the heat in my bones

All through the long cold snowy winter, all I could think about was dreams of the summer, to sit outside in the heat.  Sun is not allowed due to the various chemicals in my body, and swimming is barred due to the abdominal drain, but here I am as very anemic, and always cold, something I've never experienced before, and just never able to get warm.  So I am truly enjoying the heat of the summer, trying to store the memories of warmth to get me through another winter, if possible.  As bit by bit I edge into uncharted or lightly charted territory.

Saving money with cancer?

Cancer costs, costing time, energy, loss of income, medical bills etc.  But it can also save money.  I think of all the things I've given up.  I almost never drink starbucks.  I hardly eat.  I have done my own nails and feet for more than two years, since doxil and avastin and fear of infections.  I have done my own hair color for years before cancer, now I haven't had a haircut in almost 8 months since it fell out and is growing back. Before then I was rarely cutting it since it was growing out, filling in, due to all the chemo and thinning.  I don't drive so am not spending money on gas.  I don't shop.  Buying is left to the internet.  Don't go out to dinner.  On and On, so much don't, can't, won't.  Stuck in my cancer box trying to break out but know I can't as there is no cure, just prolonging my time.

Abdominal drain - not as good as ...

As we say in our family - not as good as - when comparing food, hotels, travel experiences.  I'm enjoying this, but it's not as good as . . .

Well, that can also go for medical treatment.  Have always been happy with my port.  It has saved me so much pain and aggravation, no one hunting for veins, just a direct hit.

A few weeks ago I agreed to a new gadget, an abdominal drain so we can drain the ascites buildup I'm getting every few weeks (not a good sign).  But the gemzar seems to be working.  Have been approved for lymparza for when gemzar is finished, and avastin still helps.  But, instead of having this drained with a needle every month or two by a radiologist, now Douglas has to drain me every week which is weird but keeps me more comfortable.  We always find humor in everything, like how our relationship went to a whole other level when he had to give me an enema.  The drain has likewise taken us in a different direction and level.

The down side is that I can't swim this summer.  It makes certain clothes uncomfortable due to the dressing and pulling on my skin.

So it's not as good as the port, but not terrible.

A bionic woman

It becomes harder and harder to write as more brain cells get fried - only 60 chemo done.  But I feel rather bionic  when I consider all the surgeries and chemo.  Three weeks ago had to add another surgery to my list, installation of an abdominal drain to take out ascites with so it would not have to be done in the hospital.  Douglas is skilled enough he can do the drainage and rebandage me.  I look at my body and realize that other than my brain fried by chemo, I have surgery everywhere except my right arms and my legs.  Tiring.  Realizing that if I had not started this process and illness very healthy and in good shape I would be in even greater trouble than I am, and probably dead already.  At least gemzar seems to be working and slowing this all down.  After that it will be lymparza as the last drug available to me which may help.  But need the FDA to approve something else soon to have in the line-up.  Bionic soon.

I hate abraxene

It is a taxol type drug.  thought in jan/feb we would like it and I would keep my hair but no - not only did the drug not work but it also made my hair fall out.  Boo hoo.  Got some great wigs via ebay from china  $15.00 each.  in my grey tones, but would rather have hair.  head can be cold in winter with no hair, sleeping in fleece hats made by the lovely volunteers at the hospital.  now I just have stumble like a 10 day growth.  Douglas can feel what its been like for 15 years.

Can't find a trial drug

Still looking.  no luck.  excluded by platinum resistant, wrong type of ovarian cancer, too many treatments.  Am on Gemzar and avastin now but if it stops working only 2 drugs left to try.

Barnabas Collins and me

when I was young we all watched "dark shadows" a rather gothic soap with Barnabas Collins as the starring character, naturally a vampire.  I feel he and I are getting very close since January.  I had to come off the trial drug at Yale after some unexpected side effects, ended up in hospital for six days, had 4.3 liters of fluid drained (10 lbs) and two blood transfusions since my bone marrow has decided not to make white and red blood cells anymore.

Since then two more blood transfusions, now on granix shots, very painful to get my bone marrow working better.  I feel like crap and think if it wasn't for my son and husband I would go to the vet and ask them to put me down like a dog.  more humane than letting me suffer this way.

Nurses try to be comforting along with social workers, but can anyone really understand unless they have gone through this, died and come back"?  I'm sure they think I'm a bit different.

Raising awareness around the world.

Nice to see my CNN post has been picked up all over the world.  Greece, Pakistan, and London to Alabama, Montana, and Missouri.  I'm now the top article beating out Angelina's boobs now.  Raising awareness.  Let's save some lives too.

Zofran is my best friend.

When I think back over the last 2.7 years it includes thinking of the nausea that has been an ongoing lovely experience. When I was drinking many years ago, I thought Jack Daniels was my BFF, sometimes ending in nights worshiping the porcelain gods of the bathroom, which I hated.  It was always so unpredictable and awful.  Now, it is not much better, just sober so I can really focus on it.   Chemo just does wonders to the body, especially when on a empty stomach.  Lucky me, truly, as I have only vomited about 5 times but I just don't find a joy in nibbling pretzels and my favorite biscuits (lemon) from France, although I enjoy the food and it does help the nausea, I am ready to move beyond this into another phase of life.  Beyond illness, trips to hospitals, a prisoner in my own home because I save all my energy for the trips to hospitals so I don't eat out.  Find it difficult to shop on the rare times I go.  So ready to let get of my new BFF.