Sunday, December 19, 2010
Last night I went to a birthday party where I saw a lot of people that I haven't seen in a while and it was good to catch up, but the inevitable question, "How have you been? How are you?" hung in the air for me. Several people commented on how much weight I had lost and it's a comment 2 years ago that I would have loved and taken as a compliment but considering how I got here, I feel awkward acknowledging it. I realized later I could blame my weight loss on a wedding diet, which ironically I would totally be on if I never had been diagnosed with cancer, striving to reach the weight where I am now. But I feel odd celebrating my figure when I got it in such an undesirable way.
And then I never know how much people know. I've been very private about my situation from the beginning (yes, even though I have a blog!). I suppose it partly comes from the shame of feeling that somehow I went wrong in life. I did something bad or wrong to deserve cancer. I know that Hodgkin's isn't the kind of cancer you get because you did something "wrong" (i.e., didn't exercise, smoke, eat bad), but it doesn't stop me from feeling like somehow, someway I brought this on myself. So I've been ashamed to tell people that I have cancer, that I was an unlucky person to get an awful disease, I almost feel like I got an STD or something, a shameful disease that I don't want anyone to know about. As a result, not everyone at my job knows, there's a fine line between who knows and who doesn't. All of my close friends know, but only some acquaintances know and sometimes I can't be sure if one friend has told another. A few times last night, I saw people who said it was really good to see me, and then I became paranoid that they knew what was going on because they had been told by someone or they just were honestly really happy to see me! Such a strange situation. I had hoped to come out of this journey with only a few people knowing, but as my journey has gotten longer, the circle of those who know has grown and that's not a bad thing because I need all the positive energy and prayers I can get, it just makes it strange when you're at a party and someone asks, "How are you?". So I can't wait for the day when I can honestly say, "Life is good, can't complain!"
Thursday, December 2, 2010
I tried to convince myself that it would be ok, after all I had read so many stories of women who went through chemo, lost their hair and wore their bald heads proudly. I began to notice a lot of women (esp black women) walking around with extremely short hair cuts, almost bald. I was shocked at how easily these women walked down the street with little to no hair and I couldn't even take my wig off in front of my family or Ross. I vowed no one would ever see me without it because I didn't want anyone to have that horrible image of me in their heads. I could barely look at myself in the mirror and yet I felt jealous of these women who could walk down the street almost bald with such confidence. Several times I had to stop myself from running up to someone and asking why they cut their hair that short, or did they have cancer too? How do they show the world their baldness??
I became as insecure about my looks as I knew that I would the day I was diagnosed. Every mention of hair or hair salons or someone complaining about the state of their hair made me cringe inside. How I longed to at least look normal even if I didn't feel normal inside! I told my friends they couldn't talk about hair around me, I was just too sensitive and would flip out. Even if people complimented the wig, I felt uncomfortable. I felt like a fraud, I didn't feel like me. And on top of everything, I hated that I was still this vain when I was still being treated for cancer. I felt like my focus should be on my health, not my looks, but it goes to show you that I'm still the same person inside. I want to be healthy and pretty, is that so bad?? Especially with my wedding looming over me.
So as my hair started to grow back (my eyebrows came back first and that was amazing-they look better than before!), I felt such joy and tried to anticipate how long it would get the next month and the next month. Yet I still wore the wig. At this point I hated the wig, it felt like a ball and chain every time I had to put it on my head. I felt like I was branded with a scarlet C every time I walked down the street or went to work or saw a friend who hadn't seen me in a long time. The weekends when I would stay home and wear my scarf all day I felt the best because I didn't have to put something fake on my head (and lets face it, the wig was starting to lose its luster) and I could just be me.
My turning point came on my 28th birthday, just a month ago. I was getting ready to meet Ross for dinner and I cried that I was celebrating another birthday still fighting cancer and I cried that I didn't even feel pretty on my own birthday. I struggled internally because at that point I had more than enough hair to walk around without the wig, but I still was so insecure and Ross had never seen me with hair this short before. I didn't know what to do, should I wear the wig to my birthday dinner or go without? I decided to compromise. When my hair started falling out, my mom bought me a fake ponytail that I could use to make my hair look fuller. I had put it away after all my hair was gone, but I wondered if it would work now that I had a few inches of hair. So I bobby pined it to my head and it stayed! I literally felt like I was reborn and I was myself again. I was able to show my real hair with just an extension of extra hair and I recognized that girl in the mirror, she was the girl I've known for 28 years, I found her again. It sounds silly that a ponytail could give me that much confidence, but it made me feel like I looked closer to how I looked before cancer without the look of a wig.
It took a while for me to get used to the idea of ditching the wig and wearing the ponytail and my real hair everyday. Although the new drug I'm on, Gemzar is supposed to cause little to no hair loss, I was still scared that it would fall out. Then 3 days ago I realized that I've been scared to make any plans, scared to book vacations with friends, scared to move forward with planning my wedding, scared to look into the future and I thought, "maybe I'm holding myself back". Maybe I need to strut towards the future (with my real hair) and just don't look back. So the next day, I slapped on the ponytail and went to work with my real hair showing in the front. It's quite a different look from the wig, so I braced myself for comments that would make me feel uncomfortable, but everyone was great. And the best part is that I feel so much better about myself and my insecurities. Now the question is, could I go sans ponytail with just my new curly fro (I must admit my new hair is pretty nice, silky, soft and curly!)...I don't know...all I know is that I feel like me again for the first time in a long time, so thank God for small blessings.
Sunday, November 21, 2010
So I've decided to adopt that method and continually say those things to myself whenever the dark thoughts enter my mind. And I have to say it hasn't been easy. There have been times when I thought about postponing the wedding because I thought it was just too much to deal with everything going on. Instead of this happy event to look forward to, it became a burden that I had to worry about. But Ross said he didn't think we should postpone it because it would be giving in to the disease and deep down I didn't want to postpone the wedding, I just got scared and stressed about it coinciding with all this medical drama. I want to be past this cancer period in my life so bad so I can enjoy my wedding day and my marriage and there is still hope that I will be.
As cliche as it sounds, I am really trying to turn over a new leaf. I'm moving forward with the wedding planning...Ross and I started the first leg of our wedding registry today and starting planning our honeymoon...and I'm trying to take it one day at a time. I started the new chemo and while I don't feel great, I certainly don't feel as bad as the previous drugs have made me feel. The holidays are coming up and its my favorite time of the year, so I hope that will automatically bring joy and happiness that I need into my life.
Sunday, November 7, 2010
Yet, with each setback, the phrase "stay strong" has come to irritate me. I no longer feel strong, I know longer feel courageous and I no longer have a desire to be anyone's inspiration. So when someone tells me those things, I smile and nod on the outside, but on the inside I feel like crumbling. I feel like my positivity and strength has been slowly chipped away by each disappointment. On one hand, I do understand how people can believe that I am still this wonderfully strong, inspiring person because I get up everyday and face the world usually with a smile on my face. Yet, they're not there when I have my deepest darkest moments and have tears streaming down my face. The reality is, I cant sit around and cry all day. I have to go to work because I need health insurance and I need to pay my bills. I have to make it through each day balancing my real life and my medical life. I may seem ok on the outside but in the inside, the word "cancer" is usually never far from my mind. I don't think its being strong, I think its doing what I have to do--as anyone in my situation would do.
So I struggle with this each and every day as my world gets harder and harder. I just want to be cancer-free and healthy, then call me strong and inspiring. Right now I feel like a person just trying to make it through each day, putting one foot in front of the other. I'm trying to build up my strength and positivity so I can get through this next step.
I finally saw a picture of the scan and there is a small clump of cancer cells on the right side of my chest. So the plan is for me to have a med called Gemzar once a week, for 3 weeks in a row. They're not sure how long I'll be on this drug, I guess it depends on how it does. The good thing is that the side effects are supposed to be minimal, so hopefully I shouldn't get sick.
Today was the day of the NYC Marathon and since my new apt is on 5th ave, we were able to see the runners come right past our building around the 22nd mile. It was amazing to see people of all ages run 26.2 miles (esp those wearing Leukemia and Lymphoma Society shirts, I cheered hardest for them) and it reminded me of the race that I'm in as well. For lack of better words, I'll use a silly metaphor; at the beginning of this journey I thought I was running a short 5k, but it turns out, I'm really running a marathon. Part of me feels like a fool because I thought it would be a short race, noone told me the race would be this long and I realllyyyy hate running. But as much as I hate running and would never choose to run a marathon on my own, I want to reach that finish line sooo bad, so I guess I'll have to keep running.
Thursday, October 14, 2010
Wednesday, October 6, 2010
However, today my doctor told me today that my biopsy came back positive. Basically, they did some initial tests and those were all negative but then they did additional tests and the cells looked similar to lymphoma cells, but they are not 100% sure. He still needs to speak with another pathologist for a final diagnosis, so I wont know for sure until next week...again. This is dragging on so much longer than I had hoped and I'm emotionally exhausted at not knowing what's going on inside my body.
Of course I was very upset and immediately burst into tears upon hearing this news, so thank goodness Ross was there. My doctor was very sweet and explained to me that worse case scenario and it is lymphoma, the area of concern is very small and I could be treated with a small dose of radiation and some meds in an IV that he promised wouldn't make me sick at all. Or they could decide to wait and have another scan again in a few weeks. So that made me feel better because my worst fear is going back into the hospital again for another transplant, but he said that wouldn't be the next step.
I just prayed so hard that I would be writing a blog post that I am disease free and in remission and it just doesn't seem that easy! I don't get it, because I know that God doesn't give you more than you can handle, but I feel like I have reached my breaking point with this disease. I want it out of my life, ASAP!
Thankfully, my doctor's words made me feel better, he promised me that while this isn't good news, its not horrible, life ending news and they can treat this. And he gave a few examples of patients with disease far worse than mine that are doing well. So all I can do is hope and pray I'll get this. Believe me, the second I'm cancer free, I'll be shouting it from the rooftops, so you wont have to ask.
Tuesday, September 28, 2010
I felt like I was due some good news after everything I've been through in the last year and I was looking for this scan to give me that. Unfortunately it wasn't that easy. Back in July when I was hospitalized, a CT scan showed my lungs were full of something they called "infiltrates", my doctors said it was inflammation and a reaction to chemo. So when I was told that my latest PET scan showed that there were some bright spots in my lungs, I wasn't completely surprised but I was still scared. My doctor told me that they felt like there was a good chance that the spots were remaining areas of inflammation from my reaction. However he doesn't want to wait another 3 months to scan again and he wants to be sure. Therefore I'm scheduled for a broncosopy and biopsy this week. He told me not to worry and that if I hadn't had previous lung issues, he would be a lot more concerned, but it's easier said than done. In some ways this situation mimics the recurrence in Feb and that's scary; a bad PET scan, bright spots in chest, biopsy, BAM! recurrence of Hodgkins. Yet that time I had no lung issues and my chances of it just being inflammation were a lot more slim. Having gone through that awful experience and the subsequent additional chemo and stem cell transplant, makes me extremely fearful. I am trying to remain calm, as I know the PET scans are extremely sensitive and can pick up any sign of infection, inflammation, scar tissue, etc. It doesn't mean it's automatically cancer.
So it wasn't the good news I had hoped for and I'm pretty hopefully that it is simply inflammation in my lungs and nothing worse. Yet, the stress of waiting for the results is unreal. Scarier than scary, I wouldn't wish this kind of fear on anyone. I have so much to do, so much to live for that I want and need to be able to put this behind me. And my doctors have assured me that I will, so I am doing my best to believe them.
Sunday, August 22, 2010
In a few weeks Ross and I will travel back to Martha's Vineyard for Labor Day weekend and it will be the first time we are on the island since our engagement. I'm so excited to go because this has been an exhausting summer and I'm due for a vacation! I definitely need a break from New York. Lately as my physical health has been improving, my emotional psyche has become a little erratic. The dark cloud over my head is my upcoming PET scan in September that transplant patients typically have 90 days after transplant. It's just scary because I've never had an "all clean" PET scan, I've had "good progress" ones, but never that complete sign off that all the cancer is gone. And this is it.
It's a lot to process, especially considering that I thought I would have that "all clean" PET scan back in February, only to be sadly mistaken. So I'm feeling anxious. It's the same anxiety I experienced back in May before I went to the hospital, because I was so scared of what would happen. It was hard but I got through it and I know I can get through this as well. I received a much more aggressive treatment this time around and my doctors are all very positive. I just wish there was something I could do to insure that I'm ok, but all I can do is wait. I think for the next year this will be a common feeling (you're typically scanned every 3 months) and I think each time the inevitable scan comes up on the calendar, the feelings will come back. But I hope it will get easier as time goes, easier to believe that I am healthy and the cancer is gone and will never come back. Because really, that's the only option.
Sunday, August 15, 2010
I realized that I hadn't been thankful enough for the happy moments in my life and I needed to really thank God for the blessings that he's given me throughout this experience. So I went back to church today for the first time in a while (I had been once since I was released from the hospital) and fittingly enough the sermon was about turning to God during the good times AND the bad times in your life. It's so easy to dismiss the good times, but as soon as something bad happens, you fall to your knees and ask God why. I know I've been guilty of that so many times and each time I lament over something negative in my life, I'm trying to remember all the positives. So much of my treatment couldn't have been possible without my job, my family, my faith and there have been so many blessings along the way.
So the pastor at my church urged the congregation to stop being a pessimist and thank God for simply waking you up each day, because when you think about that, that's pretty huge. It's a lesson I think I'll need to continually remind myself.
Thursday, August 5, 2010
So you can imagine I was not happy about being admitted. The doctors explained to me that it was for my best interest, but I still made a big fuss. When I made it up to the transplant floor, the head nurse gave me a big hug and said, "I heard you didn't want to come back and see us and you were crying!", I was like, "I would have been thrilled to see you anywhere but here..no offense!". Everyone was really nice and assured me that I wouldn't be there long. In fact, they didn't have to do too much since I wasn't hooked up to an IV and just given meds via pills. Of course this infuriated me even more, because I figured that I could take the pills from the luxury of my own couch which--as I told numerous nurses and doctors--was only 20 blocks away from the hospital. But of course, theres a method to the madness and as much as I DID NOT want to be there, I know they were just being safe. I had my lung biopsy and was released on Sunday, just in time to head to Target with Ross for some home decor shopping. Thankfully, the meds did their job and I felt much better, I could walk around like a normal person with out huffing and puffing with every step. It turns out that I didn't have any infection or pneumonia, so they concluded my shortness of breath was caused by a reaction to the chemo drugs. So the steroids should clean that up in a few weeks.
In retrospect (which is of course is always easier), I'm glad I had the tests and they could treat me, but at the time I was terrified to stay in the hospital. And of course, now all I can focus on is the fact that this particular steroid can make you gain weight if you're on it a long time...great! I've been told I won't be on it that long but me being me, its on my mind. After everything I've been through physically, the last thing I want to think about it is my weight, but I'm still that girl. But hopefully it wont be a problem for me. Next up, rescheduling my mtg with my wedding planner so we can get the ball rolling...I've been having dreams lately where its the day of the wedding and I haven't done anything, so I think it's time for me to focus on it!
Thursday, July 29, 2010
One year ago today I was diagnosed with cancer. It was the worst day of my life, until the day that I found out the cancer didn't go away and I would have to undergo further treatment and a transplant. The picture to the right was taken one week before my diagnosis, I feel so sad when I think about how carefree and happy I was then, and I how I had no idea cancer was growing in my chest.
I've replayed the moment that my life changed so many times in my head, I remember the night before my doctor's appt, praying that I was ok and healthy. I remember what I wore that day...I figured if I dressed up like everything was ok, I couldn't possibly get bad news. I remember going to work that day, trying to pretend like it was a normal day and I was going to be just fine. I remember walking to my doctor's office that afternoon, begging God to save me and give me good news...I remember thinking I couldn't possibly have cancer, that's too crazy. I remember when the words came out of my doctor's mouth that yes, it was Hodgkin's Lymphoma, yes I did have cancer. And I remember crying as I called my parents and Ross from the doctor's office and had to explain to them that I had a life-threatning disease. I remember hearing the pain in my parents' voices as they tried to assure me from thousands of miles away that I would be ok. The pain I felt that day as I struggled to understand what was happening to me is just as real now one year later as it was that day. Although I looked perfectly healthy on the outside, inside I had a horrible disease. And I could have never guessed what this last year would have brought me. So much pain, fear, worry, sleeplessness and introspection. And it's not over. Everyday I learn just how long and hard this process will be.
So I guess it's fitting that today a nurse called me and said, "Don't be alarmed, but....". My heart almost stopped. I've been having problems breathing the last 2 weeks, feeling very short of breath when I walk short or long distances. I went through a myriad of tests this past week to determine what was going on because my doctors weren't sure. They listened to my lungs and didn't hear any fluid but a CT scan I had today showed that there was something abnormal in my lungs. So I have to go back to the hospital tomorrow to have a biopsy so they can see if I have an infection or if its just scarring from the chemotherapy. It's hard not to feel defeated when something like this happens. I would love to be writing that one year later I am rebuilding my body, my mind, my spirit, but I feel like I'm not there yet. Frankly I'm tired. I'm tired of being poked and prodded and giving blood and feeling and looking like a cancer patient. And the irony is that I was supposed to fly home this evening to meet with my wedding planner Heather and start looking at vendors for my wedding. Instead I'm headed back to the hospital. I know there can be a lot of complications with stem cell transplants and I was lucky to not have any big issues while I was hospitalized. Still it's incredibly frustrating to try and find myself again after this process, only to find out that something else is wrong.
I have to have faith that this is part of the larger plan and once again I am grateful that I spoke up to my doctors and told them something was wrong so I can be treated. I did that last year when I had a swollen lymph node on my neck and I thank God everyday that I didn't simply dismiss it, instead I saw a doctor. As bad as it's been, it could have been so much worse if I had ignored it. So I'll continue to be aware of my body and in-tune with what's going on.
Wednesday, July 21, 2010
It takes a lot for me to get myself together and go out in the world everyday...and I mean a lot. I try to be my personal cheerleader and put on a normal face but inside I feel like I'm crumbling because my body has gone through so much and my mind has gone through so much yet everyone else's life seems to have stayed the same. Its a hard, long recovery process and I feel like I'm just at the beginning, both physically and mentally. At this point I thought I would feel better but I'm still really tired and don't feel or look like myself. I miss her, the girl who I used to see in the mirror and I'd give anything to get her back. Looking at old pictures is so bittersweet because I look so happy and carefree. I used to run towards a camera because I loved taking pictures, now I run from the camera because I don't want to capture an image of this person I've become who I don't recognize.
Unfortunately this is a process that is hard to understand unless you've been through it yourself, I feel bad for Ross because he has to comfort me almost every other day when I burst into tears out of the blue. Just when I'm off focusing on something else, cancer comes back into the picture, whether its a commercial on TV, an article in a magazine or slipped into a conversation. I marvel at the causal way people mention cancer, but then again I used to do the same thing! Before cancer you know it involves chemo and you lose your hair and you get sick, but you really have no concept of the amount of time spent in the doctors office, the physical pain and the emotional torture unless its happened to you or someone you love. It's a lonely club to belong to, frankly I wish I had never been selected for membership.
I'm hoping to get my "mojo" back soon and get through this hard time in my life. I think once I start to feel better, my mind will follow. But its frustrating because all the side effects from treatment take like a day to happen to you but months for them to go away. And that's the reality.
Monday, June 21, 2010
The hospital is supposed to be peaceful, but they don't let you get a lot of rest since they are consistently waking you up to take your vitals and blood pressure. Plus they are dosing you with various meds throughout the day. So I never felt like I really rested there. I'm not gonna lie, it was hard...the hardest thing that I've ever had to deal with, but I'm so thrilled to say that its over.
I was so fortunate to have my family and friends come visit me and send cards to let me know they were thinking about me. It meant so much to me to be supported throughout this somewhat lonely process.
Of course there will be lots of checkups over the next few months and I'm definitely not up to par yet...there will be a long road of recovery for me but I'm just looking forward to the future!
Monday, June 14, 2010
Tuesday, June 8, 2010
Friday, June 4, 2010
Tuesday, June 1, 2010
This past weekend was Memorial Day Weekend and I was determined to make the best of it, as I will be admitted to the hospital this Thursday for my stem cell transplant. It’s not an easy pill to swallow because I don’t know how bad I will feel, how long I will be there and how I will survive being in the hospital for weeks on end. I was told I could be there anywhere from 3-4 weeks which is a lonngggg time. I’ve never been anywhere for that long…no vacation, no work trip, nothing. I feel like I’m headed for a jail sentence (which honestly at times I would prefer), because I simply cant imagine what it will be like to not feel the sun on my face or the wind in my hair for that long. Plus hospitals stink! I’m a fanatical weather checker…I tune in to the Today show each morning to find out what the weather will be, what outfit I should wear depending on the temp and if I should use an umbrella. I even double check on my phone to make sure that it syncs up with Al’s forecast. And for 3 weeks the weather outside won’t even matter. I found myself looking at the weekend forecast this morning and I had to remind myself it wouldn’t matter because I would be stuck inside the hospital…I could wear a bikini or a snowsuit and it wouldn’t matter.
It’s really hard to comprehend that this is actually happening to me. Although I had a great weekend…saw Sex and the City 2, hung out in the Hamptons at a pool party, spent time in Central Park with friends…in the back of my mind I knew this would all end very soon. I tried to memorize the trees, the grass, my apartment, my block, anything that will stick with me over these next few weeks. Many times this weekend I found myself consumed with emotion at the drop of a hat at the thought of what’s ahead of me. Ross has done his best to comfort me and my parents have already made arrangements to come back to NYC, but the bottom line is that no one will know the pain, fatigue, and worry that I feel except for me when I am lying in that hospital bed. It’s a scary, scary thing and I can’t say how anyone would prepare for it. I found myself dealing with a lot of anxiety these past couple of weeks and have had trouble sleeping at night because I would wake up in tears at the thought of everything. I’ve known since February that this procedure would happen and one would think that would give me time to process it, but as the days get closer the harder it gets.
I haven’t had a chemo treatment in a month and I feel like I’ve been on vacation. Vacation because I’ve been able to go to work everyday, cook dinner with my fiancé, do a little wedding planning, go out with friends and even have the occasional glass of wine…I’ve felt so normal! And its funny how the mind forgets. I can almost recall the horrible feeling that the ICE chemo gave me but it also feels like it happened so long ago. So I think that makes this hard because I’m set to start another form of chemo called BEAM on Thursday and I’m so tired of feeling sick, I could scream.
The silver lining is, in retrospect things never seem as bad. I didn’t think I could get through the last ICE treatment, but I did. So I know I’ll get through this and I know when I look back, I’ll be amazed at my strength and what my body can handle. And I know I’ll be jumping for joy that this hell is over and I can be healthy again. I just wish I had a time machine that got me to that place a little sooner…
Tuesday, May 25, 2010
Ross and I are going through a lot of changes right now...he just moved back to NYC, I'm about to embark on a stem cell transplant, we're looking for a new apartment and we're planning a wedding! It's a big time of transition and I knew that with everything going on in New York with my health, I would need to hire a wedding planner in Charlotte to help make sure things run smoothly.
Wednesday, May 12, 2010
Wednesday, April 21, 2010
Wednesday, April 14, 2010
I saw this ad and thought, "Me too! I want to tell cancer to get out of my life too!". So I decided to write my own letter to cancer...words have power and by putting it out there, I feel more powerful and ready to fight cancer.
I hate you. You have come into my life unexpectedly and turned it upside down. You've caused me to question my future, question my body and question my spirit. I didn't know how hard life could be, how much pain and anguish it could bring until you came into my life and changed everything for me.
You make me sick. Emotionally, spiritually and most of all physically. You've made me feel like crap for days on end and leave me in tears and distress, and it's not fair what you've put me through. But I dealt with your abuse for 6 months. And then, when I thought you were on your way out of my life, you came back; stronger than ever and tried to hold me down. Well guess what? I'm not going to take this lying down. I want you out of my life for GOOD. I have an army of doctors and drugs and I will fight you to YOUR death. So don't worry about what I will do when you're gone, I will be happy and healthy and never look back.
Yeah, I've learned some important lessons from from having you in my life, I will be stronger than ever before after you are gone, but that doesn't mean that I thank you for being in my life. I will do anything in my power to make sure you leave my life forever. So GET OUT, and STAY OUT.
Wednesday, April 7, 2010
In the spirit of living my life, I've been continuing my search for my wedding dress. And Easter weekend we found it! My mom and I went to Kleinfield's (home to TLC's "Say Yes To The Dress") and I said yes to the dress! (And no, to every one's surprise I didn't opt to be on the show...there was no real incentive except being on TV). I'm so happy that we found it before I started to get really sick, it gives me something fun to think abut when I'm not feeling well. I had my second treatment this past week and it was out patient--which meant I got to go home every night and sleep in my own bed. Ross and my dad came into town for the treatment and my dad is still in NYC playing the role of "nurse" as I recover :) Spending some father/daughter time has been good for both of us. He's been great, coming up with projects to do around the house when I feel up to it...by the time he leaves my apartment will be spotless!
So day by day, step by step, trying to continue to live my life. That's my reality right now.
Monday, March 22, 2010
Saturday, March 13, 2010
I must admit fighting cancer can be a lonely process, at times you feel like no one understands how it feels, the pain you feel physically and emotionally, the scary thoughts that run through your head at the most inopportune moments, the times when you just want to be anyone other then yourself. It can be extremely overwhelming. And when it happened for the 2nd time, it was extremely heartbreaking. So just to know that people are out there thinking about me, caring for me and praying for me, is very comforting for me and my parents. I know this process has been hard for my parents and I hate seeing them have to go through this as much as I hate that I have to go through it. They can't make my cancer go away and fix it like they want to, yet they've done everything possible to be here for me and help me get through it. And I'm so grateful to their close friends who have supported them as they have been strong for me. I know that for my parents and Ross, it's hard to be in the "caretaker" role, so they need support just as much as I do.
The texts, emails, voice mails, cards, flowers, hugs, smiles...I can never get enough and it really does help my spirit. I have to stay positive and there's nothing more positive than love!
Sunday, March 7, 2010
Throughout this process I have tried my best to understand all the medical terms that are thrown around by my doctors and what I see on my charts. I've re-read my scan reports and google'd words on the Internet to try and get a better grasp of what's going on. Even though my doctors have explained the situation to me, I just want to make sure I have all the details. My thirst for medical understanding became a little too apparent when I was trying to eavesdrop on my surgeon and anesthesiologist before my last surgery---they both glanced over at me smiling as they noticed how I almost fell off the bed trying to hear what they were saying about me.
The biggest thing that I've learned is that I was never in remission. From what I understand, remission is something that is achieved once you have been cancer-free for at least 30 days. In fact, I wasn't ever completely cancer free. My scan in November showed that the chemo was working. It was killing the cancer cells in my body and a lot of them had significantly shrunk in size. They weren't totally gone, but they were on their way to being gone. The remaining 2 rounds of chemo were supposed to completely kill the rest but that didn't happen. Thus, I have what is called "Recurrent Hodgkin's Lymphoma", so I had a recurrence, not a relapse. As in any scary, dark situation, I try to find the sliver lining and in this case, I'm glad it happened now. I'm still in the world of hospitals and needles and doctors, so emotionally I think I can deal with staying in that world longer. But if I had been away from it for months, or even years, I think it would be that much more devastating to find myself at the beginning again.
However, I'm not gonna lie, this is hard. I have to embark upon a whole new treatment, a whole new process and it's scary. Basically I will have to receive an aggressive chemo called ICE (sounds scary right?) and then an even more aggressive chemo called BEAM (not as scary sounding) and then a stem cell transplant. A stem cell transplant is where they take out your own blood cells, pluck off the stem cells, freeze them and then give them back to you after you're done with chemo. The whole process should take about 3 months which (silver lining again!) is less than the last time which took 6 months. I have to believe that it's only good news from here on out; only good scan reports, only good blood tests, only good looks on doctor's faces. And I'm sure I will learn even more medical stuff along the way.
So I'm ready to get started because the sooner I start the sooner I finish. I'm trying to believe that if it had to come back, this was the best time for it to come back. So in my mind a recurrence is better than a relapse. But what do I know? As my mom and I joke, we got our MD's at Kmart :)
Thursday, February 25, 2010
My life was a whirlwind for the next few hours. I had to immediately meet with a thoracic surgeon because I needed to have surgery and a biopsy to determine if it was in fact cancer. And I had to get all of my medical files and slides to take to the stem cell transplant doctor. Then I was told I needed to go to Westchester, NY to meet with a fertility specialist because the additional chemo is harder, stronger, more aggressive and would leave me infertile. All of this in one day. As I ran around the city trying to get from one appt to the next, I was in a cloud, not truly believing that this was happening--again. My thoughts and feelings from that July day when I was first diagnosed all came rushing back. Why me?? What did I do wrong? Why won't this cancer die? Of course I had worried about it coming back but I never dreamed it would actually happen. This is one of the most treatable cancers and yet mine wouldn't go away. My doctor told me this was not what he expected but he explained that sometimes some of the cancer cells grow resistant to the first type of chemo and they don't die completely. Like an ant you may think you kill when you step on it, it could still wriggle around and come back to life.
So I had surgery this past Monday and my parents came into town to be there when I came out of the anesthesia. The surgeons had to use a giant robot and video camera to go into my chest through my ribs to grab the tissue from my esophagus. So when I woke up I was in a lot of pain and had a tube coming from my rib cage to drain blood. It wasn't pretty and I felt much worse than I thought I would. It was pretty serious surgery and I had to spend the night in the hospital. Thankfully, I was blessed to have a private room and my parents were able to spend the night with me there. My friends were also there to lift my spirits.
When I told my roommates that I might have cancer again I told them I didn't think I was strong enough to go through it again and my roommate Renee said, "of course you are, if anyone is, you are". But I didn't feel strong. Frankly I wanted to give up, go far far away somewhere where I could get away from this awful disease that won't go away. But I can't. It's in my body and I have to fight against it. I think one of the most annoying things is that I feel fine. No symptoms, no sickness, I didn't even catch a cold this winter when everyone around me in my office was coughing and blowing their nose! If I didn't have the PET scan and the biopsy as proof, I wouldn't even believe that I was sick. Now that I know the truth, I have to dig deep inside me and find the strength to fight again. Hebrews 10:25-36 says, "So do not lose the courage you had in the past, which has a great reward. You must hold on, so you can do what God wants and receive what he has promised." So I have to hold on, I have to fight, so I can finally be healed--for good.
Ross is coming to town on Saturday and I cannot wait to see him. There are a lot of decisions we have to make and I'm glad we can make them together. I prayed so hard for healing and that my biopsy would be negative for Hodgkin's, so it was disappointing to hear that it wasn't but I know that God will answer my prayers, it just may take a little longer to get there.
Wednesday, February 10, 2010
I'm still on pins and needles though as I continue to monitor my health with PET scans and doctor visits. It's kind of a scary time to be done with treatment and hoping and praying that the medicine did it's job and I never have to worry about it again. I keep looking towards the future, thinking about how I will feel about everything a month from now, 2 months from now, 6 months from now.
Meanwhile, my 2nd blog on Carolina Bride has been posted here! Since this audience doesn't know me and is new to my story, I'm taking them back to the first few days of my diagnosis and telling my story from there. Speaking of weddings, I feel like I need to get moving on some plans...we've chosen the venue but I need to work on the next step. Theknot.com now sends me emails on the 4th of every month, reminding me how much time we have left until our wedding date and how many hundreds of things we have to do before the day. Even though I know we have tons of time, I have to admit those emails stress me out! So I need to work on some wedding stuff to make myself feel like I'm getting things done and my inner Bridezilla doesn't come out--yet at least! Time's a tickin..
Tuesday, January 26, 2010
My parents were in town to celebrate the end of chemo, so it was nice to have them in NYC to help end this part of my treatment. My nausea has passed and I hope to never have that yucky, chemo feeling again. I get "phantom nausea" every once and a while, but I've heard that the body forgets so hopefully soon it will be a faint memory.
This "transition" phase, as I've begun to refer to it, will be interesting. I'm trying to give myself a break, but now I feel like this is the time to rebuild myself emotionally and physically. I know one thing, I need a vacation after all of this! A little fun in the sun, a getaway from it all...I'm going to see if I can make that happen.
Tuesday, January 19, 2010
Wednesday, January 13, 2010
This time next week I will officially be done with chemo!! My last chemo treatment is next Tuesday, Jan 19th and I couldn't be happier. I am ready to NOT visit the hospital every 2 weeks and to NOT feel sick and nauseous for 4 days afterwards. Definitely ready to shake up the routine that I've had for the past 6 months. I will have another PET scan 4 weeks after my last treatment and then I'll find out how often I will need to have scans after that. I think it will be every few months.