Tuesday, February 15, 2011

I am me

Wow… I have an overwhelming sense of emotion when I just read through my past blogs. I can’t believe that is has been since September when I posted any thoughts last about my health. I hear from friends and loved ones, “you haven’t updated your blog in a while”. I agree with them, saying to myself that I will get to it, but I never do….So much on my mind.

I wake up each morning knowing that I have my disease. I find it extremely tough to get out of bed, shower and get ready for the day. In so many ways I feel as though I am living this pretend life, that everything is ok and that I don’t live and breathe Cancer every moment of every day. I want to be normal, I want to do what everyone else does, but I find that my body is just not up for it. My girls frequently want to do dinner at night after work but I just can’t do it. I feel badly because I know that I miss out on opportunities to share those special moments with them, however I also know that my body just needs to rest. I am in bed by 8:30/9:00pm at night and up again by 6:30am the next day. My body is sore each day. My back aches, my left shoulder hurts, my neck is tender. I have come to know that these “ailments" come with the territory of my disease and are completely normal. Will this be the rest of my life? Will I always be like this?

I spend many weekends with family and friends. I enjoy my wine. I have seen so many wonderful sunsets from the deck of our place as well as a couple at the beach too. I look at those beautiful skies and feel that there is another sense of power which is showing me to be strong and to never give up hope that there will be a cure one day.

On December 14th my twin sister Shira gave birth to Asher Scott Hatton. I was in the delivery room and being there in that moment was something I will never forget. I remember feeling so incredibly happy but at the same time thinking, will I ever have the opportunity to carry a child based on my health? On January 27th my sister-in-law gave birth to Julien Allen Rosenstein. He was in the NICU for over a week and I felt so helpless that he was in there for so long. Good news is that Julien is home now and doing a lot better! Two little nephews in such a short time, I do feel so blessed.

Although I have this sense of happiness for my family, I honestly still wonder if my two little nephews will ever know me as their aunt. Will they ever learn to say my name and allow me to shower them with love or will they only see photographs of an aunt they never knew, who died of this disease. I can’t help but discuss my true emotions here. I don’t always think this way, however I wouldn’t be real, I wouldn’t be me if I didn’t share that these thoughts cross my mind frequently.

Around Christmas time I received a call from Dr. Terpenning saying that my IGA levels dropped to the numbers they were back in August. This news made me feel so happy. Mike and I went to celebrate that night, thinking everything I am doing and with his help of eating right and juicing and being positive and getting my blood tested every six weeks is finally working – is my Cancer going away? Sadly though back in January, my numbers went up again. I felt helpless, I felt disgusted. I felt angry. How can this happen if I am doing everything right? Then I began to think, what is right? Is there really an answer? From what I know now, with this disease, there really is anything that can be done at the moment and there is no answer.

I see people all around me who are healthy. I also think, why do they get to be so lucky? Is the grass really greener? I know they have problems too, but do they live their life thinking that there might be a chance they won’t live, have children and be old enough to see their grandchildren go to college? Ahhhhh.

Dr. Barr wrote me a note sharing that when I am at work and people around me are sick, I will have to wear a mask. I do already wear one when I am on airplanes when I travel to prevent extra germs from spreading into my body. This is really embarrassing but I don't have a choice. My immune system is so compromised that if anyone else is sick, I will get sick -- end of story. A common cold leads to bronchitis, leads to pneumonia, leads to going to a hospital. This is what I need to avoid. I did have bronchitis last month which kept me out of the office for some time. I feel completely frustrated that I have not and will not be able to control this part of my life ever again. It truly is not fun to be sick all the time, but with my Cancer, I will be this way forever. I find myself washing my hands, using anti-bacterial hand sanitizer, never touching doorknobs or even my face. I have to be so careful.

I recently had a second full skeletal survey where they took 20 x-rays of different bones in my body. Results are not in yet but I am hoping there are no holes developing. I will need to do a 24-hour urine collection which will test to see if I have protein coming from my bones as well. I will also need another Bone Marrow Biopsy this Summer. I am really not looking forward to that painful exam, however it is the only way to really tell what the percentage of Cancer cells are in my body.

I saw Dr. Forman again last week. It was the first time after my initial diagnosis. I sadly didn’t see my peacock that I was so wishing to take a picture of to post here. City of Hope still looks the same with many patients walking around with wigs, masks and sad faces. When Dr. Forman saw me, he was pleasantly surprised that I “didn’t look sick”. He thought I was just a caregiver, not an actual patient. When people say to me, “you don’t look sick” or “you do a good job of putting up a front”… it makes me feel so badly. Why does it make me heartbroken? Yes, I wake up every morning, shower, do my hair and make-up and look presentable. I have nothing else to control but the way I look. Inside I am so incredibly ailing. I have Cancer. This is not a joke. I have a horrible disease that has the potential of making me more ill in the months and/or years to come. What other option do I have than to try and be me? I have to put up a front in order to help me be more positive. If I don't look sick, than subconsciously will this help me? Who knows, but I think it's working.

I don’t mean to sound sad or depressed or, or, or… because I am really not like this all the time. I do admit I am discouraged though. I thought that with the power of my mind, I could make this go away. Truth is… I can’t. In time I am hoping that if I continue with my positive spirit that it will help me stable in my disease for years to come.

Talk soon.

4 comments:

  1. You are so brave and are such an inspiration! Thank you for sharing your continuing journey.

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  2. You are a beautiful woman inside and out Jennifer. Have a happy birthday and surround yourself with family and friends who all love you.
    Love, Aunt Lisa

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  3. Jennifer,

    I think of you often!! Aaron and I are really looking forward to seeing you and Mike at brunch next Sunday! Thank you for sharing your life with all of us! Your a beautiful, strong woman - stay positive!
    Pamela

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  4. Jennifer:

    I think in times like this, it is important to lean on God - He is the only one who can heal you besides doctors and medicine. Prayer gives us hope, and from what I have seen and read, God often performs miracles for people who are sick.

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