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!

The "F" word. No, not that one...

Not that word.... the Fatigue word!  I am so, so, so tired!  I hear a lot about chemo induced fatigue.  I can't imagine what that is like because this is bad.  I'm on 3 meds that all list fatigue as a side-effect.  I really think it's the progesterone but I'm not sure...

My OB had me double up on my progesterone (to stop or reduce my bleeding) until I have the uterine ablation and I think it is causing me extreme fatigue.  I am so very tired.  I can barley function or keep my eyes open!  I debated cutting back to the "normal" dose but I'm trying to tough-it out. I'm not sure it's worth it.  I'll give it another day or two and then drop my dose back down.  I've had the bleeding so long now it won't matter for two more weeks.  I'd rather feel better than feel like I'm living in a fish bowl.

I'm still having a pain in my lower right side.  I think it's the cyst(?) they mentioned on my last scan. Sometimes it feels like a burning pain and at others it just throbs.  I'm going to tell my doc when I go in for my pre-op on Friday (next).  Maybe she can take a quick look via ultrasound.  I'm sure it's nothing but once you are diagnosed with CANCER, it makes you worry about everything.  Cancer patients do have a higher chance of getting a second cancer than those without cancer.  It just is what it is....

OK... I wrote the above a week ago.  I am still very, very tired!  I continued to take the double dose of progesterone until today.  I went to refill it yesterday and the pharmacy said my insurance wouldn't let me until next week.  The day of my procedure.  I won't need it after that! ARGH.... they told me I would have to have my doc call in the dosage change.  I sent her a message about it but haven't heard back.  I only have 3 pills left so I'm taking two today and one in the morning (I've been taking two in the a.m. and two in the p.m).  My pre-op appointment is tomorrow so I will ask her what she wants me to do.  I'm curious to know if she thinks its the progesterone making me tired.  I can't remember when my fatigue started. Before or after I doubled-up?  I hope its the medication and not something else because I want to feel better!  I just hope this ablation works.  Wednesday is the day.  The hospital called today to get me registered and fill out my "Health History".  Hey, I'm not having surgery, it's just a "procedure"...  I guess it doesn't matter.  I still don't know if they are going to use "conscious sedation" or general.  I'm sure it's propopherol--just like when I had my colonoscopy.  I am nervous about it.  I don't know why.  Here I've had two major surgeries and I wasn't that nervous but here I'm going for a same-day procedure and I'm worried about it.  I'm worried about possible complications.  I think I will feel better after I get all the details tomorrow.

Tomorrow is the day!  Ablation city... :)

I found this today:

It is a Zebra made out of Lego's!  Its at the Houston Zoo.  So cute!

My appointment with my doctor last Friday was mainly to just sign the release forms.  She told me that she'll scrape my uterus and sent that to pathology.  Just to be sure that there isn't anything else going on (more cancer).  I sure hope it isn't.  Then she will ablate the lining with a laser!  I still don't know if it will be general anesthesia or not.   It is up to the anesthesiologist.

I still don't know what time I have to be there.  They are supposed to call me anytime now.  She has two other procedures and wants to do mine last so that we're sure to have the octreotide on hand.  Her other procedures shouldn't take long.  I'm hoping it'll be before noon though!  It is hard to not have anything to drink for that long.  Not eating doesn't bother me but no coffee?  Sad...

On the "fatigue" front, I am still really tired but I think it's a bit better. No progesterone now for 4 days.  Not sure how long it take to get out of your system.  Not long I think.

I will let you know how it goes....

Mother Teresa's Humility List

I saw this on another blog "The Silver Pen" and wanted to share it with you.  Thank you Hollye for sharing this with your readers.  The Silver Pen is a fantastic blog if you are interested.  Hollye shares her breast cancer journey and SO MUCH MORE!

I hope that you are as inspired by Mother Teresa’s Humility List as I am!

1. Speak as little as possible about yourself.
2. Keep busy with your own affairs and not those of others.
3. Avoid curiosity (though I don’t think that she is referring to learning, here)
4. Do not interfere in the affairs of others.
5. Accept small irritations with good humor.
6. Do not dwell on the faults of others.
7. Accept censures even if unmerited.
8. Give in to the will of others.
9. Accept insults and injuries.
10. Accept contempt, being forgotten and disregarded.
11. Be courteous and delicate even when provoked by someone.
12. Do not seek to be admired and loved.
13. Do not protect yourself behind your own dignity.
14. Give in, in discussions, even when you are right.
15. Choose always the more difficult task.

I need to work on these!  

Not much...

Not much to report.  I guess that is a good thing.  I did get my pancreastatin back.  It was 119 so less than half of what it was!  I'm not sure what the normal range is.  It doesn't say and I haven't been back to the clinic to ask.  I think it is <100.  We will watch this one as it can be a more sensitive marker to show tumor progression.

Warning:  Girlie talk....
I have the uterine ablation scheduled for the end-of-the-month!  Yeah!  Still bleeding and I'm so sick of it.  I have to go in for a pre-op appointment the Friday before so I'll find out more then--like how exactly she will do it.  I know there are different techniques such as using a laser to burn the lining off or hot liquid to literally "boil" the lining of the uterus.  I'm glad I'm going to be "out" for it!  I don't know if it will be general anesthesia (doubtful) or conscious sedation (most likely).  All I care about it that I won't feel anything or remember anything (hopefully).  Of course, with Carcinoid Cancer there is always a risk of Carcinoid Crisis--this is where your blood pressure and/or temperature can plummet or go sky high and cause cardiac arrest.  This is why I have to have this procedure done in the OR.  Usually, it is an "in-office" procedure.  Octreotide can be given before, during and after procedures to help prevent Carcinoid Crisis but I don't know if I've ever needed it or gotten it during either of my surgeries (I know they had it on hand).  I know that I never had any issues during my liver surgery because I asked.  I'm not sure about my first surgery, the right-hemicolectomy. I doubt I had any problems.  Now that my tumor burden is very low, I would be surprised if I had any problems with the procedure but you never know.  My OBGYN is so on-top of everything, I'm sure she will take precautions (and I'm going to ask).  It would be my luck to have issues for a simple procedure but not major surgery!

Everything else is going OK. I've been very, very, very tired.  I'm not sure why. I am not (or at least I wasn't) anemic.  I guess I could be getting there.  I sleep pretty good.  This morning I felt like I was drugged.  I didn't even think I should be driving.  Luckily, it only takes me about 10 minutes to get to work.  I felt better by about 10am.  I just want to go home and lay down.  I don't usually nap but I think I might try tonight.  I just don't want to screw up my night-time sleep, you know?  I have no idea if this fatigue is related to the cancer or medication.  I think it's probably medication.  I take 3 drugs and they all list fatigue as a possible side-affect.  At least after my ablation I should be able to stop taking the progesterone.  I don't care if the hot flashes come back.  I can deal with those (I think).

I'll keep you posted on the procedure.  I don't, at this time, even know what time it is scheduled for!  I hope not too early!  I am not a morning person.  Of course, I don't want it to be too late in the day as I won't be able to eat or drink anything.  I'm hoping and praying for good results.  My only other option would be a hysterectomy and I really don't want another major surgery!