Wednesday, April 23, 2014

Everybody Poops, Except Chemo Patients

This may be too much information. I never would have discussed my bathroom habits in a public setting before I had cancer. But all those tests and doctors appointments seem to have decreased my modesty.

Chemotherapy treatment comes with a lot of side effects. Before I began treatment, I didn't realize how many different kinds of drugs there were and the different side effects that came with them.  When they told me I'd have sensitivity to cold in my hands, feet, and throat, I thought,"Sure, maybe wimpy old people get that, but not me". Sure enough, the morning after my first infusion, I woke up to a cold bedroom (we'd had the window open), I touched the metal bed frame, and it was painful!

Lately, the two side effects that have been bothering me the most are constipation and neuropathy. Of course this meant talking to my easy on the eyes, same age as me oncologist about pooping. He told me to take Senna and Colace every day for the constipation. This helps a little, but I'm still uncomfortable for several days after treatment and when things do start working, it's really painful. I sit on the toilet and want to scream, between the pain and burning sensation. Argh!

Then there's the neuropathy. It's been in my finger tips since my second infusion. Then last month, it appeared in my feet and spread through my whole hand. Great! Although it comes and goes, I now get to look forward to days when it hurts to walk or even just hold onto something. And the doctors' advice for this? Wiggle my toes! I found some exercises on line and am looking into acupuncture and special slippers and things, but geez Louise, wiggle my toes! That's the advice from my top-notch medical team?!

I know all of these things, including the blood clot in my leg, the pulmonary embolism in my lung, my first port that got infected, the high blood pressure, the nausea, the thinning hair, the perpetual runny nose, and the fatigue are all part of the package deal in fighting this terrible disease. But some days, I wish it was easier.

Related blog post from Dana Farber http://blog.dana-farber.org/insight/2014/05/is-chemo-working-if-i-dont-lose-my-hair/

Sunday, April 20, 2014

Stupid Things that Well Meaning People Say to you when you have Cancer

I have had lots of well meaning people say stupid things to me since my diagnosis. For the most part, it's not their fault. Unless you've had a late stage cancer yourself, you don't get it. Of course there also have been some comments that you would think common sense would prevent, but it doesn't.


1. You look great: Would you have told me I look great if I didn't have cancer? I'm not wearing any makeup, my hair hasn't been combed in two days, and I'm wearing my bathrobe. I look great? This goes in the same category as "You don't look like you have cancer". What is that supposed to look like? Tell me I look better than the last time you saw me, or you like my haircut, or I have more color in my cheeks than usual. But unless I look like I'm ready for a night out on the town, don't tell me I look great.

2. Think of how many lives you're saving: I tested positive for a gene mutation that increases your risk of stomach cancer to 80% (I'll blog more on that another time).  This has necessitated several relatives being tested. It has also been very emotional for me. During one of these emotional times a relative said,"Think of how many lives you're saving". I wanted to yell, "Most likely at the expense of my own! Why didn't I get a chance for preventative surgery? It's not fair and that was a stupid thing to say!"  This is somewhat of a unique situation, but I think that if you must say something, "I'm sorry you have cancer" is the only way to go.

3. You can beat this: Actually, barring a miracle, I probably can't. Beating this type of cancer at a late stage means living with it for five to ten years. That's beating it. "When this is all over" goes in the same category, because when this is all over, I'll probably be gone. When you say this, it only reminds me that I have a terminal illness, which is unhelpful since I've put a lot of work into changing my automatic thoughts from "I'm going to die" to "I have a chronic illness".  Again, I'm sorry you have cancer is acceptable. Or ask about the progress of my treatment, for some this might be unhelpful, but I'm perfectly willing to talk about it.

4. Let me tell you about my ________ who died of cancer: Ok, so maybe you know or knew someone in my situation, but especially with a rare cancer, this is unlikely. Even if it was the same type of cancer, no two cases are exactly the same. If your loved one was treated ten years ago at some rinky-dink hospital, their treatment and prognosis is not going to be anything like mine, as I am receiving the most promising treatment out there at one of the top cancer institutes in the world.  One of my colleagues told me about her friend and brother who both died of cancer. In detail. Then she said,"I'm certified in Reiki, so if you ever want me to bring in my table, I could do some Reiki for you after work." What? I'm not a Reiki Master, but I do know it's all about positive energy, and I'm not getting any from you.

5. Did you ever think this would happen to you: Sure. That's why it wasn't caught until stage IV. This is just stupid. Even though I've always been a bit of a hypochondriac, I didn't really think I'd have stage IV cancer. In this day and age, I thought all cancers got caught early. Again, just say,"I'm sorry you have cancer".

Ps. I'm not kidding, as I am typing this post, another relative passed on the message about my saving so many lives. Again, I appreciate the sentiment and they mean well, but I just want to scream, "Why didn't I get that chance!"