Archive for the ‘Health Updates’ Category

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.


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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!

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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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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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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 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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