Hoping It Gets Better

I just finished today with my second chemo appointment. The past two weeks since my first chemo appointment have been the roughest in my life, which is why I haven’t been able to update much.

I had my first chemo on Thursday, July 16 and felt bad that Thursday and Friday, battling nausea and fatigue. Saturday and Sunday went pretty well except for one of my anti-nausea medicines caused nerve issues (jaw tightening and swollen tongue), so they swapped it out for another drug. I thought I was going to be fine on Monday, but that’s when the pain in the right shoulder started. I also battled with nausea on Monday through Wednesday. The pain got so bad in the shoulder I ended up being hospitalized on Saturday where they diagnosed me with a blood clot in the right side of my neck. That hospital stay was way worse than any side effects from chemo – toughest three days of my life thus far.

I was discharged from the hospital Monday night and I worked from home Tuesday and Wednesday. I’ve been receiving blood thinner shots twice a day since I’ve been home. My dad had to get trained how to do it and he’s been my hero, being able to give me my shots each day.

I haven’t been alone since Saturday night. My mom was with me throughout the hospital stay, my dad stayed with me for two days, my brother spent the night with me last night (on his birthday, no less), so I’ve had a lot of help. I’ve got my mom and a girlfriend helping me this weekend through chemo and two girlfriends who are nurses who will also help administer the shots over the next week and a half. There’s a chance we will be done with the shots on Monday, so keep your fingers crossed my blood levels come back to where we can quit those. I think God is determined for me to overcome my fear of needles through this whole thing.

I know many of you have reached out to want to help, come see me, etc. Because these first two weeks were so rough, I haven’t felt good at all. I’ve needed constant help from family and close friends. My parents want me to have someone with me overnight each night until this blood clot dissolves. I hope once we get through this blood clot I will be open to having visitors. There will be plenty of time that I will want to have some company, but right now I’m not up for it as I’m just trying to focus and manage through all the symptoms being thrown at me. It amazes me how many medicines I’m taking to manage this process.

I didn’t have a chance to update you on one of my doctor’s appointment from last week. I saw my gynecological oncologist on Friday to learn more about my risk of developing ovarian cancer. He told me since I have tested positive for the BRCA-1 gene, I have a 40%-60% chance of developing ovarian cancer, depending on the study you look at. No good screening process exists for ovarian cancer. And while there is a 4 out of 5 survival rate for breast cancer, the survival rate for ovarian cancer is 1 out of 5, so all of those numbers and unknowns scared me. With all of information, I have made the decision to have the surgery to remove my ovaries and fallopian tubes next year in 2010.

I made this decision for the following reasons:
1) The percentages are too large and the screening process is not good and I don’t want to take any chances.
2) Even if my eggs do survive chemotherapy, I would want have to have my eggs genetics tested to make sure I do not pass down that gene.
3) The fact that I won’t be ready to attempt to conceive naturally by March of next year (as I have no idea who the father would be); I would be looking at an egg harvest to use my eggs at a later day. Harvesting eggs requires a large amount of hormones to be given to me during that process and medically, it isn’t in my best interest to be pumping more hormones into my body.

With my decision, here are my future reproductive options:
1) I don’t need my ovaries and uterus to carry a child, so I could carry one with a donor egg at later date – this is the least likely option to me as I’m not sure I want to put my body through a pregnancy after 40 (which is tougher on the body) especially since I would have spent the prior two years undergoing a massive amount of medical procedures/surgeries. I just think this might be too hard on my body too quickly after all is being done to it over the next two year.
2) Donor egg carried by surrogate.
3) Adoption.

The side effect of having my ovaries and fallopian tubes taken at such young age is it will put me into early menopause. Even worse is most menopause patients are given hormones to help manage their symptoms and I am not allowed to take any more hormones for the rest of my life. That will be another obstacle to overcome on the other side of this journey.

I just keep praying for some good news somewhere soon. I pray this chemo doesn’t affect my body too badly over the next week and that this blood clot heals as soon as possible – they say that is a two-three week process. I would love nothing more than to actually have a week in-between chemo appointments when I actually feel okay. I am really looking forward to the August 8 event and it would be so amazing to actually feel decent for a change. As bad as it’s been lately, I’m hoping it can only get better from here.

Thanks for keeping up with me.

Love,
Marcy