What Doesn't Kill You...

Dark Paths

By Tzvi Freeman

"He could have placed streetlamps along all the pathways of wisdom, but then there would be no journey. Who would discover the secret passages, the hidden treasures, if all of us homed in straight for our destination?"


Tomorrow's the last day of radiation - YAY!! I'm celebrating by buying the paper goods for Aimee's Bat Mitzvah party. And my kids are coming home from their big trip around 3pm (G-d Willing). That will be a treat in itself.

I have been fighting the radiation burn pretty successfully with lots of different lotions. I made a friendship that I will continue after I'm done. And she has her own story of horror: her surgeon told her after her lumpectomy that they had to do it all over again because the lump was bigger than they thought!

Yesterday I went to the Lymphedema clinic and was told there's no need for me to return - unless I get swelling that doesn't go away. I will be letting go of the sleeves next week. She reassured me and gave me more info and so I am not afraid of the disease anymore. Another person who got radiation when I did had 17 lymph nodes taken out of one arm and her hand is swollen. I felt sorry for her and I was so grateful that my doc only took 7.

The past week (while the kids were gone), I found myself thinking about that saying, "What doesn't kill you makes you stronger." Twice I heard Geoff reference that saying while telling a friend that motherhood didn't kill me, but it did weaken me. Whereas this diagnosis & treatment has made me stronger.

With the kids away from home, I found myself obsessed with what Geoff said and wondering why motherhood didn't make me stronger and why breast canSer did.

When Jason was a newborn, he had reflux which made him a terrible sleeper and a screamer. I had thought I would always go back to work but when he needed medication 20 minutes before every feeding, it was hard to trust anyone else to know when he was getting hungry in order to give him his medicine. Harder still was trusting someone to know how to hold him off for 20 minutes before getting fed. The first time I got a baby-sitter and pumped and got out to my office to see my one client, she was a no-show. That was the last time I tried to go back to my practice for 10 years.

In the meantime, my health began to fail when in addition to weekly migraines, I was having severe insomnia from my baby's sleep habits. Then came Aimee and I ended up selling my furniture to the woman who was sub-leasing my office. It was really hard to let that go. I had done the office up so nice and it had a view of the ocean and the Hermosa Beach Pier.

After moving from So. CA. back to S. Cruz, my life wrapped around the lives of two little people. I volunteered in their classrooms and focused on their needs, while trying to catch a few hours here and there for myself when they were in school. Baily and I had a great time back then, hanging out together and talking while our kids would entertain each other.

Then Aimee got into kindergarten and first grade and I finally got a full 6 hours all to myself. But at the time, our school board was threatening to close our school and I became consumed with advocating for my kids through the loss of all that was familiar and the move to another school. That was when I became PTA president to help make that transition work for us as well as I could.

I suppose focusing on my kids to the extent I did wore me down. It also gave me an excuse for not having to face my fears of going back to working at my practice. I had been holding the belief that I never really liked that work anyway. Plus, the thought of dealing with others' problems seemed overwhelming when I had so many of my own. I couldn't imagine taking care of one more person. And I held the belief that I was never really good at being a therapist anyway.

I couldn't imagine building a practice again after being out of the field for so long. I was very insecure and didn't think I could ever market myself the way I'd built my practice the first time. Unfortunately, I had no idea all I needed to do was apply to insurance companies and they'd send me clients without my having to teach any classes or market myself in any way. Working with the insurance companies and doing all that paperwork didn't appeal to me, so I never pursued it.

That's when I tried to market to mothers. I felt I had a real good picture of what problems they faced and had the heart to help mothers like me. Unfortunately the website I created and the workshop I led didn't build the kind of practice I had before when all I did was lead a workshop to build it. Luckily I ended up trying the insurance companies just in time to catch this canSer before it turned into a stage 4. Once I had regular clients coming in I must have felt secure enough to finally get that mammogram and face what I didn't want to face and had no clue I would have to face.

So I guess where I'm going with all this is that maybe having my practice finally going right before getting diagnosed helped me to stay stronger through this ordeal than through the ordeal of motherhood. It's been helpful because it's something I do for me that helps me feel stronger and accesses the best part of me. So it reminds me of my strengths.

Going through this diagnosis and treatment has also made me stronger by reducing my tendency to lose myself in other people's problems or get overwhelmed by them - like I may have before when I had my earlier practice. My life is just too precious now and my energy too important not to protect. I don't go down that co-dependent road as much as I used to. So doing this work is not as draining as it was and I can be better at it than I was before.

There's nothing like staring death in the face to make you rise to the occasion. Of course the anti-depressant helps tremendously. In addition to no more migraines, it would be very easy to give up and just want to die instead of live if I didn't have a handle on my tendency toward depression. Getting my practice going and getting on Celexa right before getting diagnosed was such a miracle for me. I could not have survived this year and all its trials without either my practice or Celexa.

I think there's one more important piece that I have now that I didn't have back when I was a new mother. Geoff. Ok, I did have him back then but truthfully, I was the one to work in the classrooms, help with the homework, make the dinners, clean the house, work on the yard, pay the bills, do the taxes, get the kids ready for school in the morning and take them to school. I pretty much had gotten used to doing it all and not asking for his help. Gradually, through the years, he's taken on many of these tasks and thankfully, through this canSer challenge, he's been doing everything.

I have not had to do anything but focus on myself and get better.

Focusing on myself has been so healing. Not having any other responsibilities but your own self-care has got to be THE way to make sure that what can kill you instead makes you stronger. I'm in my own therapy, I've got my own carepages for writing therapy, I'm reconnecting with friends, I'm watching TV whenever I get tired, I can sleep in if I've had a rough night, I go to acupuncture weekly, I've had more massages this year than probably my entire life, I found an exercise I can do regularly that I really like, etc. My life is no longer so entirely wrapped around two other beings. I am finally able to take care of myself.

First Radiation

My first radiation was today and it was scary but I got through it by focusing on the visualization of white light. It was over in about 2 minutes. The fun part was meeting the other women who were also there getting radiation for breast cancer around the same time.

There are so many different types of breast cancer. One woman I talked to had a 2cm tumor, stage 1, a lumpectomy and then was getting radiation to her lymph nodes because they found microscopic cells in there. They also gave her the option of having chemo or not and she opted not to. I didn't see anyone else today who had a mastectomy - just lots of lumpectomies. They might have to get longer radiation than I do. Anyway, it will be fun talking to them all everyday over the next 6 weeks.

It seemed like we were all so hungry to hear someone else's story. Especially if they'd already experienced what we were anticipating having to go through in the future. It felt like we are all so in the dark and so isolated. I guess going to a support group would have helped me with this. But after going to that one at the beginning, I decided I didn't want to hear about someone who had another kind of cancer not getting results from her chemo. It was too upsetting for me.

My sister in care called me a couple nights ago and I got to complain to her about my depression after the surgery. I've been somewhat puzzled by it and not sure how to deal with it. Mostly, I've not been able to understand it and wondering why I couldn't get beyond it like I had been able to before while going through chemo. She said something to me that settled me about it and explained the reason behind it so that I was able to set it aside and feel more upbeat today. She said that when she had gotten to the end of her treatment, she'd been so worn down from the length of the treatment and all the different things she'd had to endure that she just felt weary rather than elated to be at the end.

That made so much sense to me. Look at all I've had to go through since October. And it's not over yet. Six weeks of radiation and then Tamoxifen and how will that effect my body? It will be nearly a year since diagnosis when I finally go on the Tamoxifen. This treatment of mine seems like it will never end. At least I've got the worst part over with.

On the bright side, my ortho arm sleeves are feeling better lately. I'm still wearing them at 9:30pm and don't feel like ripping them off. So I'm definitely healing. The swelling is going down.

And the dancing has been working well so far. I've got 2 hours or so of songs on my dancing playlist and have been enjoying the exercise. I even get to stretch my arms by swinging them from side to side to the beat. You would have enjoyed seeing me hopping and jumping with my inner child to Davy Jones singing, "hold on girl wait a little bit longer, hold on girl be a little bit stronger - hold on girl, help is on it's way..." How appropriate.

The Surgeon Weighs In

I had another easy chemo with only one day of pain and am planning to see my clients on Thursday and Sunday of this week. I think it's the neulasta shot that brings on the incredible pain all over my upper body around my lymph nodes. It's a shot everyone gets the day after chemo that is supposed to increase your white cells by pulling them out of your bone marrow. Everyone told me about bone aches with this shot, but I experience pain in the base of my head, my throat lymph nodes and my upper arms. So again, I am unusual where it comes to immune stuff.

We went to check in with my surgeon today. I always enjoy seeing him. He's very calming and seems like he knows what he's talking about from all his experience for so many years. His office is really not much. Makes me wonder if he doesn't need to make it fancy due to his reputation in this town.

Anyway, my biggest question to him today was: is it better for me to get this surgery now and get rid of the potential for these cells to travel elsewhere and then finish up with the chemo after the surgery to clean my body out? He told me it doesn't work that way. It's better to continue on with the fight, rather than take time off for surgery and let those wayward cells multiply. That perspective really helped.

It also helped when while he was checking me, in astonishment, he called over Geoff. I wasn't sure if he was going to have Geoff check me too or what! Instead, he just showed him how small he thinks the center of the tumor is right now compared to how it was when I first came in. He said the word, "2 centimeters", which would make it less than half it's original size. What had been tripping me up in my own checks was that there's so much scar tissue. He knows the difference between what scar tissue feels like and tumor feels like.

The other thing he settled more in my mind was the option of having a lumpectomy vs. a mastectomy. Even tho the lumpectomy sounds so much better, I have more chance of recurrence in that side due to it's size. Knowing my history, I'm not one to have to deal with continually checking and wondering. So I'm more settled to having double mastectomies. Though the right side could be saved, it too had a nodule and I don't want to have to worry about recurrence - at least the lymph on that side don't need to come out. The lymph on my left side do need to come out since the sentinel node was positive...which is worrisome but gives me more of a chance of not having recurrence.

So I'm getting ready to tell my entire mammogram story from when I got my first one at age 37 to what the heck I was thinking that led me to not getting anymore until age 49. Stay tuned for the next update sometime this week...

Surgeon Update & Please Allow for My Feelings

Well, we really liked the surgeon and he does do most of the breast surgeries in town.

What I liked about him especially was that he was the only one so far who told me that there was a chance to shrink this tumor down enough to just do a lumpectomy. He's seen it happen before with chemo where the tumor does respond well. It's rare but he's seen worse then me disappear to nothing. So, hearing that changed my whole perspective toward having to undergo chemotherapy. Now I was feeling like, "OK! bring it on!!!"

He also said that my cancer type does respond well to chemo.
And he has done this procedure that I heard about where you test the tumor first to see which chemo it responds to best. Whether I get to have that procedure or not will depend on another discussion with the oncologist.

Looking at my mamogram slides, he doesn't think anything's going on with my right breast at all. The MRI next week will tell more.

On another positive note, my mother-in-law's friend (who's daughter went through this) gave me a great book! "Just Get Me Through This! A Practical Guide To Coping with Breast Cancer". It's really great and answers little questions that you don't even realize you need to ask. For example, now I know I'll be sucking on a Popsicle while undergoing chemo so I won't get mouth sores.

Next week on Tuesday is the CT scan and the breast MRI and I'll write again after those.
Melissa

P.S. I hesitate to write this because I know everyone means well but I need to take good care of myself now. So I have to vent to you all. First, thank you so much to those of you who've let me just be with whatever feelings I have. (You know who you are and you have helped me tremendously.) The hard part for me about this disease is the same thing that happens with having the awful disease of migraines. If I had diabetes, no one would tell me how important it was to stay up and positive and happy - that somehow staying upbeat will heal the disease and having depression or sadness or anger may cause or exacerbate the disease.... Of course it's important for anyone in life to be positive and upbeat. But somehow the undercurrent perspective about cancer and migraines is that our feelings cause these dreaded diseases or make them worse. What I know is true for absolute certain, is that when a person is sick, the brain may not function optimally and the illness can cause depression. When the body is healthy, the depressed thoughts may go away. I saw that happen to me with my most recent cold in fact. So I am indebted to you for not judging me when I go through whatever feelings I go through. And it helps me when you keep the faith that I'm going to be OK and I will survive no matter what I have to go through. Because it's really true. I know that now. I may have to go through 5 or 6 months of literal hell. But one day it will be all over and this will be behind me and I will be just like everyone else and get myself checked for cancer on a regular basis. This is a disease and not a death sentence. Knowing that you care and feel for me is really all I ask. And keeping the faith in your own heart - not necessarily reassuring me when I'm down, but just offering your sympathy, empathy and compassion is really healing for me. Letting me vent, talk, complain, rant and rave, if I need to and still remembering that I will be OK without having to remind me of that is the most healing way you can be with me right now. Thanks for being there. I'm making my list of who I can call and what you offer and what we may be needing in the times ahead. Right now Geoff has been doing it all and he's been great and he loves to cook and going through this hasn't made a whole lot of difference in what he's been doing already. My mom's getting me house cleaning. I know who can take Aimee or Jason in a pinch. I know who will bring food for me if Geoff needs a break and who I can turn to for bone broth. I also know who will go with me to doc's and who would run and get me anything. I know who will take over this writing if I need to hand it over at some point. I also know who can come and help with Geoff's parents if they need him when I need him at the same time. I feel truly blessed to have such a strong circle of friends and family who I can count on and who love me and want to do for me. Thank you. I'm sorry but I just had to get the "feelings" stuff off my chest. I don't want to feel like I have to be upbeat at the times that I don't feel upbeat. And I don't want to feel badly about myself when I'm not able to be upbeat and I don't want to feel worried about hurting myself if I don't feel upbeat. And I don't want to be told by anyone else that going through cancer treatment turns negative people into positive ones. (no one said that but the implication is there) I know I'll get healing from this and of course it will make me stronger. But truthfully, I have had lots of physical challenges already in my life - though this one takes the cake - and I know how strong I am, have been, and can be. And my diet has changed many times over the years trying to help myself with my migraines so this is just one more time. I don't want to focus any more on what I could have done, should have done, and what caused this and how maybe it was my personality and my denial. I just want to focus on getting through the next round on this journey. So I hope that gives you some idea of how you can help me in ways other than the ones I know I can count on you for.