LOST.


Up until now, I think I’ve been chugging along pretty well. Everything has FINALLY hit me…and all at once. I’ve never been one to be depressed. Anxious, sure….I’m type A after all…..but depressed, not so much. As mentioned in my very first blog post, I often use humor as a way to not make an uncomfortable situation feel more comfortable for both others, and for myself. I’ve never really been very good about opening up; sharing with others how I really FEEL. I have met with a plethora of social workers and counselors, and just can’t seem to click with any of them enough to really open up. This is totally going to sound judgey, but the most recent counselors at Seidman, albeit super nice, I couldn’t help but laugh every time she spoke. The counselor, (a woman about 35 years of age), talked like she sucked in helium just before coming in. I’m sorry but that’s just laughable. I imagine elderly people with high frequency hearing loss can’t hear her at all. I decided if there is any place I can really open up……it’s here. Here goes nothing.

I had two miscarriages before finding out I had cancer. One was very very early on, and the other, as previously mentioned was two months in, after trying for over a year to conceive. I have poly cystic ovarian syndrome–something genetically handed down–which I’ve had for many years, and makes it hard to conceive. I never really appreciated what a miracle Mack really is, and don’t get me wrong…we are SOOOO blessed to have him. But there is something about being a woman and knowing that you physically are unable to have any more children. As it was mentioned before, my doctors have stopped my periods throughout my chemo. The reason in doing this is actually to help preserve my eggs, by not allowing them to drop–keeping them protected by my ovaries while my body is being shot up with an insane about of toxic chemicals. But because my periods are being forced to stop, I’ve been going through menopause…at age 31. There is really only a 50/50 shot that my periods will restart, and even then, as my doctor and I were discussing the other day, my uterus is likely too hostile of an environment now to carry a baby. I guess I just sort of put this out of my mind for so long–like out of sight out of mind type of thing–but not being able to give Mack a sibling is hard. Yes there is adoption, which I would love to do…or a surrogate—however I’m not quite sure who I could find to do something like that, seeing as though no woman in her right mind would want any kind of anything from this cancer-ridden bod of mine! But, it’s really hard to get Derek on board with adoption. He always says maybe it was meant to be that we only had one. And maybe he’s right. But I think there is something else: Women have this innate feeling of nurturing. For men, I think that feeling of nurturing and having a child–that connection comes more when its THIER child. And so I think that D is maybe afraid that he won’t have the same feelings that he has for Mack…..and it’s not like we can bring the baby back. It’s not a pair of shoes or a sweater. And all of this I understand. It’s still just hard. Additionally, when my sister went through her chemo the first time, her team of doctors didn’t think she would be able to have children either. But they were wrong. She restarted her periods, and got pregnant with twins naturally! However while she was pregnant, she developed cancer again. I spoke with a few of my doctors about this at length–whether there have been studies conducted to know whether the hormonal change from a pregnancy can cause someone to relapse. She said that studies have been done, but the results are inconclusive. Basically there is no way to know for sure. So then I think…….if I could have more…….is it really worth it??

On top of this, there is the issue of sex. One of the drugs that I’ve received has caused the lining of my cervix to thin so much, and I am physically unable to have sex. I don’t know how to describe it except that it would be equivalent to taking a sharp knife to a piece of driftwood, and cutting into it. The word pain doesn’t even describe it. Unfortunately, again, there is a chance that this problem may stick with me for years to come. I realize this is TMI, but I have NEVER in my life felt like less of a woman as I do now. I mean I’m bald, I can’t have children, I can’t have sex…..what is left? My husband is the most amazing man in the whole world, he really is. He loves me so much, and I know that. He worries about me every day, and is extremely protective. He is everything that I had ever hoped for in a husband (even though he is personality-wise, the complete opposite of me!…total introvert!)…I just really wish I could be the wife he deserves to have. I’m quite certain that only a year ago when we exchanged our wedding vows, and we got to the “through sickness and health” part…..neither of us expected it to come into play this soon.

I found out some “good” news yesterday during my chemo session. I only have 4 treatments left, and then…I’m DONE. I put “good” in quotes because I have complete mixed feelings about this. There was nothing new that came with this news….my oncologist told me at the beginning of this whole process that I would have 6-8 cycles, depending on my progress (one cycle is two sessions, so either 12 or 16). I guess I just decided to focus on having 8 cycles so that I wouldn’t be disappointed (again), that I didn’t pay attention when she told me it would only be 12! That being said….I. AM. TERRIFIED. What happens after chemo? I mean I didn’t have symptoms to begin with, so how will I know if my cancer comes back (other than scans). Right now, I feel somewhat protected by the fact that I get to see a team of doctors on a regular basis to assess where I’m at. They can tell me if anything I’m experiencing is a sign of cancer, and follow up for things like my brain cancer scare, or my weirdo lung disease, that no one really seems to know what it is exactly. For the rest of my life, I will have scans. And every time I have one, I will hold my breath, 100% fearful of the results. Just knowing that……..I mean…..that’s really hard to get past. On top of that….the relapse rate is very high. Someone in a Facebook chat room that I joined for my type of cancer told me….it’s hard to DIE from this type of cancer, even in advanced stages, unless you had health problems to begin with. Obviously, anything is possible, but she said that this type/stage of cancer is more something that you will have to live with for the rest of your life. She had relapsed 3 times. Knowing how sick I was/am…….Knowing how painful this is both physically and mentally…..I wonder if I could ever be strong enough to go through this again. To put my family through this again. One of the scariest things in my life was when my sister had a stem cell transplant to save her life. To put my parents, my husband and son through that? I just can’t imagine. Dealing with the possibility of dying…again? I actually can’t hold back the tears from typing this right now.

My friend Kris had about a month of being cancer free, and her cancer returned to two major internal organs. She could really use your prayers. My neighbor John has been on hospice care for about 3 weeks now. He has been suffering from multiple myeloma for over a year. His brother told me yesterday that he is afraid to die. When he told me that, I just lost it. Both Kris and John—well I would consider them much better people than me. They are true believers in their faith, whereas I constantly doubt and am skeptical. They never judge, they both eat healthier than I ever have or ever could; they are constantly doing more for others than for themselves. And I can’t help but think why is this happening to them? Why do I deserve to live/get better and they don’t? Or maybe I won’t because I am the person I am!…a doubter, I totally judge for a good laugh….I love reality TV, wine, and French fries. I’m not sure what this is called? Survivor’s guilt maybe? The weird thing is that I’m not a survivor. I’m still fighting this battle, and I’m so scared. Knowing what Kris’ family–her wonderfully devoted husband–her children–her parents–Kris herself–must be going through, and the same with John—I feel awful to be happy when I am feeling better. I feel like I just don’t deserve it.

Lastly (at least in this post), I spoke with Mack’s pediatrician about what’s happening with me. He wants Mack to have routine blood work to check for blood cancer every 3 months until he is 7 years old. If ANYTHING shows up unusual, he will have a PET scan. All of this is because my cancer, is normally a pretty slow moving cancer. Not to mention, getting to stage 4b….well I probably had it for quite a long time without knowing. Which would mean, that it is very likely that I had the cancer while I was pregnant with Mack. I know this is all a good thing–the blood work, and the regular exams–but honestly, I could NEVER forgive myself if he ever got sick. I know it’s not my fault that I have cancer, or that I didn’t know…..but to have to see him go through this? I am not that strong.

I wish I could say that my faith is strong, and that praying helps. But for me, for some reason, I just feel completely lost. I was born and raised Catholic, and there was a time in my life, where I was so devoted that prayer alone could make me feel better…protected. I have lost that, and I’m not sure why. I suppose it’s all the above—Its people like Kris, like John, and the countless others who I’ve met through this process who simply don’t deserve what’s happening to them. It didn’t help that many Catholic churches turned their backs on Derek and I for having a baby out of wedlock…..For wanting my Uncle Nick to marry us, rather than getting married in a church, which apparently wasn’t “deemed valid” in the eyes of the church……unless we paid $200 we were told. ??? I don’t know what it is, but I wish I had that feeling back. I wish I could feel like, if I do die, there is a better life out there for me. That it’s not scary…..it’s a feeling of peace.

I am lucky that I have friends in my life who I can always talk to about how I’m feeling, and they don’t just listen, but they offer sound advice. I often mention my “fake family”–people I’ve known since I was born–but they aren’t my “fake family”, really. They ARE my family. And for that, I am lucky to not have to fight this battle alone.

OK…I feel like it should be time for some good things now:

1) I had round #8 of chemo on Weds. I really only felt sick Weds and Thursday, which is better than the last round. Today I started having the usual jaw and ear pain, but I hopefully headed it off at the pass by taking some pain meds right away. We’ll see how it goes. During my physical exam with my doc on Weds, it was the first time since this whole process began that they couldn’t feel my spleen at all! Total progress! Also, although my white cells are still collectively less than 1, my platelet count has nearly doubled, which means that my bone marrow is producing lots of healthy cells, and my spleen is finally shrinking enough to not eat them up! whoop!

2) Yesterday it was beautiful outside. Although I still felt totally sick to my stomach, and dizzy, I just HAD to get out. It helped that Mack was totally bugging me about taking him for a walk. So I made it nearly a mile before dry heaving in a ditch, BUT I totally didn’t puke, which I thought was pretty sweet. I should mention that in the brief 15 minutes that I was not in the shade, and even though I had sunscreen on, my cheeks and chest are totally red. But damn, to have a little color again? Well I’ll take that for sure.

3) I’ve been wearing head scarves lately because they’re much cooler in this weather. My hair is totally growing back, but it’s in weird long patches. The weird/sucky part is that I had kept my eyebrows and lashes this whole time–until the week I had to wait for chemo. I woke up one day, and they were all over my pillow. I have to laugh at this because I look completely bizarre without them…..I’m quite used to my bald head by now, but my face is going to take some getting used to!

4) I really want to thank the Euclid FOP. They have been donating money to us when they can, and I can’t thank you guys enough. It is such a huge help for us right now, and your generosity is amazing. It’s wonderful to know how loyal the boys in blue are to each other, and to each other’s families.

*Acknowledgements: I wanted to also say the following about my “fake” family girls who I get to see and talk to on a regular basis:
*My “cousin” Michelle has completed her graduate program at Columbia University. Her graduation is just before Memorial Day weekend. To say that I’m so proud of her is the understatement of the year. She is destined to do amazing things for the City of Cleveland, and I love to brag that she is a Columbia grad.
*My “cousin” Karen, an NYU grad, just put together an amazing event with Nancy Pelosi as the main speaker at the Intercontinental Hotel. I mean, really? Please remember me when you become President of the United States.
*My “cousin” Samantha, a Dayton grad, has been doing wonderful things with the American Cancer Society. She believes whole heartedly in what she does, and is soooo good at it. We are all participating in Relay for Life in Chardon on June 15th, with her and her mom spear-heading the event. Thank you for your continuing support–for the research, for the survivors, and for the warriors.
*My “cousin” Becky. What can I say? Becky has helped me with my diet–how to eat healthy so I can beat this cancer. More than that, she has been my shoulder to lean on, and has offered great advice. She is never afraid to tell it like it is, and to remind me of all the good in my life.
*My “cousin” Barb. Barb is my laughter–the best medicine. It’s funny. We didn’t grow up together, but it feels like we did. She is married to my “cousin” Matt. Barb and I are opposites in many ways, but we click. I miss her when she’s not around. Her car looks like an echto-cooler.

*(This is not in any way to discount my “cousins” Mike, his fiancée Jess, or Pete and Matt. I don’t get to see them quite as often, but I know if I did, they would all do their very best to take my mind off of everything going on–to put me in my place when I need it–and to make me feel better. I’m super excited to see Mike get married, as he has been the other pea in my pod since 1982. But specifically, I wanted to thank these girls. They have stayed at our house to take care of Mack and both dogs during the numerous times I’ve been in the hospital. When I’m feeling bad, they have come to my side. Every Monday, we have dinner together and watch trash TV. It’s totally the NORMAL in my life. Even if I’m wearing a mask or nearly barfing, they are still here. They are not fake family to me, and they never have been.

I would also like to acknowledge my REAL family. I know that this whole ordeal has been very hard on both of my parents. To have not just one daughter go through all of this, but TWO….well I can’t imagine that heartache. I just want you to know, and to realize that this is NOT your fault. This is just something bad that happened. And I like to think that amidst all of this bad….only good things will come from here on out. I love you very much.

How about this sappy post?!!! Oy.

I totally tried to upload some pics from the past 2 weeks, but I will have to do that later. My computer isn’t letting me right now. I think my computer must be feeling as overwhelmed as I am! Thanks for letting me vent. I mean if you can’t share your feelings with one person, why not just share them with hundreds?!

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