind that even proton therapy has to enter your body at some point and, if there are healthy tissues or organs in the way, those will get exposed no matter what.

When the photons are “shot” at the target tissue, the radiation is constantly losing energy at it travels through space and tissue. Therefore, the energy level as it leaves the machine is at its highest value. Therefore, it has to be at a certain level when it leaves the machine to deliver the optimal does to the tumor. Proton therapy is actually delivered at a lower value and the energy transferred to the tumor will be greater than the starting energy because protons cause a release of energy when they stop. They calculate it so this happens when the protons hit the tumor or the desired tissue location. The fact that the protons stop is the most critical benefit to traditional photon therapy and why it is the standard of care for pediatric patients. For breast cancer, it is considered “experimental.”

My proton consult

After meeting with the team at the Maryland Proton Center on October 17th, it was clear that Dr. Nichols and Dr. Okoye coordinated on my case. It was reassuring, because it felt like they were both working together to find the best solution for me and my specific situation. I met with the nurse navigator, her resident, a medical student and Dr. Nichols! It was a lot of people. Plus, the facilities were super fancy! It probably has to be because the treatment is so expensive!

I did not learn anything super new from what I already knew going in, but the main point of the appointment was to get the initial consult done so if I go down this road I will already be in the system. It could help to speed things up in the future if I go the proton route. The main reason I would go the proton route is if they cannot achieve the desired treatment plan with photon therapy while avoiding my heart, lungs and left breast. Dr. Nichols told me she expects me to live another 50, 60 or 70 years so she wants to avoid blasting any of my other healthy tissues unnecessarily.

Photon radiation planning

On October 21, I had my planning appointment with Dr. Okoye. It was a strange experience to say the least. The first people that everyone else in the waiting room thought I was in the wrong spot. When patients bring people with them, those guests need to wait in the lobby. They all apparently thought I was too young to be there for radiation. The nurse at the reception obviously knew I belonged there though.

When they called me back, I went and changed into a lovely hospital gown after removing everything from the waste up. The nurse came back to get me and he showed me into a room that had a large CT scan machine in it. There was a hard platform in front of the machine with a notch carved out of it. If I’m honest, I’m not even sure why they gave me the hospital gown because I couldn’t wear it while they were doing the planning. It was probably just because I couldn’t walk down the hallway naked.

Normally for breast cancer radiation, you lay on your back (supine) and reach above your head to grab these handles on either side of your head at about ear height. Apparently, because my chest isn’t very wide they wanted me to lay down on my stomach (prone position) instead. In this position, my left breast is mashed underneath me on a really hard, cold surface while the right one just hangs down. They had a little donut pillow that I laid my head on and then I grabbed the handles in front of me. It was like being on a massage table except not at all comfortable or warm. And instead of a massage, they drew on me with blue markers (see picture at right), stabbed me with a little pin to make the ink stay in my skin and stuck clear stickers to me.

After they had me lined up, I went through the CT scan machine to get a good picture of my insides to make sure that was all lined up, too. They generated this nifty picture where they could plan where the radiation beam goes to avoid my heart and lungs. It shouldn’t have been too difficult to avoid my heart as long as it wasn’t positioned more centrally instead of on the left. The bigger concern was the lungs. If I had laid on my back, the beam would have partly gone through my lungs to ensure they irradiated the whole breast. When I laid on my stomach, it elongated the tissue so that they could avoid my lungs altogether.

The only potential downside to the prone set up is that in the supine setup, you get a little bit of radiation to your lymph node area. From talking with Dr. Nichols, they deliver an equivalent amount of radiation dose to the armpit are to simulate this effect just to keep the two treatments similar. In the prone setup, you avoid the armpit/lymph node area. For my pathology (which said I had no cancer in my lymph nodes), radiation is not clinically indicated for this area.

To be honest, I was quite nervous about giving that up. I cannot easily find papers that speak to my specific situation. However, after asking around for some other opinions, I was reminded that the radiation is primarily meant to help with reducing the chance of local recurrence near the incision site. I guess I have to trust that the chemo and Herceptin will be enough to kill all the remaining cancer cells, if any, floating around anywhere in my body. Unless I hear anything from Dr. Nichols strongly supporting proton therapy, I will probably be going ahead with the photon therapy.

Other goings-ons

In addition to all of these medical appointments, I had to travel to Virginia on Tuesday and Wednesday of last week for a very long business meeting. I was able to stay overnight in Virginia with my friend and meet her beautiful 10-month old daughter! Unfortunately, it was a short stay, but I haven’t seen her very much with the pandemic so any time was really great. The night I got back from Virginia I was absolutely exhausted so I went to sleep really early and fell very soundly asleep. I was so out that a car alarm went off right outside our open window some time around midnight and I didn’t wake up when Maddie woke up in the middle the night.

Maddie told Sean she had had a bad dream and he tried to stay there with her to help her fall back asleep, but she was wide awake. She seemed very unsettled and wouldn’t go back to sleep which was uncharacteristic. I finally ended up waking up around 3 am to find Sean and Maddie both still awake. At some point he realized she had a fever and gave her Tylenol. When I came in, she was still pretty wide awake and felt very hot. Sean went back to sleep to try and get some rest. Maddie kept telling me she saw spiders in her bed and I think her fever was making her hallucinate a bit. She finally fell asleep on my hip.

In the morning, I had to go to a medical appointment so Sean took her to urgent care. All of her rapid tests for flu, strep and COVID came back negative, so we’d have to wait a few days to see if her strep culture came back positive. But the PA thought her ear and tonsil looked swollen and inflamed, so she sent them home with antibiotics. Maddie still had a pretty high fever in the morning (around 102) and the Tylenol only brought it down a little bit. We gave her the first dose of antibiotics in the mid-morning and by the evening she was already doing much better and her fever was gone.

Friday she perked up almost completely, but was still a little tired. We went out with friends to get pizza which she thoroughly enjoyed. She even got her own special glass of “wine” (cranberry juice) in a wine glass. Then we picked up a “special treat” at Vaccaro’s in Little Italy! She picked out her favorite sprinkle cookie.

On Saturday we went to one of her friend’s birthday parties at Patterson Park. They decided to line up his birthday with the Patterson Park Lantern Parade! First we stopped over at his birthday party, which was rainbow themed. A few other kids from Maddie’s class also came and they had the most fun in the world just running around in a big, open field for an hour and a half. After the party, we walked over to pick out a spot to watch the parade. This was actually the first year we had ever gone – Sean and I had never gone even though we’ve lived near Patterson Park for 7 years. They had really cool dragons, jellyfish, bats and other animals that were all lit up. They also had a few drum lines and latin marching bands. Some of the nearby schools were also in the parade. It was really cool and Maddie had a lot of fun.

Finally, on Sunday, Grandmom and Grandpop came over to have dinner with us and to see Maddie. Normally, they come over on Wednesdays, but this week they were going to come on Thursday. With Maddie getting sick, it was best for them not to come over until she had 24 hours of antibiotics under her belt. With all of that getting cancelled, they were able to come over on Sunday instead.

With all of this stuff going on, it’s been hard to find the time to write up a new post, but I finally got one out! I’m hoping this week will be just a little bit more normal and chill. We need a bit of a break to prepare for another birthday party this coming weekend and to get ready for Halloween! Also, Grandma and Grandpa are going to be traveling from Michigan to come visit!