I want to preface this post with this: I am grateful everyday that I am still here.
My oncologist's office is near here . . . Third Street Promenade in Santa Monica. I always stop here at a favorite lunch spot . . . try to turn oncology appointments into a fun outing . . . 🙂
And now . . . something I don’t like to talk about . . . that fact that I experience pain everyday. Ever since chemo and radiation and all of the surgeries it has become what is normal. So now, it is just simply a matter of degree . . . it is either a bad day or a not so bad day or one of those days where you are so distracted by something beautiful or wonderful or fun that you forget your pain. That is what “post cancer” is like for me. At least right now. I have great hopes that I will be better with each passing day, week, month. And really, so much suggests that will happen. But, it is progress that feels very slow. I don’t know if I will be pain free one day, but, I hope that is possible.
But, until then, there are many things that help.
Laughter makes me forget the pain. It is truly good medicine.
Breakfast with a good friend makes me forget (thank you for that today, my friend).
Playing music and singing makes me fo
rget.
But, tonight I am worried. Tonight I am experiencing another type of pain from cancer: it is called FEAR.
A few weeks back a family member had a cancer “scare”. It was skin cancer, but, thank God, not the “bad” kind. And so a little surgery, a little reconstruction and a few weeks later he is all healed up and no one would be the wiser.
But, now this week, another person very dear to me was diagnosed with skin cancer. We don’t know yet whether it is the “good” kind or the “bad” kind. And, so we wait.
And just today I found out that someone else very dear to me, is waiting on test results for what might be cancer or might (hopefully) be something else.
I fear cancer more now than I ever did. I know what chemo is like, what radiation is like, what being made sick in the hopes of one day being made well, is like. And I know what life is like after cancer. And so when I think of someone very dear to me having to possibly go through that . . . I can not bear it. I am not saying that I wouldn’t be worried about it if I had not been through treatment myself. But, knowing what cancer can visit on a person makes it a whole different worry . . . to actually think that someone I care about might have to endure all of that is painful, frightening.
And, then there is my own fear for my own self. The fear I feel guilty for having . . . the fear of a recurrence. It is something that comes and goes . . . some days it is on my mind and some days it is not. I feel guilty for having that fear because I know so many people who have had a recurrence, who have terminal cancer, who will never end their treatment because treatment is what keeps them alive.
So my fears seem pretty petty when I look at it from that lens. But, these are real fears to me and yes, I feel guilty for feeling that way . . . almost like I feel sorry for myself. I hate that. I don’t like feeling sorry for myself. But, fearing a recurrence seems somehow akin to self pity, feeling sorry for myself, feeling like a victim . . . and that, to me, feels wrong. And, it definitely feels like a waste of time. But, sometimes it is just there, that fear, and there is little that I can do on those days to get rid of it.
Monday I see my oncologist because there is something on my right breast that does not seem normal. Some red spots. Maybe it is a rash. There is also a new pain in my right breast. Which, if you think about it, seems really odd since I don’t have breasts any more so why would I feel pain inside, where my breasts used to be . . . both were removed and replaced with implants . . . and as far as I know, implants don’t feel pain. So I don’t get it, don’t understand why I would have pain there where there is nothing that belongs to my body in that place. But, it hurts. And there are some red spots. Hence Monday’s appointment. (Oh, and just as an explanation for those of you reading this who have had breast reconstructive surgeries . . . I am used to the pain at the scar sites, but, this is different. Maybe this new pain is even normal. Who knows).
Maybe it is just a rash and maybe the pain is from something I did physically different this past week. I don’t know. But, my oncologist, who is going out of town for ten days, wants to see me before she leaves. She told me to either come in today or on Monday. I am angry and I am afraid. On the one hand, I am grateful that she is so accommodating and that she is able to see me before she goes on vacation.
On the other hand, I am alarmed that it can’t wait ten days. Or, why can’t it wait until my next scheduled appointment in February? Nope. I see her Monday.
A friend of mine has offered to drive me to Santa Monica on Monday (my oncologist is in Santa Monica). At the time she offered to drive me, I almost turned her down as it really didn’t seem necessary. But, now, as Monday looms and I have had a chance for my oncologist’s apparent urgency to see me to sink in, I believe that by Monday I may very well be a basket case. So, I am taking her up on her offer of a ride. And, we will make it fun. Santa Monica is a nice place to visit. We have a few favorite spots to eat, to window shop etc. There are some good distractions at the Third Street Promenade.
A rash. What a bunch of nonsense this whole cancer fiasco is . . . that some pain and a rash cause such a degree of alarm. God, I hope it is a rash.
That is what I hate the most about cancer . . . the fact that what might just be a rash stirs up all of THIS. A rash. Pray that is a rash, will you?
And pray that my friends waiting for results both get good news too.
Damn, fucking cancer. Fucking cancer.
I know, not the best language. But, sometimes that is the only word that works.
Thank you for your prayers and positive vibes.
Love and peace,
Lisa
cancerfree2b 
LIsa,
Praying, sending Reiki, lighting candles, etc. How is your race training going?
Love you lots,
Sandy
Awe, thank you Sandy! I really appreciate it!
Training is going is spurts. I haven’t run in a week. But, I am walking when I am not running. When I run the muscles in my chest (the ones that were moved from my back to the front during the lat procedures I had) tighten up quite a bit and that is painful. So, the running part isn’t going so well. But, I have a few ideas . . . I might try taking a mild muscle relaxant prior to my next run (I have some medication for this very purpose to take at night when that area feels especially tight). So I am going to try taking a small amount prior to my next run (which will be after I see my Doc on Monday). I am going to run it past her first. Although I doubt she will have a problem with it.
So much for a runner’s high 🙂 LOL . . . I will get mine on before I even start my run . . . I am KIDDING of course!
Thank you for your message, the prayers and Reiki . . . it is all appreciated.
It occurs to me that the discomfort I am having in my right breast could be after affects from the radiation . . . I recall that I was told that your skin and muscle (that has been radiated) will continue to change, tighten etc. for the rest of your life. So maybe it is related to that.
Anyway, staying positive for now.
Love you lots too!
L.
I’m running off to the mountains tomorrow, where I won’t have internet access – which means I won’t hear how your doctor’s appointment goes until later. I don’t get cell reception up there, either, but I can receive texts. *hint, hint*
Still praying. 🙂
Love,
Sandy
Oh Lisa. It does suck and you are absolutely justified in your feelings of worry, fear and frustration. I honestly think it would be abnormal to not have these misgivings.
If it’s any consolation (regarding the new pain you are experiencing), when I had my onco check up last week, I too expressed concern over pain in one (of my two) removed breasts. He said that it was very common for the severed nerves (from surgery and/or lymph node removal) to continuously try to reroute or knit them selves back together for years after surgery – and that this process often causes discomfort or pain.
Sending you all my best on Monday, and for Christmas and New Year’s my friend!
2012 will be better…I just know it!
XXXOOO Kimberly
Dear Kimberly,
Thank you for your comments. I am now having pain in my back which to me suggests that it may be nerve pain (since I had muscle removed from both sides of my back for the reconstruction). Also, the pain has migrated to include my left breast (reconstructed breast) now. So, that makes me think that it is perhaps just new pains associated with all of those severed nerves trying to reconnect. The weird thing to me is the depth of the pain and that it actually goes well into where the implants are . . . that doesn’t make sense. But, I know that people can even have phantom pain in body parts that have been removed . . . so who knows what it is.
I was more worried when the pain was isolated to my right breast since that is the side where I had cancer.
On another note, I learned something pretty amazing today . . . that cold pressed, extra virgin olive oil has been shown to suppress HER2Neu cancer. Is that unbelievable? I saw this on Doctor Oz, there was a doctor on that referred to a study showing this effect and based upon that he recommends 2 to 4 tablespoons of cold-pressed, extra virgin olive oil every day as a preventive measure.There were two different components that were credited for having this effect on HER2Neu . . . I am going to look into it further, but, one was oleic acid. And, it is also found to help prevent colon cancer as it has to pass through the colon. Amazing.
Anyway, I am going to search for the study or studies on this and I will forward it to you when I find out more. I am just amazed. How incredible would it be if that could help reduce our risk of a recurrence?
I hope you are doing great. We have to get together soon!
xoxoxo
L.
Lisa –
How was your onco appointment today re: the rash and pain you’ve been experiencing?
We are walking this path with you my friend 🙂
Kimberly
Dear, dear Lisa,
I’m sending my love, prayers and blessings to you. How I wish I could instantly take away your fears and your pain. Please don’t waste energy feeling guilty just because someone else may have it worse. Don’t negate yourself or your experiences. You’ve been to Hell and back. Of course it sucks–you don’t deserve this. I think God/Goddess or his/her helpers were asleep at the switch to let even a hair on your head feel pain.
I like what your doctor said about effects of radiation. Or could it be phantom pain like some who have had a limb removed experience? And your doctor’s rush for Monday may be her experience with cancer patients’ fears.
With wishes for good, clear explanation,
Love and peace,
Sally
Dear Aunt Sally,
Thank you so much for your prayers and wisdom. I sometimes feel as though I can’t write here any more because I don’t want to burden people I care about and also because I don’t want “the world” to know that I have some bad days. I fear that I will have less invitations and less opportunities if I tell the truth about my every day existence. It just is what it is.
I woke up feeling bad today. But, today I am playing bass and singing a little in our band today. I look forward to that and I will most likely feel good once I get caught up in playing music. It really does help. Although at the moment I would just like to stay in bed 🙂
I am not sure what is normal for this time out after treatment. And, the fact is I am still in treatment (Tamoxifen) although taking Tamoxifen hardly seems like treatment when compared with chemo and rads and Herceptin. Still, I think Tamoxifen contributes to my pain.
I do have lots and lots of good days. Mostly those are days when I wake up right if that makes sense. Today I did not wake up right. I am in pain and this time I am angry about it. I need to get rid of that . . . the anger part. I don’t have much control over the pain part, but, I could exercise more control over the anger part. It just doesn’t help me to feel angry about it, I think it truly just makes it (the pain) worse.
So, I will work on an attitude adjustment this morning. 🙂 Maybe I need to get some help with that – try meditation or something. I did meditation (with the guidance of CDs) quite a bit during chemo and post surgery days when I was in extreme pain and it did help to calm things down. Until just now, I had completely forgotten about those CDs. I think I will have to start using those again.
And, maybe right now I just need some coffee 🙂
Thank you for your prayers and love. I send it all back to you.
Much love always,
Lisa
Oh Lisa, what can I say? I understand about your pain, it’s our new normal isn’t it? I understand about your fear. I will be thinking of you on Monday. Sending you positive vibes and prayers for sure. And cyber hugs. And I agree, sometimes those words you chose are entirely appropriate. Hoping you (and your friends too) get good news.
Hi Nancy,
So you have pain too? I am sorry. I presume you do having been through all that you have been through. I wonder if it will get better over time? For both our sakes, I hope so.
Thank you for your prayers and positive vibes, I really appreciate it. And, I really appreciate your good wishes for my friends. I am, of course, hoping for the good news!
Thank you again for your comment and for your prayers.
Hugs back to you!
xoxoxo
Lisa
Your fears? I don’t blame you. I would feel the same way. Projecting the “what ifs” all over the place. I just wanted to say I will be thinking about you tomorrow……
Love,
AnneMarie
Thank you AnnMarie,
You are very sweet. Thank you for your kind words, I really, really appreciate it!
Love,
Lisa
I’m sending mega prayers and wishes that it is indeed a rash, and I so hear you about this twin set of fear and pain/discomfort. One just loves to feed the other.
I am thinking of you and waiting for news (the news we want to hear) from you.
I have also been visited by the Fear Monster these past days and been in a darker space. Bleurgh. (My post this week is very similar to yours in fact)
Take good care and keep your eye on the music
Big hugs
P xoxox
Awe, Phillippa, I am sorry you too have been visited by the same fear ogre this past week . . . I will read your post right away. I have been shamefully remiss in reading blogs lately. It is a busy time with my work right now and so I have not been keeping up on blogs or any of the other pleasure reading I usually get to do. I have so much to catch up on. I look forward to reading your post (except that I am sorry to hear that you have had a tough time lately too).
Thank you for the “mega” prayers! 🙂 I really appreciate it!
I am feeling more optimistic about the appointment tomorrow. I don’t know why. Although maybe it is because I played a gig today . . . funny. I woke up feeling miserable, then went to play my bass and sing for a few hours and while I don’t feel physically so hot, I feel a lot better mood/anxiety/fear wise. Music is a wonderful thing, heck anything that takes us out of our self I think has a good affect on one’s mood.
I hope you feel less fear soon and I am sending “mega” prayers your way too!
All the best in health,
Lisa
Am thinking about you and still sending tons of love and health to you. Today was monday and you are on my mind.
Laura
Dear Laura,
Thank you so much for your message. I always keep you in my prayers and am always sending positive healthy vibes and love your way!
Thank you for thinking of me today!
xoxoxoxo
Lisa
Hello Kimberly,
I tried to reply directly to your latest comment, but, for some reason on WordPress (or at least my blog) I can’t reply to a reply of a reply (LOL).
The appointment went fine, as in: it went as I expected. My doc ordered a breast MRI and said “hopefully it isn’t anything and it is just something you are feeling”. Hmmm. Well, it is not like I expected anything else from her. She can’t know if there is a problem without doing imaging. So that is where it stands at the moment. And, I am grateful for her responsiveness. I know a woman who – after a breast cancer diagnosis, having completed treatment and recovered from it – had a “rash” that her doctor treated as a rash for four months before finally thinking that it should be investigated further. In her case it turned out to be a recurrence of cancer. She is fine now. But, the delay meant that she lost more tissue than she would have if her doctor had been more proactive.
I really don’t think the rash is anything other than that . . . a rash. As today it seems to be less noticeable. We don’t have an explanation for the pain as it is a different and new pain. But, it doesn’t have to be anything other than simply that – a new and different pain. Isn’t this fun?
I so appreciate your comments and concern. I know that you know first hand what all of this is like. As you will see from my latest post, I saw a mutual friend of ours today. She had her surgery today. She was in great spirits . . . she really is amazing.
Oh . . . I just now received your email!!! Thank you so much! As I have to pack up right now and head home (I am still in Santa Monica) I am going to reply to your email later. So glad to hear your wonderful news and can’t wait to see you! We have a gig this coming Friday (December 23rd) . . . would be great to see you. Either way, we will get together soon!
xoxoxo
L.
Oh, Lisa, I am so sorry you’ve been going through this. I still have pain every day, mostly from radiation, mostly in my shoulder & chest muscles, three years later, but it is definitely much, much better than it was. And the tools I have to relieve it work better now. But there’s no reason to feel guilty about fear of recurrence. It’s a possibility we all have to live with. Forever. It doesn’t indicate self-pity, not at all. It’s something every cancer patient lives with, and especially those of us with breast cancer, because breast cancer is one of the more devilishly recurring kinds of cancer. It’s why I’ve called it The Stalker. I can say that I feel less fear now, or perhaps it’s just that I’m used to it, and I don’t automatically question every ache or pain that comes up. But I am still ever vigilant, because I need to be. And anytime I get news about another friend with a new diagnosis or a recurrence or mets, I feel the fear all over again. Because I know. Because we all know.
And we all understand. xoxo, Kathi
Oh I am so sorry that you too still have pain so long out. Thank you so much for your message and for sharing about your experience. I love your blog! I am hoping to catch up on some reading this week (I haven’t been able to spend much time doing that lately). I hope you feel well and am glad to hear that the pain is improving over time.
Thank you for your kinds words and support.
All the best to you!
xoxoxox
Lisa