Reality checks can be tough

[curlysue50]

I have been feeling pretty good. Not completely back to my old normal self, but good for my new normal self. My family has been encouraging me to stay busy and offering suggestions.

Some of the wonderful folks on this site have also offered me ideas on how they filled their time. I have been feeling a bit unproductive and even bored some days. So, I started looking for something. I found a couple of classes at my local wellness center. One was a light exercise class especially for cancer survivors who are currently in treatment or finished with treatment. The other course was a beginners Yoga class. Each was only once a week, in 7 week sessions for the summer. That would be perfect! Or so I thought. I decided it would be smart to contact my oncologist to make sure such exercise would be safe for me.

His reply was a reality check for me. "Since we know you have multiple lesions at risk for pathological fracture, you should probably have a follow up appointment with an orthopedic surgeon to decide what sort of exercise is appropriate for you." I do have stage 4 adenocarcinoma. I have mets to much of my spine, many ribs, hips, and femurs. I have been doing well on Xalkori, but I remember my oncologist telling me even though at my 8 week check up that bone mets were stable, they did not know when and if they would recalcify. It is easy to forget the severity of your condition when you start to feel so much better. I know I have bone thinning, but since I have been feeling pretty good, have felt almost a "pressure to perform", if that makes any sense. Like I can carry my own heavy suitcase, or lift that extra heavy load of laundry. I felt so helpless when I had to ask for help during the period before my diagnosis and during 4 rounds of chemotherapy last summer and fall. I was constantly pushing myself to try and "get better" and do more for myself. It is really tough to admit there are just some things I may not be able to get back. Some things I might always need help with. It makes the CANCER seem very real again. I have not had any tears in awhile, but when I read my doctor's email, I could feel them well up. I guess there has to be an acceptance of my reality and it is okay to feel sad. It just really stinks.

Thanks for listening, I needed to unload on people who would know what I am talking about. Sometimes even when family members are well meaning, their words of encouragement seem so unrealistic. When you don't have "multiple lesions at risk of pathological fracture" yourself, it must be easier to see the positive side. I am sorry if I sound bitter right now, but I am. I know I will feel better eventually. And maybe after my orthopedic appt, the news will be better than I think. But, for this moment, I am really feeling the loss of my normal self. I will try to get used to my new cancer self soon.

Susan

[shineladysue]

(((Susan))), I've been reading your posts and I haven't introduced myself to you yet, but I already feel I have met you. I'm not a cancer patient, but lung cancer has changed my life for the past 11 years. I was caregiver to my husband until he passed (6 years ago) and my mom is now a 5 year lung cancer survivor ( currently NED). I've read a lot of posts from lung cancer survivors and I find yours to be very inspiring. You obviously want to get on with your life and not let cancer define who you are or to put limitations on what you can do, but just like any other medical conditions we may have, we have to learn our limits. I sure hope your appointment with the doctor goes as you hope and that your limitations will be few. You have a wonderful attitude and I enjoy reading you. I know you will find your "new normal" and will make the best of each and every day because that is the kind of person you are. Keep us posted and keep writing because you help others when you share.

Hugs,

Sue

[Janet B]

Sue,

The thing with this disease is that just when you think things are going along great, you get a reminder that life will never quite be the same. Friends and family just might not understand, especially when we look and feel well on the outside. But little things, like not taking a yoga class, or for me, not being able to enjoy a bowl of icecream anymore (Tarceva stomach) are just reminders of how our life has changed, of just what cancer has taken from us. The thing we have to do is to keep searching for new things that can replace those that we have lost, and to remember that it is perfectly ok to just sit back and enjoy life, we dont HAVE to be super women (or men) anymore. I have learned to enjoy the fact that I can ask my husband to do the heavy lifting without feeling bad about it! My kids are all coming home for the weekend, of course I want things to be perfect, but I know they wont be, I get tired, I cant seem to multitask anymore, but that is ok, we will have fun anyway. AND when things arent perfect, I can just play the cancer card! (The cancer card has become quite a joke in my family, and laughing at the beast makes it seem not quite so scary!)

As for the classes. I think it makes sense to check with your doctor first. I had mets in my spine also and had to get the go ahead from the doctor to do "gentle yoga" and then I discussed my limitations with the instructor before class so she knew not to expect me to do the moves perfectly. If the doctor says no, ask what you CAN do if excersize is what you enjoy. A lot of people in my support group do aqua aerobics, I think that is alot easier on the bones.

I am wondering if you are getting Zometa infusions (Calcium) to strengthen your bones?

I gently remind you, that you are new to this, so being sad and frustrated is completely ok and totally understandable, you will find your new happiness and you might even be surprised at how happy you can be.

peace

Janet

[Joppette]

Hi Sue,

Ah, my heart just resonated with this post. As I wrote in Wednesday's Air, it's almost like I had to have my doctor's permission to try to stop being who I used to be. Like you,

I felt that pressure to perform. Even if I was the only one putting the pressure on, I did. And yet? I got comments if someone saw me in town, like "wow, you must be feeling better, I saw you at the store, remember you were going to call me when you were better?" And that made me feel pressure. You know what I'm talking about? Our times when we feel better can be just a moment, or longer, but we are not in control of that. We have to accept that there are some things we can't do anymore. Or there may be things we can do but have to do them differently now. It's okay.

In your post to me you mentioned two beautiful cities on the beautiful lakeshore of Michigan! Ah, what a gorgeous part of the state it is. I so enjoy a trip down to Saugatuck, and further south. The trips north are beautiful too. Maybe if I don't feel well enough for the long trip up North, we'll make a shorter trip to your area.

As Janet said, it's okay to sit back and enjoy life. It sounds like we have the perfect weekend to do that. I only live 40 miles from Holland, so maybe I'll just make a trip there for a little 'great lake' therapy!

Judy in MI

[curlysue50]

Thank you all for the kind words of encouragement! They are so appreciated. I have always been tough on myself, to perform to be strong. Having cancer and asking for help when I need it does not always come naturally or easily for me. A matter of pride, I guess. Cancer is my opportunity for growth in this area. (Even though I may go kicking and screaming through the lesson.)

I found my source of strength and motivation today by sharing on this site AND by stopping in to see my friend Judy whose husband died of lung cancer and she is a breast cancer survivor who lost her upper left lung to a metastatic tumor. I have seen her at her work, she works at our tiny local grocery store, but I have not stopped by her home. I am a bit shy about stepping in announced. Most of my friends love it when I do, though. It was great to talk and share with a fellow survivor! We could talk about things not appropriate to share while I check out my groceries. She sent me so many nice cards while I was going through chemo. I had worked with her at the grocery at one time, so we have known each other for about 15 years. We never dreamed we would have cancer in common. Anyhow, we decided we are a couple of tough old broads! And I feel inspired to keep trying to do the best I can every day.

[curlysue50]

I forgot to answer Janet's question on Zometa infusions. I did receive them during each of 4 rounds of taxol/carboplatin chemo, but not since I finished end of October 2011. Looking back I am not sure how long they thought I would last and I did not tolerate the chemo well. I am only my oncologist's second patient on the Xalkori. His first patient did not get the significant response that I have had. I am sure we will be discussing what happens next after he sees my CT scan scheduled for June 11th. I will see my oncologist the 15th. And hopefully the orthopedic surgeon in the same time frame. They did not call me back today, but I will call again tomorrow. Then back to my oncologist for help scheduling if I can't make an appt on my own. I wondered about more Zometa, too. Hopefully I am in good enough shape to try and get my bones back in shape.

I am working on it!

Susan

[Janet B]

Sue,

I have been on Zometa for 5 1/2 years now. I started with an infusion once a Month, after a while changed to every other month and am now getting it every third month.

(my sister, who had breast cancer and the beginning stages of osteoporosis gets an infusion every 6 months) It would be worth asking your oncologist about.

I had one of those moments myself today. I tried to run some errands and by the third store I was leaning heavily on the cart to continue. I looked around at all the people who were running about smiling and full of energy, many of them older than me and felt so frustrated. good days, bad days, everyone has them.

Peace