Time for Hospice.....UPDATE JAN 3, 2016

To me for the update.  This has been much harder than I anticipated.  I knew it would not be easier s y, however, after 5 years, f ok nappy hitting stable for the first time at a b poo it 4 years 10 months, then to only be there for 2 months b4 the Aromas o n stopped working!  But, realistically, I feel I was stable for the 17 of the 19 months that the tumor markers were going down.  They did not consider it to be stable until I reached 25.  At that point I was very 0ptimistic, yet waiting to see how long it would last as Dr. HONG Kong told me at the onset he expected about 15 month s is it n worked, once again I did a little better at 19 months, that was when I had my first change in the markers.  It went to 30, up to 30, than 60,90, and my last visit he just said it doubled.

I saw the rad s onco, Mind a y b4 Christmas with my son's.  She said her only option is the whole Birmingham rad s.  My son said, uhh our are offering it but do not underscored.  She said there is all the paperwork to get approval from my insurance an d. Medicare, and there is less than or = to only a 50% chance it will work.  There are serious security, such as low white and red cells and no guarantee they will come  ha v in up. I could end up needing transfusions and bequests shots.  It will not extend my life.  It n is palliative care.  In then asked her to check the least scans and see Wyatt ongoing b&b on w/right foot.  She said 'honey', it never goes to the feet, I said I understand, but will you see what B-) is going poo n with it?  She humored me, said OMG. I have not seen this, you have tumors on your right ankle, top bones and big toe.  We all laughed as she said, if you think it is tumor it is.  Every so o t you have asked a b&b out, is tumors.  So I then asked her about on my face right side by sinus, and yes there is a tumor.  

It was not a great visit.  She too says I could still do the Gemzar, but that has about 20% chance of helping with the pain, yet, I will be dealing with all the se which again are'm palliative (for pain), not expected to prolong my life.

Tuesday I see my onco.  I need to let him k nowing I am going to do the chemo or radiation.  AFTER STUDYING BOTH OPTI PPL NS, WE, AS A FAMILY HAVE DECIDED NOT TO DO EITHER.  THE NEGATIVE SE OUTWEIGH THE POSSIBLE BENIFITS.  So, it is now just when and  what hospice company I am choosing to use.  The one I want is Brighton Hospice.  However, the medical director of Quality Hospice is my pain management doctor and she is familiar with all of my issues with pain meds.  They will keep me on Fentanyl w/finalised as a breakthrough, she r was, starting with Brighton, they will insist on trying Morphine (which I do not tolerate, I get combative and very ill), but they give weekly acupuncture. And no-weekly therapeutic full body massages, and I get them now at the Cancer Wellness House.  The acupuncturist and masseuse are amazing, both are certified for cancer and burn victims.  So... we are having both companies come for an interview and that is (2h, ow I will decide.  Brighton will have an audience 2x a week to help me shower, as well as the nurse who will do blood draws and flush my port.

Brighton is willing to spend more on their patients, and the massage is amazing.  

The hardest part this time, is I agree I am out of options.  2 1/2 years ago when they were pushing hospice, I did not feel it was time or that everything had been done.  This time I know I am out of options and the pain has increased so much, fast, that I feel it is time or close for hospice.  I have struggled with knowing my time is running out.  I finally accepted it 5 years ago, then got complacent as the time kept coming.  Now I am working on putting it in God's hands, I have done all I can do physically.  This is hard to do. A lot of emotions, some fears, and at times a real sense of peace, yet, one of the hardest decisions of any that I have made.

With it also comes friends and some family questioning if I am just giving up.  Some of these friends have questioned every move the doctors have made.  Now i have answered a few by stating when they get MD, Oncology after their name, then I will consider their opinions, but until then, I prefer being treated by the one with 12 years of classes and basic training, then a residency of up to 8 more years to get hired on here in their specialty!  That has mostly stopped the pushy ones without a clue, then there are a few who have read a couple articles and want me to discuss the findings with my onco.  A couple were pushing the hemp oil as a 'cure'.  

I am beyond the trials that have come out and I understand that they do not understand that trials are for different bc, different stages, depend on first lines of treatment etc.  I am patient as their hearts are in the right'm place....  until they get pushy, then I back off or have asked a few to, and cut more out who were b&b stressing me b&b out b&b pushing their boundaries.  Overall, most just want to be helpful and don't know what to say or do now.

Different stages of this journey require softer gloves for friends, and its time to take off the boxing gloves and live as well as possible to the end.  Both my rad s onco and med onco said, because the cancer is in the bones, it could go on longer.  This is not always a good thing as the pain will increase to the point that I will lose mobility... both feel about 8-12 weeks from last week.  The pain just gets so bad I will not be able to walk distance, but should be able  to get to the rest room for a while.  They both think maybe 6 - 12 months max, but both said that is just based on me asking and what they have seen.  My onco said but with me, he has no real prognosis as I have not follows anything, that it is in God's Hands if'm we are getting philosophical!   LAUGHED.

Just keep praying f you believe in it.  I do.  With as much cancer as I am riddled with... even doctors are all surprised!  

Love you all and thank you for the support,  my sense of humor is still functional and gets me through a lot of really hard, emotional times.  

Huge to all

Carol

 

 

 

 

 

Merry Christmas to me.  I was trying to put this all off till after Christmas.  Saw onco Tuesday.  My tumor markers doubled again.  It is definate the Aromason has run its course.  Monday I have ct scan of my ribs, lungs and liver, and an MRI of my lumbar spine, right hip and tailbone.  After a hands on physical exam, he is quite certain I did not break a rib, that is most likely cancer/tumor involvement to the lining of the lung or the connective tissue of the ribs.  He believes tumor is hitting a nerve somewhere on or near the spine, causing leg to go out and falling, weakness in my legs.

I have scans Monday and my radiology oncologist will pull the scans and my onco,rads onco, and pain management doctor will go poo her them at the tumor board Tues am.  Then will call me.  His plan is to gamma knife if it is tumor/nerve, get my pain meds under control.

We are hoping the scans are better than the symptoms and blood work. The fentanyl patches are poo not effective in managing the pain for about 36-40 hours, then the pain, followed by chills, sweats and cramping.... this is withdrawls setting in. Hence, trying to get the pain managed b4 hospice.  I feel like the roller coaster has begun again, except this time I feel like we have exhausted all medical options, and I am sleeping more than being awake.  

I still have hope at least for more time.  His prognosis is 8-12 weeks still mobile w/cane, and 6months -12 being alive.  Providing I don't end up w/pneumonia or clots. As he says, this could change w/the scans and I have not.followed the normal course up to now....

Hugs to all,

Carol