The more the merrier!!! Bring it!

So saw the doctor today and got some new scans. They did a brain MRI, and a spinal MRI. Low and behold they found out the reason for my entire right arm being in pain, and randomly going numb. Apparently I have a new met (tumor) that is in my spine. Its pushing on the nerves in my shoulder, which is the cause of my pain and numbness. My whole body scan is still set for tuesday and see the doc again on wednesday. This will tell us if there is cancer anywhere else.

Whats the plan? Well after they told us the news they had us go see my radiation oncologist. As of right now our plan is to zap the met with radiation. This will help the pain. Even if they find other mets on my spine we cant do radiation on them. The risks are too high. It would cause me to become very very sick and so far my melanoma is resistant. They wouldnt be able to give me a high enough dose to help. Zoning in on this one met thats causing pain will mean they can zap it at a higher level. Also, I wont as sick. This is our best option right now. Granted when we find out more on wednesday our plans will likely change. They need the entire picture before we can do the treatment planning. As for now we are 100% doing radiation on the one portion of my spine. This is to help me not be in pain daily.

Today they went ahead and got me into the radiation computer so they can program the machines to me. They also got my new mask made. This mask goes half way down my chest. (good times) They plan on starting radiation on tuesday. The doctor is eager to get my pain under control. Im pretty happy about it.

You know its bad when the radiation therapists see you walk in 2 weeks after they last saw you, and their faces sort of sink. When I explained why I was there, they gave me hugs and we moved forward trying to get treatment planned. Im lucky to have a good team that I enjoy spending time with. Im now wrapping my head around a 3rd round of radiation. Granted its in a new area (not my head) but still. Anytime you bring the spine into things (not to downplay the brain) the risk is great.

So that is where we stand. Crummy news before a long, holiday weekend. I still plan on enjoying my weekend despite the news. We have a lobster boil, and a concert to go to. Im super excited. Even crappy news isnt going to ruin this weekend for me. I may have to be drugged out of my mind to be comfy, but Im going to that concert!

Nurse Called Back

So the nurse called me back, late this afternoon. They moved up one of my scans to tomorrow, and added a new scan. Apparently they are worried that my arm always hurts, and randomly goes numb. (yeah yeah shouldve called sooner) They are going to do a MRI of my brain, and an mri of my spinal cord. The MRI will show the brain tumors I have, and what the radiation has/hasnt done. They added the spinal cord as to see if there are tumors there. That would answer the question as to why my arm hurts, goes numb etc.

The good news is we will get an earlier glimpse of what my brain looks like after zappage. (5 days earlier than expected!wooo hop!) Bad news is we still have to wait for my whole body pet scan. (which will show any new tumor growth anywhere else). Bad news again is the spinal cord deal. Not sure what they are going to do if its traveled there. The likely-hood is higher since its already in my brain, and fluid around my brain. Im hoping and praying that is not the case. So many variables....

They plan on having the scans read to us tomorrow. We will know the results same day, which is helpful. So I go in bright and early, and (fingers crossed) will know by noon whats up. The spinal scan will last over an hour alone. Then the 45 minute brain MRI. Maybe I can get a nap in during the scans!

So until tomorrow.....Then I will post what news we have. Good night!

One thing after another

Its starting to just be funny at this point. If I didnt have a sense of humor I just may cry.  Between terrible pain in my right arm, and hives daily its just become funny. (in a weird sense) Woke up feeling great, then the arm pain came, and now the daily dose of hives. Awesome. I finally gave in and put a call into the doctor. Im now waiting on the call back.

Now I wait patiently for the call back. They arnt going to tell me anything new. I already know that. I mean you get to a point where they just drug the heck out of you. Ease the symptoms... Blah blah. Same stuff they always say.

On a good note they finally officially scheduled my test times next week. Im ready to get them over and done with. We wont find out the results until the next day around 3pm. We are trying to keep as busy as we can until then.

For now we wait to see if the nurse calls me back......

What a Weekend!

So we got up bright and early saturday morning and headed off to the Schmit Creek house for the weekend. I finally felt well enough for the drive up, and the stay. We had the pleasure of spending time with my in-laws and even my sister-in-law and her family. I didnt get to spent any time outside. The sun bothers my skin more so than normal lately. Overall it was a nice trip. Elliot did have an issue sleeping and managed to keep Eric and I up a good portion of the night (which is odd), but we managed.

I felt well for most of the trip. Today, I started to feel kinda crumy, so managed to take a nap. That helped for a while. We came home early this afternoon, and as of just a few minutes ago I burst into hives. Random?? Yes. No idea why. Im also starting to feel a bit ill. My throat seems to be starting to have what looks like the beginnings of thrush. Gotta love it. Thrush is a common side effect of radiation and all the medications that go along with it. Lucky for me, I have a script for it. Just another thing to add to my list. Seems like every time I start to feel okay, BAM! Something hits. The joys of having a low immune system.

So now we recharge from our 24 hour creek visit. It will likely take all week.... lol.

Me and Baby! 

Rocking the Superhero look

Ive had quite the interesting week. Everyday tends to bring something new along. Woke up the other day finally feeling good then BAM! Erupted into hives an hour later. Next day, woke up and my entire bald head was flaky and red. It gets better, half of my face is also angry red. It crawls from my head to my forehead to right below my eyes. It looks almost like a mask. Luckily, it doesnt really hurt unless you touch it. (all of course is due to radiation)

So with my awesome superhero look, we decided to work on a cool name. So far I think we settled on 'Radiation Girl!' Not sure what my super powers are, but we have the look and the name. Surely we can come up with something fun. ;) Hey, gotta always look at the bright side.

Other than that Im doing well. Ive stayed home due to not wanting to frighten anyone with the current look Im sporting. So I dont have anything fun to blog about. I was lucky enough to have my grandmother stop by with the chicken salad I had been craving. (granted thats almost gone now) yummy! All is pretty good right now. Feeling pretty good, and hoping it sticks thru the weekend. I have high hopes to be able to get out this weekend and spend time with family. All we can do for now though is take it one day at a time.

Monday Monday

Today has been the best day in the past 4 days. I feel pretty good, still recovering from a rough weekend, but overall better. I woke up this morning with very little hearing in my right ear. Dont be alarmed, this is normal. Its a side effect of my whole brain radiation. This may be too much info for most- So here is your WARNING!- The skin on my head is raw, blistered, and flaky. Sadly this also goes for my ears. I know gross right? Radiation is awesome...it keeps on giving even after treatment is over. My hair could take 6 months to start to grow back. So for now we are just riding out the effects. But back to my ears- So they are flaky, blistered, raw disasters. This is also happening inside my ear, which messes with my hearing. That said, I can hear its just muffled like being underwater. Luckily, this is only my right ear. So all is good.

Now a quick run down of the my radiation side effects. (all of these are normal and expected)
-Loss of hair
-Skin irritation (blisters, super dry skin, sunburn like irritation)
-Nausea
-Loss of appetite
-Temporary loss of hearing
-Dizziness
-Tiredness/ lethargy
-Changed taste (my coffee started tasting odd, and now cravings for food I dont like normally)

Other side effects that I dont have- but could happen
-Sore throat/Mouth
-hypothyroidism
-Memory loss
-paralysis (very slim chance, has more to do with spine)
-Loss of eyesight (tech they dont know my I can still see out of my right eye.they say I shouldnt be able to)
-Seizures

Okay it looks bad on paper, but its really not that bad. Ive been dizzy since october its a side effect of my meds. Ive learned to deal. Everything else we just take a day at a time. Luckily most of these go away with time. As the radiation wears off the side effects go away. Hair loss may be here to stay, we just dont know until it decides to come back.

One good thing happened today! I got my script filled for my nerve pain in my arm. My arm just randomly goes numb, and always hurts. This is a side effect from my lung tumor removal. They had to cut a ton of nerves so them firing back up hurts. So my right shoulder has been in pain for a bit. As soon as I took the meds the pain stopped! woohoo. Not sure why I didnt fill that sooner. Id stopped taking them as my arm had stopped hurting months ago. So glad I refilled that. And happy that its already working. Normally it takes a few days to really kick in. Its more of a long term working drug. It didnt make me pain free, but it did cut it down to a manageable level.

Okay enough of my randomness. Point of this post, feeling better than I have been in days. Still working thru the side effects but overall there is improvement!

Smile of the Day

Everyone has heard the statement that laughter heals. I totally believe this is true. (along with happy frame of mind etc. ) Laughter does help heal. That said having a 14 month old kid in the house can be challenging at times. Im a stay at home mom/cancer patient/wife. Im blessed that my husband works the evening shift so hes able to help me during the day, and Elliot is asleep most of the time hes gone. (so I really only have a few hours by myself with the kid) All that said sometimes Elliot can be a challenge. Lately his new trick is climbing on anything he can. So we are always having to watch him. Even in a baby proofed room, he can find something to climb ex. Toy box, rocking airplane, the dog....

Today, Elliot decided to share his snack with the dog. Normally, we dont feed the dog people food. I really had a hard time telling little man "no" when it was such a sweet 'boy and his dog' moment. I actually started laughing when he emptied his entire snack bowl because feeding goldfish one at a time was too slow. :) For your enjoyment I did manage to snap a few pictures of the two. 

Moral of my post...even feeling crummy finding joy/laughter in the little things helps. 

What a Weekend

Ive spent most of this weekend in bed. I woke up yesterday in pain. It hurt to do anything but curl up into a ball. My head was killing me, and walking made me want to puke. So Eric watched the baby, while I stayed in bed.

When I woke up this morning Im feeling a bit better. My head is still fuzzy (which is normal these days) but I no longer feel like puking when I stand or walk. My tummy still doesnt feel 'normal', but its just a mild tummy ache compared to yesterday. I can sit up today so thats progress! Im taking it slow today as a result. Ive only been up an hour or so, so Im trying to just take it slow and hope I start feeling better. Maybe today I can make it out of my pjs.

My parents sent over a care package last night. (saturdays are normally family dinner nights) Since we missed dinner my Dad and Sister popped by with some food. We were greatly appreciative. They had made some awesome pork chops, corn, bread and cake! I mandated to get a few bites of each in. (shocking I know). It was nice to be able to see them, even if we couldnt make it to dinner. I always enjoy our weekly catch up meals. Its a family tradition that we love.

So on our agenda today? Not sure. Im trying to take it an hour at a time as of right now.

Rough Night

So we know Ive been dealing with all sorts of side effects from the radiation. As of last night it seemed to have gotten worse. I have been getting dizzy more and more, and my eyesight is blurry. Every now and then sharp pains will happen during a dizzy episode. Its not bad, just a really odd feeling. (I  know I keep saying I just feel odd, but there isnt a better explanation). 

Early this morning 2 am (as usual) I woke up in pain. My legs felt as if someone were stabbing them. I was in agony. I took a pain pill and tried to get some sleep. No such luck. I ended up pacing the floor with the dog, as it was the only way to sorta keep the pain down. Just as quickly as it happened it vanished around 6 am. 

Eric is watching me closely. Im okay right now just still really odd feeling and shakey. Easily dizzy etc. This is all expected due to radiation and/or the tumors themselves. If it gets worse we will call the doctors. As of right now we just have to manage it, and try to rest. I expected this to happen, as its very similar as to how I felt my last radiation treatment before christmas. We knew it was a matter of time. 

We are still struggling with the skin irritation and burns. I tend to slather myself in baby lotion hourly to try to keep the skin from hurting. I swear my bathroom has more baby lotions than my kids! Ill be happy when my skin stops burning and I can touch a pillow without pain. Or wear a hat... lol. 

So thats where we are today. Taking it a bit at a time, and just trying to get some rest when I can. 

Interesting Thoughts

So those that know me know my attitude on my whole 'cancer' situation. My go to motto (depressing as it may be for some to hear) is that as long as there is a greater reason to this Im okay with the outcome. If my story touches one life, makes one difference its worth it. Even if the only reason on me being here is to help mold my little boy for a short period its worth it.

All that said, I found a passage tonight that really brought my mindset to home. People tend to look at me like Im nuts when Ive been telling them my theory on my situation. Hey, my mindset keeps me sane and happy. That should be enough, but I digress....

"God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us." 2 Cortinthians 1-6.

Ive had the pleasure of chatting with fellow cancer patients during radiation the past couple of weeks. They all seem to look at me unbelieving that I have a good attitude. When they hear my diagnosis they then look at me with pity. I talk to them, and try to share my hope and joy. Some of them just dont get it. I understand everyone is at different coping stages. I have a hard time with the cancer patient that is refusing chemo because of the potential hair loss, but I chat anyway. I feel the need to explain why my attitude is okay. Why Im in a mostly happy place. Why Im okay with the cards Ive been dealt. Im not denying that I think my situation just plain sucks. But I have faith. I have faith that this is for a greater purpose. I choose to be happy daily. I choose to make the best of a bad situation. For those that dont get it, I feel bad for them. Life is too short to not see the bright side and be happy.

Radiation Done!

My final radiation round is done! WOOHOOOO!!!! No more brain zappage. Today my newest side effect is I feel like my ears are melting. The radiation has burned the inside, and back of my ears. Its like a bad sunburn. Terrible pain. So add that to my red red head thats already flaky, to my ears, and I look awesome! I still feel a bit 'off' though. So thats a bit concerning, but we are monitoring it.

Treatment went as expected though. The techs gave me hugs afterwards and said they never wanted to see me again. (I dont want to see them either!) So now we wait. September 3rd I get my new scans, September 4th we hear the results. I know I keep throwing these dates around, but they are HUGE. We will know so much from these appointments. Like life changing news. Its just a matter of how bad it truly is. We are trying to remain positive but honest with ourselves.

In the meantime, we are watching me closely and managing side effects. We are also trying to plan little outings and family times. Along with planning weekend events for more memories. As long as I feel well enough we managed to get tickets to The Band Perry in a few weeks. It will all depend on how Im doing if we go, but Im excited. We are also tossing around a Zoo trip for Elliot once the weather cooperates. Everything I want to do is pretty local, so its just a matter of getting out and doing it when we can.

Radiation mask. The marks are for lining me up for the 'Lasers' . The use the clasps to bold me to the table. 

Dont Cuddle after Midnight!

I learned a valuable lesson early this morning. Dont cuddle the baby after midnight. He woke up at around 3 am from what I describe as a bad dream. I cuddled him, got him some milk then rocked him to sleep. He was soooo cuddly I just sat there for the next 3 hours holding him. This was my first mistake. At 6 am the little gremlin woke up, and became a holy terror. Im not sure what happened, but my crib baby did not sleep well. The rest of today he was a little crazy angry baby. Never again will I cuddle after midnight! :) Okay quick cuddles then back to the crib.

Everything else has been okay today. I had some extra energy this morning but that quickly disappeared. By noon I started to feel odd (best description). I just felt like something wasnt right. I still feel that way now. Its like Im dizzy, shaky, tired, and weak all at the same time. It just hit like a ton of bricks. Very odd feeling. I mean Ive felt tired this time, and my last rounds of radiation this is just a different feeling though. Im still having vision issues, and appetite issues so that hasnt changed. The good news is my last round of radiation is tomorrow! Woo hooo!!! Im excited for my head to be angry red, and burned. Lets start the healing process. I cannot describe how my head feels. Burning, flaky, bald, and always cold. It hurts to even lay on a pillow. I cannot explain how glad I will be to be able to sleep comfortably again.

For now Im curled up in my recliner, trying to get some rest. Eric is keeping a close eye on me due to my 'odd' feeling that something isnt quite right. Im sure Im fine, and just feeling the side effects of my daily brain punch. But one cant be too safe when it comes to this.

My own update.

Ive been taking it easy. My head is ravaged from the radiation. My scalp is burned, hairless, red and just looks like a terrible sunburn. Anything touching it hurts. Literally a pillow or silk scarf hurts. I cannot describe the pain. The nurse made me some special lotion to help with the pain, but so far it doesnt do much. (unless making my head really shinny count? I swear it might just be turtle wax). Along with that Ive got some pretty bad pressure in my eyes. Makes my vision screwy, and eyes watery all of the time. Its just easier to keep them closed. My appetite is gone. No idea why. The steroids are supposed to make me hungry, but are not doing it. If I didnt force myself to eat something during the day I wouldn't eat at all, and yes Ive lost weight due to it. My body just hasnt been telling me Im hungry, no hunger pains nothing. I do eat, though. I eat so that meds dont screw up my tummy more. (last time they gave me ulcers) Other than that and the random insomnia Im doing okay.

I have a whopping 2 radiation treatments left. Then we wait. I have scans on September 3rd, and meet the doc September 4th for the news. This is a huge appointment. It will tell us what the radiation did or didnt do, and ultimately give us more of a timeline as to what we are looking at. I know only God knows our time etc, but they can get pretty dang close. I just dont have that many more options left. Chemo isnt an option, Ive maxed out radiation so thats done, and Im too bad off for clinical trials. So we are at a waiting game. Im anxious to hear and see what the doctor says.

Ive had some fun this week! My mom took me for a pedicure. (this is only my 2nd pedi ever from a professional) I decided that since I dont do it often to get a crazy color so we went with Green! Bright green toes! For some reason this makes me happy. We also had lunch, and 2 dinners with my parents. Its nice to just get out, without really being out too much. My multiple naps, and early bed time tends to get in the way of being 'social'. That, and I think it goes back to them getting me to eat more. :) Overall, its been a good week. Stayed close to home, and tried to rest. I think thats our plan for a lazy sunday as well....

My Heart Breaks.

I cant sleep. Ive been following another blog for a while now. It is a sad story of a mother and daughter with Melanoma that hits a tad too close to home for me. The cliff notes version? Mom finds out shortly after having a baby that her melanoma is back in a bad way, she ultimately looses her battle. The baby they then find has the same melanoma. Baby wasnt given long, but fights hard and survives past her 2nd birthday. Unfortunately, one of her brain tumors burst this week, and she just past away.

My heart breaks for this family. In 2 years they lost 2 precious lives to this terrible cancer. I can only weep for them. I tend to have a positive outlook even with my own terrible melanoma diagnosis, but this juts sucks. This child was doing so much better. All her treatments had been working, and her brain tumors gone except 1. They had hope. It was all gone in an instant.

I really do recommend her families blog. They have done a lot to raise awareness for melanoma, along with money for cancer, and the Phoenix childrens hospital. www.addisonsarmy.org

My prayers are with her family. I know how rough this road has been, and how supportive they have been. They still are doing some amazing work even in this sad time.

Wednesday is prime Zappage day!

Today we had a new radiation area. They are amping up and zapping the rest of my brain to max levels. This will be going on daily for the next 4 treatments, then we are done. My last treatment day is tuesday. Then the waiting begins. 

We have noticed a slow decline in how Im feeling. The radiation is finally taking its toll. Its always a slow process. My hair is gone, more keeps falling out daily. Good news is there is less to fall. Im exhausted all of the time. Sleep depravation due to steroids stinks, but yesterday and today I have felt just run over. I can hardly keep my eyes open any longer. I feel pressure in my head constantly, which is again expected. On top of it all I have no appetite. I eat, but not because Im hungry. I eat because I have to to take my meds. Ugh. Oh, and the night sweats have started. Waking up in puddles sucks. 

Other than all that we are doing good. :) Its almost the end of the week, so we will get a break from zappage. Maybe I can get caught up on some rest. *crossing my fingers*.  The doctor says everything in treatment is normal, so we should be on track to finish all treatments as planned. So that is the good news! 

Cancer Fueled Rampage

Ha...That is what it felt like last night. Stupid neighborhood dogs barking just when I had finally gotten to sleep. Barking non stop at a turtle, that just so happened to be in my yard. Non stop barking. After me not sleeping for 48 hours I lost my cool. I was fully prepared to go over and knock on the door and give this lady a piece of my mind. Now if you missed the previous story (she had rang my doorbell at 7 am to notify me of a turtle in my yard, that was annoying her dogs. I dont take kindly to doorbells ringing at 7am). This is a WILD turtle. What the heck am I supposed to do with it!? I expected it to go on its merry way.

So finally, I lost it. I was prepared to get up and start the rampage when my husband handled the situation. He got the shovel and removed the turtle from our yard. YAY! (I really didnt want to blame the turtle). Point of the story? Dont mess with a radioactive, insomniac cancer patient!

I gave up.

Hair loss is a messy business. My hair didnt start out very long, but 3 days of hair falling finally drove me nuts. I swore that Id just let it fall but by about 1 pm today I gave up. I was walking around leaving clumps of hair places. One short trip to the bathroom left a giant bald spot/ donut ring on my head. Like the dome still had hair, but everything else was missing. (lovely mental picture) so I gave up. I called mom. "Please bring the hair clipper ASAP!" She arrived within 15 minutes, toting a black bag. The 3 of us got down to business. Eric, mom and I very delicately started to cut off the remaining hair. (there really wasnt much left)

Now if you remember my scalp is burned. It feels like its on fire. So we couldnt take all the hair left off. You can see where the radiation has caused baby butt smoothness on many many spots all over. However, there are still a few spots shedding. So very very soon my entire head will be like we took a straight razor to it, when we didnt. Right now if my head is touched (ouch) you leave with tiny hairs all over your hand. Yes, its still falling, but its not in giant clumps. Im not nearly as covered in hair. The other perk is Im not leaving accidently hair around for Elliot to find. (worse than owning a shedding golden retriever! )

Elliot didnt know what to think. He took a nap then woke up to a momma with no hair. He was a bit shy, then finally crawled into my lap and started petting my head. After that acceptance! yay!

So yes, I gave up. Screw it. We knew it was all falling out. Not gracefully. My scalp blatantly shows it. I just couldnt handle the feeling of being covered in hair, and multiple outfit changes.

Now its midnight and I cant sleep. Stupid steroids, and tender head. Even a pillow touching me is too much to handle right now. Guess its another sleepless night.

I am my Fathers daughter...

Its about to be official. The Dad haircut (or lack of hair). Its coming out in handfuls. 2 showers a day and it keeps falling. An attempt at blow drying it had me laughing. I think it blew hair off my head rather than dry it. As of right now its VERY VERY thin. I still have hair, but its over half gone. Keep in mind that I have really thick hair. Its falling out equally all over my head. Not just spots this time. Its all going! Im ready for it to just all fall out already. I shed badly wherever I go. Clumps fall out everywhere. I can spend an hour in the bathroom just brushing it and it comes out. No pulling, no pain, just falls out. I need to start carrying a lint roller.

Today radiation went well. The radiation therapist asked if I got a haircut. HA! I told him nope..its all you buddy. Your brain frying finally is taking the hair. (he apologized and felt bad) Hey its a side effect we all knew was going to happen.

I didnt sleep well last night. Steroids keep me up. Still having headaches, sunburned skin feeling, no appetite etc. Nothing really new on that front.

On a happier note! My 2 year wedding anniversary is today! 2 years with an amazing man. I never would have guessed that we would be here fighting a battle at our 2 year mark. Looking at our wedding pics I realize I look nothing like that bride anymore. My hair is almost gone, face a bit puffy from meds, and just looking all caner-fied.  (I know I made up a word there). Point is we are as strong of a couple as ever. I wouldnt change that.

Cant Sleep.

What an interesting few days! Friday I had treatment as normal, then went and had lunch with my best friend. Its nice to be able to escape every now and then and somewhat pretend everything is normal. Even if its for a few split seconds at a time. The trip didnt last too long before I had to get home as I wasnt feeling great.

It took a few days but we also did some major closet clean outs! Between the baby stuff, and some of my stuff I have a car load to donate. Its nice getting rid of some things Ive hung on to for 10 years, praying theyll one day fit but all they do is take up precious closet room. Heck, I had work slacks in there from 2+ years ago that Im never going to wear again! I mean really does a stay at home mom need 10 slacks? No. So out they went!

Its 4am. I cant sleep. Thank you steroids! Yesterday wasnt much fun for me. Between the headaches, tummy aches, blurred vision, and sunburned scalp I wasnt feeling so hot. It literally feels as if each tiny hair on my head is on fire all of the time. This is from the radiation. The infamous feeling that happens before your hair falls out. My hair is indeed starting to fall out in clumps. Im almost welcoming it at this point. If It helps the pain, bring it! In one of my first posts I showed a picture of what that radiation did to my hair. This is worse than that! Since Im having whole brain radiation, ALL of my hair will fall out this time. Not just a spot. It not what I exactly wanted, (no hair) but Ill deal with it. Ha not like I have a choice now.