Sunday, December 30, 2012
Costco Applesauce = New Best Friend
Les Miserables was an absolutely awesome musical movie (it actually didn't cut out any of the Broadway music, which was nice), and Costco was Costco at its finest with free food samples everywhere and enough people to run them dry. I also decided to make a run to Great Clips to get my hair its final cut before my chemo hits full swing. Since I started my Temodar, I've noticed that all my hair growth has stopped. Which is nice, (I haven't had to shave my legs in five days,) but it does imply that hair loss is coming once regular chemo drugs are added on top. Plus radiation to the head guarantees hair loss, and I'm already getting that and beginning to notice a few more hairs leaving my head when I brush it in the morning. So I went short. The shortest I do believe that I have ever had my hair:
The hairstylist who cut it was awesome, she actually made it so it covers more of my scar than my longer haircut did. Since I started this brain journey, I officially have had eight and a half inches of hair cut off. Now I get why men like having short hair. My hair brushing this morning was called "run hands to front of head through hair - done!". The woman who cut my hair is also a cancer person; she has surgery later this week for a thyroid tumor. I made sure to tip her very well, and let her know that there will be some prayers out there for her as well this week.
Now, the not so fun news. I'm back on a anti-seizure prescription. Since I started my radiation, I have been noticing random flashes of light, just like the flash from a camera, at odd times. A couple times even with my eyes closed. I now get why the famous find paparazzi annoying. After talking with the docs, it was decided that the flashes I'm seeing could be one of three things:
1. Seizures
2. Cue that a seizure could be coming
3. Damage to optic nerve that is just now appearing
So, I'm now back on my good ol' Keppra, and the flashes have not been a problem since. My dosage is lower than before, but the pills are impressively large. This is by far the largest pill I have ever seen in my life:
This is a pill that I cannot swallow with water, even cut in half! So my Mom gave me the trick they use with the elderly . . . applesauce. If I cut it in half and take a spoonful of applesauce with it, it goes down easier than my smaller prescription pills with water! Plus it is a good excuse for a late night applesauce snack. So my medical advice for all future large pill users; visit Costco and buy applesauce, A LOT of applesauce.
Friday, December 28, 2012
Being proactive can be annoying
Wednesday, December 26, 2012
Insert Staples Slogan Here
The treatment itself today was actually pretty boring. They led me to the radiation room, and started to explain how everything worked. Those people must really be used to getting some special folk back there, I had to reassure them a couple times that I was okay since I wasn't having a nervous breakdown like I think most of their radiation customers do. Here is a picture of the radiation room that I was in:
Next they strapped me in with the help of the face mask that was made last week. Since the radiation is being done on my face, and I am wearing a face mask, no tattoos were needed! I was thinking that more of my head could possibly get shaved so tattoo markers could be put on, but they just made similar marks on my mask. Booyah! Now maybe my mohawks can get a chance to grow out to a non-mohawk point in their lives.
It only took about six or seven minutes to get me all set up, then they headed out and locked the thickest door I've ever seen to begin the actual radiation. They did radiation at five points on my head, with nine releases of radiation. I guess some points get extra-special treatment. They will be doing the radiation at these points for my full six weeks of treatment. My eyes were closed the whole time since my face mask fits so tight, but this was still a load better than putting up with an MRI. It took them about twenty minutes to do the radiation (I got to rock out to Beetles music while they did this), then they came in to release me. The mask left lovely scale marks on my face that were almost as good as the ones it left when the mask was created. I managed to get a picture of the thick radiation door on my way out:
Sunday, December 23, 2012
I Really Should Visit Vegas Sometime
- survived brain surgery to remove a major (and still debatable) cancerous tumor, with no problems to speak of physically afterwards except for one special eyebrow
- was moved out of the ICU after three days, so I could have Thanksgiving food in the regular part of the hospital
- got out of the hospital a week early
- only had one complication thanks to an allergic reaction from an anti-seizure drug (I have now been off all anti-seizure drugs for a couple days, and am still seizure free!)
- discovered that my insurance is better than I thought, and with all the paperwork we have received from them, things appear as if they could be manageable (still haven't received an actual bill from the hospital, for either the surgery, post-op stay, or my two ER visits, so we're keeping our fingers and toes crossed)
- been given absolutely incredible donations from our church, Marion, friends, and family to help with the upcoming bills
- a phenomenal husband who has discovered his own support system of friends to help him manage everything happening
- incredible friends and family who have been doing everything they can to make this the easiest they can for me, and certainly a memorable experience (in a good way).
- made it to my first church service post-surgery today, and now have the goal of making it to one of the Christmas Eve services after enjoying it so much
- still managed to bake everything I normally do at the holidays (fudge, divinity, ginger snaps etc. - the house smells good!)
I'm more of a knife and a bowl type of decorator, but Rock goes all out |
Friday, December 21, 2012
The Oncology Doctor Duel Continued . . .
The first event is that Dr. Stilles has won the duel at twenty paces with his Flintlock. My first radiation treatment will be at 1:00pm the day after Christmas. YEAH! (I really am happy, I'm actually not being sarcastic; I want to get this over with already!) Luckily, Dr. Wagner had a hidden identical twin brother who was having an affair with Dr. Stilles' mistress, so he heard about the original Dr. Wagner's death.
The identical Dr. Wagner has reluctantly agreed to begin my chemotherapy the week after I start my radiation. We hope he earns his doctorate in that time. Only one of the original wives of Dr. Wagner know the truth about his identical twin, but she will keep her silence as long as his current brain tumor patient doesn't have to play phone tag again with the secretaries of both the doctors.
Next time, on Grey's Oncology (slow, dramatic piano music again) . . .
- the secretary recovers her AMNESIA and remembers she doesn't love Dr. Stilles
- surprise appearance by Dr. O
- the original Dr. Wagner lives?
- what does this ominous message mean for the characters of Grey's Oncology?
Thursday, December 20, 2012
Today in "Grey's Oncology" . . .
So, currently in Grey's Oncology:
- radiation starts on Wednesday (if Dr. Stilles wins the duel at twenty paces with Dr. Wagner).
- chemotherapy starts before radiation (if Dr. Wagner can successfully continue his charade with his three known wives, after surviving the duel with Stilles).
I don't know about you guys, but this is turning out to be one amusing soap opera. Maybe if it is delayed a day I can actually see Les Misables in the movie theater. Then I can say I know more French than "charade".
Tuesday, December 18, 2012
I played with foam today
My husband and I went straight to the grocery store afterwards, and I wonder how many people were curious as to the plastic surgery I had done on my face. The skin on my face is sadly back to looking normal now, so no more foam face fun for a bit. It does look like the next time I'll use my face mold with be a day or two after Christmas; that is when my chemo/radiation is due to start! (As long as I don't have an extreme allergic reaction to some other medication, knock on wood)
Saturday, December 15, 2012
Snow inside is the way to go
Not all of my allergic reaction has left. It is completely gone in my every where in my upper body except in my hands. My legs and feet however are still happily hive filled, but no new hives are forming and they no longer itch. My Allied body has finally taken the initiative and is combating the Axis!
One interesting thing I have discovered about this allergic reactions that that when the hives leave, it is absolutely wonderful for about a day . . . they it gets fun again. Any skin on my body that had hives, and has now lost hives is peeling off. Great. Just great. I thought I got over this when the swelling went down post-surgery. I've started taking two showers a day so I can scrub at my peeling skin, otherwise it is like an indoor snowstorm where ever I walk inside. Kids might think that cool, but I do not. So far my face is the worst, I could probably pass for a burn victim with the amount of indoor snow it is showing. I would post a picture, but I just took another shower and conducted another session of scrubbing.
On a happy note, I went shopping yesterday . . . with a girl! (Thanks Ashley!) We made a trip to the mall where we did a missionary hunt for items that would work as head scarves. I know for sure that between the radiation aimed at my head and the chemo that hair loss is in my future, and I am refusing to wear wigs. If we went deer hunting we would have just come back with one that had the most impressive rack in history! We were able to find seven different scarves, one patterned with a neutral black, another patterned with a neutral white (but with sequins:). It was a complete success! One our drive home we stopped at Panda Express. We then came home, we both curled up on the sofa with our food (I had my prayer shawl as well), and watch Despicable Me. It was a perfect girls day.
To continue to saga, I was finally able to meet with Dr. Stille (my radiologist). I passed his physical, which did surprise me since I was covered in hives for the most part still. However, he was very clear that he will not do any radiation therapy on me at all until my allergic reaction is completely resolved. He also still has to have his artists make a mold of half of my face so that there is always never a doubt where to set my head during treatment. Now that sounds cool. I'm headed back to Dr. Stille's office on Tuesday for that mold to be made. I hope the stuff they use to make the mold isn't cold, it is winter up here after all, so warmth would be nice.
Murphy helped |
Thursday, December 13, 2012
RIP allergy, you will not be missed
If you haven't guess it yet, as a result of this allergic reaction tmy start of chemo/radiation had to be delayed; for some crazy reason they don't want to treat people encased in hives and itching like they are covered in Itchy Scratchy Land. (you'll get it if you watch the Simpsons). I unfortunately had to cancel my two and a half hour meeting yesterday with Dr. Stille as a result of this, he however wants to reschedule it before I even fully get rid of all of allergic aftermath. This will be a true test of what shape I'm in. Maybe I should come dressed as Angelina Jolie. Or not. I am one of the many women in the world who wishes for her body, but will never receive it. Tomorrow at 9:00am will be the big rescheduling , and it sounds like we'll around the middle of next week. A week delay for a week long allergy, seems reasonable.
On another happy note today, I found out that Marion School is doing a benefit dinner to help raise money for my hospital treatment. WOW! Marion is a small school in a small town, and I've only taught there for five years! The people there in the school and the community really are incredible. The bill from the hospital is one of the few things that we have yet to receive, and is the one that we are the most nervous about, so this act of kindness is incredible. Marion is a K-8 rural school, with material that needs some updating and improving. So if you do not live in the area, please donate not to the dinner, but to the school and the students to show thanks, I would really appreciate it.
Marion School
205 Gopher Ln
Marion, MT 59925
406-854-2333
Ending on that happy note, I am now off to decorate the tree (with the cat's assistance of course).
Wednesday, December 12, 2012
If you shoot me, you're guaranteed a bullseye
So now I get to go and see a doctor at "Family Urgent Care" (next to the hospital) every day for about a week. I get to have an IV full of steroids, anti-nausea, and Benadryl. I have now become a human pin cushion.
Two of the spots are rebellious |
happy face |
crazy face |
Monday, December 10, 2012
Keppra here I come!
Since I am having such an extreme reaction, I have an appointment with Dr. O tomorrow morning at 9:00am. I just want to scream at him that it is the Keppra I am allergic to, which is why I'm still reacting. Doctors are wonderfully book smart, but certainly lack in real-life smartness.
Sunday, December 9, 2012
ER doctor, nice. ER specialists, need some help.
My skin has chosen to continue to react to my Keppra prescription, so now my arms, legs, and my head (even under my hair!) are completely covered with itchy hives. For now Dr. Zlogar prescribed the EpiPen, Hydroxyzone HCl, and Ativan for me. The EpiPen was prescribed just in case this allergic reaction starts affecting my throat, the Hydroxyzone HCl is like doped up benadryl (THANK YOU!!) and the Ativan is to help me sleep. Ativan really does work, I slept for ten hours last night with my itchiness spreading.
I am now off to take an oatmeal bath and cover myself in aloe vera. I won't exactly be the most attractive woman today, but I'll be the best at itching in the room.
Saturday, December 8, 2012
...and you were there, and you were there...
Hello again! It's Rock filling in for Shannon. Yes she's back in the hospital again, this time the ER for some nasty side effects of her medications (we think its one of the anti-seizure meds). She has some wonderful hives like the ones she gets from sulfa, so they're giving her the 'good' steroids, benadryl, and pure adrenaline. She still is itchy but she wants to run a few laps.
So tonight will be a fun night, I got to drive fast in the snow. She was not in the vehicle at the time, though her shrill cries of terror would have made due as a siren. Sadly a lack of a working e-brake (despite her illusions that it does something) and her nice snow tires made it far less exciting.
We just have to make it through Sunday before we can meet her favorite middle-european doctor and discuss alternative meds.
So prayers for good meds, good doctors and non-itchy sheets.
P.S. She's updated her status to "Twitchy and Itchy"
Please work Benadryl, I swear that I love you
We contacted Dr. Wagner via phone, and he suspects that one of the two anti-seizure medications that I am taking are to blame (that I of course cannot go off of). It is also suspected that the reason this is not happening until now is because the steroid I have been on to reduce swelling has been in the process of gradually being removed. Two days ago I was "lucky" enough to begin taking just one steroid pill a day. Right after surgery I was taking four a day. It is thought that the steroid pill was helping to suppress my allergic reaction.
Now I am itchy. Very, very ITCHY. The best think I have discovered that helps is not anti-itch cream but aloe vera (like what you put on a sun burn). Right now I love aloe vera more than chocolate.
The doc right now has me continuing to take the anti-seizure medication (it is a bit important), and back to taking four steroid pills a day. I am also taking some good old store brand Benadryl every four hours. If my allergic reaction has not improved by tomorrow, I get to call the doc back and "take the next steps". We'll hopefully not have to see what that means.
Well, I am now off to take a cold shower and apply the next layer of aloe vera. I will work hard on my non-itch skills in the meantime.
Friday, December 7, 2012
And we have a name!
This one is for you rebel James! |
After much waiting we have some information from the specialists of the specialists! There is still no news on if they consider it cancerous like my current doctors do, but we do have a name as to the type of tumor. It is:
anaplastic astrocytoma!
(think Jeopardy music)
Here is some information on what astrocytoma is:"Anaplastic astrocytoma is a primary grade III (malignant) brain tumor. Anaplastic astrocytoma comprises about 4 percent of all primary brain tumors diagnosed in the United States. An anaplastic astrocytoma can start out as a grade III tumor or be a reoccurrence of a lower-grade, previously treated grade II astrocytoma." (mybiopsy.org)
However, my tumor still holds its James Dean status. Normally anaplastic astrocytomas are quick growing, but my tumor has been in existence for an estimated five to ten years. The fact that mine is so slow growing is what brings some doubt to the cancerous diagnosis. Otherwise though, my tumor meets the anaplastic astrocytoma status pretty well. I of course have to get one of the more rare types of brain tumors, and I have also learned that it tends to happen more in men than women. Go me! That's what I get for getting a mystery men's tumor in my brain; now the odd will always happen to me first.
Thursday, December 6, 2012
A personable doctor? They do exist!
Open wide . . . |
Wednesday, December 5, 2012
my tumor could have done better
What I had written on the calender was correct! My memory had not been affect by my surgery! This means that the secretary at Dr. O's either gave me the wrong time and date, or that the secretary at Dr. Wagner's changed the time and date without notifying me. I don't know which scenario happened, but be warned secretaries of doctors, I deal with mostly unorganized teenagers as my job. If you can't find a way to get organized, I will assigned you a locker and a planner and begin grading your organization methods.
Since I am home much earlier than I expected today, I'm going to make today day one of "Thank You Letter Day". No one seems to write thank you cards any more, and that is just impolite in my opinion. I still have thank you cards from our wedding, so finding cards will not be a problem. However, I have found that we only have one stamp . . . and the stamp is from Christmas . . . of last year. Oops. I do believe that a trip to the post office is in my near future. Oh driving, I do love you. (I really do)
Monday, December 3, 2012
The world might be ending; I like teaching teenagers
Saturday, December 1, 2012
Losing hair, but gaining a mohawk
After brunch Rock and I headed off to the highlight of my day . . . a haircut! I've always been wearing a hat when I head out of the house because my scabby scar is so visible right now. I got an awesome hair lady who first thing she did was let me know that she could not cut it all the way because there is a law against cutting hair where ever there is an open wound, and my scabs counted as "open". Apparently blood can be a bad thing in an otherwise "clean" hair facility. But she was kind enough to go as much as she could. I ended up losing a grand total of 5 1/2 inches of hair, which is WONDERFUL! She layered the hair so it bounced out and let me know that I had some great mohawks of hair as well where the hair was just growing back in. No, I will not dye any of my mohawks.
On another note, my face might just suit a mohawk right now. The swelling on the left side is just now beginning to go down, so it is revealing some epic skin. I have three green/yellow bruises, and my skin is peeling off. My skin was stretched so tight that some of the upper layers died, so now that the swelling is decreasing it is starting flake off. Gross. However, it is a good time killer. When I get bored I can just go to the bathroom and do some peeling on my forehead. It makes my husband squirm. :)
Oh! We also have a tentative date as to when I will start radiation/chemo. It is the 13th of December. I will get a huge physical that day which will make the final decision. They don't want to start killing off any new cells in my body until all the injury done during surgery is completely healed. Don't worry, I'm sure I'll have some good commentary on that 2 1/2 hour doctor's appointment when it's over.
I also came to the realization today that I am incredibly lucky. I was originally supposed to be released from the hospital this next Monday, instead I got out almost a week early. I'm pretty sure I would have killed someone if I was still in the hospital at this point. So thanks again everyone for all of your prayers and help, the Big Guy's support has been truly needed the last few weeks.
Now I'm off to watch my husband play Halo. Ugh.