I get by with a little help…

Ok, so I am REALLY good at telling other people to accept help from their friends and not so good at actually doing it, but I am getting better. When all this started I went through the motions of setting up calendars, and let a friend or two organize meals, and that got us through the first summer but after six months you start thinking, I can handle this. You can’t handle it and you aren’t but you think you should be able to. We managed to muddle through two surgeries and Christmas of ’09 and then have it hit again in February ’10. Got through most of that with help from my family and some close friends. All the while having conversations with newly diagnosed women saying, LET YOUR FRIENDS HELP YOU! They want to, they feel helpless too and by bringing you meals, watching your kids, cleaning your house, helping with laundry, they feel like they can contribute to all of this craziness and make your life a little easier. If you are arguing at your house about getting your kids to help more, take it out of the equation for now, ask others for help. I sure can talk the talk and it sounds great at the time.

We all want to be supermom. We all think we can handle it. We all think we should be able to handle it; and then we are all grateful on the days when we have help and realize we can’t, even if we want to, and frankly, we shouldn’t always be able to.

I had just started to get back into the swing of things, cooking and feeling pretty good when we got the news of the brain mets and SLAM! Right into the wall. Then the spine stuff. This time, I’ve asked for more meals when I need them, I’ve been straight with people about what would help. I’ve called other parents to help with pick up and drop off of my kids. Let others clean my house and run errands. I’ve let my parents drive me around, I’ve had my sister over to help. Not to say I’m not doing anything, but it is nice to know, on a day when it is just about all I can do to stand up and take care of my child, that I don’t necessarily have to think in the back of my mind, what am I going to fix for dinner tonight. One night it took me 3 hours to warm up what someone had brought, get it on the table, eaten and cleaned up, but it got done. We probably would have just had frozen pizza that night if I hadn’t started to let people help me.

The biggest thing that my friends have done so far is tomorrow, May 7th. When we got the news about the brain mets a group of women I am close with got hold of this news. One of them got a space and they put together a fund-raiser for me and my family. The event they have put together is so amazing. They have collected donations for raffle, auction, have vendors participating, scrapbooking, coupon swapping, a bake sale that sounds like it will go down in history and and wonderful group of people organizing and attending. I will never be able to thank them enough, to tell them how blessed I am that they were brought to me, that they are a great gift in my life and I am humbled beyond words that they would do this. And then there are all of the people who are coming, have donated, plan to and support me in so many ways.

Every night I go to bed trying to remember to count my blessings, even in the middle of all of this, right now, they are easy to find.

Sometimes you need a day ‘without it’

Lately where I live it has been very rainy and remained chilly and generally depressing and kind of unpleasant. I’m generally cold from October to April anyway so when it extends into a frost warning in MAY, it tends to get to me and impact my attitude, approach and general overall well being. For me, what it is cold it is hard to get out of bed and get motivated. I do it – if my kids weren’t here dragging my butt out of bed some mornings I’m not sure it would happen, but it does.

Yesterday was day 7 in a row of radiation on my lower spine with no breaks. Today was day 8, no bull, it is hard. Extremely tiring. Getting up and moving yesterday was tough. I was grumpy, irritable and unpleasant, and of course the people who got to deal with me like that were my kids, and (thankfully) my Mom. My Mom spent the day at my house, got my daughter to and from school, got me to treatment, helped me keep track of my son, made sure all three of us ate, and stayed until we went to bed (my husband was unavailable due to work). Doesn’t sound like much but it was more than I felt like I could have handled yesterday and I would have been a complete wreck without her help.

Today was better. The sun was shining, it was finally warmer, it is only supposed to last for a day or so and then we are back to gloomy and rainy although they are still kind of calling for warmer, you’d think we lived closer to Seattle based on this. We had the opportunity for the four of us to go out and spend some time in the sun, soaking up Vitamin D too, as a family and while I was tired and moving slowly, and outwardly you can tell because bald usually gives it away. I FELT reasonably normal. We sat in the sun, had a low key couple hours, came home and having a relaxing, everyday, hanging out sort of evening. There is something to be said for that.

I’m on two pain medications, a steroid to help with inflammation, an anti-nausea drug and two other prescribed drugs. Every time I look up I have to check to see when I last took meds and when they are due again. Then there is the list of supplements I take, to help with inflammation, blood sugar control, proper healthy cell reproduction, protect cells that I don’t want destroyed by radiation so that I can continue to function, oh yeah and some even help fight cancer cells. Then there is my diet, I try to work on but when food is generally unappealing some days it can be difficult to focus and get my veggies and everything in that isn’t ‘easy’ food, so I try to find things I can do to make easier. My food intake will get better tomorrow, the last few days haven’t been great but they have been easy and now that I’m getting a better outlook again, I feel like I can tackle things again.

Sometimes you just like you need a ‘vacation’ from work, a day ‘without it’ and doing minimal thinking and worrying about it, can be just SO nice.

I’ve been thinking about kids

mostly mine obviously but I’ve talked to another ibc survivor who has also recently finished rads for brain mets and another bc survivor who was just diagnosed with brain mets this week and a couple other survivors of other types. Many have small children. Some have slightly older, a few have high school and even college aged children…kids have been on my mind.

We all choose to deal with it and tell our kids different things, different amounts, different ways. It is always interesting to me to hear how other people handle it. Some choose to protect their kids as much as possible, some not even referring to it as cancer. Some tell some things and leave it very basic. Some are afraid that telling too much will make their kids scared, others think telling them too little will make them scared and wondering. Some choose to get them around other kids who have similar experiences and fears.

The way we have chosen to deal with it is to be as honest and age appropriate as possible. I’ve talked about some of the counseling and camps my daughter attends. My son will get to go to the day camp this year too. I learn about things they are thinking as they do all of this too. I found out my daughter thought I could just be sitting there with them and just ‘die’. She’s been living for almost two years thinking I could die any moment. I felt terrible but it explained a lot, why she would get so upset at being away from me, even to go to school. Why she worried so about her little brother being at home with me alone during the day. Now she and I both have a better understanding and we opened up another line of communication. When this first started and she told me that she was scared, I told her then that I was too, but at the time we were getting good news and we didn’t need to be scared. I also assured her that if a time ever came where she needed to be scared, I’d tell her. She knows she can ask me things, she asked me last week about who would take care of her if I died, meaning, who would get her ready for and to and from school and make sure that her lunch was packed and she got to lessons and all those things moms do. We talked about the possibilities, and how she felt about some of them.

Her teacher tells me that when she gets upset at school that she handles it appropriately and asks to see the guidance counselor. She also sees a counselor who specializes in kids who have a family member with cancer. She tells me when that counselor shows up at school, I ask if anything happened that she wants to tell me about or any questions that came up she wants to talk to me about. Usually she says no – and I’m okay that she feels like there are things she does better discussing with someone else. We all need our people we can talk to about things.

My son, he was 3 when we started this journey, he is 5 now. His understanding has developed some but it is still very much “Are you going to die?”. If I say “No” or “Not today” or “Not if I can help it” he generally looks at me and says okay and goes on with what he was doing. I don’t think he ‘gets’ dying, or what forever, or never seeing Mommy again means. But he still asks every couple of months, so I know it is on his mind.

My bead is that our kids can tell when things are up, they live with us, same house, same rooms, overhearing bits and pieces of things that can be scary. For example, I finally was “sick” from treatment a week ago, I had to go to the bathroom and be sick. For the first time in two years of this there was something other than tired and bald and it was scary for them. I was trying to tell them when I felt the need to go be sick so when I came out – I explained.

They are probably more intuitive than most adults and my approach is that I tell them so that I can control the information and hopefully head off their brains from going to crazy or scary places and the idea that addressing their fears head on will help them handle it all. But who knows. We all do what we think is best for OUR families and whenever we talk to someone whose approach is different it does make us wonder and sometimes maybe rethink. I’m not the only person in my house who ‘has’ cancer. I’m the only one with it in my body but from the day I was diagnosed my kids, husband, parents, siblings, cousins, aunts and uncles were ‘diagnosed’ too. So were a lot of my friends. They are truly my co-survivors – one and all – but my kids and husband have to deal with the brunt of it every day, every minute because we are together all the time. I just want to help them get through this journey stronger for the experience and as unmarred as possible.

And the hits just keep on coming!

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!

Going, going, again… I’m sorry baby

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.

Much more peaceful and overall better this week

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.

So where I am on this latest twist

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.