Chemo chick

chemo-chick.jpg

Today is the day after chemo and due to inclement weather here in the Northeast, I am unable to go to acupuncture. And I feel quite out of sorts. My limbs feel shaky. My head is spinning. I am very nauseous. And fatigued. I have taken some meds. Now I am just waiting to feel a bit better. Speaking of feeling better…this is a gross story. Read at your own risk. So I was telling you that I had this unbelievable head cold. No matter what I did I could not breath through my nose. It was awful. And I was in a lot of pain in my pharynx. You know the roof of my mouth. Last night I took a big snot inhale and coughed up a giant scab. Seriously it was the size of my palm, fleshy with blood, mucous, and other stuff. Everyone was so grossed out. Myself included. But now my cold symptoms are all gone. I can breath and do not feel any pain.

At my appointment yesterday I had several talks with Dr. Demichele. She was saying that my not being in pain was an indication that my chemo is working and that she did not see any urgency in getting re-scanned. I have an appointment with a plastic surgeon at the end of March who will need to see recent scans to determine whether I can get some reconstructive surgery. So in the end we decided i will get a pet/ct in about three weeks. Dr. Demichele also found me a new internist who practices acupuncture. He will help manage my sugars and be my primary care doctor. I will still see Ed every Friday though. Dr. Demichele thought he would be a good doctor for me and I have to agree.

The other piece of information was about my chemo. I guess I was under the impression that some day I would end treatment. Everyone else seems to eventually be stable, or NED, or in remission. According to my oncologist I will be on this Navelbine regimen until it stops working. She will leave me on it for an indefinite period of time. Years likely. She thinks that eventually my cancer will build up a resistance to it, mutate and begin to grow again. When that happens we will try something else. I guess I hoped that I would be off chemo at some point. But that is not likely the situation. I am thinking about my quality of life. I have a lot. I feel good a great deal of the time. Sometimes I am tired. Sometimes I feel sick. Like now. But it is not all the time. I know there are people with HIV who require a lot of medication to keep them alive. You do what you have to do. Its my medicine. I pray that something better comes along so I can stop doing chemo. Who knows what the future holds. In the meantime I am here. Relatively happy. A bit disappointed. But I am here.

I think part of me knows that at some point my small army will grow tired of making meals and running errands. I wonder what happens then. You all have been taking care of me almost 9 months. I fear the future of chemo with the downtime and symptoms. How much of this can I do on my own?Something/Everything? Do you get more accustomed to it or less? I just think that a long term chemo means always having to ask for help. And I am so tired of that. It is embarrassing to ask for rides and meals. I am glad that the medicine may be able to keep me alive for years, I just wish it wasn’t killing me in the process. I hope I don’t sound ungrateful or dramatic. Honestly, it is just very hard to imagine this on a long term basis.

This idea of permanent chemo also perpetuates this idea that I am sick and dying. Both to myself and others. I feel a compulsion to tell people I am still in treatment when they say I look good. I still have cancer. I am not healed. I am not better. They poison me once a week to look this good. I get a lump in my throat. I do not want to feel like a victim. I do not want pity or even sympathy. So why do I rush to say I am still sick? I have talked about this with close friends. Spiritually it is not good to cling to this I am a cancer patient mentality. I need to put that out of equation. When will I feel like a survivor?

I need to go rest. That was too much thinking and typing for this chemo chick. All my love Andrea.

7 Responses to “Chemo chick”

  1. Renee Khan says:

    Andrea I hear you. I really do. It is difficult. I am in the same boat, with a couple of big exceptions. I have not got young children and I am 51. You definitely have more of a rotten deal.

    I don’t think it necessarily gets better. I don’t feel like a survivor but I am enduring this.

    Please take care of yourself and don’t feel bad. This is our life now, but we didn’t ask or make it this way. Take care.

  2. Donna Arnold says:

    Andrea:
    Hi from SC. Have you ever heard of a Neti Pot? Its a ceramic pot with a pointed spout to it. Anyway, its used to “clean” nostrils and sinuses out with regularly. Look it up online to see what it is/how it works…might this be something for you to think of if your sinuses get that way again???? Just some FYI
    Cat will be on some form or another of chemo the rest of her life. When one regimen fails to keep new cancer at bay, she will have another round of some type chemo. We spent Monday at the Oncologist’s….she felt “poopy” and drained…her potassium was 3, is supposed to be 5. She is taking a “horsepill” for it. She also got a liter of IV Fluids to see if they could stimulate her BP (was 86/50). Anywhoski, she feels some better…she says when she feels bad or has GI Upsets, that means the cancer is leaving her body, and she says “Flushhhhhhhhhhhhh” to it.
    None of this helps you to find any answers…..but maybe it will offer support that other folks are dealing with issues, and the fight is not without them…does this make sense to you, hon?
    Know we hold you up in prayers regularly….and keep on fighting, girllllll!
    Have a good weekend….we have the dreary, chilly rain as well….I am so ready for spring. Of course, we have relatively mild winter here anyway…I love that…..I HATE cold, snow, ice…..hugs form us in SC…Donna & Cat

  3. Michelle from North Tonawanda, NY says:

    Andrea-

    I just wanted you to know that everyday you are with your family showing them your strength and love, you ARE a survivor! You will continue to do what you do best, raise your kids, and find beauty in each and every day. There is something spiritual about that….being grateful, and humbled by your wonderful circle of friendship and support.
    Please know that there are many like me, who will probably never meet you, but will continue to keep you in my prayers for recovery and joy and health for you! You deserve to raise your children, you deserve to spend time with your husband, and family, you deserve to live your life!

    Know that you will continue to be kept in my prayers and sending good, healing thoughts your way daily!

    Stay warm-spring is right around the corner for us Northeasterners!

    Be well and find joy!
    Michelle

  4. Lin says:

    What a kind Lady Michelle is!

  5. Linda, Palm Harbor, FL says:

    Hi Andrea,
    I sure wish I can send the Florida weather your way. If you ever feel a need to get away, my place is always open. (I truly mean this) I have a second bedroom (full size bed) and also a pull out couch for anyone else you would like to bring. I know airfare is not cheap but if you search on the internet, you can sometimes get pretty good deals. I am on the west coast of Florida, near Tampa. So, please feel free to come and relax in the Sunshine State (even it’s for a few days) My community has a pool and I’m very close to Clearwater Beach. I would love to have you stay here with me, so please do not hesitate to contact me.
    Anyhow, I feel so bad for you what you are going thru. I’m so glad that the “gooky thing” came out. It’s funny how the body works when you need to get rid of something, it usually happens! I will be keeping you in my prayers for your upcoming pet/ct. I am a diabetic too, and I know how trying it is to control your sugar count, especially since you are not a “normal” diabetic. I applaude you for all your trials in getting it under control. I am so happy that your pain has decreased. Like you said, this is a good indication that the chemo is working. God Bless you sweetie, I pray for you all the time. Linda

  6. Julie says:

    I’m not going anywhere sweetie!

    Listen, while it’s been a million years since I’ve practiced, I have studied Shiatsu (accupressure). If you are ever in a position where accupuncture isn’t available to you, I’d be happy to come by and see if Shiatsu will help.

    Love!

    Juls

  7. joshua says:

    you hit me on many levels on this post. and i can’t believe the snot scab! that is totally gross!