My Fight

I am reminding myself of the strength I know I have. I lost track of it for a while, not from being sick but because of my divorce, but it's still there when I need it most. Having doctors ignore me for the last 6 months while I try to tell them something is wrong has been quite frustrating. Being in an MRI tube for 6 hours two days ago put my mental strength to the test. The only reason the tears came after 5 hours is that I felt like I was ruining my daughter's day off with her boyfriend. Luckily, the staff let them know it would be a while, and they were able to go do things while they waited. Most of the time, I was comfortable except when I had to be on my side with my arm above my head. The pain began to be more than I could bear. Other times they had so many pillows propping me in positions I almost couldn't fit on the tube. The Valium wore off way too soon, but I was able to just blank my mind when it got too much.

I pray I am wrong about the feeling my cancer is back. With the series of events that have led up to this MRI, I really have lost faith in the medical field. Yes, in years past they are what saved my life, but only in my persistence to get 2nd and 3rd opinions when I didn't like what I heard or didn't feel it was the right course of action. My story has many, many medical blunders. I just hope the torture I went through on Thursday gives me some answers. If it's not cancer, then tell me WHAT it is, and not pass these lumps off as ... "I don't know, but I don't think it's cancer related."

Inner Pain

How do you get rid of pain that has been buried and ignored so deep within you that it has eaten away everything inside you including your soul?

Small Rant ...

As a breast cancer patient/survivor who has lost her breasts, I love Breast Cancer Awareness month because of the money it raises for research. It also reminds survivors we are not alone. But what really bothers me is women obsessed with their own breasts that say they support women of BC when they really don't give a crap at all. Just more of an excuse to promote their self obsession. I for one can do without the fake support, thank you.

Tears

Been crying off and on all week. My heart is breaking for a friend in hospice, regretting things I should have done. I feel so bad for Chris and Liz who have been best friends with her since childhood, and for her family who is suffering watching her suffer.

Selfishly this has been a wake up call for me. I have been so wrapped up in focusing on my problems and with this  marathon divorce I have lost the happy go lucky positive person I used to be.  I'm sick of being sick. I've been blaming the meds I am on, but I know it's mostly all me. I have to get back on a good mental and physical track. The depression I fight has some to do with it, but I have always been able to overcome. I just simply gave up the last several years.

I just wrote on Ellen's show page for survivors and broke down in tears again. I had to answer questions about my illness and give advice for someone about to start treatment. It hit me hard about how low my life has sunk and how I have allowed my life to move so off course! I used to be told I was amazing. I used to be there for women newly diagnosed. I used to talk to the other cancer patients while getting my treatments.
Now, I've pushed so many out of my life. I avoid people. I am a homebody. I sit and stay to myself in the IV room. Again, part of it is depression and losing my positive focus, but lately it's gotten to be I am ashamed of myself. My teeth are a mess from chemo and radiation and I'm ashamed to smile and laugh. I still can't find a dentist to help me. I have become so heavy and don't feel comfortable in clothes. I won't buy new clothes because I tell myself I will when I lose weight. I am ashamed to go out because I have no clothes to wear! Vicious circle I tell ya. I don't feel well and am tired all the time. If I exercised and ate right I would feel better. I over eat and don't eat the right foods because I have come to realize food comforts me. If I don't break these horrendous cycles I will never heal! I know what I need to do to get better, it's finding the motivation ... no, the mental strength to get there.

I have LIFE. Something I was told I was going to lose years ago. I want more than this. I want to start LIVING life. So many years in that chemo room I began to block out the pain and suffering that goes on there. Chris C's battle is more personal and has unblocked a reality to just how fragile life is.

Reading back over this, I even ramble in circles. No wonder I'm always dizzy.

Fight

Don't know what to do ...

I lose my health insurance in 3 weeks. Just reading over my disability and medicaid details. I can't make any income, so my new business is useless. I can't even figure out if I am allowed to receive alimony on it. I'm either going to be forced to live in poverty and have severely crappy health care that doesn't cover what I need, or try and actually live life... but die with no health care to cover all my cancer care costs. Does he care? Not at all. Of course his life (to him) is much worse off. I guess he is backing out on us staying married for me to have health coverage.

Honestly... I just fucking give up.

anxiety

Everything was going so good... except for being broke. But I was handling that pretty well. I read something last night and my world came crashing in. I am so hurt. I had anxiety all night, and now break out into tears when things are quiet and my mind isn't occupied with something else. Everything gets to me when I get down like this. I wish lack of money was my only issue. I'm having a PET scan on Tuesday on top of everything else. All I keep thinking is I'm going to die during a very ugly time in my life.

I am so proud ...

... of my babies! They worked so hard for the Cancer Foundation yesterday and are there again today! They worked from 10-4 yesterday, but shouldn't be there as long today. The CF is getting ready for a fundraiser so Zack and Meg had to fold around 3000 brochures, put those tape circles on 3 sides, print out the mailing labels and put those on too. lol There were two other teen boys there with them and every time Zack would bring another stack from the printer they would groan. *hehe* I asked if they wanted to work the check in tables with me and Rich the night of the event and they might do it. They have to have to have a certain number of volunteer hours to qualify for a scholarship I am having them try for... but I also want them to volunteer because it's the right thing to do.

I was telling Meg this morning I am signing us up to help with the set up of the ACS Making Strides walk. She asked what we would do. I said set up tents, tables, unload boxes of t shirts, and blow up balloons. We both remembered Zack HATES balloons and started to laugh. I pictured the event coordinator going up to him and saying... can you help fill balloons? Zack would scream.... noooooooooooooooooooooooooooooooooo! *hehehe*

Trying to get it together...

Making Strides is coming up. I'm trying to get a team together. This is the logo I made that will go on the team shirts. Knowing me I will probably change or tweak it before they are made... I'm never happy with what I do...





I'll be reopening Faery Wings soon and put that as a sponsor on the back of the shirt. A few recent events have made me realize I was too depressed to promote it, and I have a few doors opening.

I am also going to be doing some volunteer work for the Cancer Foundation. They are amazingly nice women who work there and gave me great information to get the help I need. Zack and Meg are going there this week to get volunteer hours. When I get a little money I'm going to donate items from Faery Wings for their auction.

It's past due time for a PET scan. I put it off because the co pay has gone up so high. But I need to get it done.

I'm so tired today. We all are. Just having a lazy day at home today after such a crazy busy day yesterday. I've been putting cold tea compresses and aloe on Zacks sunburn. My poor baby boy. Meg and Rich have headaches from all the crazy rides they went on. Serves them right for being such daredevils. lol I'm thankful Rich loves to ride roller coasters. I used to love them, but chemo has fucked my body up and I get sick as hell with most any motion now. I even had to sit in the stationary seats in Shrek 4D. I've become pathetic.

Thank God for Chris. We sat in air conditioning and sipped drinks while the daredevils played. Thank goodness for the wimpy rides too so I could have some excitement. Thank you Chris for such a great birthday gift. We had a blast. You are an amazing friend. It was exactly what I needed. Another huge thank you goes to your friend who got us VIP passes. It was so awesome to be able to go to the front of the line and not have to wait for anything! When people would look at us with our badges I kept thinking I would tell them Meg was a FORD model. (well she is!) lol I wish my camera wasn't broken so I could have some pictures of the day... especially when we were under Hulk looking up and Rich and Meg upside down! I had a great time and can't WAIT till Harry Potterland (or whatever they are going to call it) opens "next fall". lol

I hope we didn't wear you out too bad. I know I zoned out a few times, and didn't think I'd make it. But after our rests in air conditioning I felt better. I'll probably be in bed most of tomorrow too. But it's a price I'm willing to pay for having such a blast.

That time again...

... it's time to get a team together for Making strides.

I couldn't get it together last year. It was the first time in 3 years that I hadn't been there. I was lost and couldn't get motivated. I have to pull it together for this year. My team used to be called the Rock n Roll Rebels, but I was thinking of something new... I just don't know what.

If I could get Faery Wings switched to the new server and actually make money (that usually helps) I would love to sponsor the team with matching t shirts. I am also thinking of having a $50 Rave gift card for the team member who raises the most money. I have to get my teen walkers registered to work the event to get volunteer hours too. It's always been at BCC. This year it will be at the Avenues. I think that will be more fun.

I need to go register and make my team web page... I just need a bit of time to decide to keep the name or come up with something new. Most teams either have boob related names or names that go with their company. The first year I used the name I had the neighborhood kids that were walking with me and we had to come up with something the boys could handle. lol That will still be a consideration since they will still be with me. :p

Monster

Doh!

They can't fit me in for chemo until Thursday now. My days are all screwed up. I can't keep anything straight. The extra class and chemo were tomorrow, so I still needed to reschedule, but they are too damn busy! I forgot all the snowbirds transfer their treatments down here for the winter. I always schedule a month or two in advance... but when you have to change sometimes it easy... sometimes it's impossible. Lots of sick people in this area.

I may take Zack and Meg, then go do something fun in Melbourne afterward.

Affirmation thoughts for today ...


My life is a joy filled with love, fun and friendship all I need do is stop all criticism, forgive, relax and be open.

I choose love, joy and freedom, open my heart and allow wonderful things to flow into my life.

I am at peace

I trust in the process of life

When I believe in myself, so do others

I am my own unique self - special, creative and wonderful

The more grateful I am, the more reasons I find to be grateful

Loving myself heals my life. I nourish my mind, body and soul


I sent these to a friend, but I don't think they helped. :-/

The look of Fear

I found out over the weekend a friend of mine's cancer is back. I just ran into her a few months ago and she was doing great. Last weekend, I saw her with her husband and son in Panera. She told me she was optimistic, but I could see the fear in her eyes. I know she hates being on chemo again. Being sick, hair falling out, not knowing if you are going to live or die. It really sucks. She is also stage 4.

She is on steroids this time and not reacting well to them. They were able to cut her dose in half. I told her I also had effects from them, but luckily they didn't make me sick. They made my face fat and round, put 35 pounds on me, made me irritable ... and many other things. I'm not sure why you have to have them along with some forms of chemo, but I told her if I ever have to do it again... I am refusing it. Give me the chemo ... but fuck steroids. Fuck anything that isn't being put in me to fight the disease. I can't even take a Benedryl anymore when I have an allergic reaction to something because they gave me a high dose IV bag of the crap for over a year "in case I had a reaction to Herceptin". When the reactions to Benedryl got worse, I was able to get a half dose. After a few times, I couldn't even take that. They finally cut it out completely. After about 6 months of being off of it, I got a bug bite and took a Benedryl tablet. I went nuts ... bad reaction. About a year ago, I had a weird rash and my doctor gave me some pills to help. I forgot to mention my problem. They had some antihistamine in it similar to the one in Benedryl and again... reaction.

Anyway... I totally got off the subject here. I can't get the look in her eyes out of my head. As we were talking, Rich and her husband were talking. I looked over at him to say something, and he had that same terrified look in his eyes. He just looked so lost. I looked at their son, who is the same age as Zack, and he also had pain in his eyes. I've often told Zack to talk to him. They have been through a lot of the same things.

I really need to do something for her.

Encouraging Stories ...

On this last day of Breast Cancer Awareness Month I took a break from doing laundry to find this inspiring article sent to me by Rich. I love reading other women's stories of survival. It makes me realize I am not alone and encourages me to strive harder in life.

I know anyone that reads my blogs probably thinks I am a whiner, but the truth is I am far from that. I let my pain out on my blog to keep me from exploding. I talk with new cancer patients quite often to offer my own encouragement to them.

In my livejournal I have been more open about my ups and downs though I don't really write in there anymore. I try my best to write my thoughts down to one day put together a book. On this last day of awareness I am pasting a few livejournal entries. Each on a different level to show the range of emotions that go along with this disease.


strange morning

12:05pm 17/08/2004

mood: morose
music: Dream Theater _ This Dying Soul
I am slowly beginning to despise going into that IV therapy room. I've transformed from someone going in with a smile on my face trying to bring good energy and hope to such a bleak depressing atmosphere, to someone who just wants to forget where she is for a few hours.
I'd always bring a book and never get any reading done because I would talk to the people around me. Now I bring my CD player and book or even my portable DVD player and get lost in a movie. Rarely talking to anyone, blocking out the pain, misery and life being sucked out of everyone around me.
Luckily today no one was moaning or throwing up. One of my favorite nurses brought me in and I got settled in my recliner as she went to get my IV bags. She came back and said there was an order for full blood work on me. As she accessed my port that is surgically embedded under my skin above my right breast, she asked me what was going on. I told her about the health problems I've been having and all the tests I've been going through. I wanted to cry but when she was done and I was hooked up, I put my headphones on and relaxed laying back in my chair. I had my beloved Jekyll and Hyde CD in from the Broadway musical. My mind wandered in so many directions and my eyes kept watering. I fought off tears over and over again. I decided I was to emotional for J&H since it is so close in my heart.
As I was changing CD's, I noticed the elderly man across from me wanted to chat. He was telling me he only had 5 more treatments to go and he had enjoyed his experience because the people are so great. I have to admit, the nurses there are awesome. They keep us giggling and are very sincere in their concern for everyone. He asked how much longer I had with my therapy, I could tell he had been listening to me talk to the nurse. I answered "for the rest of my life". He looked surprised and then sad. One of the nurses made a joke about how I took up residence there. I see people come and go. Some people making it through treatment successfully and we have mini parties for them by popping bubble wrap and cheering them on. Some I watch progressively fading each time I see them until they finally pass on.
The gentleman was finished with his treatment and on his way. I was feeling the need to block out the world again. I had forgotten my book and didn't feel like watching only part of a movie since I now only had a little less than an hour left. I changed CD's and put in Dream Theater. I laid my head back and closed my eyes. My mind again raced to things I didn't want to think about. I opened my eyes and stared at the bag hanging above me watching it drip over and over again, amazed that 2 bags that look like nothing more than water could cost $2000.
Even through the music blasting in my ears I could hear the man next to me snoring loudly. I turned and starting looking around the room at the different faces. The recliners are set up in a long circle. No one looked happy, just bleak, blank expressions. Many were asleep. There were colorful afghans covering almost everyone because it is always so frigid cold in that place. Having Dream Theater setting the tone it was almost morbidly amusing to watch what was going on around me.
I was finally done. I watched the last few drips with anticipation. The nurse flushed my port, removed the needle and I was on my way. The drive home I almost felt numb, my mind almost blank. When I walked in the door of my home I broke down and cried.


hit by a truck...

04:26pm 12/05/2004

mood: depressed
... that's what I feel like. I got yet another call that an old friend has cancer. This makes 4 women I will now be consoling and trying to help them keep a positive outlook in the past few months. One of them, Donna, is dying. She was there for me 8 years ago when I went through my first battle. One day last year she showed up in the chemotherapy room as I was hooked up to IV's and they hooked her up right next to me. I held her hand as she cried and told me how they came to find her cancer that started in her bladder. I don't think she has stopped crying since. She has not been able to let go of the fear and focus on self healing. Her sister calls me in complete frustration about the fact that she does nothing but lay on the couch and cry day in and day out. Her cancer showed clear for a short time but returned with a vengeance. I tried to help... I feel like I have failed her. She said she wished she was as brave as I am. I'm not brave... this fucking disease scares the hell out of me! I fight the fear every day of my life.
Now I found out today that Arlene has it back. Our son's played baseball together the year my cancer came back. We would have long talks about it. She had breast cancer and chose to have a lumpectomy along with chemo. She often wondered if it was enough. Apparently it wasn't. She too found a lump in her neck just like I did. It has spread through her lymph nodes. But hers went a step farther. She has a spot on her lungs. It's really weird because I've lost touch with her and her hubby and I ran into him twice about a month ago. We had fun chats and caught up with what was going on in our lives. Weird coincidence that we got comfortable with each other again now that this has happened. My friend Lori that called me today told me she believes this is what I am meant to do. The chemo nurses have said the same thing to me. What exactly I am supposed to be doing is unclear to me. But knowing these 4 women have seeked my advice, my comfort, and my positive energy still amazes me because in my mind I am still so lost.


Life

10:32am 21/04/2004

mood: optimistic
I need to write more often, but just can't get focused.
I had a great time in Las Vegas. It was like being in "naughty" Disney World. I'm definitely going to try to squeeze a trip in this next year... I wanna go back! Maybe I'll look into taking the kids to the Grand Canyon and staying in Vegas for a day or 2 while we are out there. *ponders this idea*
So much is happening with me right now, it's hard to explain... but I feel good about everything. I think I'm starting to see the light at the end of the dark tunnel I've been in for the past few years. (no... not THAT light... lol)
Good close friends are still by my side even though I tried pushing a few away when I was at my lowest points. I actually had a woman I know socially come up to me the other day and tell me how much she admires me. I was in shock. This woman is on the board of everything and lives in a huge $1 million dollar home. I had another friend tell me the same thing a few days later when I ran into her in a store. My confidence level has been boosted ;)
I love life... I always have. I need to dump all these stupid fears and start being the person I am inside. Cancer and depression will not win.

Just a few days before that last entry I posted this ...

I met a woman when I was up at the school the other day. My son's teacher took her back in the office for a conference. A few minutes later the teacher came out and asked if I had a minute to talk. When I went back with her I found out this woman has a similar situation to mine (cancer). She asked if she could have my number. Well she called me today and we talked for about an hour. She wants to get together and have lunch so we can talk more.


Yes, I know most of these entries are from a few years ago. I've been going through this for years. I write in random places when I feel like it. Most of my things are in hand written journals. It has definitely been a journey. I'm very fortunate to have guardian angels, close friends, a supportive family and my dear babies who's love gave me life. All of which I would have never made it this far. I am also thankful for my estranged husband for caring enough to keep me on his health insurance, without which I would be dead. Though Rich wasn't with me in the hardest of times he keeps me sane now and has shown me unconditional support and love.

I look back on the years and could never be able to put into words what this disease does to a mind, body and soul. I've watched people I know wither away and die... some were close friends. I have had survivor guilt, chemo brain and depression. But I have also had many good things that I am very thankful for come from this. I am in remission and thankful for that IV bag of life I get every 4 weeks. The long term meds have taken a serious toll on my body and my health is not great... but I am alive.

Moody Moods

True, I am a moody person. I used to be able to talk about how I feel. But years of being back stabbed or things I say being taken the wrong way I find it hard to express how I feel. I keep it all internal and one day I feel my heart... or my brain will just explode.

The many faces of me ...

feeling feisty and devilish

out for blood

cold and alone

like I can fly

like I should just disappear

broken

no one can hear me

infuriated

drowning

“…Slowly, slowly the wound to the soul begins to make itself felt, like a bruise, which only slowly deepens its terrible ache, till it fills all the psyche. And when we think we have recovered and forgotten, it is then that the terrible after-effects have to be encountered at their worst.”—D.H. Lawrence (Lady Chatterly’s Lover, 1928)

A friend had a talk with me a couple of weeks ago. She was concerned about my social withdrawal and my avoidance of friends. She told me she has thought I had symptoms of PTSD ... post traumatic stress disorder. I was in shock. First because I only associated ptsd with soldiers, but also because I thought I hid my depression pretty well from friends and family. I guess not. I never knew breast cancer survivors could have this trauma disorder. She said she has seen signs of it since 5 years ago when we met. She also suffers from ptsd, but for completely different reasons. She said in the past two years my symptoms have gotten progressively worse and felt it was time to get the nerve to talk to me about it.

In researching the symptoms for breast cancer survivors it does show avoidance, depression, social withdrawal, sleeplessness (I can't remember a time I have slept through the night), inability to focus, flashbacks, avoiding friends and family, ... and marriage falling apart. To be honest, I believe I had ptsd before I was diagnosed.... or maybe it was just depression. But I had a traumatic experience when I was younger and I think that combined with what I have gone through with this 11 year cancer battle and things in my marriage going so terribly wrong it's something I should get help dealing with. I have an appointment with my doctor in a few weeks to find out.

I get angry and disappointed with myself and think... I'm a strong woman! How could I let this happen? How could my life have spun so out of control? Get a grip and regain control!