Thank you for your amazing patience with me these past 15 months. Finally I can say, I am in remission! It will take me some time to transition to what my new normal will be, but for now I have started designing and quilting again. I am going to set up my dye area this coming week and I will have some new items available soon in my etsy shop!
So, for those of you who are interested in what this crazy time has been like I will give you a quick version. You can always email with questions or if you need advice. What I have to say to everyone out there regardless of sex or age or how healthy and chemical free you think you may be; GO TO THE DOCTOR!! Get regular check ups. Insist upon x-rays if you have any issues that are not being resolved, insist on specialists and more testing until you are satisfied with your answers. ALWAYS get a second opinion. If I had listened to my first surgeon I would be dead today because he told me not only that I didn’t have cancer, but that my tumor was just scar tissue and I would have it for life and learn to deal with it (when in reality it was surrounding my SVC and suffocating me).
So the quick version of my story is as followed. I hadn’t been feeling right for 5 years. I went to a very prestigious hospital for 6 days of extensive testing, no results, basically was told see a psychologist. Well, that makes you feel really good about yourself. So for the next few years I lived in misery, dizzy daily, some days I couldn’t get out of bed, had trouble breathing but felt that since this very prestigious hospital said nothing was wrong, nothing was wrong.
Last May, 2017, I started having a really deep cough, I pushed it off saying it was allergies, because I am allergic to so many things. Fast forward to August, I was out of town and was having a lot of difficulty breathing, coughing so much I could barely stop and falling asleep at 6pm from overwhelmingly exhausted. I got home and quickly went to my primary doctor. They did an x-ray said I probably had pneumonia, put me on some medicine and I thought all would be well. A day later I found out there was something in my lung that was showing up on the x-ray that wasn’t normal so they wanted me to do a CT-scan. So, I did the CT-scan to find out I had a tumor the size of an orange or so in my chest. I will make this part as quick as possible (again if you are struggling to find answers or need to talk DM me PLEASE I will give you details and help you through).
I had a ct needle biopsy, results inconclusive. So, I had a right lateral thoracotomy for better samples for more biopsies. I apologize ahead of time to anyone who ever has to endure this surgery and the healing process. It has been 15 months and I am still in daily pain due to a severed nerve. Seriously, message me and I will send you a package of everything that got me through!
Inconclusive once again. I won’t get into it but after I was released from the hospital and was able to sit in a car we drove 7 hours to Indiana University Simon Cancer Center and got a second opinion. They immediately did a PET scan. Results showed it was definitely cancer, what type still unknown. I had another ct needle biopsy done, unfortunately again, results inconclusive. They were leaning towards one type of cancer but it also had similar markers to a few other types.
My surgeon who saved my life and I will literally NEVER forget, did a clamshell thoracotomy, removed most of my right lung, lymph nodes, right phrenic nerve and my giant tumor and was able to get me a diagnosis from biopsies!
I was diagnosed with Hodgkins Lymphoma, staging means nothing in my case because I had a surgery prior to diagnosis. I started chemo about two months later when I was recovered enough to get through chemo. I won’t sugar coat it, chemo sucked, however, I made it. I truly was contemplating not doing chemo at one point because someone had scared me so much about it. Don’t ever let someone else’s experience with treatments make or break your decision making. It is different for everyone. I had some really good days during chemo, would go to brunch and even had friends visit and went to the zoo. You manage to embrace your good days.
So, then I went through radiation. For me radiation aside from fatigue was totally fine. I had no other side effects. My radiation therapists played my favorite band, Phish, during my treatments so it was as relaxing as possible. My biggest suggestion for treatment is making sure you are as comfortable as possible with your therapists and Doctors. That makes a world of difference.
So here we are at the end of 2018, more than 15 months after my first biopsy and I am still recovering but I am back to living in my beautiful cabin, sewing daily, enjoying the snow and baking like crazy!
I look forward to interacting more with you this year and am always here for anyone who may just want to talk about their experiences.
xx Kathryn Marie