Yesterday was a busy day for me, filled with lots of good news. But as I have learned good news comes with mixed emotions even if the news is something to cheer about. To back track a little bit and to share with you some more good news I have had recently, I will start with my genetics tests. I met with the genetic counselor during the week from hell and because this was so soon into my diagnosis, mostly everything she said went in one ear and out the other. It’s really difficult to take everything in when your mind is racing and you’re not sure what the next step is. During most of my first appointments only one major thing from all the conversations stuck in my head. For the genetics portion on the road to recovery, the thing that stuck out to me most was reoccurrence if I positively tested for one of the genes.
Before this appointment, I didn’t even realize there were other genes they were going to test me for, like all of you I’m sure, I assumed that they were just testing me for the BRCA gene. (I included a picture of all the genes and the related cancers below this post). This would determine whether or not I had a higher risk of the cancer returning in my breasts, if I opted against a double mastectomy, or developing cancer in my ovaries. This is scary enough to think about all on its own, especially since it was only two days after the first mention of freezing my eggs and the day before my appointment at the fertility center. For a long time, I was one of those people who were like NOPE no way, I am not getting married nor am I having kids. Obviously as I got older that mindset started dissipating a little but I was still not 100% sold on the whole kids thing. Sometimes I thought about how fun it would be to have a little mini me terrorizing the world, but as this option was slowly starting to disappear I panicked. Once again, 26-years-old and now having to worry about having kids, with my empty left hand sitting in my childhood bedroom. Now with everything jammed together my mind was running a million miles a minute and I didn’t know which way was up. If I had the BRCA gene and had a kid, they would have a 50% chance of also having the gene. No one else should ever have to deal with this, so there was no way in hell I would be having my own children if I had this gene. The timing on all of this didn’t really give me many options because the time to start freezing my eggs was now. This also meant chemotherapy had to take a back burner so future Kim could have the option of having freezer babies. I was told that the genetic testing would take about 3-4 weeks to come back with the results. This left me constantly questioning if I was even making the right decision with the fertility treatments, because if I had the gene this whole thing would be a waste of time. Despite all this I decided to go the route of freezing my eggs just in case, and now I'm so glad I went the just in case route.
Although I figured I wouldn’t get a call from the genetic counselor for a few more weeks and was already distracted with laying low so my eggs could harvest my phone rang and Beth had some great news to give me. When she called I barely knew who it was, I was getting so many calls from different billing companies at this point I assumed she was just another person asking me what insurance I had. After I put two and two together and realized who it was on the phone I tensed up, “we got your results in very early.” Which to me only met one thing, this is bad news bears and they sped up the testing to tell me the bad news so they could change the treatment option. “All your tests came back negative Kimberly.” WHAT? What does that mean. I made her clarify and repeat that I did not have any of the genes on that scary list. It was the first bit of good news I had gotten in a very long time. I immediately called my mother to tell her the good news and I happy cried for the first time in weeks. Don’t get me wrong the fear was still there, but I knew that this was good news, one less thing to worry about and another check on my list of accomplishments.
On top of being an extremely busy day, yesterday was a huge day for me in terms of accomplishments. It was finally the day of my egg extraction after weeks of preparation, and of course it landed on the same day as a few appointments I had scheduled at Sloan. You only know about the egg extraction a day and a half before its scheduled because they have to make sure all your levels and follicles are ready to be extracted so we were not anticipating all of this falling on the same day. My extraction was scheduled at 6:45AM and of course the Clabby family refuses to be late for anything so we left our house at 4:50AM. There was absolutely no traffic getting into the city the day after Memorial Day and we arrived at about 5:30AM. At this point I was too tired to be nervous, we had been up at 5:00AM for the past few days for blood work and sonograms in the city to see when I would be ready. I was just happy to be going in to get it over with. We were in a tiny waiting room with everyone else from the fertility center who I had seen the day prior, and I was still the youngest one by far. Everyone else waiting in the room was with their partner or husband and here I was, dressed like I had escaped an insane asylum with both of my parents. I almost wanted to scream “I HAVE CANCER, THAT IS WHY I’M HERE,” just so everyone would know and they could stop making guesses. In retrospect, no one probably even noticed but you never think that in the moment. I didn’t get called in for my surgery until around 9AM. I was literally shaking in my scrubs, I had no idea what to expect but all I could rely on was the fact that I was going to be out cold. They laid me down, put me on some oxygen and some sweet old lady gave me a nice downstairs bath and I was out like a light. I woke up and felt wasted, the nurses were talking to me and put in front of me a wide array of snacks and drinks to help myself with. GINGER ALE? My favorite how did you know? “You told me when you woke up, you wanted some ginger ale.” I love myself, always looking out for me. My mom came in to sit with me during recovery and I surprisingly felt fine, my stomach was a little sore and I was a little shaky but I was ready to conquer the rest of the day. The nurses let me know when I was leaving that they were able to take out 13 follicles and would give me a call the next day to let me know how many were mature enough to freeze. I was happy with this number and we moved on to the next few appointments.
At Sloan I was scheduled to get an EKG, a follow up appointment with oncologist and a sonogram of my right lymph nodes. The EKG went fine, I was still so calm from the anesthesia that I pretty much fell asleep during this portion. Off to meet with my oncologist; I kind of knew what was coming but I wasn’t really prepared for it. This appointment was to schedule my first day of chemo. All the tests and fertility appointments happened at lightning speed that I kind of pushed chemo into the back of my mind, but now that the fertility treatment was done as of about two hours ago it was time to get back on track to defeat this thing. My doctor came in and started talking to us and then the unavoidable question, “So when can we start chemo?” She responded with Friday. FRIDAY?! That’s in four days from now, are you serious? I was not ready for that. Also, because I love my weekends and feel like it will keep me sane to have them for myself I asked if we could start on Monday. Thankfully this was an option so for the next 16 weeks, every other Monday I will be sitting in Sloan getting my treatment with everyone else that doesn’t deserve this disease. It’s hard to describe how I feel about this. It’s not that I’m excited because to say that seems crazy, but I am happy to start this part of the journey, the part that will finally fight this cancer. Just to bring everyone down a little, unfortunately the type of cancer I have is less receptive to the chemo, so there is only a 20-30% chance that by the time surgery comes that the cancer will be completely eliminated. 20-30% is not a big percentage but at least it’s something. Because my oncologist has decided to do the chemo first before the surgery, they’re going to monitor me every week to see how my body and the cancer is reacting to the treatment, if they decide the cancer is not responding to the chemo than we can stop the treatment and go straight for the surgery. After having read a lot of other blogs or posts about chemo treatment, the first appointment is the scariest, then from there it’s just boring. I'm just glad I can at least get started on my summer reading.
Now with my first chemo date in the books it was time to move onto my ultrasound appointment. During my MRI with contour my surgeon said they saw a few enlarged lymph nodes on my right side and they wanted to look into them further. Great, my fat arm fear was now doubled and I could potentially have not only one but two fat arms. At this point I definitely looked crazy I was exhausted and wearing actual sweat pants in public, which I never do, with a hospital bracelet, a slight limp from the surgery and hair that resembled a fro. I straight up looked like I had escaped a mental ward, but I knew there were some good signs coming my way. The lady who walked me into the locker room told me that her birthday was the 24th and she was exactly one day older than me. “Thanksgiving babies!” she exclaimed and gave me a high five. Then the sonogram techs assistant came in to get me said her name was also Kim and smiled. The sonogram tech was also one of the nicest people I have ever met. After all of this and the techs comforting words it was still hard to ease my fears, if this appointment went the way I assumed it would, I would be dealing with another cry session on my way home. The doctor was in another room and she kept walking in and out to go talk to them so they could look at the pictures they just took. Finally, after about the third time, Kim walked back in the room and said “everything looks fine.” If I could move at this point I would have hugged her but I was so exhausted and in so much pain I just looked at her wide eyed and said “you’re joking.” “Nope, everything looks normal.” NORMAL? That word is like gold. I left the room smiling and limped over to my parents. With three positive checks to add to my list I was set and ready to go.
Extraction done, chemo date set and normal looking right lymph nodes. Could this get any better? Yes, it can. One of the nurses just called me to let me know that 12 eggs were mature and ready to freeze. Did you hear that? A perfect dozen.
Keeping my head up.
xoxo
Kim
