Salvaging Treatment

On this morning, when we are celebrating me sleeping all night plus one entire hour on my tummy, let’s review what we have learned:

1. Cancer is scary. And exhausting. And annoying.

2. Ovarian cancer is a “chronic cancer”, like leukemia and some lymphomas, so that it it is really, really likely to come back. The American Cancer Society says that it “can be closely watched and treated, but sometimes it never completely goes away”. They say, like the doctors, that the “cancer may be controlled with treatment, meaning it might seem to go away… and it doesn’t grow or spread as long as you are getting maintenance treatment. Sometimes… you can take a break until the cancer starts to grow again. But in either of these cases the cancer is still there – it doesn’t go away and stay away – it’s not cured.”

3. When we finally finish week two and head into week three where I feel better, it turns out I get pretty snarky in my writing tone. I think this is my resilience rallying, my determination finally getting a grip, or some part of me being relieved to know we have made it through the other side, again.

4. There are two kinds of remission: complete and partial. Complete remission means nothing at all is showing up in scans or blood work, for at least six months. Partial remission means 50% improvement in lab work and/or reduction in measurable tumor, for at least three months.

5. Ovarian cancer usually has a pattern of recurrence and remission, so there are lots of treatments (not just chemo) to control the cancer, relieve symptoms, and allow me to live longer.

6. Recurrence is not my fault. It doesn’t happen because I did something wrong or failed to do something I should have done. Just because I had some treatments two years ago and now it is back full force does not mean I did something wrong back then or now.

7. When cancer comes back, it is called “recurrence” or “progression”.

8. No matter where cancer shows up in me, it will always be called ovarian cancer because that’s where it was first.

9. When cancer is being controlled by treatments – like surgery, chemo, nutrition, medications, clinical trials and that medication, etc. – it is called “stable”. When it is stable long enough, that can lead to “remission”. It takes five years of remission to be “cured”.

10. Chemo can be given in regular intervals to keep the cancer “stable” (to stop it from progressing), but over time this can cause resistance in some cases. Sometimes chemo is only given when cancer becomes active again.

11. Monitoring is the regular checking on cancer, through scans and vitals and lab work. For me, this includes the fancy clinical trial orbit bracelets we will get to wear. This gives me an illusion of safety and freedom, allegedly, because we can be immediately alerted to any changes in vitals, and so tackle treatment preemptively instead of only being on the defense.

12. Palliative care doesn’t mean I am dying. Palliative care treats symptoms I experience, rather than treating the cancer itself. Nutrition for energy and wellness, pain medicine, breathing exercises for pain, medicine for nausea, vitamins and medicine to fight fatigue, medicine or oxygen for shortness of breath, anything that keeps down fevers, all of that counts as palliative care. Some people call it “supportive care”, and we just usually refer to it in general as part of our treatment team because it’s just another part of treatment and always a part of my handfuls of pills.

13. Treatment options depend on insurance and/or money. I will have insurance as long as I can keep my job, but not working enough hours means I will have to pay for it instead of my company paying for the insurance, which means half of what money I do make goes to paying for insurance instead of bills, which leaves little for extra treatment options. Already we have been so grateful for my benefits, though, as much of the palliative care – not counting paying for surgery or even just $250 in lab work twice a week – would not even be possible without the benefits provided by my office, which is more than most provide.

14. More than 70% of ovarian cancer patients never go into remission after they are diagnosed and so do not survive. For the 30% of those who do go into remission, half of those have a recurrence within two years (lucky me). When you have recurrent ovarian cancer, and have to have a second surgery and treatments again these two years later, it is called “salvage chemotherapy”. I think that makes me sound like a junkyard. Texas oncology, who may now own the rights to my rope of rocks, says that “the average duration of survival after recurrence of ovarian cancer is about 12 to 18 months. Fewer than one in ten patients survive beyond 5 years following standard salvage chemotherapy treatment.”

How does less than one in ten survive? Is that like half a person? Will it be my top half or bottom half? My left half or my right half?

15. They say fighting depression through this is a biggie. That’s part of the focus on wellness, as the better I can feel the better my body can cope with things, whether that is treatments or daily meds or enduring such an emotional process. They tell me to eat well and exercise, to stay relaxed, to let friends cheer me up, to be aware of fears but let them go, to express my feelings to my friends and loved ones, focus on a positive attitude, and to enjoy the present moment.

Basically, it means that for the next five years I am supposed to try not to be depressed about my good days feeling like a really bad flu and the bad days being really bad. The flu for five years? I don’t have to fake-enjoy that, but definitely can appreciate that every day is a miracle, and that every day is one day closer to the magical five year mark.

This is what the pamphlet they gave me says, also on the ACA website:

Living with cancer is not so much about “getting back to normal” as it is learning what’s normal for you now. People often say that life has new meaning or that they look at things differently now. Every day takes on new meaning.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. It may mean fitting cancer treatments into your work and vacation schedule. It will mean making treatment part of your everyday life – treatments that you may be getting for the rest of your life.

Living with cancer is not so much about “getting back to normal” as it is learning what’s normal for you now. People often say that life has new meaning or that they look at things differently now. Every day takes on new meaning.

Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. It may mean fitting cancer treatments into your work and vacation schedule. It will mean making treatment part of your everyday life – treatments that you may be getting for the rest of your life.

It’s normal to feel sad when you find out that the cancer cannot be cured. This sadness may not go away, even if you know that there’s a good chance you can live a long time with cancer. You now know that your life is likely to be shorter than you expected, and that you may have limits on what you can do. You may find yourself grieving the loss of what you thought would be your future. Cherished dreams and milestones suddenly become unlikely. This is hard for anyone to handle without emotional support.

I have been flooded with support, as has my family, and we are so grateful.

The card my visiting teachers left yesterday quoted my patriarchal blessing, even though they thought they were quoting D&C 84:88.

And whoso receiveth you, there I will be also, for I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up.

Posted in Healing, Health permalink

About Emily

I am a member of The Church of Jesus Christ of Latter-day Saints since 2009. I serve as a Chaplain, and work as a counselor. I got bilateral cochlear implants in 2010, but will always love sign language. I choose books over television, and organics over processed. Nothing is as close to flying as ballroom dancing - except maybe running, when in the solo mood. I would rather be outside than anywhere else, especially at the river riding my bike or kayaking. PhD in Marriage and Family Therapy, and currently doing a post-doc in Jewish Studies and an MDiv in Pastoral Counseling. The best thing about Emily World is that it's always an adventure, even if (not so) grammatically precise. The only thing better than writing is being married to a writer. Nathan Christensen and I were married in the Oklahoma City temple on 13 October 2012, and have since fostered more than eighty-five children. We have adopted the six who stayed, and are totally and completely and helplessly in love with our family. Nathan writes musical theater, including "Broadcast" (a musical history of the radio) and an adaption of Lois Lowry's "The Giver". He served his mission in South Korea, has taught song-writing in New York City public schools, and worked as a theater critic for a Tucson newspaper. This is not an official Web site of The Church of Jesus Christ of Latter-day Saints.

Comments

Salvaging Treatment — 2 Comments

  1. Question here: Since your cancer was “already dead” as you put it, and they got it all (last I read), how does that change the outlook for your health? I am praying with all my heart that things work out so that you can be well, live a long and happy life, and adopt those sweet children. It’s weird, because we’ve never met, but I’ve been following your blog for years, as well as reading your articles, and I feel like I know you. I hope you don’t mind my asking.