[Treatment Diary 54] A Day I Could Finally Feel Hope Again

"You're actually doing a little better."
My attending physician said, sounding surprised.
"I know, right!"
I had already heard the results at the Department of Nephrology before coming to Gynecology, so I was already in a state of excitement.
That was on June 29th.
My kidney-related numbers had been poor, and my creatinine levels had been slowly creeping up, but they had dropped significantly. From 1.7 down to 1.25.

I had thought it was inevitable that my kidney function would decline as a side effect of Lenvima. Of course, I had reduced the dosage of Lenvima, but even so, it had only been getting worse, yet for the first time, the numbers were improving!
I was surprised that such a thing could happen, and it gave me hope.
The doctor at the Department of Nephrology also said, "You're in good shape. At this rate, I think it's fine to continue with Lenvima at the current pace."
There is still a lot of protein in my urine, but it was certain that things were improving, so I felt relieved.

At the Department of Gynecology, I consulted about the tumor in my clavicular lymph node.
It used to be only on the left, but now a tumor has formed on the right as well, and the one on the left has grown quite large. It's visible to the naked eye now, and it has become a hard lump.
Because of that, my throat is being compressed, making it hard to speak, and my voice gets hoarse easily. I also find it easy to get phlegm stuck. When I look down, I feel discomfort in my throat.
I thought my vocal cords were weak because I spent little time talking to people, but it seems that wasn't the case. My throat was being compressed from both sides, making it difficult to produce sound.
When I told them that, my attending physician suggested, "Shall we try radiation therapy just on that area?"
Of course, I answered immediately, "I'll do it!" If there is a treatment I can do, I want to do anything.
Actually, the results of the panel test were also no good. There were no clinical trials or anything I could do, and I was in a state where I had no choice but to wait until a new drug was developed and covered by insurance.
Because of my kidneys, I don't know when I might be forced to stop Lenvima. In such a situation, the offer to have radiation therapy just for the clavicle area was a grateful proposal.
My attending physician immediately connected me with the Department of Radiology and made an appointment. I had a CT scan done that day before going home.
My kidney function had improved, and I was going to be able to receive radiation therapy; it was a visit where I felt something like an "achievement" for the first time in a while, and I felt good on the way home.

Then, on July 8th, I first heard the results of the CT scan at the Department of Gynecology. As expected, overall it had "increased slightly," but it wasn't a result that would make me feel that depressed.
In the blood and urine tests, the decline in kidney function was suppressed just like last time. Creatinine was slightly higher than last time at 1.3, but the protein in my urine had decreased, and the creatinine/protein ratio had improved significantly. The tumor markers were also up, but only by a slight increase, which was another relief.

After that, I went to the Department of Radiology for the first time. I had my husband come with me.
The doctor was a young woman, and she was so kind that it was moving.
She explained various things while looking at the CT images, and she also asked me about my symptoms, but she kept looking into my eyes while talking. I felt "genuine compassion" in those eyes. While nodding, she didn't say it in words, but her eyes seemed to be saying, "That must have been hard, it hurts, doesn't it? It's unpleasant, isn't it? It's exhausting, isn't it? You're anxious, aren't you?" I felt she was a doctor I could trust from the bottom of my heart.
I'm the type who doesn't doubt people and gets deceived easily, but when I asked my husband later, he had the same impression, so I think the impression I felt was correct.
I hit the jackpot with a good doctor!

She said, "I think the radiation will probably be effective" (which means the tumor around the clavicle will disappear), and I was also happy that she said that after the clavicle area is finished, it might be okay to treat other areas where radiation could be applied, including the tumor around my abdomen.
Recurrent patients, especially those like me who have it in lymph nodes or peritoneal dissemination rather than organs, are not actively offered radiation therapy. Sometimes it's because there are many tumors, but it's because "even if you remove them, they will recur." Since it becomes a cat-and-mouse game where they form even after being removed, they don't often remove tumors partially. They only recommend chemotherapy (anticancer drugs) that spreads the medicine throughout the entire body.
But now that I have exhausted all chemotherapy, it seems they will provide radiation therapy even for the parts they can. I am grateful.
I have given up on the abdominal area, but the area around the clavicle might disappear completely with this treatment. I hope it disappears. No, I will make it disappear.

The next day, there was immediately a CT scan for radiation therapy and the creation of a "fixation device."
They said they would attach a fixation device during radiation therapy, and that they would build it to fit me perfectly. I didn't know what kind of thing it was or what would be done to me, so I felt nervous for the first time in a while. (I've done so many treatments and tests that I don't get very nervous anymore.)

When I entered the CT scan room, I was told to be topless. I had been told to bring a bath towel, but I had forgotten, so I was given paper to cover my chest.
I lay down on the examination table and was explained that they would take a CT scan, and at the same time, they would create a fixation device, so they would cover me with something like hot clay to take a "mold" from my face to my décolleté. I was told, "It's a little hot, but please don't be surprised. We are taking a mold, so please don't move," which made me even more nervous.
I was given a cap to keep it from getting on my hair, and I closed my eyes.
"I'm going to put it on your face now. It's a little hot, but please don't move."
Since my eyes were closed, I didn't know what it was, but something like warm clay was placed over me, covering from my face to above my chest. It wasn't exactly hot.
About two people pressed that clay-like thing onto my face and around my clavicle. I felt like I was having a death mask made.
Then they took a normal CT scan, and when the clay cooled and hardened, it was removed.
In the end, I couldn't see what it was, but since it's a fixation device that I will use every time during radiation therapy, I will probably see it during treatment. I think about how I will receive radiation while wearing that death mask-like thing every time.

Radiation therapy starts on the 15th. The dose is 3Gy for 10 days. Since weekends and holidays are off, the 29th will be the final day.
It seems to be about 20 minutes per session, but it's hard to go every day.
Radiation itself has no pain, but it seems there is a slight effect on the skin. I don't want scars to remain, but they said they would give me ointment, and if I am careful not to rub it or expose it to ultraviolet rays, I think it will probably be fine.
I won't know the 10-day schedule until the first day on the 15th, but since it seems I can choose the time slot, I am thinking of choosing a time when my husband can drive me. In this heat, it seems quite difficult to receive treatment and walk home.

Because of that, I decided to receive a new treatment starting from the 15th.
It was good that I had just finished submitting my manuscript and had no other interviews or anything scheduled. I will focus on the treatment.
I'm not worried about the treatment itself, but I've been told that I must not take Lenvima on the days I receive treatment. That is quite scary. Even just taking two days off Lenvima causes me to be attacked by severe pain, and I have to stop Lenvima for up to four days: the 15th-17th (3 days), 21st-24th (4 days), and 27th-29th (3 days). Just imagining how much pain I will be in during this period is terrifying. Will I go crazy? Even if I have a ride, will I be able to stand and walk inside the hospital and sit still for 20 minutes to receive treatment? I might be too much in pain to do anything else.
Of course, I will consult with my attending physician and have them prescribe more narcotics, but I'm anxious about whether that will work. Well, there is no doubt that these will be days of enduring quite a lot of pain.
It was still good that there are weekends and holidays. I can take Lenvima on days when there is no radiation. If it were 10 consecutive days, I definitely wouldn't be able to endure it.

But, for now, it's one step forward.
My kidney function is improving, and if radiation therapy ends, I can still continue Lenvima.
If I keep hanging on, hanging on, and somehow manage to stay alive, the day will come when a new drug is developed and I can use it.
Until that day, I will stubbornly keep living!
After being told there was "nothing more to be done," I could only imagine bad things and became mentally unstable, but for the first time in a while, I could feel hope.
I'll do my best with the radiation therapy!!