Today I confess I feel jealous of all my older relatives who do not have cancer and are living like they were 20 in their 40’s. I’m in my 20’s, but my body I’m like a 90 year old and I hate this, all I can think about is cancer and death, and I’m crying because I cannot take this anymore
Sorry for falling off the grid for a while, as you last knew my kidneys were not being nice to me. Well because of that it meant a big change for me on Friday.
Friday morning I had my 3rd, yes, 3rd renal scan, which is a lot of laying down or sitting with your back being scanned by a fancy machine. If I have a good friendly tech they chat with you and time goes by quickly. Bless my tech, but she wasn’t much of a talker, and that is okay. So after that I went back to my room and rejoiced as my roommate packed up to leave!
Later in the afternoon a cluster of my doctors where outside my room. After a little bit of time they finally came in the room and told me what the plan for my care would be. From the tests they decide that it would be better for me to have a percutaneous nephrostomy also know as PCN or in non-medical terms tubes in my back that go from my kidneys to the outside in to drainage bags. Not being excited about it, but know that it is the best thing to do, I agreed to do it and signed the consent forms. From there it was more hungry waiting and thankfully I had the procedure that afternoon.
Like the other interventional radiology procedures I have had (power port and IP port) I was sedated and had a fun time chatting while a surgeon poked me in the back.
At first it was a huge burst to my confidence, but with time I have gotten to be more and more accepting of Chester and Priscilla (thanks Aunt Ann for the names). It will take time, and I don’t know how long these two lovely things will be with me, but I need my creatinin levels to go down, and this is the best way for it to happen.
I am now home from the hospital, I was discharged on Monday, had a small successful outpatient procedure to remove a small mass on my right side on Tuesday and have been adjusting to the new-ness of what is going on. Thankfully I am healing quite well, and I kinda think it is cool.
Ovarian cancer is the fifth most common cancer among women causing 15,000 deaths a year.(Source: Ovarian Cancer Awareness)Ovarian cancer is difficult to detect and could often be fatal when detected too late. If diagnosed at an early stage, the five-year survival rate is more than 93 percent. The cause is unknown but there are some factors that could increase your risk. Taking oral contraceptive, giving birth and breast feeding are a few ways to reduce your risk of ovarian cancer.
Risk factors Certain risk factors may increase your risk or ovarian cancer. Having one or more of the risk factors does not mean that you will develop it, but your risk is higher than the average woman. These risk factors include the following:
Not giving birth
Giving birth at a late age
Mutations in the genes BRCA1 or BRCA2
Women who have had breast cancer or have a family history of breast cancer or ovarian cancer
Women who take estrogen replacement for five or more years
Symptoms The most common symptoms for ovarian cancer are hard to classify and are often symptoms to other diseases, so by the time cancer is diagnosed the tumor has often spread. Some symptoms for ovarian cancer are as follows:
Pelvic of lower abdominal pain
Abnormal menstrual cycles
Lack of appetite
Nausea and vomiting
Weight gain or loss
Sudden urge to urinate
If you are encountering any of these symptoms, notify your doctor as soon as possible.
Treatment Treatment for ovarian cancer usually involves a combination of surgery and chemotherapy.
Bilateral salpingo-oophorectomy (removal of other ovaries and fallopian tubes
Examination, biopsy, or removal of the lymph nodes and other tissues in the pelvis and abdomen
Went to the doctor today and learned that there is a a trial with a something called a MEK inhibitor that looks like it might be good for me. Currently my hospital is working on getting approved to run this trial, so I have to wait until summer, when my doctor thinks it will be ready for the “guinea pigs”. So until then I will be taking tomaxofin, a hormone inhibitor, yes breast cancer patients take this drug, and see if it shrinks my tumors. This is similar to what I did this past summer. I will get my IP port out in two weeks and then see my doctor in six weeks for a check up.
So in other words I get to be a “normal” person for the next couple of months, finish up school and wait to get in the MEK inhibitor trial. Which is great!
"Medical Update"- Today I had a follow up CT, before treatment. The CT showed that the chemo is not doing what it needs to be doing, also my CA-125 was up from three weeks. That means that the chemo I was suppose to get did not happen. I have now been kicked out of my THIRD clinical trial as a way to kick this cancer. But that does not mean I am giving up, I just have to try something new. I don’t know what that will be, but it will be another step in this journey. I will know what I will do next in a week, until then I don’t know, and don’t have answers or explanations.
In other news Mom and I safely made it through some of the fun snow, but had to stop at a hotel for the night, hopefully we can make it home where I can chill with my awesome parents.
This Thursday will be my 5th treatment out of 6, which means the “end” is near with treatment. I say “end” because I think I will probably need more chemo, but what do I know, we will have to see what my CA-125 is and what the CT shows. I am doing pretty good, and other than pain can’t complain.
This treatment will be a little different because I will be doing it inpatient, instead of outpatient. I am doing it inpatient, because the last two times I got chemo after I finished the chemo and was just getting my fluids my palms and soles of my feet would start itching, benedryl helped, but when I got home my back and shoulders would itch. We don’t know if it is a pain medication reaction or the chemo or the trial drug, but since it is a Phase 1 trial they want me to be observed for 24 hours. So I will see my doctor Thursday morning and then go to onco gyn floor at the hospital and get my chemo there. So nothing really exciting, and probably will be really boring, but it is better to have it investigated and looked into rather than not do anything about it.
I will be sure to let you know how it goes, the only thing that might make it more interesting is the possible snow storm that may be making its way across the midwest, but we will see, come hell or high water I will have my treatment.
I can’t believe I haven’t written in a while, but I was looking and I really have slacked. And for that I apologize, but treatment, school, work, and all that jazz has got me pretty busy, and not really feeling like writing for fun. Anyway In late November I started my newest clinical trial, this trial involves me getting the trial drug and chemo in my peritoneum instead of systemically (through my bloodstream).
I have chemo every three weeks and I have had four treatments. I have a port in my peritoneum which is how 2 plus liters of fluid go in, I am then in a good amount of pain, until I pee out the fluid. The first day I weighed myself and ended up gaining 6 pounds in one session, CRAZY. I will talk more about that some time, I haven’t lost my hair, which I didn’t think I would, but you never know. With this treatment I was able to finish my fall semester and I am already a month into my spring semester, which is my final semester. The chemo is doing some good, my CA-125 has gone down, and my last CT showed some shrinkage. I am only to do 6 total sessions, so I only have two more, but I don’t know if I will have the last one, depends on the CT. I also don’t think that will be the end of treatment, I may keep doing this some more or something else, but I won’t know for a month, so until then I just keep trucking on, and doing the best that I can.
FUCK you hot flashes! You are so damn annoying, why can’t you just leave me the fuck alone. I don’t want to be hot, I don’t want to be flush, I don’t want to break a sweat. Seriously, you were gone and now you are back and a giant pain in my ass. Really just leave me the fuck alone! I don’t want to medicate myself anymore, or buy a chillow, but if you don’t leave me alone, which I know you won’t, I will just have to do those things.
If I wanted to have a wave of heat I would stand near a hand dryer and wave my hands. But I don’t want that, I want to be cold, the same temperature, able to sleep with out having to “breathe” my way out of a hot flash.
So FUCK you surgical menopause. FUCK you chemo, and a REALLY BIG FUCK YOU to hot flashes.