Re-sharing with the correct link 🙂 For the donations already done to the previous thank you SO MUCH!!!
September is Blood Cancer Awareness month, and this year I’m going to do several things, including my first Light The Night with the Leukemia & Lymphoma Society, which is virtual this year. You can help me by joining my team or donating here. My goal is to raise $500. You can also share this post or my team page with your friends and family, on your social media. If you’d like to share one of my social media posts, you can find them on Instagram, Twitter, Facebook, Linkedin.
Long story short: I was diagnosed with Hodgkin’s Lymphoma in October 2017 and went through several treatments and went through an autologous stem cell transplant almost a year ago. I’m currently in remission. It still feels surreal to type this. And I just want to find ways to make sure no one else has to go through those countless treatments. And if they do, that they have the support I had.
Financially. Emotionally. Physically.
And that more people become aware of blood cancers and the symptoms. And that a cure is found. And that people can find the help they need. Your donation will help. And you joining my team to raise money for LLS will help too.
Oh and another thing you can do? Register to be a donor for BeTheMatch.org. I’ll be soon doing a virtual registration drive for them. But you don’t need to wait to help save a life.
Long story long: I was diagnosed with Hodgkin’s Lymphoma in October 2017 after months of feeling unwell, losing weight, having back pain. It all started with pain as I had a sip of wine back in November/December 2016. I thought back pain was just the way it was. I didn’t exercise enough. I don’t sit or stand straight enough. Fast-forward to a doctor’s visit, a lot of physical therapy, another doctor’s visit and then another. And well, the tumor I had in my chest was now probuting out of my chest wall. Fun times.
When I had my biopsy, I couldn’t lay down all the way because the surgeon was worried about me not being to breathe due to the mass. Which was about the size of half a gallon of milk. When we got the results of the biopsy, we were actually happy. Because Hodgkin’s was a much better outcome in our mind than the other possibilities. I was told and knew from research that I would have 6 months of chemo and then should be okay. After 2 months of chemo, we would do a PET scan and that PET scan would ideally be clear.
Well, it wasn’t.
After 2 months of chemo every 2 weeks (4 different chemo each time), my PET scan wasn’t clear.
I went for a 2nd and 3rd opinion (both gave me so much hope and I’m so grateful to them), and changed care. My current oncologist and his team make me feel like I’m an integral part of my care, and they gave me that hope I mentioned and I was able to start therapy as part of their comprehensive care which was oh so helpful. I changed chemo regimen. Did 6 more months of chemo. Had a clean scan through treatment and an iffy scan after.
That iffy spot ended up being okay 3 months later (as my oncologist had said it would), but another spot showed up. So more watch-and-wait. And then another PET scan. And then a spleen biopsy. And then radiation. And then another PET scan. More watch-and-wait for another spot. And then another PET scan. And then another biopsy. Which didn’t get enough tissue. So another biopsy, this time a mediastinoscopy. And then Hodgkin’s was confirmed. So onward with immunotherapy for several months. Another PET scan.
And then the decision to go through an autologous stem cell transplant. Preparation for that, including placing of another catheter and then cell collection. And then time to go into the hospital.
High-dose chemo for several days. And then my cells were given back to me. And then sepsis, high heart rate (in the 200s) where I needed to get a shot to reduce the heart-rate and there were a lot of people around my bed when that happened as they prepared the paddles to put on my chest…just in case. I could spend more than 300 words on that particular experience. 😉
And then I got better. Still couldn’t eat much or taste but slowly got better.
And then I started immunotherapy maintenance treatment.
And then I got a clean scan.
And then I finished maintenance treatment during Covid-19. My first treatment ever without my husband by my side as caregivers weren’t allowed in the cancer center.
And then another clean scan with something in my nose. And then another clean scan with still something in my nose but smaller. And then a nasal endoscopy, which was weird but very reassuring.
Oh and shingles.
And plenty of therapy sessions.
And quite a few tears.
And a lot of laughter.
Help me make a difference, click here to join my team and/or donate to the Leukemia & Lymphoma Society for #LightTheNight and/or to join my team. Thank you!
I light the night as a survivor, as a supporter of everyone touched by blood cancer being the patient or the family or the friends, and in remembrance of so many people. Too many people, including Melissa Baker from Australia who was a light herself on the Hodgkin’s Refractory group, and passed away at the beginning of the year after so many years of treatment. I didn’t know her personally, because I don’t interact much on the group. But she was such a bright spot. Just like so many others. Lost way too fucking soon. I think of them and their families and their friends and their loved ones often.