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Archive for the ‘Treatment options’ 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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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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I typed this late on Tuesday night/Wednesday morning….

Are you sitting down. I hope so. Just about eight hours ago I was told I have brain mets, it has spread to my brain. NED was supposed to be getting closer not moving further away. I’m typing this now to document how I feel. Mostly I’m terrified. I look at my kids and want to cry. I’m thinking about all that I need to do and then alternating it with – hey, there is treatment, this isn’t the end. But I’m scared.

A few days ago, Friday or Saturday, I felt like my prescription sunglasses weren’t quite right. It has been two years since my last eye exam and these sunglasses are at least 5 years old so I’ll go to the eye doctor. On Monday I realize it is worse. That’s strange. Call Monday, the doc I went to doesn’t take our insurance. Tuesday morning I am seeing double, if I close one eye everything is fine so the pictures aren’t lining up. Find a doc who can take me and think, oh, I should call my oncologist.

She sends me for a brain mri and they read it immediately. The oncologist on call from my doctor’s group gets on the phone and says there ‘are multiple spots in your brain that appear to be breast cancer’. I ask how many, she tells me about twenty.This isn’t happening. I have two beautiful children I need to raise. This cannot be happening. It can’t. What do I do? How do I do it? I mean I have to do whatever it is I have to do but I thought things were looking up. All the other stuff was basically stable – that was just 10 days ago. This doesn’t fit. I’m tackling it, I’m trying to do the right things. I’m eating pretty well – okay I had sugar last week but I’m doing pretty well. I’m taking the Chinese herbs, I’m trying to work out the mental stuff. HOW THE HELL DID THIS HAPPEN!

Mom gave me a ride and I’m in no position to go home yet after that conversation. I’ll see the kids and fall apart, go to Mom’s. Call husband, sister, stepmom, and get my prescription for a steriod filled on the way. Daddy comes over, tell him and the three of us alternately talk and cry and talk and get mad and talk and cry and so on. Come home to help put my kids to bed. Manage to sleep for a couple hours. Woke up and found Heather, Sara, Karie, Chris and Julie on Facebook. Jules has had brain mets since ’08. Chris has had stage iv bc for eight years.

It is now almost 3am. I’m going to try to sleep but I don’t see it happening. I’ll call my onc first thing in the morning and make an appointment. They will likely recommend whole brain radiation which can have some yucky side effects but I will keep on fighting so if that is the route I need to go. That’s what I’ll do.

I’ve been in touch with Julie and Leonard about alternative stuff and I’ll talk to Eleanor (Blog = Rolling on the Edge of Life) who has almost my exact diagnosis and tomorrow we get up and fight some more.

I actually got mad for a little while tonight. I’m calm right now. I need to get my options together and figure out a plan. Quickly. This one eyed thing doesn’t work for me.

My friends have gotten me through the night. Things will look better in the morning. They always do.

FOLLOW UP
I went to the radiation oncologist on Wednesday and there are lots of little spots throughout and it is effecting my vision so they wanted to start something quickly. I am doing whole brain radiation for 15-20 treatments. Have done two as of the end of the day Thursday. Will talk to the kids on Saturday….

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Sarasota
So I had just lightened my hair and drove across Florida. It was a little cooler and cloudy that day so a good day for travel. Went to see my Aunt in Sarasota, we hadn’t had a visit that was just the two of us in a long time so that was fun. We went to dinner, went shopping, went to the beach and then she drove me up to Tampa so I could visit another beautiful warrior woman whose bone metastasis were keeping her from the Annie Appleseed conference. I hadn’t seen or heard Darlene’s voice in 15 months and it was SO great to see her. We ate at The Cheesecake Factory (no not organic) and I’d never been before, the food was outstanding for a chain restaurant! I met another friend of her’s, another Eleanor who is a long term survivor too. I really enjoyed the time with my Aunt and am grateful to have her in my life.

Annie Appleseed Project – 2011 Annual Evidence-based Complementary & Alternative Cancer Therapies
I had written to Ann Fonfa, the organizer of the conference and the founder of The Annie Appleseed Project and she got me in touch with Linda from Sarasota who gave me a ride to West Palm for the conference. That was a very enjoyable 4 hour ride for me, I hope it was for her. Those who know me are probably at least smiling because they know that this lovely lady got to hear way too much about me but I’m kind of an open book that way.

Julie made it down from the Pacific NW which was awesome! She had a fabulous roomie in Luana and I had a new roomie too, Elise from NY. Elise filled me in about a couple of things she thinks I should look into and that was helpful. She is a pretty straight shooter too. Luana does some naturopathic things and works with pharmaceutical grade essential oils that can be applied topically and even ingested. That was very educational and I decided Luana was going to be my friend (several of my friends who also had that experience are laughing as they read this). She lives in NY as well so… road trip! Not today but definitely a trip is in order.

I got to know a couple of the gentlemen from American Biosciences a bit better this year. Julie, Luana and I went to dinner with them one evening and that was a lot of fun. We danced at City Place, they have an outdoor band and enjoyed food and wine. Did try to do a little kinesiology with Luana out by the pool and of course – it rained. She has the most wonderful little ‘therapy’ dog, Fonzie, who liked me, she even let me take care of him some of the time.

Really enjoyed presentations on IV Vitamin C, nutrition, mushrooms, oncothermia and hyperthermia, oh and any of my friends who are looking at mammograms; ask about thermography instead. Thermography can detect problems years before mammogram. Tried out a biomat and ionized alkalizied water.

Ft. Lauderdale
My cousin, lives in Ft. Lauderdale and I hadn’t seen him in WAY too long so he came and got me on Saturday and I stayed two nights with him. His mom, flew down from Pensacola to see me and I got to meet his wonderful girlfriend. We talked, watched movies and made it to the beach for one last visit, it only was a short one because oh hey, it rained again, but it was the beach.

My cousin is somehow going to be 30 in a few weeks. Still trying to figure out where the time went. He has grown into quite a fabulous man and I think he is wonderful. His mom and I stayed up way too late talking on Saturday night but I hadn’t seen her in a long time either so it was worth it. I LOVE MY FAMILY AND AM BLESSED TO HAVE THEM ALL!

and back to real life
I flew back home to my children and husband on Monday. It was a long time to be away from my kids and I was so happy to see them. They are my reason. Of course my daughter came home from school sick that day and was home for the next two days too, she so seldom gets sick, someone suggested she was “Mommysick” and just wanted to be with me and you know what, that is fine by me (she was legitimately sick too).

I love the beach, I know it isn’t for everyone but it is for me. I really do wish I had gotten the courage together when I was younger and moved to Florida and the beach. I love it there, I really do, I could walk on the beach every day and never get tired of it but my life would be totally different right now and pair that with the fact that I wouldn’t trade being close to my family. I wonder how many of my family members I could get to move… Husband? Mom? Dad? Sister? Who’s up for it? We do have two places we can go and stay this summer though if we decide we want to, hmmmmmmmmmm

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