Thursday, May 26, 2010

Very tired today. Could be chemo but most likely its because I'm still not sleeping.

I wanted to let you know that there is a bright side to chemo day! I valet park the car at the front entrance (it's actually a great deal. I pre-bought stickers and charm the Mexican Valets with my Spanish so they only have me use 1 sticker which is $5 plus tip) and right there at lunch time is a HUGE Vienna Hot Dog Stand. So before I go in I get my Chicago Dog, which for those who do not live here is a huge steamed hot dog on a steamed bun and then they put on mustard, onion, picklelilly, tomato, sport peppers and celery salt. Heaven on a bun! So until I get the second chemo and my tastes go bad I'm enjoying it!!!!

Third Radiation treatment tomorrow so its an early start to the day. I have pictures of me on the table in my "mask" and as soon as I figure out how to download it the the site I will.

Wednesday, May 26, 2010

Sorry for not writing sooner but didn't want to bore you with a lot of dribble.

Radiation yesterday went well despite being there at 5:45AM, Did find out that "technically" the doctor does have to sign off on you once a week. Since my Doctor is on vacation this week another Doctor was sent in her place. Surprise, Surprise.....he showed up approx 3 minutes after I entered the room (word must have gotten around).

Today was chemo day. Won't bore you with the hours wasted just waiting. Treatment went well although I'm still only getting one of the chemo's until radiation is complete. (Thanks Emily for the great kitty pictures you emailed me to keep me smiling).

I did stop by to see my Doctor. I've been a little concerned this week and wanted to get her input. When I first was told about the less ions in the spine and liver a light went off - So that's what that is - not a pull! After the first full treatment I experienced a lot of activity in the areas and then nothing ( feeling great). After last weeks treatment I felt nothing (but still feeling great). Yesterday all of a sudden I am feeling the same old aches again in those areas and am concerned that since I'm only get part of the treatments that I'm going backwards instead of froward. She seems to think (I'm nuts - no not really) that if may have something to do with the steroids (they are starting to ween me down due to my insistence and not wanting to end up America's Most Wanted) and taking care of the brain lesion is number one priority. Kind of what I expected but wanted a warm fuzzy. So I put in in the back of my mind and continue to go fore ward.

Funny side note - There's a nurse practitioner who I talked to before the Doctor who does a pre-screen. I have talked to her before and she thinks I should talk to their Psychologist so I don't bottle everything inside. WHAT - is she NUTS. Am I the type to go see a shrink???? Just another day at the hospital.

Next adventure Friday and Radiation.

Thanks for letting me share. Love you all.

Sunday, May 23, 2010

Sorry for the lack of communication but Friday was a crazy frustrating day and I needed to step back and review the details before reporting. (Quite adult and not like me).

Morning started at 5:45AM at the hospital. Dressed in my "high fashion" gown I was lead into the "Radiation Room". Since this was my first treatment and they finished my mask there was still some marking, measuring and films to take before I was ready. Approximately 40 minutes it was all done with approx 10 minutes of that time having a high dosage radiation beam pointing at my brain. Off the table and to Nurse "M" for vitals, etc. Seems Nurse "M" isn't a "Morning Person" and like to treat patients like mental midgets with no common sense. Next to the resident who basically asked if I had any questions - "No, not really". It's now about 7:25AM and still need to see the Doctor who (allegedly) has been paged. Waiting, waiting, waiting.....all the while knowing I needed to be in Lake Zurich for a meeting. Well, let's blame it on the STEROIDS! At 8:05AM (I gave 40 minutes) I calmly collected myself, opened the door and stepped towards to elevator where the Resident see me and says "maybe the doctor didn't get my page " (maybe you forgot to send one!). I calmly looked at her and said "she knows my number, if you wants to talk to me have her call" as I entered the elevator and left.

So a 2 hour drive to get to my meeting I decide to stop for gas before arriving. As I enter the gas station I see a car backing out of a space so I wait until they are out so I can pull in. As the car backs up and sees me the next thing I know an 80+ year old man give me the finger! DAY COMPLETE!!!!

One side note to my crazy day - as I sat in the meeting we were being shown a new technology of data being transmitted on a piece of glass via LED's. etc. Think of the TV show CHUCK and how things flicker through his head. The next thing I know is I'm looking around the room and all I could see is the Microsoft symbol in full color (red, yellow, blue green) with a bright flashing light in the middle floating around the room. Almost like a "floater" in living color. Now it's in the middle of one of the guys face - somethings happening folks. I quickly excuse myself and leave the meeting room calling for assistance where friend Kelly decides what I need is a hug. Well, as soon as I looked at her dark hair it disappears. Craziest thing I ever saw. Hopefully when I talk to the doctor I'll have more to report but my guess is between the treatment and the rapid movement of the data I was being shown my brain went into overload.

Anyway - it was a great restful weekend. Tired, but able to once again relax and ready to start a new week of radiation and chemo treatments.

Thursday, May 20, 2010

Wasn't going to post tonight but have a "cute" story to share..... (of course as friends you know I sometime have a warped sense of humor)

Started the morning with a hand full of hair (no big deal). Problem was I was having dinner with my 80 yr old father and he doesn't know any of this. Due to his health issues I feel it's best to keep it from him now until he builds some strength. So all I can think is glue it in with hair gel and hope it holds. I mean he's 80 but he would figure something out with hair missing from my head.

So we meet at Chili's and have a nice dinner. During the night (as usual) he asks about my health and with a STRAIGHT face I say "I'm doing great - haven't felt this great in 2 years"! WHICH IS TRUE! So he starts telling me about his golfing buddy who wasn't looking good and found out had liver cancer. Without missing a beat he looks at me and says, "you know what the doctors say about liver cancer - once you have it it travel through your body and that's it - your dead"! Of course he was thinking of 20 years ago and my mothers situation. So calming look at him and say - "dad, I think medical technology has come a long way since then and there are many treatments to prolong that from happening". All the time inside my head I didn't know whether to laugh or cry. Sorry friends - must be the steroids.

Well, early morning tomorrow - brain radiation at 6:30AM. If I don't remember any of you after the first ZAP - well................

Tuesday, May 19, 2010

What a day from hell! Best part was waking up even though due to the steroids and having a lot on my mind I didn't sleep that much during the night.

As of this morning still nothing from the Radiation Oncologist. So off to the hospital for chemo. Let me ask a question - if you don't like people and want to be rude and surely - why work at a hospital??? Ok - I'm not talking about the many dedicated doctors ( a lot of them my friends) and nurses, but the support staff who think they run the place!!! Enough said!

Started out with me finding out that I was only to get Hercepton and not Taxol because my Oncologist was told I was having radiations and you can't have both which will cause brain damage (like I need any more problems). When I said I still wasn't scheduled for radiation my doctor ran right over to the chemo suite to see what was up. She felt bad that she was misinformed but it was too late to add the Taxol so I got 1/2 a treatment (although I was assured the Hercepton was what was more important). Her nurse (thanks Cara) called Radiation right away and the doc called to say they thought I was being informed (another result of a large institution), They still did not have the procedure worked out but I would get a call "soon". Well, it finally came a few hours later and I'm starting Radiation on Fridays and Tuesday at 6:30AM for 3 weeks!!!!!

Well then the fun began. Nurse "K" who was putting in my IV (and not very well) started fishing for a vein. I was very calm until she said "if I'm hurting you tell me to stop" - which I did. Well of course she took it personally and picked up and told the other nurse "she doesn't want me to put in her IV" (NO SHIT)! So another nurse came to the rescue and it a matter of seconds had it up and running.

An hour later (although we were there for 4 hours) the chemo was in and we were OUT OF THERE!

Sorry for all the complaining - just needed to get this off my chest. Thanks for listening.

Now to bed and a better and brighter day tomorrow.

Monday, May 17, 2010

What a great restful weekend. Was able to put about 75% of all this just to LIVE! Bad parts was dinner where everything tastes terrible. Even water tastes like chemicals. The ONLY things that taste normal is CHOCOLATE!!! Of course I'm not a big fan of chocolate but when your hungry and crave taste it will work. That huge piece of 7-layer chocolate cake was the highlight of our anniversary dinner (Mark helped eat it).

Nothing to really report today. Still waiting for the Radiation Oncologist to call after Fridays session to give me the course of treatment. Think after the CAT scan on Friday they couldn't find a brain????? Would explain a lot......... So all I have to look forward to is Wednesday and 2nd chemo treatment.

Still putting in normal work days to keep as normal as possible. Tired when I get home but Mark is being a really big help.

Love to all of you!

Friday, May 14, 2010

What a day! Was out of the house about 5AM to get my day started before I had to be down at the U of C at 1:00PM. Back down to Radiation Oncology where they built a new fixture/mask around my head and shoulders to immobilize my head while they beam radiation into my skull. This one was a lot different from the one they made on Wednesday. This cradles my head in the back and has plastic mesh molded to my face where I can't move a bit. Good thing I'm not claustrophobic because while they are making this and placing wet warm mesh over your face you feel like your being smothered (except for the fact that you are able to breath through your nose). My Radiation Oncologist came in and told me that the "team" including several Physicists studied my last CAT scan and feel this is the best course of treatment for me. Question....with all these Physicists looking at my brain - will that make me smarter???? Downside to today's activities was ANOTHER CAT Scan and two more sticks (OUCH!!!) For someone who hates taking aspirin I look like a junkie.

I'm so fascinated with the hows and whys of what they are doing that I forget I'm the patient (although part of the team). I hope I'm not driving them crazy with all my questions.

I won't have anymore info on when I'll start and how many treatments until Monday. I heard a few rumors today but am waiting until I hear something definitive since things change so quickly.

Well tomorrow is Mark's and my 28th Wedding Anniversary so I'm putting all this in the back of the closet until Monday and try to have a relaxing stressful weekend.

Thanks again for all your well wishes and thoughtful notes. They all mean a lot to me and I do read them especially waiting at the hospital.

Have a great weekend!!!!!

Thursday, May 13, 2010

It was a day of ups and downs. A call from the Radiation Oncologist this morning advised me that they were going to revisit my treatment after viewing the CAT scan taken yesterday. After further review it looks like the tumor is actually on the skull pushing on the brain instead of in the brain pushing into the skull. A small step in the right direction. So instead of radiating the whole brain with low dosage they plan on high dosage aimed right at the tumor to shrink and kill it so it won't spread. So back to the hospital tomorrow for a new simulation and new mask. Of course this was decided in about 5 phone conflicting phone calls that kep't me on edge most of the day.

No side effects from the chemo today. Didn't sleep too well last night but I think was mostly the steroids they have me on which casues insomnia. But I was busy and put in a full day which made me mentally strong. I am noticing my taste going already. Everything is tasting bland.

Special thanks to Kelly and her mom for making these great BC bracelets filled with super powers for myself and my supper support team Kelly, Kathy and Emily. They are beautiful and remind me of how lucky I am to have such fantastic friends. Thanks Emily for the beautiful plant!

Hopefully tomorrow will be a less stressful day. Thanks again to all my friends and family for your love and support. Your the best and I love you all.

Wednesday, May 12, 2010

What another crazy day! Started in Radiation Oncology at 10AM for another two hours while they scanned my brain and built a mask to keep my head in place so they ONLY radiate the effected area and not fry the rest of my brain. I'm going to try to get a picture of it - I'm thinking Jason and the hockey mask.

Next stop Infusion Therapy (another fancy word for Chemotherapy). Over 5 hours of sitting in a recliner while they pumped toxic chemicals through my veins! So far so good. Both chemo drugs can have alergic reactions so they watch closely to make sure things go well - which it did. First drug they give you is Benydril and something else for alergic reactions. Kind of makes you sleepy for the first hour. They have TV's in the chemo suites so we wathced/listened to the Cubs game which they won! I was finaly finished around 5:30 PM and it was useless to try to make our way home due to the traffic so we stopped at Carmichael's in the West Loop for dinner. I figure if I'm going to vommit anything up it might as well be something worthwhile!

I'd like to thank all my friends who sent me emails filled with kind words and promises of thoughts and prayers. I recieved wishes from all over the world and read most of them during chemo. It kep't me uplifted and strong. Special thanks to Kathy and her boys who made me cards which I kept next to me and focused on the great drawings during the day.

Mark has been great these past few weeks driving me back and forth and sitting for hours waiting for me. He's been a trooper and I worry about how this is affecting him. I want to get our lives back to normal as quickly as possible so we can move forward. I hope he knows how much I love him and appreciate his hugs, thouches and tears.

The hardest part of this whole ordeal has been telling my family and friends. I am so blessed with all of you and know through your strength I will make it through this.

Tomorrow I start my first of 15 radiation treatments. Since I've gone through this before I'm pretty much know what to expect.

Oh - I'm also going bald in the next weeks or so just in time for summer. I hear it's very "in" this season!!!!

On to bed to get ready for another day. Thanks you friends for being there for me. I love you all!!!

Tuesday, May 11, 2010

What an exhausting day at the hospital. Met with two Radiation Oncologists to review Brain MRI and treatment. After two crueling hours of questions and examination it was decided that I would have 3 weeks of radiation to shrink/stop growth of lesion as well as to prevent others from growing. They were very happy with my present condition since I feel great and have no pain that I should not have any problems. They did give me the usual info on side effects including short time memory loss. I have news for them - that went a long time ago! Now where was I??? Because they took so much time with me they didn't have time to do the "simualtion" which for you rookies is how they make you and decide how to position you so the radiation beam only hits its target. So I have to go back tomorrow so they can get the info needed and they can measure me for a "mask" which is put on to hold my head in place preventing any moving (sounds like an old horror film).

From there it was up to Chemo only to be found they needed more blood. So off to the lab where they searched for another place to stick a needle..... Back to chemo to meet with Joan who is the coordinator/advocate to make sure the patients are comforable, informed, etc. That's when we were infomred by the Head Chemo Nurse that it was too late to start and yes, I would have to come back tomorrow.....

So back home to rest and get ready for yet another day of fun tomorrow.

Monday, May 10, 2010

So here I go.... You may wonder why I'm starting this blog. It's really for two reasons. First to keep my family and friends informed of what's going on. There's just too many of you to keep updated - sorry. Second is therapy. I'm hoping that by writing about my days, treatments, thoughts, etc it will help me get a handle on this and keep me positive and full of fight.



This all started in March when I ended up n the ER with beathing problems and was diagnosed with pleurisy. In the CAT scan they found a few nodules and enlarged lympth nodes. Hoping it was due to the infection they waited a few weeks and repeated the CAT scan. No such luck! They found lesions (new word for tumors) in my lung area, liver and bones. So two weeks of tests (liver biopsy, PET, ECHO, MRI) showed I also have a bone lesion pressing on my brain. I had hoped to qualify for a Clinical Study showing good results but due to the new development they want to start radiation on my head right away. Tomorrow I will start chemo (hercepton and taxol) along with radiation.



So wish me luck and keep me in your thoughts and prayers as I begin this journey.