Helpful Hints

After my last post, my friend Caren asked me to post about what things are helpful to a cancer patient. After reading the feedback from the last post, I am doing so now. There are a number of things that cancer patients, especially those going through chemo and have children, find helpful and appreciate during our journey.

1. Be specific. Instead of saying “Let me know if there’s anything I can do,” make a specific inquiry. Asking “When would be a good day to bring you dinner?” is much better. So is “I would love to watch your children while you go to see your doctor. When is your next appointment?” I know I personally am so overwhelmed by what I’m not getting done, so if someone puts a general inquiry out there I’ll tell them I’ll get back to them simply because I’m too overwhelmed to decide what’s important. By giving me a specific request for help that requires more than a yes or no answer, I can provide a response that is specific to me and the person offering help. The best question I ever got came from a homeschool mom I know whose husband is a pastor. She offered to have the youth group come and help us for a Saturday by spring cleaning. I will NEVER turn down an opportunity for someone to clean my house. I can’t stand the smell of most cleaners right now (they make me extremely nauseous) so that will be a huge help. My friends Kelley, Sue and Karena are always looking for opportunities to watch my sons. My friend Cathy always asks if I need a friend to go to my lab appointments. Cancer patients need help and we don’t want to bother people. By making a specific offer, you allow the patient to tell you what they need.

2. Send a card or e-mail. My friend Denise B. knows how to make me smile. A couple of times a month she sends me a handmade card (she loves to make cards and one day I’m going to have her show me how). They always come when I’m feeling especially low and they always cheer me up. She also asks about bringing us dinner. My Facebook friend Lisa, who survived ovarian cancer, messages me a couple of times a week to check in. She knows I may not be up to responding, but she sends me a quote or picture or just a heart with the word HUG to let me know she’s thinking about me. My BFF Sue posts inspirational posts on my FB wall. These acts don’t take more than a minute to do, but they mean so much to someone who is stuck in the house because they feel lousy post chemo treatment or, as in my case, stuck because my neutrophils (white blood cells that fight infection) are so low I can’t leave the house because I could get very sick.

3. Pray for us. I’ll be honest, there are times when, as I’ve told my friend Cathy (another cancer survivor), that I feel like a piece of gum that God scraped off the bottom of his shoe and tossed aside. Now, I know that’s not true. I have a very vivid image in my head that I lean on based on the Footprints story. Jesus and I are walking on the beach and right now we’re just sitting watching the waves because, quite frankly, that’s about all I can handle. He reaches over and squeezes my hand or give me a hug, but we rarely speak. We don’t have to. He knows how I feel and that there are times when I just can’t pray. The prayers of others have lifted me out of the dumps more times than I can count. You don’t even have to let someone know. As Nike says, “Just do it!”

4. Pray for our husbands or wives and children. As my friend Cathy tells me, husbands get our tears and fears. I can put a happy face on when I go out or when people bring us a meal, but he sees me during and after chemo when my body aches so bad and I’m so nauseous that moving in bed is a monumental effort. At this point, he is definitely being supportive husband as well as taking on the duties of both parents. He cooks, cleans, shops and is a caretaker, which is not a normal role for men. In many ways, his role in treatment is so much more difficult than my own. My children are young, but they know that Mom needs to nap and has a tough time doing the things she used to do. And they are tired of it. As much as I need prayer, they need it just as much, if not more. Family is my number two reason for going through the hell of chemo (not wanting to die is number one). I need them to be tough right now. It’s especially difficult for one of my sons who’s a control freak. He can’t control cancer and it drives him nuts. As a result, he controls everything else in our house which drives the rest of us crazy. Praying for our families is as important as praying for the patient.

5. Ask how we’re feeling. Now I need to put a caveat on this one: if you don’t really want to know or expect a blanket, I’m fine, don’t ask. I will tell people I’m very tired, been nauseous or that I’m feeling pretty good. If I say I’m tired, it’s fine to say “I hope you get some much needed rest soon.” If I’m feeling good, you can say “You look like you’re feeling better today.” I have no clue how to respond to someone who’s nauseous. My husband has resorted to saying, “Is it time for an Ativan?” which is the only anti-nausea medicine that works for me. My mom asks if I have enough 7-Up.

I can’t begin to count the number of people who have offered specific things or gone out of their way to try to make this journey easier for us. And they have, without knowing it, done these exact things. The most difficult thing I’ve learned is to accept help from others. I love to cook and it’s hard for me to accept a meal. I’ve always taken care of my kids and it’s tough for me to let others drive them places without feeling like I’m imposing. My friend Kelley tells me that’s what the body of Christ is supposed to do, take care of each other. And the body that surrounds my family is a living, breathing example of Jesus’ ministry in action.

For those of you who’ve stepped out and helped John, Kyle, Braeden and I, we cannot begin to thank you enough. You have helped us through a journey that we never wanted to take, but has shown us the kindness of both friends and strangers that we can never repay. Thank you and God bless!

What Not to Say to a Cancer Patient

Let me preface this by saying, I am not pointing to a specific person or event. People have commented on how I put a face on this awful disease and I appreciate that. This post is not meant to keep anyone from making conversation. What I want it to do is make people think before they say something. I’ve said some things I wish I could take back now because I realize just how (okay, chemo brain is setting in and I can’t think of the right word now) they were what I thought I should say rather than what the person needed to hear. This is not an attack, more of a suggestion.

I have been doing a lot of research about cancer, mostly because I’m stuck in the house and if I bake anymore goodies I will probably be the first person in history to actually gain weight while undergoing chemotherapy. I’ve seen how to cope, how to be a good caregiver, how to care for yourself, what to eat, survivor stories and the list goes on. What I’ve not seen in any great detail is what NOT to say to someone with cancer. Yes, there are some things that cancer patients would rather not hear, at least in my opinion. I did run this list past my friends Cathy and Lisa who are both cancer survivors, and they are generally in agreement with me.

1. “You look good.” Okay, this is a compliment and, yes, it’s nice to hear. However, there are many times when we are just putting on our happy face so others don’t feel uncomfortable. And sometimes I feel like people are saying, “You look good – for someone with cancer.” I know I look very different. My eyebrows are very thin, my eyelashes look like they’ve been parted in preparation for braiding. My face is very pale, unless I’ve just completed chemo, then I look perpetually flushed. I bought my wig before the chemo really kicked in, so now the hair color is too dark for my pale face. Sorry folks, I don’t look good. I just don’t look as bad as you thought I would.

2. “You’re so brave.” No, I’m not. I’m scared to death. I have the cancer monster sitting on my shoulder all the time and he chants in my ear “What if it doesn’t work? Your numbers are too high. You won’t see your boys get married.” However, I have two young sons who can’t afford to have a Mom show fear because they are scared enough as it is. My husband is now our sole provider and is often doing the work for two around the house so being scared around him is rarely on option. I hide it from my mom (or at least I did, the cat’s out of the bag now). So while I may crack jokes, find the bright spots in chemo (no shaving my legs for the time being) and smile, inside I am terrified that I am not going to beat the monster. And the monster knows it.

3. “Only ___ treatments until you’re done. Isn’t that great!” Yeah, I have ___ number of times to experience nausea, body aches, headaches, light sensitivity and wonder just how much more neuropathy my hands and feet will have to endure. I don’t focus on how many treatments are left, despite what I say. I focus on how I’m going to get through the next day, or on a bad day, hour.

4. “Spring will be here soon and you’ll be done.” Yes, spring will come with all its new beginnings. Even the cancer monster can’t stop that. As I said previously, I can’t even think past tomorrow. John is trying to plan an anniversary get-away for us in May. He doesn’t understand I can’t think that far ahead. I can’t imagine a life without it revolving around lab tests, doctor visits and chemotherapy because that IS my life right now. I know I should look forward to the future, but I can’t. It’s too hard. What if I don’t get better, then what will spring bring? I go through the motions, but it’s just too hard to think that far ahead.

5. “You’ll beat this and be fine.” This is the one I really hate. Aside from my friends Cathy and Lisa, I immediately tune out anyone else who says it, even my mom and husband. I don’t care that your friend’s cousin, the cashier at the grocery or the person in the other cubicle at work beat ovarian cancer. Statistics don’t lie. Statistically speaking at some point this disease will kill me. Granted it could be 40 years from now, but it probably will. Even my oncologist, who is an excellent doctor and does some cutting edge research, says there are no guarantees. Yes, some of this is the cancer monster talking, but it’s also the reality I face. And I will never “be fine.” I will forever be dogged by ovarian cancer. I will put it on every medical questionnaire I ever answer. My labs will always be done in the Outpatient Cancer Center at the hospital. I will always bear the scar of my Port-a-Cath and hysterectomy. While I may forget for an hour, day or even longer, I will never actually beat it. To beat it means it won’t come back and that may or may not be the case. Cathy and Lisa have every right to tell me this. They face the same future I do. And I value those words coming from them. They get it. My niece Brittany, unfortunately, gets it too. She just completed radiation for thyroid cancer. Unless you’ve had cancer, you don’t get it.

None of this is meant to be mean. I know people mean well and just don’t know what to say so they say these things. And that’s okay. But please remember that is always okay to say, “I don’t know what to say,” because most of the time I don’t know what to say either.

The Numbers Game

Cancer is a numbers game. While it is painful, scary and obnoxious, it’s also a game of numbers. And for me, that’s not a good thing. As my husband likes to say, “I didn’t marry you for your math skills.” Numbers make me nervous. We rely on numbers for so many things. They are WAY too logical for me. I like words. They have a lot more flexibility.

My life now revolves around various sets of numbers. The first is blood counts. Every week (and I mean EVERY WEEK), I trek 34 miles to the hospital to have blood drawn. Since my chemo therapy is on the 3-week cycle, two of those visits are just to check my blood counts. I closely follow my hemoglobin number (always low) which tells me where my anemia is that particular week, my platelet count (which tells me how my blood thinners are working) and my neutrophil count. For those not familiar with the chemistry of white blood cells, your neutrophils are the specific white blood cells that are the infection fighters. Those cells are key to chemo. And chemo is not kind to blood cells, neutrophils in particular. Mine are at .7 right now. Normal is 2.2-3.6. That might not sound like a lot, but it is. Low neutrophils mean you go on what I affectionately term “lock down.” I am confined to my cell (home) and not permitted to leave unless it’s to go to the oncologist or the chemotherapy center. It’s a lot like a prisoner in solitary being permitted to use the exercise yard with no equipment. You get out, but you’re still confined.

I follow these numbers because if they dip too low, I need additional treatment. When the red cells go too low, I need a blood transfusion. If the white cells don’t bounce back, your chemo gets pushed back until they do pop up. Then you get a wonderful shot right after chemo called Neulasta. It’s a neutrophil booster, but makes your bones hurt really bad. White blood cells are made in the marrow of your long bones (arms and legs) so you feel like crap from being poisoned, then you get something that makes your bones ache for a day or two. Ain’t chemo grand?

While I follow the numbers, my husband obsesses over them. He has them tracked on his phone. If he hasn’t heard from me on lab days within an hour of the blood draw, he’s texting me about the numbers. Once he gets them, he sometimes calculates the percentage gain or loss each week. This used to bug me, but I figured he is an engineer so he’s into numbers. Then I realized that since he can’t do anything to “make me better,” the only control he has is to track numbers. I’ve learned to just text them and graciously accept his help in keeping them straight.

Before you get chemo, you have blood drawn to ensure that your blood counts are stable. They also check to be sure that kidney and liver function are within acceptable levels. If everything meets acceptable levels, then you get your infusion and the whole 3-week cycle starts again. If not, everything gets pushed out until the whole mess starts again. It’s a lot like being on a merry-go-round that slows down, but not enough for you to actually get off.

There is one number, however, that I obsess over. Anyone who’s had cancer knows why I obsess. It’s my tumor marker. Ovarian cancer has a specific tumor marker called CA125. As a screening tool, it’s notoriously unreliable. Approximately 50% of the women with ovarian cancer will have a normal CA125 reading and about 50% of women without ovarian cancer will have a false positive. All kinds of things skew it, like inflammation, fibroids, benign cysts. Despite it’s unreliability, it’s the best we’ve got right now.

Initially, I thought mine was unreliable. Any reading less than 35.1 is considered normal. My first CA125 run on August 29th was 125. My Gyn told me not to worry since I had huge fibroids and he was fairly certain that they cyst on my ovary was benign. When the test was run again on October 12th at my pre-op visit, it had skyrocketed to 694.3. Obviously, I had a fast growing tumor. I’ve always tried to be an overachiever.

After my diagnosis, my oncologist explained that the CA125 would be a marker to track how my body was responding to treatment. He explained that the first reading would probably not be a good one since I was still post-op and would have lots of swelling. It did drop, however, to 252. Then it was stuck for the next 6 weeks. It actually went up to 258, then back down to 239.4. Despite his assurances that he was certain he “got everything” and had requested over 400 slides be reviewed from the organs and biopsies he had taken, I was certain the monster was still lurking in my body. The numbers game of tracking my tumor marker was becoming my obsession.

Yesterday, I made by every 3 week pre-chemo visit to my oncologist. These visits are usually the same. I answer questions about my side effects, how I feel in general and any new symptoms. My vitals are taken. My normally low blood pressure is always high, another number I obsess about since both my parents have high blood pressure. It’s the fear of the CA125. I was sure it was still elevated and I was going to face a CT scan earlier than anticipated (they are generally done after chemo). After this, I get to undergo yet another pelvic exam. These used to bother me. Now it’s alot like getting my teeth cleaned. It doesn’t hurt and I zone out.

Yesterday, my appointment was with the Physician’s Assistant, Liz. I’ve always liked Liz. She has a wonderful sense of humor and a gentle demeanor (unlike my oncologist). She came in and told me she had news for me. I prepared for the worst. As I said, numbers aren’t flexible and there is no play in the CA125. She then said some of the sweetest words any cancer patient can hear, “Your tumor marker finally dropped!” I bet my blood pressure dropped 25 points on the spot.

My CA125 number is now exactly where it’s supposed to be, slightly elevated. It went from 239.4 before Christmas to 52.6 last Friday. While it’s still high, I am exceedingly grateful to God, Taxol and Carboplatin for getting the number down. My hope is that is will continue to drop and by the end of this mess, it will be below 35 and I can try to get some semblance of normalcy back.

I still don’t like numbers. They are still far too logical and many times make no sense to me. But today I am blessed to have 52.6 be my number.