20120416-214115.jpgMy head is swimming.

I met with my oncologist for the second time today. I thought I had a handle on the information I’d gotten on my last visit. But all that information, coupled with what I learned today, just led to more questions. One huge ream of paper seems to only answer a few of the questions I still have, and the thousands of words on them are still organizing themselves into facts in my head.

The gist: chemotherapy begins next Thursday, the 26th. Before then, I need an EKG and (more) assorted blood tests, and I need to be fitted with a port, under my skin. Tomorrow, I have a fitting for my prosthesis. Next Tuesday, I have a meeting with the pharmacist in charge of the drugs I’ll be taking. In the next ten days, I’ll be constantly on the move. And somehow, I feel like I have lots more to do here at home before then. Everything feels unsettled. I feel a need to finalize things. Make things right. Make somethingright. But what? What is left to do? I feel disorganized. Adrift.

In addition to my chemotherapy regimen, I will be participating in a clinical trial. My cancer is what is known as HER2-low. For years, trastuzumab has been used to treat HER2 positive patients. The aim of the study is to test the effectiveness of the drug on HER2-low patients. I need the EKG because of this study. There is a slight risk that it could damage my heart. Dr. Nguyen also illustrated my treatment schedule for me in detail, but it was so complicated that I don’t think I fully understood it.

I suspect Ryan more clearly understood everything we were told today. The stacks of paper, the calendar the doctor drew on the exam table. Last week, I became obsessed with the idea of the chemo making me dumb, and I think I’m already there. All these facts; all of the things I still don’t know; it’s squeezing out all of the space usually reserved for words and stuff I used to know.

Ryan, between the two of us, has been the one who’s done his research. He’s organized, prepared. He’s the one who will remind me of the things I need to do this week, I’m afraid. I guess I’ve always needed that from him. Now I’m asking him to be the strong one, too.

I didn’t fully understand before today how vulnerable I’ll be, immunity-wise. I’ll have to go to the hospital if I develop a fever over 100.5. I won’t be able to travel to Comic-Con this summer after all, regardless of how I feel. My doctor feels that at that stage in my treatment, the risk of infection is too great. Ryan expressed the desire to put me in a bubble, and I don’t think that’s so unreasonable.

I will also have to forgo sushi and rare meat and trips to the beach. I may experience nausea. I’ll probably feel weak for a day or two after each treatment. I may not be able to taste food, or have much of an appetite.

This is all temporary. I know this. But It’s just so hard to imagine not being able to revel in the things that are such a huge part of my life.

One of my fantasies is to go to culinary school. Food has been one of my loves, for as long as I can remember. Ryan and I have always talked about it, and now we’re determined. I will go when all of this is finally behind us. For right now, that next stage feels impossibly far away. So It’ll be one of the things I’ll hold onto to get me through.

14 thoughts on “bubble

  1. Aloha Jen,

    First of all, my heart aches for you and your family. I wish you all only the best.

    If I may offer a suggestion, take it or leave it, no matter, it’s only a thought…

    May I suggest you make something or do something small for each of your children, and for your husband? Just something small… a photo in a construction paper frame, a cookie, a poem, a kiss on the head, ANYTHING!

    Whenever I have been really down in the past, it is always good for me to do for someone else. Very soon, you will be in the awkward position of everybody doing for you, and you will hate it! You will feel like you need to be helping someone else, but you will be incapable. You will need everyone else to help you.

    If you do something small, now, for those who will need you most, and need to understand what is happening to you, just as this blog is something small you are doing for everyone else, it is my hope that it will help you and your family through this terrible trial.

    I wish, wish, wish, I could do more than offer lame ideas and thoughts. I really do wish I could tap my hidden millions of dollars and swoop in to offer an instant cure, but alas, for naught. There are no hidden millions. I am probably in straits so dire that by all conventional measure I should be destitute, already, living by the side of the road. All I have going for me is to keep on keeping on. That’s all I can do. I cannot quit. To do so would invite catastrophe, collapse, calamity, on those I love, within my family and without.

    So may I humbly suggest that you do something small, but nice, personal, for each of your beautiful children, your superman husband, your mom and dad, if they are still with us.

    I write this with the utmost respect and love for you and your family.

    Aloha pīhā, me ka ha’aha’a,


  2. (Wow, how does one follow that? Good comment.)

    Jen, you have a great family, and friends around you, all thinking of you. Take care of business, then get on with life. Because you will have a life.

  3. Absolutely love that you have such a great goal, a reward, awaiting the end of treatment. Try not to be too concerned about the lack of appetite. You’ll eventually more than make up for it at culinary school. Keep your eye on the prize. Everyone’s pulling for you.
    Healing hugs…Tutu

  4. Aloha Jen, I’m sorry to hear that you have to go through all this. ((((((((hugs))))))))) I don’t have cancer but I have a brain tumor and when they put me in a support group, it was a cancer group. I would sugest finding one yourself if you have any near you. It helps to be able to talk to others going through the same thing. People give you helpful ideas and keep your spirts up. If I had your address I’d send you something that one of the ladies made that help with healing. I’ll see what I can do. I have neasuea all the time too and found that they make ginger gum and tea. Ginger helps with the neasuea but since I don’t like it in candy or in food, I use the gum which is tasty and works well. anyway, I’m glad you have Ryan with you at apointments. I take my Kevin with me, he hears and understands everything I miss when I’m scared.
    Even though I’m far away and we don’t know each other, I send all my love to you and family. ((((((((((hugs)))))))))) ~Lisa

  5. Jen, I teach college. One thing that I’ve told me students – which many of them don’t believe but which is true – is that the amount of brains that they have does not determine how well they will do in life. Persistence and determination does. My students who go the farthest are the ones that keep going. You don’t know how chemo will affect your brain – maybe some, maybe not at all – but it won’t affect your determination to do whT you want to do. Want to go to culinary school? If that’s the dream, you will go and you will do fine, because you won’t quit on your dream, and your family and friends will support you 100%.

    Now, that being said, I don’t want this to sound like I’m getting off point, but KCC has an excellent culinary program. It was just reaccredited this past week, and not only got the maximum 7 years of approval, but the accrediting agency is deeming it an exemplary school – and KCC is very affordable. You don’t have to go the mainland to achieve your dream.

  6. Glad your and Ryan’s strengths can help each other out during this time. All the to-do’s and don’t do’s may seem daunting. Give yourself grace. Rest in the Lord’s peace. Know that this is a season you are going through. Things will be different and things will change, but keep setting goals during and for after the treatments. “For God has not given us a spirit of fear, but of power and of love and a sound mind.”

  7. Jen,
    When friend went through what you are going through, on the Mainland, I sent her an Aloha shirt to wear during treatment, to cheer her. Hmmm, what do you send to someone getting treatment in Hawaii? A boring Mainland shirt? 😉
    I like your goal – something to keep your eye on.
    I, too, had to lean heavily on my husband and friends when I went through brain surgery. I know what that feels like. Hang in there, as you know, it’s temporary!

  8. Jen–My thoughts and prayers are with you and Ryan during this time. I like the idea of having a goal for when you finish your treatments. And on a purely selfish note, I’m sorry you won’t be able to make it to SDCC. I was looking forward to meeting you there. Hopefully another time!
    All the best, from Texas!

  9. I cannot begin to imagine what you’re going through. I just know that the strength you show just by expressing yourself fills me with strength to get through my day of less hectic things. You are so blessed with a wonderful family and virtual support team that I know the fear you have will be countered with lots of love and courage from all those around you.

  10. On a less depressing note, tell a friend to carry a lifesize cardboard cutout of you at Comic-Con. That way you can still have pictures of yourself there! 😀

  11. My Mom, a BC Survivor, left a comment on my post on FB and I wanted to also share it here, so those I’m not friends with can see it too.

    “I’m Geoff’s mother. You take one day at a time-one event at a time. They have to warn you but know you may not have all the side effects. I tried to deal with the what is and not the what ifs. The what is – you are being treated to prevent the cancer coming back. You and your support can deal with it to be healthy- body and soul. I wish you a peace beyond understanding. Sue”

  12. Jen, I just heard about what you & your family are going through. I think you are such a wonderful writer. When I read your blog, I feel like I am seeing the process through your eyes. I am a RN and when I read about your feelings from the other side of the bed, it was a good reminder to not get caught up in the process but to remember the patient too.. I think it is wonderful that you have something fun to look forward to after all your treatments. You will have to continue your blog through your adventures in culinary school 🙂 My thoughts and prayers are with you and your family.

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