kellygullo's Cancer Blog
October 29, 2007
| FAITH AND HOPE… and worry, and stress and fear and craziness | Views: 887 |
I’m done with all my treatments! Hold the applause. The last day of radiation was not a relief for me. I don’t have that security blanket anymore of “doing something†about my cancer (which supposedly is “gone†according to my oncologist). Call me a pessimist, but how does he know that?
Now what do I do? I am driving myself crazy. I need to stay off the internet and away from any site that is remotely related to the topic of breast cancer. I am not talking about this blog of course. I think there is a lot of positivism on this blog that can help each of us so much. I truly hope I don’t scare some of you away for being a bit too open with my feelings. I have not been sleeping. I am researching and finding scary facts that are telling me things I don’t want to hear. All my internet browsing has merely only helped to conjure up all kinds of horrible thoughts in my head, keeping my awake at night so that I am walking around looking like Uncle Fester from The Addams family during the day (with those huge dark circles under my eyes from lack of sleep!). Now I have a bevy of concerns I thought I’d never have after treatment. And here they are:
Worry No. 1: I fear my tumor might not have responded to the last four treatments of chemotherapy (Taxol). I am er + – recent studies (hope not credible) indicate that sometimes my type of tumor doesn’t respond well to Taxol. Can someone please clarify this for me?
Worry No. 2: I also read somewhere that I could possibly be resistant to Tamoxifen. My tumor changed from being er+/pr+ to er+/pr- which in some cases is least resistant to Tamoxifen, and these types of tumors should take an aromatase inhibitor. If this is the case I cannot take an aromatase inhibitor because I’m still pre-menopausal. What am I supposed to do with this information? I asked my oncologist if I could have my ovaries removed. No – too drastic, he says. He adds that I wouldn’t like the side effects if I were to have this surgery – hot flashes, weight gain, mood swings. To be honest, I think I would deal with those side effects if it means saving my life!
Worry No. 3: I told my oncologist that I’m concerned because my tumor was a Grade 3… shouldn’t I be worried? “No – the grade is small potatoes†he says. “Stop reading things on the internet,†he says. Hmmm, if the grade is small potatoes, is the fact that my lymph nodes were positive also small potatoes?
Worry No. 4: Should I have faith in my doctor? So, what he is saying to me is that I should rely and entrust my life to his expertise and believe that he is right. He says to look at all the positives with my particular case. Although, I’m not sure what is positive about my case… since I have cancer, a relatively aggressive tumor, at a relatively “young†age, a cancer that “might†or “might not†have responded to chemotherapy, a cancer where the tumor may (or may not) have been large (long story… I’ll explain some other time), and a cancer that in my doctor’s words is “gone†– but may still come back because there may be other tumor cells lurking somewhere in my body that may or may not be resistant to hormonal therapy in my case. I’m trying to find the positives… maybe the Eeyore in me is just not looking hard enough? I think I just combined a few more worries into the above paragraph… but keeping my fears down to a total number of 4 looks better.
Am I being too negative? Am I being unrealistic? Or am I just plain crazy? Whichever you call it – I don’t want to sit back and “wait†to see if the Tamoxifen works. I don’t want to let things get too advanced when there might have been other preventative measures I could’ve taken. But then, I wonder if whatever happens is supposed to happen anyways. I wonder if it’s just a matter of fate. If I don’t survive this dreaded disease (God forbid) would it have mattered how aggressive I was in the first place? I shouldn’t be wasting my life – the life I have now – worrying about the “what ifs†and the “what might happens.†How does one get back into life and go on living without thinking about breast cancer 24/7?
Yes – I realize I’m obsessed. I can’t even enjoy myself at a girlfriend’s house for a pedicure party. I tried having fun on a family trip with my aunts, mom, sister and 20 other cousins, but I ended up crying in the middle of dinner because everyone around me is living their “normal†lives – and I can’t seem to get back to that way of thinking. Before cancer, I would’ve blended right in to the whole dinner scene… cracking jokes, laughing, having a good time with the rest of them. I can’t do this yet. What’s wrong with me? I would’ve had a fantastic time at my girlfriend’s pedicure party and not left early with the excuse that I was tired (I lied – I just didn’t feel like I fit in with these “normal†people’s lives). I don’t necessarily want to surround myself with only people with cancer either. I just don’t know where I belong or what to do with my new self. I am looking to figure out now how to live my new normal – and I have a feeling that won’t be for quite some time.
Maybe this is just the irony of everything I’m writing about, but my glass of water sitting here on the desk is half empty… or is it half full?
FAITH AND HOPE… and worry, and stress and fear and craziness, 
8 comments)
![[[photo:kelly]]](/cache/gallery_475486dfdfa80.jpg_128_0_1.png)
10.15.08 - 
Thanks for your support -
Kelly, I don’t think you’re being too negative. I think when it comes to cancer, especially an aggressive one, you can’t afford to be lackadaisical.
The cancer I’m battling has 70% estrogen receptors and 30% progesterone receptors. One of the first treatments the doctor put me on was tamoxifen. This was in January of this year. In June, the PET scan confirmed that the tamoxifen was NOT having any kind of affect on the lesions so I’m no longer on tamoxifen. As a matter of fact, my doctor thinks any type of hormone treatment won’t work for me.
The down side with bone lesions is that it’s hard to tell whether the cancer is progressing. That’s why, for me, it took five months to determine that tamoxifen wasn’t working.
Currently, I’m on Xeloda (chemo pills) and Aredia (bone drug treatment).
I was offered a chance to take Avastin but I passed. The side effects are so powerful that they made me uncomfortable.
I think, if I were you, I’d get a 2nd or 3rd opinion. I forgot to mention, my first bout with cancer occurred when I was 34…six years ago. These are hard decisions but always keep in mind that this is your life, so gather all the information you can, discuss with your family, get other doctors’ opinions, and then decide for yourself.
I wish you nothing but the best. My prayers and thoughts go with you.
Grace
Kelly, I know some times we have good days and not so good days. I know reading about other peoples bad days can get you down. Check and see if you can find a Group of gals that have had Cancer and have been able to go on with their lives. There are also some medical Centers that have support, for those that need to think positive. Also Pay it forward is a good way to help others.
Love Sherri
kelly i know how you feel but it will get easier i was just like you and sometimes it look like people gat mad or sick of me always talking about cancer now iam still scare special like days like today that i had a dr appt but now thear is days that i dont even think about it just pray a lot and have feaith
If you are uncomfortable with what your oncologist is telling you about the recent articles on the effectiveness of certain standard chemotherapy drugs, I would recommend getting other opinions. This past Friday, my oncologist and I had a long talk about the recent articles on Taxol that I was very concerned about. Taxol is one of the 2 chemo drugs that I am taking. My particular type of cancer is not the type that was mentioned in the recent articles. So, I feel much better now but you need to feel better also. Look for another doctor to talk to.
Kelly,
I can completly understand where you are coming from. I went through the same feelings when I finished Radiation treatments. I was sure that every three month appointment that followed would have bad news that it was back. My Dr. also kept telling me that I was reading to much internet and that for my own mental well being I would stop. Needless to say I didn’t listen very well and continued to research everything I could find until it finally got old. I took my own time in dealing with everything. To be honest its not over and it is two years this month that I was diagnosed and two years next month that I began with my surgery and then treatments shortly afterwards. This is truly the first time I have began talking about it all out in the open for various reasons. I think that the fact that you are coming on here and sharing your thoughts is a great step to your mental recovery. I think once all of the physical stuff is out of the way, the mental recovery takes much longer. My sister was diagnosed with breast cancer a feww weeks after I was diagnosed with Endometrial Cancer and I am constantly paranoid now that I will have breat cancer someday. So I am taking all precautions in early detection by doing mammograms every six months currently and after the next one every year. I know you most likely hear this from everyone but it really does get easier. I still think about it often and in some sense I’m still paranoid about the future but I know that I can not change what has happened to me. Each day does gets better, and talking about it as much as you feel you need to is not wrong.
Jessi
I know what you are going through and it’s only normal for you to have these feelings..
You just need to learn to be smart about your body and watch yourself.
You have done everything the doctor has said to do. I did everything my doctor has said for me to do. We just need to stay healthy and live each day like we did before cancer came into our lives.
Don’t search the internet for scary things, search the internet for ways to eat healthy and to keep your chances down for cancer returning.
Keep your mind on exercising and eating good. Don’t drain yourself thinking about “what if”..
I also think you should have a 2nd doctor look over your case if you aren’t comfortable with what your doctor has to say.
I am on Arimidex. I just found out the other day I am on that indefinitely which actually made me feel a little better. I have started drinking organic milk. It doesn’t have hormones in it. Some milks have hormones in them which makes estrogen. I have also been searching for products that are made without cancer causing agents.
This is how I keep up on keep myself healthy..
Please try not to let cancer run your life…
Just wanted to say hi and send hug’s
Sherri
Kelly if I were you Id get first a second opinion because it sounds like you have doubt with your current Dr. Next I would call your local hospital and see if they have ‘group’ therapies for you to attend. It really does help to talk to others in person what you’re feeling as they can relate, also I would ask your Dr. for some help with your anxiety. I have been where you are except my cancer is not curable, we just continue to have surgeries and chemo’s to try and keep it at bay. I finally asked my Dr. to help me. I couldn’t sleep, or get through the day without all these thoughts that you are having about did me in. He put me on Zoloft for my stress, and a sleeping pill. I now feel much better. Not normal as I know my cancer will never go away and I might not have a lot of time, but I am more calm now and enjoy more days than I have in the last 4 years of dealing with this before I started these medications and talking to others a group therapy.