This post will be a bit different. It's purpose to me is to record the experiences that were not good. They will serve to me as a reminder of what I've been through; yet I can always close the page and leave them. I do not want pity or anything like that to come of this post, but just the realization of how precious health is and how sometimes it's a struggle to keep it. I figure the truth of being ill is good to know. I try not to dwell on these things, so I usually give just the basics in the past. Here is the more emotional side of the story I guess you could say, including my weakest moments. I feel cancer is more an emotional battle than physical, and this post will probably explain why.
* One of the hardest decisions I had to make at the beginning of this whole experience was about my fertility. Chemotherapy usually destroys it and so I had to make a decision about my options. I first went to a local fertility specialist, which was hard. There were pictures of children all over the walls that they helped conceive and the waiting room was full of couples. I was there with my parents. It is hard to think of something like this so soon, since getting pregnant usually was far from my mind--more of a fear. Suddenly it became the one thing I wanted. The doctor basically told me I had no chance of my fertility coming back. There are options of egg retrieval, but they require high doses of estrogen, the exact thing feeding my cancer. I left that office and cried. Cancer just doesn't take away your well being, but makes future decisions for you, which you can barely control.
Then my savior of an oncologist told me that he thought I had a chance. So he was going to do two things, get me in contact with some great fertility specialists and also find out the real percentage of my fertility coming back. The new fertility specialists were actually from U of M, and they told me I had options: nothing, egg freezing, and embryo freezing. I had a very long discussion with them over the phone concerning everything from the medications involved to a time line and cost. It turns out that if I wanted to I could harvest my eggs, which does indeed take huge doses of estrogen, but in fact it is not known whether it would feed the cancer or not--the doctors at U of M are split right down the board on it I was told. It would be my own decision and possible risk. Egg harvesting also takes time, about four to six weeks, usually on the latter side. This would delay chemo for that amount of time, time that my doctor thought I shouldn't waste--although he did say that he would support whatever decision I made. Now freezing eggs and actually creating a viable embryo later that implants, technially has not worked very well in reality--very high failure rate as most eggs are lost in the freezing process alone. Embryos freeze much better. Luckily I am engaged and have Doug as a donor, which would be funny because then we would have conceived children without having done the deed so to speak, since we're waiting till we get married to do that. But anyways, embryos carry many ramifications, cost and disposal. The cost of getting to that point alone is over $10,000, not including yearly storing fees and the cost of implantation. Insurance does not cover any of these costs. Plus, usually more embryos than one would want in children happens, you might have 30 embryos on ice, but that doesn't mean you'll have 30 kids! So what do you do with the ones left over? When they're your own, it's a different situation. Lastly, the success of embryos ranges from 30-50% I think, or something around there. So after all this trouble and time, it still might not work. My doctor consulted another specialist in chemotherapy effects on fertility at the Cleveland Clinic and she said the chance of my fertility coming back is 40-70%!! A number U of M specialists also agreed to. So after weighing my future and my future children, along with the advice of Doug, we decided to give fate a chance and did not harvest any eggs. As Doug and my family agreed, they didn't want to risk my life in the hopes of possibly making another.
So right now I do not know if I'll be able to get pregnant with my own eggs. Chemotherapy puts one into menopause, shutting down the ovaries. My period stopped this past April, and tomorrow I start hormone treatment that will also quiet my ovaries (but not damage them), for the next five years. So November 9th in 2011 I'll be able to start going away from the ovarian suppression and hopefully the following year will let my fertility come back too. Till then I hope and pray for the opportunity to be a mom to a biological child; if not I might be able to borrow some of my sisters' eggs and try that way, or adopt.
So it's hard to see little babies, because after Doug and I were supposed to be married, I wanted to try for children a year after. But unfortunately I cannot. This hurts a part of me that is my motherly instinct, the desire to be a mom.
* Chemotherapy not only hurts your ovaries, but also messes with the hormones they produce. That is why I'm in menopause, and it also wreaks havoc with the emotions. I wasn't myself emotionally for a long time. The idea of death is strong. It didn't help that in the middle of chemo I lost a past coworker to cancer, she was 24. They caught it too late and she passed two weeks later. I know that I could have been that close. It was by chance that I had been re-evaluated, and it might not have taken long for it to spread further. Once cancer spreads beyond the lymphatics and settles in organs and bones, it is only a matter of time until you pass from it. Granted the drugs these days extend the life of people in this situation, to sometimes 10 to 20 years, but that would mean I'd only be in my 30's or 40's--I cannot let that ever happen. It is my goal to live and grow very old. I used to be afraid of growing old, but now I look forward to it, because that means I have LIVED for that long. Death is a fear that is amplified with a cancer diagnosis. I know that I am lucky, my cancer was caught early, but I fear it coming back and taking me away. It is not the act of dying that grips me, but the thought of leaving Doug, that is my greatest fear of all. He is my reason for living, he really is. I want to be the one who he has kids with, who he grows old with, he is the one I want to spend eternity with.
Needless to say these thoughts are hard on the emotions, especially at night. During the day I can deal with cancer, but at night I am my weakest. I used to cry every night, wanting to change all that I couldn't. Luckily the support of Doug and my family has put many things into perspective, and Effexor has made me feel like myself again.
* I also lost my dignity a few times during treatment. Let me back up a bit and state that I also had to make a decision on what type of surgery I was to have. I had two days to decide between a lumpectomy and a mastectomy. I originally said try for a lumpectomy and then if that doesn't work then mastectomy. I had a serious discussion with my mom and Doug, and they both said take it all off. My mom also reminded me that that is probably what saved my grandmother's life when she had breast cancer at 37. So I then decided to have the mastectomy, which was approved of quite well by my doctor. I had it, and currently have a scar about 8 inches long across my chest. Later I found out that chances of recurrence are higher in those with lumpectomy; and lumpectomy always requires radiation which makes it impossible to ever breast feed from that breast and it also shrinks it. I also found out that the cancer had spread to the nipple, so they would have had to remove that too, so in essence I feel I made the right decision. Now back to the dignity part, or the loss thereof. It was fine for awhile after surgery, as I think I was in denial for the most part, but then it hit, I'm missing a breast. Not only is it part of my body, but also a part of my identity as a woman. I couldn't look at magazines because everyone one in them had a pair, and going outside I saw every women out there with a pair. So my mom, who has a sixth sense for what I need in life, took me to a shop for women just like me, in need of a prosthesis. Granted it was embarrassing getting fitted for a mastectomy bra and picking out the shape, weight, and feel of a prosthetic--hence the loss of dignity; what I wished I had been doing was getting a fitting for my bridal gown...but it felt surprisingly good to walk out of the store looking normal again.
As just as an aside, that was another thing that surprised me about cancer. Normal, healthy looking people have cancer. There isn't a look or anything that points out--cancer patient! But most people don't lose their hair during chemo and look pretty average. Some do lose hair and look quite ill, but most you cannot tell.
Anyways, back to loss of dignity. Again I lost it for a common but unmentionable side effect of chemo. Let's just say I had to see a Colorectal surgeon for it and the examination was very painful. To top it off, I had job shadowed the surgeon when he was a resident and I was in high school. Gotta love cancer!
* There is a certain innocence everyone has and no one knows they have it until they lose it with cancer. It is the innocence of knowing and expecting and trusting your body. It is the ability to teach it and mold it and know how far you can push it. Cancer takes away that knowledge, throws you into the vast unknown. No longer can I push my body till it breaks, it's broken. I have to watch how I push it so I don't go too far. I have to give it more time to rest and know that if I do everything right, it still might not be enough to keep cancer at bay. I don't know what to expect from it anymore. Most simply, I've lost all my hair, even my arm hair! Most complexly, I've had to remove body parts to make sure I don't destroy myself. I will never be back to where I was or how I used to be. I've changed physically and emotionally, and I've created a new normal to live by. I've accepted this, but it was a roller coaster of a ride to take. To say the least I will be more empathetic towards my patients and now my mind is open to many things closed before. If I could take it all back though, I would. I wouldn't wish my situation on my worst enemy (whoever that is!).
For a long time I was asking why. Why me. Why now. Why this type of cancer. I have always tried to be healthy, with working out, not smoking and not drinking. Sometimes I even tried to eat healthy. I was in perfect shape, having just run the Chicago Marathon and loving the fit me. I do not smoke and never will, so I've avoided lung cancer there. I've even drank only once in my life! Sure I've had a sip now and then when I younger of my parents' wine; but I'm proud to say I've never been a drinker. How could I do that to myself anyways? Drinking pretty much feeds breast cancer too. I've done everything to keep cancer at bay! I love health and as a future doctor someday I believe in practicing what you preach, so I was always out to better my health. Yet, here I am.
As for why now, I have some ideas. But if I'm destined to have cancer, how come I couldn't be sixty like the majority of breast cancer patients are? How come I can't even be my grandmother's age, 37? At least I could have had kids by then and have breast fed them and chopping off my breasts would not be as hard then. I could think of a million different times to have it, but not now, when I'm supposed to have the best year of my life: getting married and going to med school.
Lastly, why breast cancer? Why did I have to have this cancer and not some other cancer? There are some other cancers out there that would allow me to harvest eggs without threatening my life in the process; there are cancers out there that allow for remission after chemo--I will never have that because it doesn't work that way with breast cancer. There are some cancers that I probably wouldn't need chemo for, or if I do, that is the only treatment I need. Instead I have breast cancer, and I've been told that I will know that the chemo, radiation and hormone therapy will have worked when I die of something else when I'm old. This is not to slight the fact that there are other cancers out there far worse than breast cancer; so I am thankful I do not have any of those. Also, why stage IIB? Stage I usually just means surgery and hormone therapy, no chemo. I was one lymph node away from stage III, which has a 50% survival rate...just way too close. I thank God though that it never spread further than that. My heart goes out to those who are fighting harder battles. I hope to never get to that point.
So after all the 'why' questions, I realize I cannot change where I'm at, this is what I've got. I've quit feeling sorry for myself and have moved on. I've accepted my place. Now I want to use it to reach those who will need me someday, my future patients. I want to let them know that I understand where they are coming from and that I will be in on this fight with them always.
* Earlier I mentioned I have some idea of why I have breast cancer. First off, even though the genetic tests have come back negative, I might have some unknown mutation in there that has been inherited. Secondly, I was on birth control pills, for ovarian cysts and polycystic ovary syndrome, for years. I think this may have caused it, or at least sped up it's growth. It just so happens a study by the Mayo Clinic shows that oral contraceptives probably cause cancer, and they are labeled a Class 1 carcinogen! Class 1 carcinogens include things like asbestos, tobacco, and alcohol! So taking the pill is kind of like smoking a cigarette! Here is the paper:
Mayo Article. I think I put myself in my own hole. There are so many things I would do if I could go back in time. I would never have taken the pill and would have pushed the doctors for more tests. Two years ago I knew about the lump, but I never had a biopsy till this year. But then again, these are the cards I'm dealt, and I cannot dwell on the past, it won't change anything anyways. Same goes for fears of recurrence, I cannot do anything but stop worrying. I want to know I have done all I can now, no regrets. So that if it does come back, at least I can be reassured I tried my hardest the first time through.
Sorry if this post has been a downer. I just feel some of the above had to be said and told.
On the bright side I will be having reconstructive surgery in the spring. I'll be having a procedure known as the
GAP Flap. They're going to actually take fat from my butt and make a new breast! They do not do this procedure in Michigan; the south is actually the place to go to get it done. So I'm looking into one place in particular right now, they're in New Orleans actually. I'll keep you updated on that process as it changes.
