Snow storm

Do NOT tell my neurologist but I totally went snowmobiling yesterday. We couldn't help it! There is almost a foot of snow out there. It was so much fun. We cleared the drive and then Todd got out the Yamaha and away we went. We were probably gone for 1.5 hours or so. FUN!

Premenopasual positive

Well, test confirm. Premenopausal. Thing is we all are. From the time we start menstruating until we go menopausal. So the hormone test meant nothing. There are some elevated levels but those can very during cycles. Since I have no idea when my cycles are the numbers don't really mean a thing. The nurse is sending me the lab results so I can look things up myself. Easier than writing it all down while hearing it over the phone.

Thanksgiving reminds us what we are thankful for.

I hope you find many more days to reflect back on what you are thankful for. Please don't wait once a year! I don't need a reminder for what I am thankful for. I am thankful every day that I am on the earth. I don’t need to be reminded that I am a cancer survivor that has had 4 surgeries to remove growth of tumors in my brain. I have lived as a cancer survivor for nearly eight years now. I am able live a somewhat normal life. I have lived through four surgeries, almost 4 years total of chemotherapy, six weeks of radiation, countless MRIs, doctor visits, tears, and eight years of fear and worries. I try not to focus on the “what’s next” and live in the now but it is always on my mind.

I am thankful for my friends and family that support me in my journey. I am thankful that I am still treated like an individual and not have my name be hyphenated with "Brain Tumor" at every turn.

As the holidays come near it is stressful for all of us. Take a step back and think about what you can do to be thankful for. You can make your health better, relationships stronger, grow your inner spirit, broaden your mind without the use of the TV, and most important LIVE. Life has so much to offer. Watching it pass is boring. Make something out of it.

Another success

I had another MRI on Thursday evening. I didn't' t get a chance to talk with Dr. M about it but I was seeing Dr. A Friday so it was cool. Dr. R called Friday morning and said all was stable!!! YES!! We will continue with another MRI in 6 weeks.

Friday was a good day. I started out waking up at 8 am, going to yoga, coming home and having a small breakfast then Todd and I got ready and went to lunch at Chili's. If I could start every day like that! Then we had to go downtown to the clinic to see the doc and get my treatment. My blood pressure is good, hemoglobin is a little low and I have some protein in my urine (the Avastin can cause this). We chatted with Dr. A for some time. I told him about the night sweats, the nose, the tiredness, on going bleeding, bloody nose. I asked him to do a hormone test on me to see if I am menopausal. I'll call on Monday to get the results. YIKES!

We came home last night and I was sleepy so we just laid on the couch and veged.

Todd is taking me on a date tonight. Dinner and a movie. Whoo hooooo!!!

Stuffy nose issue

I have had "allergies" since February. I have been to the doctor several times for it and have been given nose sprays that don't really help. I have so much mucous that I go through a box or so of tissue a week. Bloody noses all the time and other gross issues. I finally went to the Allergist last week and got the allergy scratch test. I'm not allergic to anything. He suggested more nose spray. I fought back saying that they don't help and lead to bloody nose. He convinced me to try a sample for two weeks. I gave in.

The negative allergy test had me very plagued at what could be causing the mucus issue so I started looking up things on the (sweet sweet) Internet. I found several people with the same issue that are taking the same drugs I am for my tumor. Huh.. WTF? The doctors didn't put this together? I am going to have to talk to My oncologist about it Friday and see what he has to say.

More to worry about

The pills, shot and now more pills are not helping the bleeding thing.

I’m tired
I’m tired of stuffy nose
I’m tired of going through a box of Kleenex a week
I’m tired of getting nose bleeds everyday
I’m tired of waking up at 12am every night
I’m tired of waking up sweating and freezing all at once
I’m tired of hitting the snooze alarm for at least ½ hour every morning because I can’t wake up
I’m tired of getting to work late
I’m tired of work
I’m tired of headrests
I’m tired of bleeding from my uterus
I’m tired of the same routine at kickboxing
I’m tired of seeing my husband only on weekends
I’m tired of being so far away from everyone
I’m tired of being a cancer patient
I’m tired of treatment every other week
I’m tired of MRIs
I’m tired of my house being messy
I’m tired of my hair falling out
I’m tired of caring how I look because I feel ugly any way
I’m tired of having a vagina in a world full of dicks
I’m tired of being on the verge of a meltdown
I’m tired of acting like nothing is wrong
I’m tired of trying to please everyone
I’m tired of wanting to stay home
I’m tired of the constant worry of a possible surgery #5
I’m tired of having “episodes”
I'm tired of writing
I'm tired

More episodes

I had another episode this evening. I also started to bleed again. In a down mood lately. I'm not sure if it is because of the weather or what. I've been wanting to stay at home and just keep to myself. It's hard to get going at times. For anything. I'm having an off week(s) I guess. I hope this is not a side effect of the depo shot I loved last week so much.

"The change"

Night sweats - check
Hair falling out - check
Crabby - check
Abnormal periods - check

Going to ask Dr. A about Pre mature menopause. Another thing to think about...

I hope there is a blood test that can provied hormone levels that can indicate the onset of menopause.


OMG I found a website for the NAMS - North American Menopause Society!!

Depo

*man warning*girl talk*

Recently my periods had become longer and longer. It's a side effect from the Avastin so I wasn't too worried about things until it was about 3 weeks later and it hadn’t stopped. Heavy one day and nothing for 3 days. On and off, on and off. I could go into more detail but out of the kindness of my heart I will spare you. I spoke with Dr. A about things and he gave me a bunch of options to look into but he wanted me to get ultrasoundS - one external and the other Internal!! He wanted me to get checked out for other issues that could be giving me the problem. Good Lord, something more for me to worry about. Had the tests done and went to see the gyno. Everything is normal surrounding my girlish parts (phew) so we decided on the "shot". Holy hell I am loving this!! No more bleeding and I get to have UNPROTECTED SEX with my husband!! AND not worry about pregnancy! Happy days are to be had!!

Relax

I need to know how to do this. I always run around and can never sit still.

New Favorite T

Vacation fun!

Vacation was so much fun. A time to forget for at least a few days that I am a cancer survivor. Yes, Survivor. T and I had a really great time shopping and going to the beach. We had the time to relax an actually enjoy one another. I love him. We had time to reconnect and reflect. It gave me the strength to come back home and face the doctors visit I had on Friday.

Results

T and I went to see Dr. A yesterday for my monthly visit. Things look really good. The Tumor Board recommended that I stay on Avastin and discontinue the chemo! WOW!! Fantastic!! We talked a lot (Dr. A is awesome! I encourage connecting to your doctors) about the decision. The reality is that treating brain tumors is still such a new thing that it is not known what to do. For instance, I was on chemo that is originally treated for colon cancer. Like other cancers treatment is an educated guess and the medicines that are being developed all the time are excellent. However, the duration of time is unknown. The length of treatment is often derived from the clinical trials. Dr. A informed me that patients have shown very positive results with the Avatin treatment alone. Now the question is "How long"? Not something I really want to know yet. As always the end date is something to look forward to and if it comes and the recommendation is to continue with treatment - that is hard to hear.

So yesterday I had my first treatment of Avastin only. I am feeling wonderful today. I even went to Kickboxing! Now I am headed outdoors to enjoy an awesome Fall day.

MRI # 8000 (not really)

I had a MRI the 16 and the preliminary results look good. The next step is for the doctors to meet at the tumor board. It’s a big meeting where all the specialists present all of the neuro cases. My scan was review by the radiologist and all of the experts and the outcome is that they recommend I continue treatment with the Avastin only. No more CPT11 chemo. That sounds terrific in theory but for me it is really frightening. Going off the treatment that has prevented more growth is numbing. I am relieved to hear the board still recommends the Avastin. It’s been a year with the combination of drugs ever other weekend. Every other weekend lying around feeling terrible, depressed and nauseous. Not to mention I have to schedule EVERYTHING in my life. I have missed so much this year.

T and I will talk to my oncologist Friday to get more information.

Vacation at the beach

YES! T and I are on vcation finally!! We took off to Myrtle Beach and it has been so nice here. Going to the beach, eating, pool, eating, shopping, eating...

I'm so happy that we are able to have this time together. Time with T is so precious.

Bye bye hair

Stuff seems to be falling out again. I asked Dr. A what he thought. He looked at my chart with a puzzeled look. the chemo dosage has not changed and my counts look good for my liver and kidneys. So WTF? I have not had the courage to shave my head again. I think it will be coming soon thoough.

Tomorrow Todd and I set out for 10 days of sun in Myrtle Beach. YES! I need a distraction from all this shit here. Work and my cancer life. I will be nice to get away. Next Friday K and her hubby R are coming to join us. I can't wait!

Dead hand, pulsating tongue

No, not a dirty new dance craze. It's my latest neurological mishap. Yeah! Like I needed another one. My tongue starts pulsating and then the left side of my lip starts quivering and then my hand starts to go dead. I have been getting these symptoms all day today. More than usual. Often, I go days without any. I need to keep track. Add this to my list of "things a neuro patient should do".

welcome

Oligodendroglioma - that's the name of it - my brain tumor. This the main reason for my blog. Hopefully for some self help therapy. We'll see if it works! Stay tuned.