I am off to travel, pretty much for the next month I will be traveling the nation. I hope to give updates or keep posting but if I seem to have disappeared that is because I am somewhere having fun or getting opinions from the nations best doctors.
So while I am off trouncing about have a wonderful July!
Here is what I wrote about my recovery in the hospital after my bi-lateral salpingo oophorectomy.
Wednesday was planned as a big day. I got to eat, even if it was a soft diet, they took out my catheter; I took a spit bath and sat up some. Dr. Z came in and officially told me personally about the surgery, which I had already heard from my parents. I had to pee in 6 hours and I didn’t so I had the catheter back, and hadn’t walked as much as I should have. I got beautiful flowers from friends and family, and texts of support. My Dad headed back to the farm to check on things and my cousin Maggie, had a meeting on the hospital campus and came to visit. That meant a lot. Mom and I just chilled and walked some and then she headed back to the hotel.
Wednesday night was the most annoying night. I had Emily as my nurse and Lindsay as my tech. I had had Emily the previous night, and I think she thought I was a little crazy. This night though, I had a high blood pressure and temperature. They were afraid I had an infection, or blood clot, or whatever. Thankfully we got my temperature down with breathing in the incentive spirometer. I think I was woken up about every hour which was not fun. Again the Medical student came at 5:30 and then the doctor who helped Dr. Z came at 6:30 and so on.
Thursday was a good day. I had a great nurse and tech. Rachel was my nurse and she took great care of me. I got up and walked a good amount. I also got off of the pain pump, and began taking oral pain medicine. I also worked my way up from soft foods to solids. What made my Thursday so wonderful was that my friend Kelley and her daughter Sasha came to visit me. It really lifted my spirits and was great to learn that she had been through something similar. Also with her knowing she could let some of my other friends know and they then sent their well wishes. That night I had Julie as my nurse and she was a sweet heart. That night my blood pressure started to be high, so they monitored that a lot.
Then my Friday started the same with early visits from doctors and other staff. It looked liked I could go home. But I had to pass two tests: I had to pee, and either pass gas or have a bowel movement. I felt a little rushed and was not quite ready to give up my security blanket of the hospital, and staff. I knew going home would be hard. What made this day even more stressful was the horrible nurse I had. She was so slow. The other nurses were slow, but not as bad as Ethel. She was the worse. In the morning I passed my first test and peed, I never thought I would ever be excited for that, but I was. I then needed to have a bowel movement. I think they wanted to get rid of me, or “help” me and I some how ended up with a suppository. That wasn’t bad, but some of the events after that weren’t fun.
Dad came back mid-morning, and I had gotten cleaned and was doing some walking. I didn’t get to pick what I ate and ended up with some canned peas, greasy baked fish and potatoes. I wasn’t too happy, but I ate some of it anyway. Later that afternoon I started to not feel good. Right around the time my uncle Mark came to visit, I got sick. I threw up, which is never fun and then add the fact that you are recovering from abdominal surgery and it hurts even more. We paged for the nurse, and it took FOREVER. She finally came and helped get me cleaned up; even though it was not too bad, and said that she would go and get me some nausea medicine. Needless to say she didn’t come back. And after my Dad and uncle decided to leave, I threw up again, quite a bit. Mom paged Ethel, and started cleaning me up. It was a lot more and I got it on me. Not fun. In like 30 minutes she came. And got me new blankets, and a gown, and scalded us for getting rid of the vomit. She claimed she needed to measure it, well it was almost overflowing so we needed to empty it incase I did more. At that point I was so maxed out. I nonchalantly flipped off Ethel and was ready to tell Mom to get me a new nurse. I knew I wasn’t going home, not with being sick, although I had a bowel movement around when I was throwing up.
Also with my high blood pressure the doctors ordered a CT to make sure I didn’t have a blood clot. Before going and getting my CT I got to nap and feel better. I had a great escort to the CT, and got my first scan. It wasn’t bad other than I wasn’t use to laying flat on my back and I had to get a third IV, I woke up from surgery with an IV in each hand, and then getting up, from laying flat. I probably was a little rude to the technicians but I needed help and they weren’t jumping at it. The rest of my evening was good; I ate a light dinner, and did a lot of walking. It was fun being up late walking by the nurse’s station and it looked like they were having a sleep over.
Saturday was the big day, I got to go home. I had passed the tests, my systems had woken up from surgery and we were all ready to go. I spent most of my morning cleaning up, packing and waiting for Mom. She had a harder time getting out of the hotel, parked and whatever else. By 11:30 we were ready and I was discharged. I was taken down to where Mom would pick me up and had plenty of flowers to load. Once we got all loaded we were off. We stopped in Chesterfield for lunch, and then Hannibal for me to walk around and get my hair washed. One would never think a little thing like having clean hair would matter but it does. We then made our way home and got me all settled.
One year ago I was in a hotel waiting to have surgery the next day, I thought it would be nothing major, but little did I know my life would change.
I hope to highlight some of those big days for me in the coming year. Although I don’t know how tomorrow will go for me, right now I already feel the panic setting in, and that tears not far behind.
But for now I will wait to go see fireworks tonight in the heat and post some photos of the fun I had the day before surgery.
We went to the Botanical Garden in St. Louis. I am acting as part of the Lewis and Clark expedition.
Me and a Chihuly sculpture
Friends, not my strongest suit, but something I have always had and thought was important. I had issues with friends keeping them, having enough and much more. So when I was diagnosed cancer my relationship with friends changed. I was “sick” now and death was in the lexicon of world that might come up. But I didn’t think I would become a person with the plague.
For starters it doesn’t help that all of my friends are long distance friends, they live up to 3 hours away and farther. So my seeing them to tell them was not a possibility. So telling my friends I had cancer was not fun at all, all my friends were shocked, but they quickly came back with “you can beat this” or “kick cancers ass”, but those words did not come until I reassured them and let them know I was positive and going to be fine. When I really didn’t know how I was, or if I would be fine. I wanted them to come and visit me, to come to my rescue, but they didn’t.
I have always gone out of my way for friends and others, but now I needed others and they were no where to be found. And that is how it has been, almost a year from my telling friends I have cancer and I still have to go out of my way, no one has come to visit me, all I get are little texts, maybe a phone call, but that is it.
I have even lost my best friend, some one I knew for five years, stood by her during some tough things, but she is no where for me. I haven’t heard from her in weeks, and I just don’t want to fight it.
And I know it is scary, especially because at my age we feel invincible, the world is our oyster. We are in college, and then starting new careers, and to learn a friend has cancer can really shake you. And well it shakes the person it is happening too.
So don’t run for the hills, or distance yourself, but as a friend do what you can. Ask how you can help, take them to treatments, ask them to explain what you don’t know. Tell them you are scared but want to help how ever they think you can.
Just be there. Enjoy the ride.
I don’t have all the answers to living with cancer, nor do I really know a lot about cancer, other than what I have learned. But I want to share some of the things I have learned in the 11 months I have had with cancer.
1. Get a Port, this small device is a God send. Getting chemo weekly meant I would have to get poked twice a week, having a port made it much easier, not to mention I could numb my skin to make it hurt less. And as I learned from my aunt the nurse getting chemo weakens your veins and how bad would it be if you were getting chemo in a vein and the vein burst, then chemo is all over your body and not just in the blood stream.
2. Look into support groups, being able to meet other people with cancer, especially with the type you have, gives you support, hope, and people to talk to with a common interest. I have been so inspired by other survivors, they are the ones who have really helped me on the see hope when I needed. Nothing hopeful as meeting a 14 year survivor.
3. Have Fun! Cancer doesn’t have to be depressing, it can be a blast. One way I did this was by getting bunny slippers that I wore during my infusions. This made me laugh, and I hope it brightened the days of other patients and the staff.
4. Don’t be afraid to speak up, I was able to feel pretty good during chemo, because I was made sure my doctor knew what side effects I was happening. Having nausea the changed up my meds, heartburn take an antacid. Have tingling in your toes tell them.
5. Take time to live “cancer free”. For me I needed to take “breaks” from having cancer. That usually happened when I went to visit friends. I would get to be a 22 year old, and not this sad young woman with cancer. In a couple of weeks I am going to Washington D.C. and I have already decided this is a cancer free trip. This way I hope others will be able to enjoy the trip and I will be able to have fun. If I need to rest, I will, but I won’t let cancer stop me.
I hope that this advice helps anyone looking for advice. I wish someone had told me these things at the beginning of my journey, that way I wouldn’t have to learn it as I go.
P.S. it is my 11 month anniversary of being diagnosed with cancer!
runny and babbit
Less than a year ago I had my first Ob/Gyn appointment, and the next thing I know I am have wellness exams every three weeks. Why you ask? Because I was diagnosed with stage 3c out of the 4 possible stages of ovarian cancer at 22.
You may wonder why my first women’s wellness exam was at 22, well to be honest, I am still a virgin and figured that as long as I am not sexually active I didn’t need to have a speculum in vagina. I could tell you the sad story of my being 22 and never been kiss, etc, but that is for another day, and my therapist to deal with.
I in no way mind that I am still a virgin, I may be a sterile virgin but that wasn’t my decision. I didn’t choose to have a bilateral salpingo oopherectomy. No I hoped my doctor could just go in and simply remove the 5, 7, and 15 cm masses that had grown on my ovaries. But the cancer had other ideas.
So here I am a 23 year old without ovaries and fallopian tubes, who has successfully beat cancer, for now, who want to punch all of the “happy” pregnant women in the world. I won’t actually do it, but every once in a while I really do want to give them a good strong punch the uterus. This is kinda funny when I think about it because I still have my uterus. I don’t have my eggs, but I can still carry a baby, all I need is a donor.
Anyway, back to the cancer. This past summer I learned I had ovarian cancer. Something I had never heard of, and definitely didn’t think I could get. I quickly learned why I hadn’t heard of this cancer- because it mostly affects women who are past menopause, not 22 year olds. And to make it even better there is no way to test for it. I can’t just get a pap smear or mammogram, nope I had to be cut open for my doctor to find it. And thankfully by that point in the crazy medical maze I call the past year, we had gone to a Gynecological Oncologist. So he knew what he was doing and way able to take out all of the cancer with was about 6 or so different tissues along with about 7 others that didn’t have cancer.
Now I could tell you the whole long boring story, or I could tell you the interesting and entertaining bits. Lets see after a month of intense pain on my right side, so bad that pain relievers didn’t make the pain go away I went to the doctor and had a ultrasound, and then another one two months later. Unfortunately it wasn’t just the normal abdominal one, I also go to have the trans-vaginal one, lets just say I though blood would be a normal sight after one of those, not blue conductive gel.
From there I learned I had masses but didn’t know that one was the size of a grapefruit, until the first available OB/GYN told me at my first wellness exam. What makes this one fun is that he had a nurse practitioner student following. So A. she got to see probably one of the oddest reactions to big news like this, literally, after a few tears my mom and I were using our humor to face yet another thing. And B. she got to feel the mass that was on my right ovary that I could feel when I laid down and blocked the doctor from feeling my uterus. Thanks to the mass I should have looked about 3 to 4 months pregnant.
The next interesting thing was having my uterus “cleaned” to then have my ovaries and fallopian tubes removed, leaving my uterus all dress up with no where to go, or at least not more menstrual cycles to deal with. I guess if and when I have an embryo implanted it will be all ready for that, as long as the cob webs haven’t gotten too bad. Anyway I quickly forgot about that after seeing the 50 plus staples along with not being able to laugh, cough, or move because of the pain.
Next came the “plan of attack” which was a clinical trial. But that didn’t come without its own struggles. God Bless insurance companies and the great amount of miscommunication that can happen between the people to submit the paper work to insurance and the people who approve and deny the coverage, I got rejected for approval to the trail, which just had to happen while I was moving back home, and got me worked up enough to get sick. Anyway I talked to my insurance nurse and she looked into and got me approved.
That then lead to the great port. What is a port you ask? Well it is a quarter sized well that is connected to a catheter that goes in to a vein, this intimidating device has become my best friend. Thanks to it I didn’t have to get IVs every time I had treatment, which was weekly, not to mention had a good blood draw making everything a lot easier. And after having an IV in my wrist I was all for the port.
Chemo is best with buddies Chemo also makes you sleepy
From there with my three new scars I started CHEMO, dun dun dun. Something that seems scary, but for me didn’t, I was more freaked out about the port. I quickly got to know the routine-pre meds, chemo, then you go, most likely feeling foggy and ready for a nap. The best part is when the nurses have to put on gowns and gloves to hook the chemo bag up to the pump. What a comforting thought, right, here they have to wear all this protective gear and the medicine they are putting up is going to run through my blood stream, awesome! I can tell you chemo isn’t scary, if anything it is really boring and is the perfect time to take a nap. And depending on the pre-meds you may continue to feel great for a few days after. It’s not day 1 or 2 after chemo that gets you, its day 3 and 4.
And I am sure you have heard about the horrible side effects, if you’re like me you in vision that you are going to be Susan Sarandon in Stepmom. Well thanks to medical advances it isn’t and doesn’t have to be like that at all. It may take time to figure out the right medicines and such, but it doesn’t have to be horrible and for some isn’t.
I don’t know if I paid the right person or what, but I got lucky and didn’t have a tough time, I got nauseous, had heartburn, and other little things but not once did I vomit, and some how I didn’t loose my hair, contrary to what EVERYONE said. I think it was thanks to the song my sister sang to my hair follicles. But I really don’t know why I didn’t loose my hair.
Speaking of songs, that was one of the many fun and positive things I did to get through this. My sister and I came up with songs for Ovarian Cancer the Musical, it was great and I my favorite is “Blame it on the Ch Ch Ch Chemo Brain” Based on the some “Blame it on the Al Al Alcohol”. But songs were not the only thing, I had my chemo bunny slippers, IVan my boyfriend, for a while I called my Port Portica, along with my Chemo buddy Komfort the Koala. Not to mention my Christmas I was decorating my IV pump.
Another fun thing about getting ovarian cancer, especially at my age, is the fact that I was way off the spectrum of “normal” for a woman with ovarian cancer, meaning I was to young, I should be in my 40s, 50s, 60s and so on, but I’m not. That being sad, I became the kid or the support group I went to. It was me usually with my mom and they would think I was there for her, but instead, it was the opposite. Which can be funny, I never thought I would gain moms, thanks to cancer but I did, so many women wanted to help me, or give me advice, or whatever. It’s funny looking back, seeing this 22 year old constantly around older women be it at the support group or the infusion center, but it was nice too.
For me facing something so life changing could only be faced with laughter, humor, funny antics and a positive attitude. And now only two months after finishing chemo, 6 months after diagnosis, and 7 months from surgery I has No Evidence of Disease and I am working on my new normal.
That was written earlier this year. And now after 5 short months of remission the cancer is back and I am again asked to fight this disease.