Mom - Gone 3.27.11

Well, after almost 3 years of a fight few people I know would have fought so valiantly, mom lost her battle with cancer on March 27, 2011.  It wasn't the breast cancer--it was a second cancer: melanoma.  It reared it's ugly head on November 18th after an emergency admittance to the hospital followed by surgery to remove the lesion on her right breast that was originally diagnosed as breast cancer.

The story is too long for right now but perhaps in a little while I will share it all.

Rest mom...you fought so hard and so well.  And you never once complained.  That lesson I'm trying to live every day now.

November 27--my back

Well, it has been 20 years of lifting a wheelchair in and out of car trunks but now lifting a 100 lb woman on and off toilet seats is doing quite the final job on my lower back.  Chronic pain started for me about 2 years ago....this could be really bad down the road.  But I cannot worry about that right now.

This morning was not as good as yesterday morning--she needed help with everything again.  And then she surprised me by calling in a prescription to the pharmacy herself.  That was good!

I am trying to "stay in the moment" as so many dear friends have told me to.  "Be with her, stay in the present and listen to her voice" is something I was told.  I'm trying--it is hard.  I'm depressed of course--who wouldn't be.  But I'm trying nonetheless.  Mom has that depressed look on her face about 90% of the time now.  She has never had that before...I think this is significant to where things are and where they will be going.

Today I need to go to the stores for groceries, a few supplies for her bathroom and whatnot.  I have no help at home yet, no one to stay with her when I'm out.  She SHOULD be alright because she always has been in the past.  I will spread the trips out over the course of the day so she isn't alone for too long at any one period of time.

November 26--continued

Today was a battery of phone calls and a few visits.  The medical supply company came to swap out the horrifically noisy home oxygen concentrator and to bring new tubing and an evaporation connector.  Unfortunately there is so much humidity in my house that mom's nose runs even on this new version of the machine.  She's fine on the portable tanks though.  So I might have to deal with tank delivery more often than I care to.  We'll see.

Next came the nurse assessment from the VNA.  A delightful young woman who was also very thorough. But let's face it, Medicare pays for the barebones only so I'll be working with a social worker to figure out additional home health care, 24-hour care when needed, etc.  Hopefully I'm strong enough to take on some of this for a while and only have to have someone here 4 hours or so each day so I can shop, take a break, etc.  With the semester winding down and the spring semester not starting up until February I've got the flexibility of being available.

I'm tired...ok, I'm more than tired.  I've reached a new level of understanding what exhaustion is.  And sadly I think that I'll look back at this moment and think "Ha!  I wasn't even close to the TRUE state of physical, mental and emotional exhaustion yet."  Not very comforting but at least I'm realistic.

Speaking of realistic, the nurse today agreed with me:  mom has probably started down that last part of road and that the the journey won't be very long.  No matter how prepared I think I will be, I'm not stupid--I know I won't be ready.  But I'm also aware of her growing depression and the look of being tired in her eyes and face.  And I can't blame her.  How she has done what she has done for the last 20 years I have no idea.

I'll write as often as possible--I want to write daily.  I do not think many people will ever read this but it will be here as a chronicle regardless.  She deserves that...so do I.

November 26 -- better

Last night was horrific. Belligerent, abusive, bordering on hostile. Signs of dementia and hallucinations. Incapable of transferring from wheelchair to toilet.

This morning....clearly the pain has subsided enough for her to think straight. She actually went to the bathroom all by herself. I fell asleep on the couch in her room near the bathroom and the flushing of the toilet woke me. Then she did all her morning bathing and dressing with only a little assistance. Now she is exhausted--but I'll take that.

I believe I saw what lies ahead in the events of last night. If she continues to improve with regard to strength and will, perhaps her quality of life will be ok for a while. But I suspect the next time she "takes a turn" it will for the worse as they say.

Thanksgiving - 2010...

(For those that once followed and may follow again: Buford passed away December 2009. That was the first day my heart broke. My best friend and soul mate unexpectedly passed away September 16, 2010. That was the second time in less than a year that my heart broke. And now we are most likely heading toward the third time...not sure if it will happen in the same calendar year but it really doesn't matter, does it?)

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Haven't posted in a year and half...frankly because I forgot I had the blog. I wish I could say there was better news to report but sadly things started to take a "turn" back in September 2010. The cancer has started progressing / advancing and well, here's what happened and where things stand with mom now:

She started to show signs of the cancer getting "smarter" and the Aromasin no longer being effective. The external primary lesion doubled in size almost overnight and a Pet-CT in October showed significant growth in the breast lesions and "activity" in the liver lesions. This was all discovered just before I moved my mother into my home because the external primary lesion on her breast began to bleed.

NYU was now too far away--everything had to be moved to Delaware. If she needed to undergo radiation then there was no way for NYU to be part of her world. Before being able to get anything set it was November and she ended up in the ER at the local hospital because I could not get the bleeding under control. While there we were put in touch with an oncologist and her first appointment was set up.

NYU started posturing with regard to releasing her records. I was in the middle of a professional pissing contest. NYU wanted DE to contact them--and they know it does NOT work that way. Fortunately the people in DE are more human that those in NYU (and I say that as a member of a family filled with doctors who are associated with NYU). Finally her records were received and she was seen by a very attentive and supportive oncologist.

Radiation was the next step and the appointment with the radiation oncologist was scheduled. All for naught as I had to call an ambulance to the house to take her to the hospital because again, the bleeding could not be stopped and this time it was very bad.

Time to add insult to injury: the bleeding was finally controlled but her O2 stats were in the mid-80's. BAD NEWS! So on November 18, 2010 my mother was admitted to Christiana Hospital. Her O2 never came back up without the aid of oxygen so she was plugged into the O2 system in her room. Next began the parade of doctors: oncologist, covering primary physician, covering surgeon...that's right, surgeon. There was no way to avoid it any longer.

At first it appeared as if they wanted to do a full mastectomy. Really?! To serve what purpose?? She's 86 years old, her breathing is compromised, she has had liver mets since diagnosis 2.5 years ago and the cancer has finally spread to her lymph nodes. Essentially she has been in Stage Iv for two and half years--median life expectancy for a woman HALF her age! Who are we kidding her? She would never survive the recovery and in all honesty, she's heading toward the final turn of the home stretch so can we PLEASE concentrate on quality of life and comfort?

I was heard...not sure by who, but I was heard. On Tuesday, November 23, 2010, my mother had a lumpectomy under local anesthesia. On Wednesday, November 24, 2010 my mother returned home to my house with a supply of oxygen the likes of which I have never seen. She is weak--from the surgery and from being in the hospital in a bed for 6 days. She is worn out, in mild pain, and I see a lack of willpower for the first time. She cannot transfer from the wheelchair to the toilet without assistance so I am going to need lots of help.

Me? I'm exhausted. I'm angry...ok, I've been angry for years (heck, my whole life). I have no patience to deal with this situation because I cannot "fix" it. I loathe her whining and constant asking for things---not things that she needs, but things to simply distract me from doing my work (which if I don't get done will not fare well for either of our futures). I know she just wants company. But if she would just once in her life ask for help it would be easier. That, of course, is not something she has ever been able to do so why I am hoping for the "old dog to learn a new trick" I have no idea.

Yes, it's like a mirror. And it is a valid argument for nature vs. nurture given the fact that I'm adopted. She has no patience--I have no patience. She cannot ask anyone for help--I most certainly cannot ask for help. "Damn it! Leave me alone! I can do this!!" (Um, no, I really can't but that is my make up, my personality, and these are perhaps two of the big life lessons I'm here to learn....wonder how I'm doing??)

So I do not really know what the road will bring...well, actually I do. I just don't know how long the road is nor how many potholes, hidden drives, and other obstacles are awaiting me. Regardless, it is going to be ugly and hard. And that is probably just skimming the surface.

Monthly Oncologist Appointment Today

Haven't written in a while because, well--Thank God but everything has been going well. I'm always nervous on these trip days to NYUCI just hoping and praying that she remains stable and that the blood markers continue dropping.

I'm been up to my eyeballs in medical problems with Buford, my oldest dog. So my attention and writing has been directed at that blog.

I'm worn out between all the worries of mom, the pup and the job. Hopefully today will be a good day.

Back on Track

Ok, cutting to it:

The PET-CT scan on 12/10 was finally compared to the original one from July and everyone is happy. While I did not speak to the doctor myself, and I am very careful with my mother's description of phone conversations, I believe she's in good shape. She said the doctor's nurse called and said the comparison showed good progress, and that Dr. Tiersten was very happy with the report.

I will call myself tomorrow to get as many details as I can but every time there has been "concerned" news they have called me and not my mother because they know I am the "go to person." Today they called her and I have to believe it was because it was only a good report.

More when I get details....