Monday, July 30, 2012

Needles and Popsicles

I chickened out last night...Kyle helped me mix my ovary stimulation meds for my first injection.  We made sure we did it just like the nurse showed us how.  We made sure the measurement of medication in the pen was correct and counted the clicks it made as I injected it into the vial of other medication...a double check to make sure I get the correct dosage of both prescriptions.  We then mixed that with some saline solution using a very long mixing needle and then switching it out with the smaller, much less intimidating injection needle. I took the needle and went to stick it in my belly and I just couldn't do it.  It's such a tiny needle, but I would get close to my skin and just freeze.  After what seemed like forever, but was probably only about a minute, I looked at Kyle and asked him to please do it for me.  I squeezed my eyes shut and waited to feel the sting...I laugh now because I honestly barely felt it.  When I opened my eyes Kyle had already injected half the medication; I felt little sheepish at that point. Tonight I had to do it all on my own and had no problem with the needle...there was no chickening out this time.  

It's still unbelievable to me that I'm really doing this. In a little over a week, I will hopefully have some little popsicles to wait in the freezer for me to be ready to put them back in my body to hopefully become little babies that I can hold in my arms and in my heart, that I can some day lament that they are growing up way too fast.  Even though I'm positive and kind of excited about the process, it's still nerve wracking.  I still wonder if it will really work and if it's really meant to be.  And it's still kind of weird to think about the fact that whatever kids that I have, hopefully, will get their start next week.  It's amazing how life works and how precious it is. It is a miracle indeed. 

Monday, July 23, 2012

My cousin gets married and my family meets "Shiloh"

Last weekend was a great weekend.  My cousin got married to a guy who makes her happy beyond words and most of my family got to meet my boyfriend.  It was a great ending to a week away from work.  Meleah was a beautiful bride and for a semi-outdoor wedding in a non-air conditioned location, I don't think she could have chosen a better day; especially this summer.  One of the highlights was a surprise for Meleah and most of the family.  My uncle who raised me and whom I call "Dad", who is Meleah's grandfather got up and danced with her while the DJ played "My Girl."  Although it was very brief and she was then handed off to each of her uncles  and a cousin, it was a poignant moment. He nearly died last December and after going through open heart surgery, he has worked very hard to recuperate and get himself back to being as healthy as he can be. To see him get up and dance with her without a cane and protest when his son Louie tried to cut in after all he has been through this year was priceless. 

My family also got to meet my boyfriend Kyle. He had met a couple of them before then, but for the majority, it was the first time he met them. My Dad who also has major hearing issues referred to him as "Shiloh" a couple weeks ago which made my mom nearly die laughing, so they both now refer to him as Shiloh.  I thought I would be nervous for them to meet him, but when we got there, I wasn't nervous at all.  I realized that as much as I love my family and as much as I love Kyle, I really didn't need them to love each other. Sure it would make my life easier if they did, but Kyle isn't a difficult person to like, so I figured most would like him, and if someone didn't like him, then they would just have to learn to deal with him anyway. He's down to earth, hard working, smart, nice, polite, has a good sense of humor, and treats me well; really I feel like a princess when I'm with him.   He makes me happy and supports me and is by my side no matter what we are facing.  My parents and the rest of my family seemed to like least after the initial meeting. The best thing my mom said to me that night was that she thought I looked happy and that she was so glad to see my smile come back. Considering my stress level can be sky high some days and I have a lot on my mind, I'm happy and have joy in my life and it shows. 

Tuesday, July 17, 2012

What to do, where to go??

It seems as though the last several months of my life have been filled with never ending decisions; none of which are easy.  I've wrestled for weeks about whether I wanted to harvest my eggs to freeze for the possibility of having children after I have the Mother of all Surgeries in September. I came out of my first appointment with my fertility specialist back in May thinking that of course I would do it why wouldn't I??  But it ended up not being so easy.  A lot of thought has gone into this decision.  It's a lot of money that I don't have, it's not a sure thing, it's risky, should I adopt instead? I don't have time to save the money, I don't have the time I want to be able to make the decision on my terms and on my timing.  But then no matter how  you have kids don't they kind of come when they want to?   

So I decided to at least apply for a grant with Livestrong called Fertile Hope.  It supplies most drugs required and there is also a discount for the procedure which will take the total cost from about $10,000 to $12,000 to about $7,000.  After applying on a Friday, I got news on a Monday that I had been approved.  Great! Except why wasn't I super excited??  I was hoping that if I got it, that would be my answer.  It would make my decision for me and I wouldn't have to think about it anymore.  But all it meant was more choices I had to make.  Why can't something with all this be easy...just one thing please??  Pretty please?  After thinking about it for about another week, and another couple days in near tears, I decided that I would go forward with the egg retrieval. I knew that I didn't want to leave anything undone.  I may not end up being able to have a successful IVF cycle a year or two from now, but I didn't want to regret not doing it and not having any recourse.  I still didn't have the money, but I knew that with the help of family and friends, I would find a way to afford it and make it happen. So now I get to go on hormones to mature as many eggs as possible and hopefully in about 3 weeks they will go in and harvest them and they will be good enough quality to survive freezing and eventual thawing. 

Back in January, Kyle and I had planned to go to Cancun with a group of friends this week.  Because of everything going on, we ultimately decided not to book it. It was very disappointing, I was really looking forward to spending time with Kyle and our friends. But, who knew what we were  looking at and who knew what and when the treatment would be. We decided we would go to Keuka Lake in New York State to at least get away even if it was just a couple days.  But it's funny how things change.  A cycle to retrieve eggs has precise timing and one of my preliminary appointments was scheduled for this week.  About two weeks ago I got the news from my primary doctor that they found protein in my urine and that I had to do a 24 hour urine test.  Unfortunately, the nurse called this week and  the lab didn't do the correct test so I have to repeat the test.  With everything going on with me and my body, we decided that instead of sun and beach in either Mexico or upstate New York, I'm catching up on sleep and using my gift cards to the spa here in Cincinnati.  I thought I would be disappointed to once again have a vacation canceled due to health issues, but I'm not really, I'm actually relieved.   I'm kind of glad I'm not going anywhere.  I'm happy to have time at home to just be and maybe get a massage or get my nails done. 

So I've got about 7 1/2 weeks before I take time off work and have surgery to scrape all the snot out of my belly and probably take out a couple organs.  I'm sure I will be faced with more decisions before then, but I'm really hoping that it's more along the lines of what dress to wear to my cousin's wedding this weekend or to my friend Lauren's in August, rather than how I want to have kids or what I'm going to do about the next health issue they uncover between now and then. 

Sunday, July 8, 2012

It is the best of times; it is the worst of times, and it's a long blog post

The last year has been tough. It's been more than tough. When I sit and think about what I was doing this time last year and what has happened in my life since then, the choices I've been faced with, and the paths I've chosen, it's really quite remarkable I'm not in the looney bin. Yet I can't help but think that despite everything, I have a lot to be thankful for, a lot to find joy in, and I'm happy.  Honestly as I sit here wondering how to even begin to put how I'm feeling into words, and think about the last year, it's kind of ridiculous. Let's see how brief I can make this, in the last year my sister died, I started divorce proceedings, I started a new job that was great but then wasn't, my dad nearly died, I met a great guy, got another new job that was great and is still great, had my yearly ultrasound to check for ovarian cancer which turned out not to be so routine and began a saga that eventually led to a diagnosis of PMP or pseudomyxoma perotonei, fancy words for abnormal cells that spit out mucous in your abdomen and may or may not be cancerous, but nonetheless will not stop growing so is fatal unless you do something about it.Some doctors will even call the benign form, which is what my current diagnosis is, a carcinoma because of it's behavior. The cells don't have a "stop growing switch."   This diagnosis has already changed my life in a profound way and will surely change it in ways I haven't yet imagined. 

I had a routine ultrasound in March which turned out not to be so routine. I knew something was off when the tech got really quiet and stopped making small talk. They found fluid in my pelvic area, which can be normal, but after a second ultrasound and it was still there, I had to have a CT scan.  the CT scan still didn't explain it so my gynecologist brought in a gynecological oncologist to consult and go in laparascopically to investigate. Turns out I had a tumor in my appendix that was spitting out snotballs, funny word for a very unfunny issue. However, my ovaries looked ok. So no ovarian cancer it seemed, but now what??  Colonoscopy turned out fine...well except for the whole waking up during it thing which honestly wasn't that bad, they just put me back to sleep.  The prep for it was much much worse. I'm up to 3 doctors at this point and next up is the general surgeon who will take on what was going on with the appendix.  Kyle went to that appointment with me...thank goodness.  Here's a tip: when you have something serious going on with you medically NEVER go to an appointment alone even if you think it's minor.  You won't remember half of everything because you are stressed out and nervous or you will get stuck on one thing and forget to ask questions. Gen Surg said I was looking at one of three things.  A. it's completely nothing, it's just weird fluid and there are no abnormal cells.  In that case I can go on with my normal life and they will just take out the appendix and be done with it.  B. It's somewhere in the middle.  There are some odd cells that will continue to pump out snot and attach themselves to organs and cause trouble, but not enter organs, the blood stream or lymphatic system.  Remove appendix, resection colon, most likely do a chemo treatment to kill anything left and there you are. Or C. Really bad situation where there are cancerous cells throughout my abdomen in which case the doctor may or may not want to do anything depending on how wide spread it is.  His hope and what I could tell he thought it was was B.  

So after the second lap surgery, the surgeon said things didn't look too bad and that we just had to wait to get the pathology report. Oh and even though it was laparascopic, it was still hell to try to sit up and then sit back down for the next couple days.  Thank god for narcotics when you legitimately need them. While all this is going on, I'm thinking what the hell just happened.  Three months ago everything was fine.  I have a great guy who treats me like a princess, my ex is as easy as possible to deal with through a divorce, I have a great job that I love and is rewarding.  Then suddenly I'm looking at a possible cancer diagnosis, I have 5 doctors who I'm working with.  One of which is a fertility specialist because all this stuff going on inside me has a real possibility of majorly affecting my fertility. I'm hoping and praying that option A is what is going on and I can go on with my life and have everything be easy.  I can finish up my divorce, move on with Kyle, have babies and live happily ever after. But there is a nagging feeling that it won't be easy and I won't get my happily ever after.  The initial path report came back negative, no malignancy found and I rejoiced things WERE going to be easy and I was just being a negative nelly. Then I went to my follow up appointment by myself...again NEVER EVER do that...I was thinking Gen Surg would look at my incisions and send me on my way. Except he didn't. In the final path report, in the very tip of the appendix they had found a few abnormal cells that produce mucous and because my appendix had ruptured because the tumor had gotten too large, it had pumped out all kinds of those mucous producing cells. Option B it was, so I was off to another oncologist who specialized in this sort of thing.  I found out later that I am lucky to live in Cincinnati.  What I have is very rare and not many doctors treat it.  There happen to be two in Cincinnati who do this kind of treatment so at least I don't have to travel for treatment. 

So Kyle and I get in to see the chief of Surgical Oncology at University Hospital to see what exactly all this means and to talk about the surgery.  I'm not sure what I expected at this appointment, but it sure as hell wasn't what I ended up hearing.  I had not done too much research online yet because when I first started looking what I saw scared me and I didn't want to get too far into it until I knew what I was really dealing with.  Why borrow problems?  We met with the nurse first.  She is the main contact and started off by letting me know that what I had is PMP and that the treatment is surgery to go in and remove the snot balls (my word, not hers) and anything affected by it, most likely resectioning the colon and removing lymph nodes, then they do a heated chemo treatment in the abdomen and leave it there for about an hour and a half, rinse it out, then sew you back up. It's usually a 10 to 12 hour surgery. Then you have at least a night in ICU, depending on recovery and when there is a bed that opens up on the floor that they want you to stay on (she said which floor, but since I don't know University Hospital, it didn't mean anything to me). There is a 10 day hospital stay at minimum, but probably two weeks. She also said that it was unlikely that I would return back to work full time for three months. WTF??? To say I was in shock and ready to throw up and had ice in my veins at this point is an understatement.  And this was just the meeting with the nurse.  

Next up was the actual surgeon what was he going to tell me?  All he added to the convo was the history of the treatment, what it was called (cytoreduction with HIPEC), and details of the surgery.  Again, take out all snotballs, most likely resection the colon, take out lymph nodes, probably remove the gall bladder, possibly the spleen, scrape off any organs that can't be removed but are involved in the disease. Do the heated chemo for at least an hour and a half, rinse me out and sew me back up. Side effects are numerous, but not the usual side effects you think of from chemo.  I shouldn't lose my hair, I shouldn't be sick for a long period of time...well at least not from the chemo. I could and probably will have digestive issues for a while that may or may not ever go back to "normal."  But then there was the discussion that I really didn't want to have and really didn't want to hear or deal with.  If the disease involves my ovaries, he will take them out during the surgery.  Even if he doesn't, they will be taking a hot chemo bath which will most likely diminish if not completely eliminate my fertility.  And because of my BRCA 1 gene positive diagnosis, it would probably be best to take the ovaries out while he's in there regardless of involvement with the disease. So what about those babies that I want??  He recommended I talk to my fertility specialist about options but he couldn't really say what affect the chemo would have because there aren't a whole lot of women who have this who are as young as I am or whose ovaries are not involved in the disease. 

Since the nurse said it would be at least 6 weeks before they could schedule the surgery because first they would have to get approval from my insurance, and second they have to make sure an OR is available for the entire day...great another reminder of how freaking serious this crap is...I asked if I could postpone it until September.  That would give me time to enjoy the summer, go to some weddings, get things settled at work and time to figure out and come to terms with what I would do about having kids. I now have a date for the surgery, September 7th, only 2 months away. I spent weeks soul searching and researching my options for children.  Is adoption the answer?  Is freezing my eggs the answer?  Both options are expensive and neither option is a sure thing. Now I have 2 months to figure out if I will freeze my eggs. One thing I know is that I didn't want to go into this surgery with anything hanging out there and I didn't want any regrets or thoughts of shoulda, coulda, woulda.

 I have to admit I have good days and bad days.  Sometimes my mind is in a place where I can't think of anything except PMP and the Mother of all Surgeries, and whether and how I will ever be a mommy.  I try to put up a good front that nothing is really getting to me, but some days I'm on the verge of tears all day and nothing feels right.  Everything sucks and why the hell is this happening to me?  I've been through enough right?  Why do I have to have a "biological car crash" going on in my body??  But then I look at what I do have that's positive and I find joy in the little things. And I'm not saying this to avoid being realistic about what's going on, because it's serious and there aren't a whole lot of positives about the medical stuff.  I can't help but think that when you are faced with this kind of crap in life, sometimes there are things that seem to fall into place that work to help you face it. My job is great, I have wonderful co-workers who stop me every time I try to talk about being sorry for missing work for appointments or for the surgery.  "Don't worry about us, take care of yourself."  My health insurance is almost written for something like this happening.  If I had stayed at either of my previous jobs, I would not have been in such good shape as far as taking the time off or insurance. The man in my life loves me for who I am and would give me anything he possibly could. I love the time with him and his son.  They bring me joy every day. Kyle is there to hold me when I break down and cry and supports me the way I need support.  His priority is my happiness and making me smile. When I went out with him the first time around Thanksgiving last year, I surely didn't think it would lead to loving him the way I do.  My family is there the way they are always there. My friends the same...they are there to rage against the unfairness of it all and they are there to bring good times and fun when I need a break from it all.  

So in spite of the fear, the anger and frustration, the nerves and anxiety, my life is good.  It's still an adventure and all adventures come with dark valleys and shadows.  It's how you get through those valleys and dark places in life that makes the bright spaces in life all the brighter and life worth living.  Even when you can't hold the light up for yourself, you only have to look to those who love you and they will gladly light the way and face the shadows with you.  OK...that's a little melodramatic, but I reserve the right to be a little melodramatic right now. Life sucks, shit happens, nothing is certain but taxes and death and all that garbage. I refuse to live my life in that place. You choose to be happy, it doesn't just happen.  With all the transition and upheaval in my life right now, the direction I choose is the direction that makes me happy.  I have too much to make me sad and angry, why hold onto that?  All I can do is move forward with the confidence that in the end it will be ok and if it's not, then it will still be ok.