Today just didn't feel like my day, although, honestly, it hasn't felt like much of my day in a while. I'm really struggling to be positive and stay strong with all that is going on in my life and I'm finally considering professional help from counselors or social workers to deal with all of this. It is getting more than I can handle.
I was starting to feel better at the beginning of the month. I was adjusting to my medications finally, eating better and even gained back three of the forty-plus pounds I have lost. I had a string of visitors who kept me busy, but quickly I realized that my leave from work was over and hard devisions had to be made.
I had to quit my beloved job. My career is done. Just another part of my life that cancer has managed to take away from me.
I am unemployed and trying to file for disability. In January, I was planning vacations to Thailand and Venice. Now, I'm collecting medical bills and burning through savings. This is a hard pill to swallow.
Going in to clean out my office was rough. I managed to hold it together in my office and everyone was so kind and loving. My boss gave me a tight hug--and she is not a hugger. I cried the entire way home and much of the rest of the day. I'm so devastated to leave my work family under these circumstances. I feel I've let them down and I've let myself down for not being strong enough to return to work. Why can't I just get it together and live my life with cancer?
This started several weeks of overall just sadness. John returned to work in the office after working from home most of the time, leaving me to my own devices during the day. My medications changed again and have caused horrific morning nausea that takes hours to subside and makes my food taste metallic. I spend a lot of time sitting on the bathroom floor gagging and scaring my cats to death.
A small bit of hope lifted my spirits when I got an appointment scheduled with Dr. Jason Sicklick at the University of San Diego. He's widely considered the leading expert in GIST and also performs surgery. We thought perhaps he could treat me more aggressively or do some sort of surgery to make me more comfortable.
Well, here I am in San Diego. My parents, John and I flew in last weekend for my Monday morning appointment. Dr. Sicklick immediately told us that I was not a candidate for surgery in any way. I would need a 50% reduction in my tumors to even consider surgery. The liver is too large and too diseased. This was, of course, a very big disappointment to me. I feel like he was my big hope for getting back to a normal life and now, where do I go?
He agreed to take me on as a patient and begin testing for additional genetic mutations among other things. My parents left John and I in San Diego to complete the tests, which have been brutal on me to say the least.
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| A rare moment of tranquility |
On the first day, I gave 12 vials of blood which exhausted me for the next few days.
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| The excitement is real. |
On the second day, I had to collect all of my piss in a jug and then return it to the hospital. Very glamorous.
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| Enjoying exotic SD cuisine at Boston Market |
On the third day, I had a CT scan. I had a poor reaction to the contrast dye they used and spent the evening in gastric distress.
On the fourth day, I spent most the day vomiting from the same contrast dye and arguing with the insurance company over pre-authorizations.
Tomorrow, I have a PET scan....who even knows what that is?
Then, I finally get to go home and wait for results...a week later than planned.
This was no vacation. Although I can see the ocean, hear the waves crashing and smell the beach air from my bed....it is no vacation. This was just another reminder that I will live with this disease for a long time. This is the new normal.
God, I hope I can find the strength and positivity to move on with the new normal, because right now, I don't feel like I can. Where can I find my purpose in all of this chaos, disappointment and despair?
Purposes often seem to change many times during Life. One purpose of mine that doesn't change is loving my Self. Consider loving your Self for one of your purposes now and explore where it takes you. Perhaps that love can provide you the strength and positivity you seek. You can do this...your huge fan club knows you can.
ReplyDeleteYour work family doesn't feel like you've left us. You're on a different path right now and we support your energy going 100% into healing you. Thanks for taking time to come into the office. Remember the grieving process we review: denial, anger, bargaining, depression and acceptance. Grateful you are exploring professional assistance to process all you're experiencing with this requirement to live life with renewed intentions. Loving You!
ReplyDeleteNikki:
ReplyDeleteI have been following your posts ever since Kerstin told me about them. My heart truly goes out to you and your family. I, myself, was diagnosed with Primary Biliary Cirrhosis (PBC) and non-viral auto-immune Hepatitis 4 yrs ago. Yes, it sucks. My abdomen is distended, spleen has enlarged to almost 2.5 it's normal size and my life is work and doctor appointments. I am currently a Stage 3 but they are treating me as a Stage 4. Like you, I have been poked, prodded, had numerous MRI/CT scans and a bone marrow biopsy. I am fortunate to live in Houston where we have the greatest doctors in the Medical Center downtown. I live one day at a time. Whenever I feel down, I think of my kids and my grand children and how I want to be there in their lives for a long time. I have the great support system of my family and my husband. We know that I have a high chance of having this develop into liver cancer, but I will cross that path if/when it gets here. I love my life too much to die. Keep your head up! My thoughts and prayers are with you, Jana and the rest of your family.
Lynn (Knepper) Leon
Houston, TX
Hey Nikki, I fully support finding someone to talk to. I was diagnosed with ADD when I was quite young so basically grew up in a psychiatrists office. I have been on and off various mood altering drugs at different points in my life. The ability to have a non-partisan person to talk to is really unparalleled. You don't feel guilty at all unloading on them (because you are paying them - hah). Additionally, when my dad was ill with cancer we did family therapy which was so helpful, and may be something for you and John + parents or whoever to explore. It allowed us a safe space to be really honest with each other, and our therapist was able to give us tools to use we hadn't thought of. I was on the other side of the disease, but always here if you ever want to chat. The positive thing is that I'm 8 hours a head of you. So if you ever wake up in the middle of the night - I'm probably awake! Sending love and hugs and unicorns, or whatever would make you smile most. <3
ReplyDeleteCounseling helped me through what so many people didn't understand. Helped me to have real conversations about the real fears in my head, the ones you're too afraid to speak out loud. The ones that plague you at night when everyone else in the world is sleeping peacefully. I felt very alone, despite tons of support from friends and family. I also felt weary from comforting OTHER people who were afraid for me. It's exhausting. Therapy day was MY day. It was the one day I opted to put on pretty clothes, a little make up, even shave what was left of the hair on my legs. It was the one day I refused to live in pajamas.
ReplyDeletePlease. Consider going. Xoxo. Make it YOUR DAY.