Archive for April, 2011

Finished brain mets on April 19th. The hair was gone, the scalp sunburned and oddly enough, the left hip was aching. Hoping it was just a bulging disc in my back or a pinched nerve causing the trouble. Well it kept getting worse rather than better, I actually started taking vicodin because the motrin wasn’t relieving it anymore. Told my onc and we got an MRI of my hip. Go to see her and have now graduated to percoset some of the time because the pain won’t let up and she says, hip MRI doesn’t show really anything that should be causing you this much pain except maybe some arthritis issues due to the lack of estrogen in your system.

I tell her about how it is now moving down my leg and nerve issues in my pelvic area so she decided we should get an MRI of my lower back. That shows a small tumor on my conus, a little area at the bottom of the spine and there is stuff wrapped around some of the nerves and that is causing a lot of the problem so yesterday we start back on radiation on my lower back. This one sucks. I’ve had two treatments and vomited both times – nauseous the rest of the time and have been in so much pain since yesterday I asked for a better pain killer today. Oh yeah, and it looks like I might have shingles AND we have an MRI of my upper spine scheduled for Tuesday as it is likely it is there too since it was in my brain and on my lower spine.

To add to all of this I was supposed to go to a conference in Philadelphia this weekend for, wait for it…. Women with stage iv breast cantsur. Can’t go – between pain, nausea, vomiting, exhaustion and that they want to treat me on the weekend. No go.

I also may now have to be cautious about riding roller coasters!!! The indignity! Between brain and spine I might be one of those who falls into the “Do not ride if you have one of the following conditions…” That would really make me crazy!


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The hair started coming out this morning, scalp had started tingling a few days ago so I wasn’t surprised. No big deal, for me anyway. My daughter, a little more so. The bald mom thing has always been a stress point for her. It makes me outwardly different and not just ‘different’. We told her and her brother almost two weeks ago and while she took it just fine, all things considered, I know it weighs on her mind. We have a wonderful counselor who comes to see her at school and is from a local group called Cancer Family Care. Her guidance counselor at school provides lots of support. If she gets worried or sad at school she tells her teacher and they let her go talk to the counselor. She also has lunch with the counselor every once in a while and the counselor started a stress management group and asked my daughter to participate. A stress management group for elementary students. So unfortunate that these things are needed.

She goes to a day camp once a year that she enjoys – all kids who have a family member who has or had cancer. She is going to one of Camp Kesem camps this summer too, a week long camp for kids who have a parent who has or had cancer. Those are great, she is surrounded by kids who ‘get it’. Just like my conferences are good for me because I am with women who are there, and who live it and get it. My friends are all wonderful but there is a difference when you are with someone who is walking the same path.

Last night she got upset and finally vented some, about everything. Crying, beating fists on her bed, and finally just being exhausted, because sometimes it is exhausting. I want a normal Mommy, I don’t want a sick Mommy, I don’t want you to have cancer, I don’t want you to be sick, I don’t want you to lose your hair, I don’t want to lose you, I don’t want you to die, I want a normal life and a normal Mommy and a normal Home!

You know what baby… me too. This was not on my radar for my you or your brother, for my family, mother, father, husband, sister, brother, aunts, uncles, cousins, friends. I understand that you all are my fellow survivors. I know that when I get good news you celebrate with me, I know that when I get less than fabulous news you get stressed and scared with me and then help me get on and deal with it but I still wish none of you needed to. I wish it every day but we all know about wishes.

I’m getting there. We will find NED, we will be a story in 20 years of a woman who beat the odds, continually, and I will help my friend Tami promote her next book about Miracle Survivors (From Incurable to Incredible).

“No! Try not. Do, or do not. There is no try.” Thank you Yoda..Trying isn’t one of my options, doing is.

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The eyes are much better, at least early in the day. There is still a little double vision but it is a lot less than it was and should be gone here in the next few days. Of course it is Monday so I’ve had the last two days off of radiation which helps. We have a ton of help for food. Thank you so much to everyone who has volunteered. I even have extra people who want to help so I’m asking for easily freezable things or maybe breakfast type stuff.

Friends have planned one fundraiser on the west side of town and other friends are working to plan one on this side of town and I am so eternally grateful I cannot thank everyone enough. For all the support, emotional, physical, spiritual. Prayers – I am so grateful for those too. Please, like I said last week, think good thoughts and if you have scary or unhappy thoughts about me, follow them immediately with good prayers and good energy sent my way. Help me heal.

I’ve written about my Fab Five, two of them also have it in their brains, Julie has had it in a couple spots and has been able to do conventional surgery, Eleanor has had it more diffuse and done radiation. They both do conventional and alternative treatments and both are very knowledgeable and willing to share information too. The people I have met on this journey share what they know and their experiences too. I must admit that since I’m on this journey I am grateful for doing it now. When I think just 15, 20, 40 years ago, how differently things would already be for me it is just astounding.

I am much more peaceful on a personal level this week, I’m not ‘worried’ or ‘scared’ most of the time like I was last week, I feel better and that can do wonders for your attitude too. I’m asking you to remain peaceful and hopeful and certain and help me make this the blip on the radar screen that we want it to be. Just a small one.

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It is a twist. It feels a lot like the original diagnosis and it is scary but we want to make it hiccup, not a chasm. I see and watch people react as though this is news of my impending demise. STOP IT! Send me good, healing, positive prayers and vibes. Actually ask God – out loud – to heal me and fulfill his promises to heal. I am NOT finished, I am NOT giving up. I AM living, I AM fighting, I AM learning, and I AM moving forward. They prayed for me at my church this past weekend, the entire congregation came forward. I have also been talking to a friend from church who is talking to me about asking for what I want and speaking it. Prayer is powerful.

I had my 8th whole brain radiation treatment today. My double vision is a bit better. I’m really tired and I walk around feeling a little fuzzy (buzzed almost) most of the time. Evidently the fuzzy is from the radiation and not from cansur which is actually comforting. I’m not allowed to drive during treatment because of the possibility of seizure but that is a very slim possibility. People are bringing food which is a huge help and as I figure out what else I need I will ask. I am not above asking for help, that is how you get through these things and you come out of it stronger and with friends knowing they are able to do things for you and with you.

I have been talking to my doctor about dosage and things to do. I am in touch with my herbalist to get a new ‘brew’ and I have several friends working on some of the same challenges and we are in contact. I have a list of supplements and foods to get into me and I’m getting healed! There is no other option!

Anyone who is facing something like this, try www.lotsahelpinghands.com – it is a great resource for organizing help.

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