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Moli at another cross roads and mentally crying out loud.

molimoli
Posts: 514
Joined: Aug 2014

No sounds . no tears  but brain is hollering loud and nuff.  What To do with the reality of  this illness.?

Hello  my sisters, my soul  sustainers  Hello.  Although I hae been on the board  I have not posted  because  my treatment suggestions , rejections,request rejection,  indicisions ,actions and inactions keeps getting in the way, oh what a dizzying whirl wind  this monsterous cancer has bestowed upon me ,dare I say us?   Yes us.   I have read all your recent journeys , happy for some and sad for others . when I mentally  run to the  creator for comfort I ask for showers of blessings for you all  too.  RO 10  Stay strong you are loved.

 

My last few months  went something like this:

January ct scan :   recurrence  2 pelvic nodules both  less than 2cm

March    ct scan:    pelvic  nodules pretty much doubled up.

Oncologist suggestion:         Chemotherapy

Family Doctors suggestion:   Chemotherapy

Nurse Clinician   "                 Chemo

The Butcher, The Baker, The Candlestick maker:  suggestion : CHEMOTHERAPY

My reaction: (  very loud without words)  OH Gaaaad NO, Not This Gift That's  Gonna Keep On Giving  To  Me.    (then with words I heard me say ) no no no  (with no pause, sounding like Amy Weinhouse.) 

My  request  : surgery

Oncologist : Absolutely not. no no no .( her time  to sound like Amy Weinhouse,  geezz !!) .

I then asked for MRI  instead of more  CT  Scans booked for May .

In  the  last year I have had 6 already,That was my arguememt for MRI,,it didn't work , "no" was the order of the month, it seemed.  I didn't show up for ct scans,I cancelled. My Doctors are all very brilliant ,experienced and  caring but I am yearning for more options, more reliable and predictable treatment.They respectfully tell me that they too are yearning for better but this is all they have at this time. It begs the question What's a doctor who really cares , to do with us and our anger provoking dis-satisfaction.Yes it makes me angry that there are no green arrows at the crossroads for us.

Out of frustration at being  in limbo land  I shut cancer down and went back to the business of living for a month. Then last monday I went  to have an EEG test  to address  electrical shocks I have  been having in my brain periodically, for years ,  after the test I got to spend  at least 2 hours just talking with my  neurologist about everything thats going on  with me ., In those 2 hours he was a neurologist  ,father, ,brother, teacher ,he consoled when needed  yet reprimanded when necessary re: my decision to  not tell my family at this time. most of all he opened my eyes to  some reality re: my worry about so many scans. and my refusal to have  more ,also the nature of my cancer, an eye opener.

 

These were his exact words.  " I respect your concern  and  I will not fool you or attempt to unschool myself , yes ct scans can and do cause other cancers but if you get a ct scan related cancer I gurrantee you that the kind of cancer that you have will kill you  way before a ct  cancer gets out of the gate. Do yourself a favor and re book the appointment for the scan " 

 He cried and gave me a hug and  for the first time in this journey I cried for me., I actually cried for me, this time.I didn't cry for my children or my grand children . I cried for me because I get it ,with no sugar coating , yet with no such spoken words from this God sent Chinese doctor that is far removed from my cancer care team at another hospital. I looked in his eyes while he begged me to tell my family and I suddenly understood his unspoken message.   I get it  that I have one foot in the grave and one on a banana peel that is on wet concrete.

 

I am booked for the CT scan for June 24th ,and no one had any trouble with me , yes I did , My oncologist/ surgeon called to say she received a letter from the neurologist ,She wouid not disclose the content but  offers to look at the scans when they are done , and will consider surgery if no further masses are seen , now it's how to keep those masses away .I am at peace with the offer. but not yet doing the no chemo happy dance , because there are sensations in my abdomen that keeps me pondering, overall I feel very well. last night I had a 3 hour walk.

Wishing all of you better health and peace of mind, nuff nuff love.

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Hi-

Some questions and food for thought that might raise some questions for discussion with the surgeon.

I recently spent a lot of time with my bff who had kidney cancer mets and I learned a couple of things from her thoracic surgeon (she had lung mets) at Stanford.  She was on an oral chemo for 6 months and scanned often before they concluded that she had only a single nodule in her lung and that surgery would give her the best quality of life - and a 30% chance of a cure.  I realize that this is kidney cancer - not UPSC.  But what was interesting to me (because I asked lots of questions) was that the thoracic surgeon explained that Kidney cancer can sometimes metastasize differently than other cancers, that it can often be a single lesion only and that in the case of most other cancers, once there is one lesion noted, it is assumed that the "horse is out of the barn" and that lesion is simply the only one that is large enough to show on a scan, that there are other cells elsewhere but they haven't grown large enough to show up.  That is why chemotherapy is typically recommended vs. surgery.  As you know, lots of cancers like to take up residence in the lung, but he typically does not do surgery in the case of other cancer mets.  This may raise some questions for you about why the Fellow was assuming other small lesions that were not noted on the scan report. 

I also asked if there wasn't a danger of that lung nodule metastasizing while they were waiting for her to complete a course of oral chemo.  He told me that the mechanism of metastasis is not fully understood, but they don't think that (in her case the lung nodule) the mets make more mets (and remember, this may be specific to kidney cancer) that cells had already metastasized from the getgo and it had just taken a while for them to settle and grow.  In her case, she was 5 years post surgery, and that was in her favor - the length of time it took to show up.  The oral chemo was given to hopefully kill off anyother rogue cells that might be elsewhere before they found an opportunistic place to plant themselvs.

And the bottom line is it's all a guessing game with this cancer stuff and all they have to go on is statistics.  We're all different and we all respond differently.  I hope the above information (which I may have misunderstood) might raise some questions for you to have a conversation with your surgeron about.  Basically - why or why not surgery?

Best,

Suzanne

 

molimoli
Posts: 514
Joined: Aug 2014

Hi ladies I am updating,:Saw my surgeon today, she said ,NO SURGERY FOR ME.  Believe it or not I fully get her  fears  after detailed explaination. I got it before and I get it now UPSC sucks. 

Once  she cut open my pelvic area  she must get my bladder,bowels and all  other organs out of the way to access  the 2 tumors on both sides closer to the back of  pelvic area.

 Getting them back in their place at  the end would be a daunting if not impossibe task. No good result will come from the surgery if I end up with a colostomy bag ,and or irreparable damage to other organs like bladder etc., My interior structure has already been changed with the hysterectomy.She may not be able to find suitable structures to reattach organs moved out of place.causing a whole host of problems That I don't currently have.

"Surgery will buy you nothing  at all in terms of saving you from upsc ,Once there are mets after surgery there are  already many seedlings waiting their  turn to grow.In managing this we give Chemo, and or radiation in an attempt  to stunt and delay growth. In my 27 years as oncologist/surgeon I have found that the patients who are embracing the Idea of a cure are the most disappointed and sad patients. Likewise,  although I am sure you don't expect a cure , you are trying to borrow trouble, disappointments  and sadness with your insistence on such dangerous  surgery which could be morbid, therefore, robbing you of a few more years in which time ,improved  treatment options  may come along"

So said my oncologist/ surgeon at one of the top 5 cancer research center in the world. I love the honesty of the seasoned doctors , No patience for tricky fellows.

OH I REALLY DO NEED JESUS!!!  but in the mean time I need a sleep-a thon. Then a big ole dripping vanilla ice cream cone . ( don't any of you comment on the big ole sugary icecream cone)I AM HAVING IT,as soon a I wake, have not had one in many moons.I need it or a blankey.   LOL .

                                                                     Nuff love and bessings

Sorry to read of the continued trials some of you my sisters are dealing with. I may not always respond individually but I constantly embrace you all ,if only in my mind. when I cry out to my creator for guidance or help, I never forget to remember you, Moli.

molimoli
Posts: 514
Joined: Aug 2014

Has any one had  Cis or Carb without Taxol,? Doctor said Taxol is what causes most of the problems and periferal damages.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Good Morning, moli,

 

I had 6 cycles of both Carboplatin and Taxol, so I can't answer your question.  However, I do believe that the Taxol is what caused my incredibly severe lower back pain while undergoing chemo treatments.  I ended up having two epidural shots spaced strategically between chemo treatments.  I was really miserable.  I can remember not being able to stand or walk for more than a few minutes at a time.  It was tricky taking a shower, even.  The pain would come on quite quickly and felt as though someone was trying to cut my leg off at the hip with a knife.  The only thing that helped- before I received the epidurals- was sitting with my legs elevated.   I am certain that the Taxol caused my neuropathy in my toes and the balls of my feet.  The neuropathy has not improved since chemo ended in March, 2014.

I hope that you know that I often think about you and your cancer journey.  I pray that all goes well for you, moli, and that you find joy in living each and everyday.   Yesterday, I was thinking about the word "enjoy" and what that means to me.  When I enjoy something- swimming for example- I am experiencing a form of joy.   It struck me that it is often the smallest and most inconsequential things in life that bring me the most pleasure.  This cancer journey is as much emotional as it is physical.  I am now saying such statements to myself as "Stop it!" when I begin to dwell on the negative aspects of this journey.  moli, you are such a beautiful and strong woman and I admire your strength and determination.  Keep up the good fight!

Warmly,

Cathy

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Moli, that is quite an honest and straightforward explanation from your surgeon.  What is your next step? 

Sending best wishes,

Suzanne

Cucu me
Posts: 214
Joined: Apr 2015

of the facts.We never know.

Praying for you and allof us.

molimoli
Posts: 514
Joined: Aug 2014

Thanks for your kind wishes,I too hope so for all of us.I will surely see with time,The thought of the not knowing what"s around the bend is usually frightening, thanks to the creator my frightened days were Less than few, suspended then dismissed a long time ago, I won't embrace fright ,it's bad company and it builds prison walls around one's spirit.I have't got the time ,literally.

Nuff,nuff love and enhanced blessings,my wish for us.

molimoli
Posts: 514
Joined: Aug 2014

Old folks warn ,'be careful what you wish for ,you may just get it'  I wanted no bull shitting , I got  no bull shitting  and it sent me straight into a semi-coma like sleep  and then I comforted my battered weary self  with 2 vanilla ice cream cone. felt so very guilty I went right to sleep again  Well glass still half full,Moli needed sleep,so it seemed.

Next step : Travelling overseas  soon to have a chat with a gyne. oncologist/ herbalist. ( sounds like a jack of all trades eh?  )  in my search for a second opinion.or my search to explore surgical /herbal intervention.We'll see, I am not rolling over , not today not tomorrow, I'll try other things 'till I feel dumb,  or the  s... hits the fan .  all the while finding some joy on the journey.

 Thanks for your concern Suzanne, Nuff love.

molimoli
Posts: 514
Joined: Aug 2014

Cathy sorry for your unpleasant journey but thanks for the info,now my hips  will hurt for the rest of the day,Dear God, lol .      Yes ,we must find ways to enjoy life inspite of this darn hurricane,it shows  that we are  appreciative  of the warning ,giving us the opportunity  to hurry up and do the things  that we have been procrastinating about for far too long. Every day we wake the possibility of positive change arises , may be change in our health ,attitude  how and whom we love,just an endless list of things to do and achieve,with life.

 Cathy you build me up every time ,all the time, Don't wonder if I know, I sense you on my journey ,therefore,I am with you all the while, Thanks to you and all the other ladies here for the company.I was in an awfully lonely alley when you guys happened by.  no regrets. I am embracing you all with every breath ,except when I am sleeping, of course.  Speaking of sleep ,it's 6:20 am  going to sleep ,Have a great day my sister.

My strength comes from the collective force here.  much thanks ,nuff love.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

A long, arduous journey is less so with a friend by one's side.  Thanks for joining me in my journey and for allowing me to participate in yours.  Just wish our journeys were overseas and not with cancer!

nuff love,

Cathy

AWK
Posts: 364
Joined: Mar 2013

I agree!  This is not the girls trip I had in mind!  But good things are happening because of it and for that I am grateful.  And Moli, I love your doctor - mine have always been very straight with me which makes it so much easier.  I hope you enjoyed your vanilla ice cream.  i do the same thing too from time to time.  

Hugs - Anne

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