The very beginning of Fall started with another surgery! I had been bugging Kaiser all August (once my fertility procedure was done) to set up my next surgical biopsy/ goiter removal. I had some vacation time that I wanted to be able to use and I was hoping that the stars would align to make it happen!Ā
I was NERVOUS about this surgery. Dr. Butt was going to be removing my thyroid to get behind it to one of my cancerous tumors, I would also need to have my breast bone broken to remove my goiter. This was going to take a month to recover from and Iād have to spend a couple nights in the hospital (Which I also was really, reallllllllllly not looking forward to).Ā
I was nervous about this surgery because it was going to take longer and be more difficult to bounce back from. The procedure went well, and only half of my thyroid needed to be removed but what wasĀ so miraculous is that I didnāt actually have a goiter at all!! The mass in my chest was an extension of my lymph node... now, this raises more questions than anything else but I am grateful it wasnāt there. To me though, this news meant that I had cancer in my chest, near my heart and lungs!!!! BUT, the doctors told me no such thing. They did say it ended up shrinking with the chemo... but it never showed up in my PET scan so I guess Iām still just going to focus on that!!
I really hate the scar from this procedure. The last 2 surgeries I had Dr. Butt could use the same entrance point so she didnāt create any new scars. The original scar is also more faint, can be covered with a necklace, and is flat. The new one is in the middle of my neck and itās a few inches long. It stayed swollen for a long time and unfortunately itās still red (4 months later). Iām still hopeful that it will continue to fade... but Iām also really self conscious about it.Ā
A few days after my procedure I got an email from Kaiser confirming my Hodgkinās Lymphoma, it was really nice to have no surprises. My mom and I met with the oncologist to go over what my treatment plan would look like. I thought that weād just review what she had told me during the summer. Iād get 3 months of the steroid base chemo and move into the stem cell transplant. I was fooled AGAIN!!! I donāt know why I canāt seem to learn that nothing goes as planned!
When the doctor was discussing my options with me she included what we had originally planned, but she also had told me that a lot of research had been done over the summer while I wasnāt going through treatment. The oncologist was really excited about the potential of me participating at a clinical trial at Stanford. This trial would be using immunotherapy to send my body into overdrive and attack the cancer. I cried (of course) because it was yet another change in my treatment plan, but she told me the trial was offered at Stanford and honestly, that was the main reason I agreed to it. I thought Iād have better care, better treatment, Iād be working with LYMPHOMA specialists and Stanford Ā has a pretty great cancer center. My mom was also incredibly excited about it and the oncologist thought it was the best option for me. I told my oncologist I would like to participate and she got the ball rolling.Ā
And then I got a call....
My oncologist called me like 3 days later and told me that the trial was no longer available. She also told me she knew me well enough to not call with JUST that information. She told me about a different trial at Stanford that was the same drugs as the original one with a backbone of chemo, she asked if I wanted to participate and I said yes.Ā
The team I had at Stanford was A+ I canāt even recommend better people. My quality of personal and medical care was a million times better than it was at Kaiser. Iāve always been a fan of Kaiser, I hadnāt really had any problems, Iāve liked most of my doctors, and I feel like Iāve gotten what I need for the most part. But Stanford, oh my god, it was just incredible. I had a team of 5 people just for me! They met with me each visit, constantly checked in on me, they were all so professional and knowledgeable, and they were not uncomfortable when I cried!! They were supportive, and educated. They reminded me a lot of my fertility doctor. Just, such a great team. My first meeting with them was quite comprehensive and long, and as much as I rave about Stanford the first day was difficult. They were telling me more about the trial; the treatment Iād be getting was basically the medical future- the only downside is that the trial was 3 years long with 2 years of active treatment followed by a stem cell transplant.
2 YEARS??????? 2 YEARS?????? 2 YEARS OF TREATMENT?? IāLL BE 30 WHEN I EVEN GET A STEM CELL? CAN I GO TO GRAD SCHOOL? CAN I MOVE UP IN MY CAREER? AM I PUTTING MY LIFE ON HOLD FOR 2+ YEARS???Ā
These were the questions I asked and were the things that really upset me. Iāve been looking at my cancer as an inconvenience that I want to knock out and move past! 2 years meant it would be a constant reminder of being sick, not being able to live my full life, and always having this baggage. I went through all stages of grief within 2 hours but ended up accepting it and moving forward. I wanted the immunotherapy and I was trying to figure out how I could still live my best life while going through this.
SO, I decided to sign up to volunteer with a local literacy program, teaching English to refugees, and I was hired to start teaching ESL online to young learners in China (for some extra cash). I had put all of these things on hold while going through chemo, and they were now things Iād be allowed to do during the new treatment.Ā My first cycle of immunotherapy was really good. I had an awesome infusion nurse and no side effects during treatment. I felt a little hungover when I was at work the next day but it felt NOTHING like what chemo felt like.Ā
I was making things work! I was volunteering, taking on new projects at work, hanging out with my friends, going to conferences, and living my normal life. I was really accepting that Iād be able to do this for 2 years, I could totally go to school and go through treatment. I could make this work.
I had an allergic reaction. About 2 weeks after I had my first treatment I got an incredibly itchy rash on my hands, lips, and the inside of my mouth. My tongue was swollen and I was worried. I was taking Benadryl but it wasnāt really helping so I called the advice nurse. She told me that I needed to go to the emergency room immediately sooooo my mom drove me over to the ER at Kaiser. I was literally fine, just itchy and swollen. I was actually pretty mad that I had to pay $100 for literally nothing.Ā
I was examined by the ER doctor, told her my background and what was happening with the immunotherapy. I told her that I knew I wasnāt in or going in to anaphylaxis and she agreed. She saw that my oxygen levels were good and sent me back to get observed. The nurse was giving me Benadryl because Kaiser was too afraid to give me a steroid in case it would interfere with the trial. So... I sat there while Kaiser gave me the same drugs I was taking at home. They eventually let me leave because I told them I had an appointment at Stanford in 2 days.
Reflecting back, Iām pretty grateful I didnāt die in my sleep. I choked on my swollen tongue 2 nights in a row... so thatās great.Ā
When I got to Stanford they saw my reaction and immediately gave me a steroid. They were super concerned about what happened and pretty pissed that Kaiser didnāt give me steroids in the ER. This reaction unfortunately disqualified me from the trial because they didnāt want to risk what would happen next. I guess the tongue swelling is an initial sign that my airways could close in the future and apparently everyone wants me to breathe. Whatever.Ā
I was pulled from the trial.... RIGHT WHEN I WAS LEARNING HOW TO LIVE MY LIFE THROUGH TREATMENT. Another rough moment BUT at least I still have options that can get me disease free.
So, back to Kaiser we went! The oncologist told me weād go to the standard plan that all patients would do if they didnāt have access to a clinical trial. Iād start a chemo program called ICE (which is 3 day in patient chemo), and then move over to Stanford for the stem cell. The bright spot about doing things this way is that it will be a shorter process. Iām not pumped about the chemicals and radiation in my body, and I feel like cancer is certainly in my long-term future but this should get me disease free now. Iām so hopeful that this plan goes smoothly and successfully and that medical research continues to flourish.