Gotta keep on keepin' on.......

Cancer again...that's 3 times in 2 years. This time it’s not breast cancer, but a new one called squamous cell carcinoma. New cancer, same old fighting spirit! My blog is still named for one of many songs that kept me going the first time around. Driving home from an upsetting appointment, I turned on the radio just as this line from Steve Miller Band's Jet Airliner was playing: "I've got to keep on keepin' on"....so I did just that. And I'll do it again.

Tuesday, August 25, 2009

to catch you up on things....

Lots of exciting things going on in the house! Thought I'd share some new developments....

1) I started a homeopathic treatment for my cancer. John and I began researching alternative medical treatments a few weeks ago, since the medical doctors can't offer me anything else at this time. We figured, why not? At least we're doing something.

We found a homeopathic doctor not far from us. He also has his medical degree (internal medicine). He treats a wide variety of illnesses, from rashes to colds to cancer and other life-threatening diseases. I talked with a woman who had success with his treatment, and her cancer was very similar to mine (she had small cell carcinoma, I have squamous cell, but they're both in the lung cancer family). After being told she had very few weeks left, she tried his plan and is now "almost cancer-free". She actually checked out of hospice last summer. There was also another success story on the doc's website from someone in a similar situation as mine.

We faxed the homeopathic doctor my medical history, talked with him for over an hour on the phone, and within a day or two heard back from him with his treatment plan for me. This "protocol" as he calls it, helps strengthen my immune system, which has already been beaten down by the chemo and radiation. It also helps kill off, and stop growth of, the cancer cells remaining in my body.

I started his plan last week and it is pretty time-consuming, not to mention stomach-churning! Two liquid treatments, one of which tastes like watered-down, stale, bitter coffee, the other is chewy and tastes like grass. Just call me Elsie....MOOOOOOOOOOOOOO!

The remaining treatments are these huge horse pills that are sometimes hard to get down. All these liquid drinks and pills, I take at least 2, some 3 times a day. And with all that additional liquid (don't forget all the water I go through anyway taking these and my regular pills), I am in the bathroom almost hourly!

It is a big undertaking, but everyone is behind me so I know I can get through. I am continuing with hospice, and am still taking all of the medications prescribed by hospice and my oncologist, so I haven't dropped their treatment. This homeopathic protocol is taken on top of that. We are praying that it helps. I can't explain it, but I trust this doctor, and I have faith that this will help me. (Anyone out there a firm believer in the power of prayer, as I am, please say a little prayer for me on the new meds!)

2) Another new, more painful development is this shooting pain I get down the back of my right leg. The hospice nurses believe it is nerve pain. We've tried a heating pad, massage, warm shower, but no relief...suggesting it's not a muscle problem. The pain comes and goes, and it helps if I change position in bed or get up to walk a short distance to another chair. Often I am screaming (well, more like whimpering...don't want to sound too much like a cancer diva) in pain, until John gives me the fast-acting painkiller and within minutes the pain is dulled. That is one special drug, I am telling you!

They gave me a new drug that is a muscle relaxant (and fortunately is NOT another narcotic) to add to the many narcotics already in my 13-pill-a-day routine (that number does not include the homeopathic pills). We need to give it about 4 days to get into my system and then we should see results. In the meantime, I'm amusing myself and the rest of the family with my slurred speech and babbling. This new drug makes me so tired and loopy, it is crazy! I talk to people not even in the room. I close my eyes to nap and while dozing off, reach for something that's not even there. I am so loopy. I feel almost zombie-like, and that I'm acting like a drug addict.

I am to the point that John or someone needs to support me when I get out of bed, because my right leg is so weak and wobbly! My legs have actually buckled, too, which is pretty scary! So I hope we get this all straightened out soon.....

3) The other development is the most difficult for John and me: talking with the children. Emma and Leah have a pretty good grasp of what's going on with Mommy. All the kids are excited about my new medicines (the homeopathic stuff) BUT...I think they are banking on it too much as far as as it removing the cancer. Before that, when I was first home from hospice, they were encouraged because I was up and about and moving around. They figured because I looked better, then I was getting better. We tried to explain that it doesn't mean Mommy had gotten rid of the cancer, just that Mommy feels stronger from the medicines the nurses were giving her. The cancer is still there, we told them.

Jesse, at 3 years, has little idea of what's going on, just says "Mommy, you have bad cough?" or "Mommy, is that your medicine to make you feel better?". Then he'd run off to my table "wanna pinch a cookie from Mommy!" (I keep a box of sugar cookies and pretzels nearby, and I let him have one after his nap.) He's also fascinated with my "magic bed" and wants to ride up and down and get under the covers. He may not remember me well, but he might remember that bed!

Frances has always said to me, even before the first cancer in 2006, "I'll always love you even if you die and go to Heaven. And if Daddy gets us a new Mommy, I'll be nice to her but I will never love her as much as I love you!" Don't know where that came from. She has always had an interest in death and dying for some reason. But for this new cancer, she still doesn't get that Mommmy will probably die from it someday. But maybe that is how a 5-year-old processes things, living in the moment? I guess when the time comes, she'll deal with it then.

Leah doesn't want me to die, but she understands that one day I will. Like everyone will die one day, I tell her, we just don't know when our time will be. Only God knows; it is all part of His plan for us. She told me it would be different not having me here. She is also worried that she'd have to get a new mommy, and she doesn't like that idea. She and I have had some funny conversations about burials and cremation. She was surprised to learn that they don't take your bones out before they put you in the casket. I guess she thought dead people were deboned like a chicken before being put in the ground! She will be OK, I think.

Emma, however, is now afraid to go to school because she doesn't want to be away should I die. She understands that the new homeopathic treatment may or may not work, but is glad that we are trying something new. That gives her some hope. She prays about it every night, too. I told her that I wanted to have as many conversations and time spent together while we can, in case one day I do start to fade and sleep more and won't be able to talk much. She agreed. She's still upset, although we can talk about things much better now, "more calmly less teary".

It's the "where to take these conversations next, for all 3 girls" that John and I are stumped on. We've talked to the hospice's bereavement counselor, told her where we were in our conversations, and (I'm just bragging now) she thinks we're handling it perfectly. She agreed to come out and meet with the girls this week, to move things along. The hospice is wonderful; they start sending in grief and bereavement counselora not long after you come home to hospice. They'll meet with any family member you want, even relatives who happen to be visiting, and our nanny, and they've been a great help with the children.

7 Comments:

  • At 8/26/09, 11:16 PM, Blogger lahdeedah said…

    You amaze me, Katie. If that's your "loopy," you are one articulate, together chick :)

    Your love and your amazing ability to listen to your kids and respond to each one as an individual is a rare and beautiful thing. They are extraordinarily lucky to have a mom with such depth of spirit, love and understanding.

    I think of you several times during the day, Katie, and pray.

    Much love,

    Jill

     
  • At 8/26/09, 11:55 PM, Blogger Wendy S. Harpham, MD said…

    Hi,
    I was referred to your blog today. After reading only a few posts, anyone can see you've been dealing with alot for quite a while now(understatement of the decade).

    I'm a mom who has reared my children in the shadow of my recurring cancer. They were 1, 3, and 5 yrs old when I was first diagnosed.

    I suspect I was referred to your blog because I wrote WHEN A PARENT HAS CANCER. A GUIDE TO CARING FOR YOUR CHILDREN. In it, I devote sections to helping young children like yours in situations like yours.

    Some guiding messages:
    Always tell the truth, couched in love and hope.

    When the outlook is not good, you still can be both truthful and hopeful by helping the children understand the difference between what you EXPECT to happen and what you HOPE to happen.

    The greatest gift we can give our children is not protection from the world, but the confidence and tools to cope and grow.

    With hope, Wendy

     
  • At 8/27/09, 12:48 AM, OpenID throwslikeagirl74 said…

    Hey there :) I've actually been following your blog for some time, but I'm coming out of lurkdom to let you know that the Mothers With Cancer bloggers are thinking of you. Good thoughts and prayers for you as you start this next treatment.

     
  • At 8/27/09, 11:20 AM, Blogger laurie said…

    Laurie here from Mothers With Cancer (and Not Just About Cancer). Jill sent me here - I wanted to say that, as someone who has had to think about these issues, you are handling things beautifully. My heart goes out to you and to your kids and spouse. I can tell, though, that there is a lot of love in your family and that you and your husband are giving the kids what they need.
    And surprises do happen for all of us (my own liver was riddled with tumours just over two years ago and now I have been NED since June 30 2007. Noone was more surprised than my oncologist) - and I am fervently hoping that the alternative route provides you spectacular results.

     
  • At 8/28/09, 9:27 AM, Blogger Jayne said…

    Katie you are an inspiration. What more can I say? Thinking of you often, and appreciating the fact that you took the time to update your blog.

    Jayne

     
  • At 8/30/09, 4:46 PM, Blogger whymommy said…

    More hugs from the Mothers With Cancer. Wish I could do more for you, dear, and remove the pain.

    Love,
    Susan

     
  • At 9/2/09, 12:45 AM, OpenID toddlerplanet said…

    Katie, I'm thinking of you this week, and praying for you. I've heard such wonderful things about hospice; I'm glad it's good for you and your girls.

    -- WhyMommy, from Mothers With Cancer

     

Post a Comment

Links to this post:

Create a Link

<< Home