Past few weeks

I meant to use this as a journal of sorts for myself but I’m starting to think an actual journal may have gotten updated more often!

 

I attempted my first chemo on July 15th. Unfortunately that did not go so well. I ended up being allergic to the Taxol. The doctor said its actually usually the solvent which is called cremophor. I had an iv of benedryl first which was fine, just made me sleepy. Then came the taxol which lasted about 3 minutes before my face started swelling up, turned bright red and my blood pressure went down to about 50. I also got hives on my neck and chest.  Overall not a fun experiance.  I got a LOT more benedryl and was fine. The nurses actually laughed at me for being so calm. I was in a clinic with multiple doctors and nurses where better to have an allergic reaction?!? Since that day was a bust they gave me a week off. Went back on the 22nd and tried it with the new drug which is docetaxel (may be spelled wrong). That one was fine. Although the nurse told me later if people react to that one its usually not right away. Yay something to look forward to!!

 

My hair started falling out Wednesday or Thursday last week. At least that I noticed. I could run my fingers through it and it just kept coming out. We went to MOA on Saturday but I wasnt able to find any wigs there. At least not that I liked. I ordered a certificate from the ACS on the 21st of July but it never came so I ordered another on August 6th. Im hoping it comes soon so I can order the wig I want. Otherwise I’m going in for a lab in the morning so Im going to look through the resource room and try to find one I like to wear in the mean time.  I talked to the ACS patient navigator again this morning and she said I could take one and then return it which is nice. There was that short one with blue streaks I was curious about. Might as well have fun with it! Although part of me is like how am I going to hide this at work still. Really everyones going to figure it out.  I was sick of how much my hair was coming out and how tangled it was getting even from just being in a ponytail so I hacked it off this morning.  I definitely didn’t do a good job but its super short and not as noticeable when it falls out. At least I wont have to worry about it tangling anymore!

First post

I don’t intend this to be a public blog. I really just wanted some place to write my thoughts down. 

If anyone actually reads this excuse me for the disconnected thoughts!

 

At 32 years old I never expected to be a cancer patient. I start chemo next week and I’m terrified. Not so much of the chemo but the side effects. I feel like being upset over knowing I will lose my hair is such a vain thing. Its not even the hair as much as the fact that it will identify me as a cancer patient. I’m not really ready for the world to know that. Especially people at work. Only a handful of my coworkers know what is going on. I just want this to be over so I can move on with my life. The other thing that scares me is that I’m basically the same age as my mom was when she was first diagnosed with cancer. Different types (melanoma for her, endometrial for me) but it still hits hard. I watched her have surgery after surgery and it just kept coming back until she died.. I know things have advanced quite a bit in 20 years but the 5 year survival rate for stage 4 endometrial cancer is only 15%. Both my gynecologist and my oncologist told me not to think about that since endometrial cancer is usually something that happens to older (60+ years old) women who already have other health problems. The statistics also don’t separate out people who have died from other causes. I know generally I’m a healthy person and the surgeon thinks she got everything surgically, and the chemo is more to help prevent it from coming back. Just after watching my mom have a recurrence year after year all I can think about it it coming back. I’m trying to stay positive and until I have my first chemo I wont even know what to expect. I’m so grateful for my husband hes been amazing. Asking questions I wouldn’t have thought of, reading my chemo paperwork before I even did. Really if it wasnt for meeting him who knows if this would have been discovered when it was! 

 

 

Lets go back to the beginning. I was never someone who had normal cycles. Asked doctors about it all the time and most either said “stay on the pill” or something to the effect of as long as you get your period a couple times a year you are ok. No one ever go to the root cause. (Lesson ladies PUSH YOUR DOCTOR!!!) I met my husband in 2011 and we werent engaged yet but discussing and I knew I wanted to have kids so I asked again during my yearly exam. For the firs time the provider (actually a NP) brought up PCOS (Poly Cystic Ovarian Syndrome) and suggested I go see an OBGYN. This is one thing I regret. I had heard good things about one specific OBGYN when it came to infertility and other female issues but when they asked I didn’t ask to see him. I assumed (incorrectly) that an OBGYN would be thorough. I had my appt and all I got out of it was, yes you probably have PCOS but if you aren’t trying to get pregnant just stay on the pill. We got married in 2012 and I had talked to my (new doctor) primary a little bit about it and he said he could refer me to a OBGYN but usually they wanted you to wait a year. So I went off the pill in August of 2012. I tried a couple herbal things to normalize my cycle and it seemed to work at first but not for long. Looking back I think it was just still the effects of the pill getting out of my body. In April 2013 I started spotting and it continued for nearly 2 months. I called the OBGYN again and this time requested to see the doctor I had heard about. Saw him in July 2013 and immediately he did an ultrasound and discovered my lining was too thick. He did a biopsy and found some hyperplasia and cancer cells and recommended a D&C. He told me the typical treatment for any endometrial cancer is a hysterectomy but he knew I wanted to have kids so he also told me there was some success with reversing the cancer by putting an IUD in. I elected to have the IUD put in and had my D&C in August 2013. Had another biopsy in October and there didn’t seem to be much change so he said we would leave it in for another 3 months and scheduled an MRI to check for any spreading. The MRI did not find any spreading. In January 2014 I had another D&C and he took out the IUD. Unfortunately the cancer had not reversed enough for it to be considered successful and he referred me to a different doctor who specifically dealt with gynecological cancer. My first appt with her was in February and basically she just said you need a hysterectomy. I still wanted to explore other options so in the mean time we put an IUD back in so it would hopefully prevent it from getting worse. She got me a referral to a reproductive endocrinologist at the main U. We met with him in April and learned a little more about IVF and surrogacy. I had several friends who had offered to be surrogates but at that meeting I learned at least 2 of them would be excluded quickly. He told us if we wanted to do egg retrieval they could give me medication to make me ovulate and retrieve eggs but it could possibly make the cancer worse. Part of me wishes we had done that but it wasnt worth the risk at the time. We also didn’t know how we would afford it at the time. We expected I would be able to keep my ovaries and could do egg retrieval after the hysterectomy. Met with the GYN cancer specialist again in May and scheduled surgery for June 17th. I knew there was a possibility that she would have to take my ovaries but it was the last thing on my mind going in. Aside from the two D&Cs and my wisdom teeth id never had surgery so I was more nervous about that in general. She started doing the surgery laparoscopically but found cancer on the ovaries and on the diaphragm as well so she had to do a large vertical incision in addition to the 3 small ones. It was about 1 pm when I went into the preop area and I remember waking up in my hospital room at 730 pm. I wondered at that time why it had taken so long but I was so out of it I barely talked to my family that was waiting. I felt really awake around 3 am but aside from being in pain I didnt think much about it. I talked to the doctor the next day and found out she had to take it all. She had actually done 17 biopsies. Thankfully everything else was negative except the uterus, ovaries, and diaphragm spots. I found out later there was cancer cells in the fluid in the abdomen. I was in the hospital until June 21st. That is an experience I would be happy to never do again. It was loud, the machines kept going off and I felt like I was constantly getting shots, vitals taken or blood drawn. I’m sure anyone who has been hospitalized will agree with me, it sucks! I was so glad to go home. I still cant sleep comfortably in my own bed (im a side/belly sleeper) so Im grateful for the couch and the recliner. 
 
I met with the oncologist on July 8th and decided to start chemo on July 15th. Im glad to start before I go back to work so I know what to expect but nervous at the same time. The hospital has a resource center for cancer patients that I want to check out. They may even have free wigs which is nice since my insurance doesn’t cover it. 
 
Enough for now, more later.