Found out that no tumors does not mean no cancer cells

The good news is that I got my new hearing aids last Thursday.  I'm still not used to them, but hope they will help me hear - especially in crowds.  I have a microphone aid for my "dead" ear which transmits sounds to a receiver in my good ear.  The receiver sticks down in my ear canal, so seems to block out some of the sound - still figuring this out.

Following my ear appointment, I saw my oncologist and she told me that my CA-125 has shot up to 158.  This means the cancer cells are growing fairly rapidly, and most likely in my spinal fluid.  Ovarian cancer to the brain and spinal fluid is a rare occurrence, so no definitive treatments are currently available. We have opted for no more tests or treatments.  My balance is getting worse and my concentration periods shorter.  I'm feeling much as I did about a year ago when the docs rushed me into full brain and spine radiation.  I am thankful to the docs for that because it gave me several good months to spend with friends and family.  (I was even able to play a little golf!)
I wish to thank all of you who were such a big help to me and my family last spring and summer while I was going  through treatments.

I believe that I officially terminate from LANL on January 10.  That is the date they are currently giving me - could change and has several times over the past few months.

Good news - no tumors

Had MRIs of my spine and brain - no tumors detected!  Now have an appointment with a neurologist to try and figure out and help with the tailbone and leg pain and the neuropathy in my feet.  (I may be asking too much of this guy.  I hope not.)
I am taking some pain meds. which help with the pain - just hate to take this every 4 hours, but does seem to help.
Thanks to all of you for your thoughts and prayers.  I really think this has helped keep me here this long.

Family went to see the Blue Man Group at Popejoy Hall.  Great Show!

Update after seeing Dr.

I've been having pain and numbness in my tail bone, pain down my left leg, and some on the right.  Neuropathy increasing in my left foot, and starting in my right.  Dr. thinks either tumor or scar tissue in my tail bone is pinching a nerve. I'm taking hydrocodone for the pain - works part of the time.  My CA-125 cancer marker has risen from 7 to 24 - not very good.  So, I'm getting an MRI or my brain and upper spine this week, and of the rest of my spine next week.  They didn't want to keep me in the MRI machine for 4 hours, so split the scans.  (Nice of the techs to think of me.)  I will be taking permanent disability from LANL soon to give my try at being a full-time"House Wife" and "Taxi" driver for Jamie.  (Although I'm not much for cooking.  If family wants good meals, will cook themselves.)

I'll update again once I get the MRI results

Beating the odds

The doc at MD Anderson Cancer Center gave me 4 - 6 mths.  I'm now in my 7th!  Yippee! (Goal is to see Jodi graduate, but I'm hoping for Jamie also.)  It is nice to be around.

Got my MRI and CT scan results.  Both show no signs of "metastatic disease" (cancer tumors); although MRI does show some brain cell damage.  (I was the youngest of 3!)

Now I'm in holding pattern - no treatments, just try to stay healthy and get stronger.  My Doc says she will be watching me closely for any caner growth.

For those of you not familiar with cancer treatment left over side effects, here are some I have - not too bad.

Fatigue
Neuropathy (nerve damage)  in my left foot and right hand
Short term memory loss (I am 52 years old!)
Trouble concentrating (probably from brain radiation)

Back pain (probably from spinal radiation)
Trouble sleeping (they have pills for this)
Hearing loss in Rt ear (possibly from radiation)

A lot of you probably have a similar list and haven't even been through cancer treatments, so I can't complain.
All in all, things are good.

Update

Had my CT scan and MRI yesterday.  Probably will get the results on the 26th when I see my Dr.  My platelets and red/white blood counts are down, and they wanted to do another blood transfusion.  I opted out at this time and hope to build them up on my own.  Will get blood checked later this week to see if cells are building.

The exciting thing today was Jodi getting her elbow drained.  She had here bursa sack burst and her elbow was swollen a couple inches with blood/fluid - 3 syringes full!  She is so happy to have it drained, and we no longer have to look at the "ugly" elbow.

Starting my 52nd year

What a nice way to start another year of life.  I have gotten so many well wishes for my birthday - who knew I had so many friends!  Thanks so much to all of you.  I finished my round of chemo yesterday and got a couple pints of blood - all is looking well.  I should start to get stronger as the chemo effects wear off in a few weeks. I'll get a CT scan and MRI to ensure nothing is growing and then I'm in "monitor" mode.  Let's hope I stay in the mode for a long time.

Nothing Found

Had an MRI of my brain and spine last week - Doc today told me they found nothing.  This explains why I'm a spineless blithering idiot!  When I'm slow to find my words, just remember that I'm pulling them out of my elbow.


Good news though, no signs of cancer in either brain or spine.  I'm getting chemo this week, then off to Alaska, then chemo again - hopefully last one.  Doc will then have a full scan done to check for cancer hiding away.  I don't think there is any though.

My CA-125 (cancer marker) is still 7.  yipee!

Keep up all the good thoughts and prayers.  Something is working.
thanks.

More Blood + 6 pack

My 4th round of chemo was rather uneventful until today. Got a call this morning from the nurse telling me my blood counts are way low and I need a couple bags of blood and a 6-pack of platelets. (Anyone know what a platelet 6-pack is?! Anything like a Sam Adams 6-pack or more like a Frontier Roll 6-pack?) Low blood counts explain why my nose was bloody and why I am soooo out of energy.
I had to go to S.F. to get blood draw in preparation for a Tuesday transfusion. They didn't want to chance LAMC in case of evacuation. Good thing, because the evacuation call came while I was in S.F. Can you believe they have to re-type my blood before every transfusion?! I asked the nurse if anyones blood type ever changes and she said "no", but they still are required to re-type. Must be a legal thing.
Luckily we had packed yesterday in preparation for evacuation - however, I had the car with everyone's clothes in it. The family is going to my brother's place in Pagosa Springs and I get to stay at LA Quinta in S.F. so I can get blood and 6-pack Tue., and then MRI on Thur., We rendezvoused at Cities of Gold in Pojoaque to pass off clothes. I was tempted to try my luck at Black Jack. But it has been so long since I've been in a Casino (probably 10+ years) that I was a bit intimidated.
Anyway. I get new, cell-rich blood tomorrow, along with a 6-pack. Should boost my energy quite a bit.

3rd round of chemo

I finished my 3rd round - 1/2 way now. The plan is to complete chemo the end of July.
All is well.
I'm working on keeping food down, trying to stop losing weight, and building back muscles.

Thanks for giving...

A big THANKS to all of you blood donors! (I used to give, but they no longer want it except in smaller quantities.) I encourage any of you who can, please give. It saves lives.

Got a blood transfusion today. Came with a few surprises. 1st. I figured in and out in about an hour. NOT. They have to give it slowly in case of rejection. 6 hours! 2nd. Because of the possibility of rejection/reaction, they gave me benadryl. Well, benadryl directly into veins gives quite a rush, then puts me out. Guess this was good after all, made the 6 hours go by quickly.
3rd. I was kinda freaked about having blood put in me. (I've only had it taken out before.) This surprises me because I've been letting them put all kinds of toxic weird stuff in me - no problem; but a little organic blood and my brain goes freaky.
Oh well, I made it through with no drama.
I'm actually feeling little stronger this evening. The person who so kindly gave me his blood must be in good shape!
thanks blood "letter"

update

I finished the first chemo round 3 weeks ago. Got to feeling pretty bad by the 3rd chemo day and continued for a couple weeks.
Now into my 2nd chemo round. First two days doing pretty well. The pre-meds (steroids, anti-nausea) are nice. I'm going for my 3rd treatment of this round today.

Had good news on Tuesday - my CA-125 (cancer marker) is down to 10. This is where it was a year ago. Will be great if I can keep it down at that level.

Kids are doing well. Really busy with end of school year activities. Jamie has a dance show this Friday and Saturday. He is in 3 dances. Jodi gets to take the SAT test on Saturday - oh boy!

Thanks to all of you for your thoughts and support.

1st Day of Chemo

My 1st Day of Chemo, got Cisplatin and Topotecan - Along with premeds of a steroid, anti-nausea, and anti-anxiety/sleep stuff. I get 2 more days of Topotecan and premeds this week.

I'm also trying to get better about taking my nausea pills regularly.

Good News. May CA125 cancer marker is down to 20 (below 21 is considered good.) Hopefully means the radiation has done some cancer killing!

My Radiologist told me yesterday that the whole brain and whole spine radiation he performed on me is not something they typically give to adults because it is so harsh on their bodies. This explains why I got soooo wiped out and am taking so much time to recover.
I am slowly getting stronger and able to eat more food which is nice. Doc said may take several more weeks for radiation effects to go away.
In the mean time, I'll start getting to feel the effects of the chemo. My gut feel is that the chemo will be easier - time will tell.

Thanks so much to all of you who have and will be given me rides to ABQ. and to the yummy foods.
Cheri

Cancer 101 – according to Cheri

It is hard to imagine what it is like to live with cancer. I thought I would share some of my experiences.

When you ask a cancer survivor, “How are you”, the person typically says “fine”, “ok”, etc.

The person will also look fairly good from the outside. Well, cancer mostly hits the inside of the body, so you don’t see how the person really feels. During treatments, many folks have constant nausea and at times it is all one can do to keep from puking. Energy level is very low as well. For me, sometimes I have to rest after getting dressed or taking a shower.

Folks who are in “remission” and not getting treatments have the subconscious worry of the cancer returning. Many times (such as my recent case), the cancer can come back with a vengeance and can multiply so fast that the “victim” can feel it growing.

There are many different kinds of cancer, each with different cell structures; therefore, different methods of treatment. Ovarian cancer alone has 3 main types and as many as 30 sub types. Also, everyone’s body reacts differently to treatments. It is nice to get ideas of treatments from friends; however, realize that just because something worked on your cousin’s cancer, doesn’t mean it will work on everyone’s.

Yes, there are articles about folks who have “beat” cancer by doing daily coffee enemas and downing lots of carrot juice and pills. Some folks can do this, but it is not for me. I will do yoga, acupuncture, healthy foods, hypnotic healing, exercise, … though.

Treatments also affect everyone differently. For example, my radiation was full on to my brain and my spine. Effects from this would be different from someone who has directed radiation to a tumor in their breast.

For me, this treatment went through various side effects. Brain function was impaired (balance and thought), I couldn’t swallow for a while, I lost hearing in my right ear, I couldn’t keep food down for periods of time, lost 15 lbs., headaches, right fingers are numb, nauseous most the time, so tired at times that I struggled to dress myself.

Luckily my radiation treatments are finished and my body is slowly getting stronger.

Chemotherapy is also different for each person. There are many different types of drugs with just as many different side effects. The Chemotherapy I had made me nauseous, sometimes vomit uncontrollably and feel like I had the flu. Since I got it every 3 weeks, I would have about 1 ½ weeks of feeling sick, then 1 ½ weeks of getting stronger before being hit again.

I hope this helps give a little insight into life with cancer.

MD Anderson visit

I'm now in Houston - came to get an opinion from the MD Anderson Cancer Center doc.
I spent more time (2 - 3 times) getting registered into MD than with the doc or any treatment.

The doc and her nurse were very nice. She has seen ovarian go to the brain. Said she is seeing more of such cases - yet is still rare, about 1%. She has also seen a couple of cases where it goes to the spinal fluid - much more rare than the brain.

I had been thinking I would spend hours at MD getting tests, etc. No need to worry. Doc did an exam, sat down with me to go over issue with this cancer, and said no need to run tests and no special "MD" treatment suggestion. She said what my Doc in NM is planning (chemo of cispatin and topotecan) would be her recommendation. She also concurred with their decision to do the Whole Brain Radiation. (Basically - our NM folks are on top of things!)

So...
I'm spending a few days with my family in Houston, then flying to Alabama to meet up with Jodi, Theresa, and Jamie.

I will be starting chemo on April 12. Need chemo the 12, 13, 14, then off 3 weeks before 3 more days. I will be soliciting rides to Alq. If any of you could help, would be great. I'll post on my calendar.
http://carecalendar.org/index.php
The ID and security code are: 64657, and 1402

Thanks so much for all the support.

Finished Radiation!

My last treatment was Monday. I now have a "mohawk", my hair fell out on sides, but not top.

I'm amazed at how little strength I have. All I can do to stand up at times.
I am forcing myself to do Qi Gong, curl a few pound weights, and spin a few minutes on the stationary bike each day. Hopefully this will build my strength.

I have trouble keeping food down, so lost a bit of weight. This should fix soon - I hope.

The good news is I can still dress myself - take a little nap after I do.

All is well here. Kids are staying busy with school, sports, etc.

I finished reading the 10 books of "39 clues". (Those with young boys may be familiar with this series.)

Last stretch!

I'm down to 4 more radiation treatments. Still kicking!
I'm quite weak, but still lifting a little dumbbell and trying to ride the indoor bike (about 2 minutes). My brain is slow but here.

Yesterday I tried shooting basketball and found my coordination is a bit off. Now I have a new daily exercise - shooting hoops.

I had a Hypnotic Healing session last night - was great. I was out for awhile - like a trance. I focuses on getting rid of the cancer cells. Think all is good.

Found out yesterday that these sores in my mouth are thrush and can be treated. (Wish I had mentioned them to the Doc a few weeks ago!)

1/2 way through!

Just caught the 1/2 way mark on radiation. Finally feeling a bit better. I can eat! yea!
I don't see double, and my muscle spasm has gone. Think this lobotomy may be working.

Everyone has been so nice to bring food, give me rides to Abq., and provide encouraging words.
Just a few more months and I'll be back to trouble making.

1st week of Lobotomizing

I got through the first week (out of 4) of everyday whole brain and spine radiation. Not too bad.
I lay face down on a table - body in a mold and head in a helmet screwed down to the table. I'm strapped down for about 30 minutes why they first shoot my brain from each side, then they shoot the spine. The radiation only lasts about 15 - 30 seconds each, there is lots of calibrating between shots. The radiation does seem to make me nauseous - but not too bad. The steroids make me jittery.

This lack of brain thing is a whole new experience. (Ok, no jokes!) Doc keeps saying that after a couple weeks of the radiation, my brain should start to return. We'll see.

I'm now totally deaf in my right ear, and have trouble swallowing. The Doc thinks the swallowing is a cancer spot on the swallow zone in my brain. (Broth and creamy soups go down well.)

Thanks so much.
Cheri

I'm being forced to lay low - not enough energy to do a lot. I do try not to stay in bed too long.
I have trouble working at computer. None of the letters come out right - yes, worse than normal!

I really appreciate all the support and help from so many of you. Please forgive if you don't get a thank you note right away.
Your being here for us and willingness to step in to help is so wonderful.

When you see me, pleae don't feel offended if I don't acknowledge or comprehend. (Can't hear on right; and my brain is like Jack Nicholson's after they treatd his in One Flew Over the Cukoo's Nest.)

Staying Healthy

Hi Folks.

Thanks to everyone for all the support. It is so nice to have such a kind, caring community.

FYI. Here is how I'm working to keep my body strong. (Actually been doing this for awhile, so not sure if it is working or not.)

- Drinking veggie slushes (grind broccoli, spinach, carrots, garlic, tumeric and whatever I find around the house) in a blender, then refrigerate and drink cold with a little V-8 juice.
This is actually very refreshing and has got to be healthy - give it a try!

- Qi Gong (relaxing/stretching yoga) daily - I recommend for everyone. I have a DVD called "7 Minutes of Magic"

- trying to walk a little daily

- pumping a little iron

- eating fairly healthy

- Doing "brain games" - sudoku, etc. (I'm much better at the math than the word stuff - but I'm trying - most the time I have to "cheat" at crosswords!)

- massage and acupuncture

- Today I went to someone for energy-healing. Was very relaxing

Now, if this doesn't beat the odds, not sure what will. I take anyone's bets.

Care Calendar

A friend suggested I set up a Care Calendar to solicit folks to sign up to help with various things. Currently the most help would be rides for me down to Albuquerque for radiation treatments.
(Dear friends the Bouquin's and Karen Warthen have been providing great food.)

If you can help, please check out the calendar at:
http://carecalendar.org/index.php
The ID and security code are: 64657, and 1402

Right now I just have set up a few rides. Might need to add more later.

thanks.
Cheri

Lots of Docs

Spent yesterday in Abq. getting to know the Radiation Doc and getting "fitted" for radiation. Also got another MRI, this of my total spine.

Received calls today from the Radiation Doc and my Oncologist. The MRI shows small cancer spots, one each in the Cervical, Thoracic, and Lumbar regions of my spine, and they found several more small spots in my brain.

So, the plan now is 14 days of radiation to my brain and spine. Docs say this will wear me down quite a bit as it will kill good cells with the cancer cells. It will take my hair, mess up my digestion, and cause skin issues - oh boy, what fun!

I plan to try and keep my body moving and am currently trying to get my brain functioning. The Doc gave me some steroids that are supposed to reduce the swelling in my brain and I hope get some cells to fire. Currenlty can hardly hear through the right ear, so if talking to me, please be patient.

thanks for caring.
Cheri

My brain my brain

Who is it in the Wizard of Oz who needs the brain!? I'm thinking it is the scarecrow.
Well, they found a couple small (very small) "spots" in my brain and ovarian cancer cells in my spinal fluid, so the docs say I have cancer cells swimming around in my head. (Can't they find another pool!?)

Anyway, this is rather rare to have ovarian cancer metastasize to the brain. My doc consulted with a specialist at Johns Hopkins and decided whole brain radiation therapy and radiation to my spine would be the best first treatment. I see the Radiation doc tomorrow am. Sounds like I'll need to go to Abq every weekday for 3 weeks to get radiation.

I also have an appointment for later in February to see a doc at MD Anderson in Houston.

So far I'm doing ok, but not functioning at full throttle. Fuzzy head, balance issues, can't hear in right ear, pain in shoulder, arms, arms go tingly and numbing.
That's about it for now.

A bit of a Bummer!

Say my oncologist today. My CA-125 climbed to 124 (normal is considered under 30). Good news was that the CT scan showed only a small (1cm) growth on my aortic lymph node - doc says is better to have lots of small cells floating around than big groups.

I'll be starting chemo treatment next week - doing a trial - GOG 213. Will be the same drugs used the last trial I was on, so,... I'll be getting a new hair do! (Just got a new color last night! - tell me what you think next time you see me.)

My first 6 - 8 treatments (once every 3 weeks on Thursdays), I'll be looking for rides to Abq. Typically will need to be there around 8 or 9 am, and stay about 6 hours. So, if you have some shopping to do and don't mind dropping and picking me at Presbyterian, please let me know.

thanks.
Cheri