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Archive for the ‘Thoughts on c’ Category

For most of 2010 I was on chemo, from February until just before Christmas. It was pretty powerful and about a year ago I asked my oncologist for a prescription so I could get a handicapped/disabled tag from the BMV. It was because I was so exhausted I just couldn’t make the distance from the parking lot to inside, do what I wanted and then get back to the car without it knocking me out for the rest of the day. I decided it wasn’t worth it to use all my energy just trying to get into wherever I wanted to go. I still have it and I use it, but when I feel good – I don’t. I’m young and often have at least one child with me when I go somewhere. When I get out of the car I see people look, occasionally I could even see the “Why the heck does she need that, bet it belongs to one of her parents or something.” I don’t worry about it, of course now that I’m bald again no one even looks at me funny.

Since this lower spine radiation though things have gotten more difficult. I am tired, have no stamina, have lost muscle and strength and the nerves going into my legs are not behaving the way I want so my left leg isn’t responding properly. All this means I can’t walk through a store for much distance so at places like Kroger and Target I use the little scooter things they have with the baskets on them (just an FYI, the ones at Kroger are much faster and more maneuverable). And if my 5 year old, who is maybe 40 pounds is with me, he sits on my lap. Again, I’m bald so mostly people look at me with pity (UGH) and don’t bat an eye. I HATE riding in those things. If it wouldn’t wipe me out for next 24 hours I’d try to walk it. Riding in one of those things makes you FEEL disabled. It is even hard to sit up straight, I do but I understand why so many do not. It just saps you, it makes you feel less than able.

So my dilemma is this. My son finished preschool this week, my daughter gets out of school next week and then I need to be able to keep up with them. Not that I don’t now but we have memberships to the local museum, zoo, amusement park, pool (monster pool), and places we want to go. There are events we want to go to and festivals and shopping and even just down the street to the park without having to drive. Which means I’m looking at a little personal scooter, some of them come apart so I could put it in the back of the suv. I’d rather have something cool like a Segway but that requires standing the whole time. I really am hoping and planning not to need it for more than a few weeks but they are $100/week to rent and I can find a used one for around $500. If I were to need it longer I’d regret not getting my own. I kind of want to just go ahead and do it, so that I am prepared and can just go, but at the same time I don’t want to need it! I want this to be a blip on the radar and have my legs working the way they should. Last summer I missed a lot, or felt like I did because I got sick and was weak and unable to do the things I wanted for most of June, I don’t want to repeat that. I don’t want to feel like I missed stuff or my kids didn’t get to do things because of me. So I’m going to go and look at them and figure it out from there.

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The last two months would have been impossible without my Mom and Dad. Heck, I’m not sure how I’d have gotten through the last two YEARS without them. Mom has been to just about every doctors appointment I’ve had since the first week and Dad had been at most of them. If he wasn’t at the appointment it was usually because he was taking my son for me. They drive, pick up lunch, pick up kids, take me to run errands, let me nap… I am so blessed and fortunate to have the both, to have them both close by, for all their support in so many ways. Since I started radiation in MARCH at least one of them has been here everyday during the week, to help me get the kids up, fed and off to school, keep me fed and rested and take me to treatment, get kids picked up and together until my husband got home and if my husband had something he needed to do that evening, Mom or Dad generally stayed and helped get everyone to bed.

Keep in mind, my parents divorced when I was 10 and it took a long time for us all to be close like we are – and we are unusually close for a family that has divorce in it. My Mom lives about 10 minutes from me and she still works full time. Fortunately she is in a job that allows her to work remotely and they have let her work from here. My sister installed a secured wireless network in our house as soon as I was diagnosed so anyone in the family and my husband could all work from here. Mom is an early riser and has gotten here and often actually cooked breakfast, and given how my daughter loves bacon and they both love french toast and pancakes, that has been popular.

My Dad lives about 15 minutes away with his beautiful wife and my teenage brother. Dad retired right after I was diagnosed and while he has stayed busy he is also always available, all I have to do is say the word. Dad, one of his friends and my uncle from Texas did a ton of the work on our kitchen last fall. He has a great time with the kids and he has come over and gotten them off to school and sent me back to bed, taken me to the grocery, the doctor and anywhere else I need to be.

I know that either of them would give anything for our family to not be dealing with this. I know it is hard for them to see me when I am feeling sick and I’m sure they hate walking into the doctors office just as much as I do. Don’t get me wrong, my doctors and nurses are great, they take excellent care of me and it isn’t anything personal but I’d prefer to not need to know any of them. Mom and Dad have been amazing through all of this and are such great role models for me. You do what you need to do because you are the parent and that is how it works. I know they love me, I tell my kids all the time that they will have some idea of how much I love them when they finally become parents themselves. I look at my kids and I know how much my parents love me. It truly is walking around with your heart outside your body. I thank God often that it is me and not one of my kids who is sick, but for my parents, it is their kid.

We are kicking it out. NED is still my friend. I’ll meet him – SOON!

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So I did nine consecutive days of radiation, including a weekend, then they decided that I’d wait and do the last one on Monday the 9th. Sunday the 8th was my sister’s birthday and the day I was diagnosed two years ago. And this year it was Mother’s Day. I have another close friend whose birthday is also the 8th, so a lot going on there. I had bought tickets to see Stomp for Mother’s Day, several months ago when I was expecting to feel fine. Instead I had finished nine days of rads, and then had a wonderful Saturday at a benefit that some amazing friends put together to raise money for me and my family and I am so grateful for that. Ran around Sunday and then last rads on Monday. Who ME? Overdo?

Slept Monday night, through to Tuesday morning and then daughter was home for two days with a sinus infection. Wednesday I was falling apart and ended up at the ER getting fluids. I was just getting to the point where I needed to do something and that made a huge difference. Part of it was, I think, that when we radiated my lower spine we were also hitting more digestive area, stomach etc and food and fluids were a lot tougher to handle, I had also been in more pain and on more medications and had a tough time taking my supplements. Who would have thought 10 treatments on my back would be harder than 20 on my brain? It was though. A lot. Radiation just kicked my butt this time.

So now, on the 17th I’m a bit better. I’m still really tired, only one pain pill at night and one during the day and they are only the 4-6 hour ones so I’m doing okay. I can’t go far walking wise which is frustrating and sometimes frankly, discouraging/humiliating/embarrassing, but we do what we need to do. I can tell you the little motorized chairs at Kroger are a lot faster than the ones at Target. Those little motorized things at Target just crawl! I may have to look at finding a scooter or something so that I can do the things I want to this summer with my kids but I’m working on those nerves heading into my legs and on my strength so maybe I can avoid it, or just keep it as a backup option.

My stomach stuff is subsiding so I can get back on better track with my nutrition and supplements, sometimes we just have to do what we can and then get back. I’m also getting back to my mind and working on stress, anger, frustration, and get my body and mind to relax. I’m going to be here awhile!

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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.

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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.

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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.

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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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