Mesothelioma Awareness!

I received an email from the Community Outreach Director of the Mesothelioma Cancer Alliance asking if I would help bring awareness to their cause.  September 26th is Mesothelioma Awareness Day!  Below is a link to "8 Things You Should Know About Mesothelioma".  I did not know most of these.

Please help raise awareness!  I edited this so that you can click on the link below to go to this link!

http://www.mesothelioma.com/blog/authors/emily/8-things-you-should-know-about-mesothelioma.htm

Mom..

I was reading a blog the other day and it made me realize I've never talked about my Mom and her last days. This blog will be about that time in my life and about her...

I'm not going to start at the beginning but at the beginning of the end.

My mom had lung cancer (surgery and chemo) and then had some stomach pain so she had a colonoscopy, which found a tumor in her small intestines (same place as mine).  It was cancer--I am not sure what they called it.  Probably adenocarcinoma.  She did not have Carcinoid, like me.  She didn't want more chemotherapy.  We didn't push her.  In hind-site, of course, we wish we had!

A few months later she had a pain in her side and after a CT Scan the doctor told her that her liver was full of tumors to numerous to count.  She went in for a biopsy but her blood was too thin for them to do it.  They tried different drugs to help her blood count come up but to no avail.

Her doctor told her there was nothing they could do. She said she'd do anything they wanted her to do. They said they would call hospice.  (This was 11 years ago.  I'm not sure if there would be any options now as bad as it looked.)

I had just arrived at my work parking garage when I got a call from my dad.  This was not quite 3 weeks after her last appointment with her doctor.  My dad never called!  He said my mom wouldn't get out of bed.  He didn't know what was wrong.  I could hear the distress in his voice.  I got back in my car and headed to my parents house about 30 minutes away.  I think this was a Friday.

When I got there, my mom was still in bed.  I asked her what was wrong, was she in pain?  She said she just didn't want to get up.  There was no point.  I laid down on the bed next to her and we talked for a bit.  She said she didn't want to die.  She wasn't ready.  I told her I didn't want her to die either--

I did finally get her up and to the bathroom.  I'm not a very big person and neither was my mom but we barely made it!  I also got her to go downstairs to her chair.  I made some calls to my sister and her doctor (about hospice and why we hadn't heard from them).  I don't remember exactly but I do know I got a call from hospice and they were sending a nurse right over.

The nurse arrived and talked with my mom for a while.  Her main concern was pain management.  She also asked if we wanted a hospital type bed for her so she didn't have to try and go up and down the stairs.  They had one delivered that day!  My mom did not want to die in the hospital.  She wanted to be home.

My pretty mom!

Speaking with the nurse I explained my concern that she (mom) wasn't eating anything.  The nurse (I can't remember her name but she was very kind and compassionate).  She told me not to worry about it because at this point we would just be feeding the tumors.  I was also worried about her drifting off when answering questions.  Mom would start to answer or ask a question and then just sort of drift off in mid-sentence.  She (nurse) explained that when the body is shutting down, all the oxygen goes to trying to keep it alive and the brain gets less and less oxygen.

That afternoon my other sister came down and a few other people dropped by.  One of my mom's good friends, Lyla, brought her a strawberry frozen yogurt and she did eat a few bites.  My husband also had come down so it was a bit busy and noisy with people in and out.  One of the last things I remember my mom saying, in a whisper, to Lyla, her friend, was that she wished everyone would go home!

We did ask everyone to leave after that.  I figured she wanted some peace and quiet.  My sister went to get her pain meds filled and she seemed more comfortable after we got everything on board.  The nurse had told me to call her at anytime if I had questions or problems and that she'd be by the next day.  My sister went home that night and was going to come back in the morning.  I was going to go into work on Monday and get my FMLA paperwork filled out so I could take some time off to help care for my mom.  We were planning on taking turns between the three of us.  My other sister was coming up from her home about 3 hours away the following day.  Another friend of my moms who was legally blind was making arrangements for her daughter to bring her down so she could say her "goodbye".  

I think my mom was just done.  She was never one to want anyone fussing over her!  She was not responding to me much that evening.  She moaned a lot off and on so I gave her more pain meds when she seemed to need them.  I slept on the couch.  She passed in the night.  I knew as soon as I woke up that she was gone.  It was three weeks from the time the doctors told us there was nothing they could do.  When I called the hospice nurse, she was shocked.  She thought she would last a week or even two.  

This post came about due to a question one of my fellow "noids" asked on a support group site.  He wanted to know if anyone knew of any stats on what we die from (liver, tumor growth, heart problems)?  It made me think of my mom.  This post was very emotional for me to write.  I think I know how I'll die.  Most likely from liver failure.  

I do have some regrets.  I wished I'd stayed awake and been by mom's side when she passed.  At least I was there and she wasn't alone...

Mixed emotions...

I went with my friend for his final radiation treatment for prostate cancer.  He had 45 treatments and is now done!  He got to "ring the bell".

I was left with mixed emotions.  While I am very happy for him--his treatment has ended-- it made me sad to realize I'll never get to "ring the bell".  I'll never be "finished" with treatment.  Not that I have much in terms of treatment for my cancer.  A shot every four weeks.  Surgery.  Down the road I know there will be more. Perhaps liver directed therapy if my tumors start to grow or the number increases.  My treatment will not end.  Not until I do.  There is no cure.  There is little chance of remission.  No NED (no evidence of disease).  Not unless there is a miracle and my cancer disappears!  Hey, people say it happens.

I do hope his cancer never comes back.  I'm not sure of his risk of recurrence but I think it's pretty high.  He had a pretty aggressive cancer.  I asked him if it felt weird to be on his own now.  No more daily appointments.  No more feeling like you're really doing something to kill the cancer.  I get it.  When I went from lots of appointments, surgery, tests, etc. to basically a shot, it was like being cut-off.  Set adrift.  I felt somewhat lost.  I'm sure he does now too.  I told him I understood.  It is normal.  I read a lot of cancer patients blogs.  It isn't the first time I've heard about that feeling when treatment ends.

I'm okay with my treatment for now.  I feel good about my decision to go ahead with the liver surgery.  Even knowing it wasn't a cure and that it would still leave me with several tumors.  I believe it bought me time.  Hopefully a lot of time!  I am still very, very, tired.  Maybe not quite as tired as I was while taking the progesterone but pretty freakin exhausted.  The jury is still out on whether or not the removal of my uterine fibroid will stop my bleeding.  I'm still spotting but it is getting lighter.  That reminds me, I need to call and make my post-op appointment with my doc.  Better get to it!

Cheers!

Good Quote & Blog

This is an excellent quote I just pulled from another blog http://www.livinglegendary.org/
It is not the her quote but I just thought it pretty much sums it up.  I too dislike the "fight" and "lost his/her fight with cancer", etc., etc.

Cancer is not a battle that we win or lose. It is not our fault or a sign of weakness. We are not responsible for our cancer outcomes. The crapshoot of cancer and recurrence can NOT be controlled. Celebrate yourself for each time you, despite all the trauma of cancer, treatment, and the mindfuck of “survivorship”, choose to love, live, lust, laugh… We are not a success story based on our cancer progression or not. We succeed when we are courageous enough to keep walking forward even with missing parts, severe pain, addled brains, and broken hearts.–Dr. Erica Bernstein

Sadly, Jen Smith, the writer of the blog "Living Legendary" and the book "Learning to Live Legendary" just entered hospice.  She has stage IV breast cancer and leaves behind a 6 year old son.  Jen is 36.  I've ordered her book and can't wait to receive it.  You can order it through Amazon or go to her website above.

I wish I had come upon her blog earlier.  It is so hard to start reading when you know the ending but that is almost always the case with a stage IV cancer diagnosis.  I want to "live legendary" and make each day count.

50/50

My procedure was 50% successful!  I guess I could also say it was 50% unsuccessful but I'm trying to be positive.  One positive is that i came through it without any evidence of carcinoid crisis.

I did have a fibroid tumor, which on the pathology report say's "submucosal leiomyoma", a rarer type of fibroid (5%) that grows into the inner cavity of the uterus and can cause... irregular bleeding!  It may be the reason I was bleeding all along.  Now, why did she seem surprised I had a fibroid when it said I did on my cat scan done in April?  Well, it didn't mention it on my scan I had in July.  I need to go back and read that report. However, after she removed the fibroid, she could not get the ablation device to deploy.  I'm not sure exactly how it deploys but I guess my uterus was done with her and said "hell no, you're not doing anything else to me today"!  She tried two devices (both worked outside the uterus) and neither would deploy in me. this is why I say my procedure was 50% successful!

On another good note, the pathology all came back with NO signs of cancer!  I was a little worried.  You just never know.

I have a follow-up appointment in 6 weeks.  She did say that if this doesn't stop my bleeding, I have two choices.

1. Live with it (not a very good choice).
2. Hysterectomy.

Not sure how I feel about another surgery.  I guess it would depend on how she would do it and how much work I'd have to miss.  It's actually more the "how much work would I miss", than the surgery issue.  I just have NO sick or vacation time to take this year.  I would definitely have to wait until next year to do anything.  I'm just going to have to wait and see...

I hope everyone had a great Labor Day weekend!