Ashley’s long fight

It is with a heavy heart that I report Ashley passed away on August 17, 2011. After fighting hard for over two years she lost her battle with IBC. Thank you to all who supported and encouraged her during her fight. Donations may be made to Hospice of Cincinnati in her name.

Still waiting on NED

but back to radiation instead. I had been hoping to have MRI’s follow up on my brain and spine during the week between the two trips but of course with 4th of July and all, that didn’t work out at all. That Friday before we left I finally saw Dr. G the radiation oncologist but there was no way to do anything that day and I was leaving the next day on vacation anyway so we set up for after vacation. I did have some ‘newer’ issues with some numbness and tingling in my left hand. Most of this has been effecting my left side so far and that is kind of helpful as I’m right handed generally and it allows me to drive. My husband was able to go to this appointment with me and gave me a reality check too. They always ask you to rate your pain on a 1-10 scale, and usually at the doctor it is pretty low. He got on me. Ashley, there are days you can barely get out of bed and you sleep almost the entire day and you are taking your pain killers regularly. Would you be straight with these people!

We got back from Pensacola on Saturday and I was at the hospital up the street bright and early Monday morning for MRI’s of my brain and my entire spinal cord. Those tests average over an hour each which amounts to a LONG time in an MRI machine flat on your back. MRI’s are also really loud but I still almost managed to sleep. Radiation oncologist calls that afternoon with results, generally things shrunk – this is good – but there are some new spots on the spinal cord on the back of my neck. That wasn’t an area we were treating and we weren’t really too surprised due to the numbness in my hand. Went and met with a radiation onc at the location up the street and started radiation that day. They are zapping my neck area and they told me I would probably get a sore throat. Nothing last week really but last night my throat started to hurt, it came on really fast and is quite impressive. WOW!

Now last summer I had mouth sores and Dr. B prescribed Myles Mix mouthwash, I think that was for healing. You swished it and let it coat your mouth and throat. It has and antibiotic evidently as well.

Dr. G gave me a script for MAGIC mix. This one is less about healing and way more about comfort. I think it has lidocane in it. I love it, the taste isn’t wonderful but it is better than the other and everywhere it touches goes numb. It only lasts a short time sadly and while I’d like to drink it like the imposter Mad Eye Moody drank the polyjuice potion I’m pretty sure that it would numb things that shouldn’t be numb after time.

Three more days of this and then back to healing but the fatigue from radiation can often last for months, which puts me through the rest of the summer and into fall. UGH. I did go to the grocery store today and did it under my own steam, not with a scooter, I was slow and I’m exhausted but I did it. No gym today.

Some specifics on the other stuff from the MRI’s. The 3cm (about 1in) spot in the middle of the brain was down to about 2cm (so about 1/3 smaller). The 1.4cm spot in my front left lobe is down to about 7mm (so about 1/2), the 9mm spot on my conus (bottom of my spine) is measuring about 6mm (small and about 1/3 smaller). There were little spots in the brain and along my spine, many of those disappeared and the others shrunk.

Awesome Summer so far all things considered…

There is an amazing organization called Inheritance of Hope. Their mission is “Every Family Deserves a Legacy”. They are an organization that sends families where a parent has a life threatening illness on memory making trips. I had sent in an application for us during all the radiation and gotten a note saying we were on the wait lists for this year. About a week later I get a call and there has been an opening to go on a retreat to Disney about three weeks later in June! I cried. We went. Sadly my husband couldn’t join us due to circumstances at work but my mom went with us. They also extended our airline tickets a few days and with some help from some other family we were able to go down early and go to SeaWorld and Universal, neither of which I had ever been too. I LOVED SeaWorld! We all did.

My Dad and younger brother ended up driving down and going with us those first few days due to some miscommunication I had about getting help with the kids, SO we spent three days with Grandpa and Uncle, they left, Grandma came and we spent almost four days with her! It was a great trip. My family once again was awesome and we are still so blessed.

Inheritance of Hope and their volunteers were amazing. Jessica was with us and I mean with us. She went on rides, made sure we had our tickets, our disabled information so we didn’t have to wait in line, helped with food, the kids, everything. The organization made sure I had an electric scooter rental so I could get around, they provided all our meals during the retreat days and had Mickey come to dinner with us the first night and all the kids got to meet him.

We get home from that trip, sufficiently exhausted and had about ten days at home to recoup before we were off with family again. My fabulous sister rented a seven bedroom home on Pensacola Beach complete with its own pool and across the street from the beach itself. She arranged for the family from here to drive down (about 11-12 hours) and also for some of the family from Texas to drive over (about same drive) and 17 of us holed up in a house on a beach for a week. The kids (six of them aged five to fourteen), the cousins (three and two spouses) and the parents (the other six). Overall we did pretty well, there is always drama with that many people especially relatives but it was great!

We had some amazing food. Fortunately I seem to be from a family of good cooks. We had Bbq Ribs, Chicken and 40 Cloves of Garlic, Pork Roast and we did go out a bit. The parents went out one night and the cousins took the kids to Landshark Landing (a Buffet Restaurant on the beach). The next night the cousins went to dinner to Hemingway’s and had a trigger fish special with artichoke hearts and spinach with garlic mashed potatoes that was really good.

My sister and her partner brought down a sailboat, a Hobiecat they recently purchased. Between weather and a mishap it didn’t get quite as much use as I think they would have liked. I didn’t ever get out on it, neither did my son and I don’t think one of the other kids but it really is okay, everyone had a fabulous time regardless. There was a huge pod of dolphins that went past one morning and that is always cool to see, especially for kids.

Mom and I flew, I could never have done a car ride that long, it would have been painful and exhausting. The last night they took us to a hotel near the airport – everyone was leaving really early and no one had room in their car the next day. Our flight wasn’t until the afternoon that day so we got the opportunity to see even some other cousins.

The family we were with during the week is my Dad’s side. The cousins we saw on Saturday before we left was from my Mom’s side of the family. My mom has a brother and he has three sons raised in Alabama and Pensacola. His middle son is in the Army and leaving for Korea in several months and got married recently. He is home from Arizona right now and wanted to show his new bride beachesw on the East coast as she was raised on the West coast. His mom lives in Alabama and they were visiting her so they drove to the beach and and happened to be staying close by. So my cousin came over and we got to see him for the first time in years – he is such a man now – and meet his wife and see his mom who we also haven’t seen in years. It was very nice, we didn’t manage to get in touch with some other people nearby it would have been good to see but it was a busy week and I can’t wait to go back!

I cannot believe how close school is, my daughter still has a week a long camp, we have passes to many local attractions and I’m looking forward to using those. We have a lot we want to do but I need to pace it.

I did come home and have scans this past Monday, mostly better, treating some new things on the back of my neck but I’ll elaborate on that next time.

Healing but it feels like it is taking forever

I know I just finished the brain radiation at the end of April, and finished the spine radiation in early May but it feels like it is taking a long time to get back to feeling even kind of normal. I had a few days where I was eating everything in site and then the stomach started acting up again and now we are back to food being unappealing and being nauseous a lot of the time anyway. Legs are still not cooperating like I’d like them to, and I am tired like I’ve never been tired before.

My radiation oncologist seems to think that it is still related to healing: “We did a lot of damage to your body Ashley.”. I do understand what she is saying, last year it took almost six months to recover from three doses of one of the chemos. I get it, I just still wish I was healing faster.

Part of it is probably a prejudice on my part too. A little over a year ago, just after the double mastectomy, they wanted to do radiation on the right side breast area as a “prophylactic’ measure. Just in case there were still cancer cells floating around over there in that skin even after all the chemo and the surgery. I was debating it. I know several survivors who have had long term side effects from treatment and the ones with the worst long term issues, they have all been from radiation. I have believed all along that it is harder for our bodies to heal from radiation and takes longer and I guess I am proving that. Time to shut up and wait I guess, and go to the gym and try to eat better and get back on my supplements so I can get my body repaired ASAP!

Feeling “disabled”

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.

Mom and Dad

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!

Tough week but we’re at two years!

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!

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.