Sunday, May 1, 2016

Dread the Spread

For the past month I've had a very bad time with my asthma and/or COPD.  I depleted my rescue inhaler in les than 3 weeks, and the insurance denies an early refill, leaving me with no relief, and an inability to get even from one room to another without nearly passing out from shortness of breath.
On Monday, the 25th of April, it had reached critical peak, and after speaking to my PCP, I called an ambulance and went to the ER.  What followed was nebulizer treatments, steroids, O2, etc., and 29 hours in the ER before being able to secure a bed and be admitted.
Because my breathing was not improved with treatments, it was decided they'd do a CAT scan of my lungs to check for a possible blood clot, since I had recently had additional surgery, and it was indeed a possibility.
I was still in the ER at this time... I had been there 15 hours at this point, when a new doctor came and started discussing my history of breast cancer.
Then, came the shock of my life.  The CAT scan had revealed that the cancer had metastasized to the lymphangatic system in my abdomen, and to my bones -- specifically to my thoracic vertebrae. 
The doctor apologized for giving me this lousy news while alone in the ER.
I immediately secured a phone and called my sister (at 3am), who got so scared at the phone ringing at that time that she though someone was calling to say I had died.
I just couldn't tolerate being alone for too long with this devastating news.
Later on, Melissa came by as well, while another doctor was talking to me.  I saw her but knew I couldn't acknowledge her presence just yet, or both of us would break down.  After the doc left, I opened my arms to receive her, and we both held each other, shedding many tears.  It kills me to see her cry, and even now, my tears flow just thinking about it.  Our love in deep and unique.  She truly feels me.
Anyhow, after 29 long hours in the ER, I finally got a bed on the floor, which is where I've been now for 3 days.  Writing this on paper until I can transcribe it to my computer.
Earlier this afternoon, I had another CAT scan of my addomen and pelvis, and a full body bone scan.  Those results will probably come tomorrow.
The breathing problem is very slowly improving, and is, in most part, a separate issue from the cancer developments.
Some of the oncologists have said I will probably have to undergo additonaly chemo and radiation.  Right now I'm not too certain of my prognosis.  The oncology team will talk to me some more tomorrow.
I hope I can go home soon.

Thursday now.
Still in hospitaol, and not leaving today.  Been running a temp all night.  Had blood cultures done this a.m.  Results tomorrow.  Still pretty hard to breathe.
CAT scan showed cancer in some abdominal lymph nodes, and lung as well.  It's hard to comprehend all the info sometimes.  Still waiting to hear on the bone scan results.
In any event, I will need either a lung or bone biopsy, I believe... haven't heard which just yet.  Neither sounds like fun.
My veins are a disaster, and I've endured literally hours of being poked, trying to get IV access, draw blood, etc.  Don't know if I can handle one more attempt at this, truthfully.

So... some updated info.  My lungs have some small specks (7mm) of metastasis.  Also, my ribs and spine have been affected.  Tomorrow morning I will be going for a bone biopsy, which is a painful procedure that I certainly don't look forward to at all.

Friday, 4/29/16
So, I was NPO (nothing by mouth) from midnight last night, in preparation for the bone biopsy come morning
Half expected to be taken by 9am for the biopsy.  Breakfast time came and went without me partaking.  Then, lunch came and went.
By around 2pm I learned that the interventional radiology department was backed up with a couple of emergency cases, but that I could expect to get my biopsy by 3.  Moments later it was decided that because my blood pressure had been running high, the procedure would be cancelled, perhaps until Sunday.  Maimo is a Jewish institution, so nothing is done on Saturdays, but Sundays are an option.
I would be getting either a rib or spinal biopsy, both painful procedures, each with its own risks.  The rib biopsy risk is mainly pneum-thorax, which would result in a chest tube being placed.  A spinal biopsy is a bit more ominous in terms of risk, as paralysis can result.  Seems they will opt for the rib...let's hope so.

Saw my friends Amelia and Jeff last night.  That was a real good visit.  Besides love and good conversation, they brought me a lovely miniature white orchid plant, and a pendant of a Hindu goddess, who is a slayer of obstacles, to aide in my healing.
My sister came again today.  She is running around much too much, though, and I think it's time she stayed home and got some rest.
Also, Alice, my therapist from the mental health center, came by to visit , bringing good tidings from many folks there.
I haven't seen Evie, but I know she is right in my corner, praying for me, and she is taking care of my cat, Morrison, at home.  I miss hanging out with her.
Saw my medical oncologist, Dr Burdette-Radoux, who assures me there are good treatments to be had for what I am going through. 
Sounds like I will be able to be treated with oral medications, and not necessarily more chemo/radiation.  That's really good to hear. 
Everything will be more definitive after getting the bone biopsy.

I miss my computer, and could use a nice warm shower, but I am mostly comfortable here.  Wishing desperately for a cigarette, and will no doubt partake once I am discharged.  A good fat joint will be in order, as well.

So, I've got another 3 days here, at least, and maybe even more, depending how the biopsy goes.  My breathing status is much improved, and getting better every day

4am Saturday morning
Having a hard time sleeping through the night, despite a mix of morphine and Xanax around midnight.  Really want a cigarette.

Saturday night
I won't be getting the biopsy done until Monday, because the pathologist needs to be aournd.  Hopefully this doesn't extend the stay any, and I can go home by Tuesday.  

Evie wants me to stay with her when I am discharged, and that sounds good to me.  She's coming to see me tomorrow, which is great.  She'll be bringing my Surface Pro2 with her, so I'll finally be able to go online after so long away.

Well, as you can see, I am online again.  So good to see Evie, and she spent a few hours here.

I know this was a ridiculous amount to read, not sure many of you made it through, but as always, I like to keep an account of what is going on in my life.

I think I am doing fairly well on an emotional/mental and spiritual level, and will continue to try to do so.

Thank you all for your prayers and good thoughts. 


  1. Prayers are being said for you. I feel attitude is half the battle. Keep your chin up. G-d doesn't give us more than we can handle.

  2. Thank you for sharing your journey. I read every word, shed tears and sent you positive healing energy!! Your spirit is beautiful and strong. Much love and prayers!

  3. AnonymousMay 01, 2016

    Really sorry that you have to go through this. - Treeman

  4. AnonymousMay 01, 2016

    Also read it all, thoughts and prayers are with
    You and wish you the best

  5. AnonymousMay 01, 2016

    Hi Barbara This is Lynne. I am so glad I went on facebook today to read your story. My prayers are definitely with you!! I am looking forward to meeting you one day. I am glad you will be staying with my dear friend Evie. She helps healing :) Keep in touch Barbara. God Bless!

  6. I really feel for you and hope and pray you can keep your spirits up and feel good and hopeful that everything will turn out well.

  7. we've been friends and shared quite a lot over the last 7 years, if memory serves me correctly, Barb. You know we exist in other planes as we speak of even in this one. My words here may not be what others consider helpful or encouraging in the ways most choose to support but you have a strong comprehension of all I have lived for much of it you have been, see, and done as well. At this point there isn't much to say other than to tell you how much I love just knowing other pieces of myself see in similar ways as I. You and I are one and the same thing and in this are also part of every other thing in the infinite equations whether we see them or not. Our journeys thru what we call a multi-verse may well be the product of which infinite substance is born of. You have honored many ancestors in your time of 'substance' and if that time is nearing its closure then I will say this to you my lady friend,"you've lived a rich life in more ways than many and I would know your 'being' again because of its heartshine...there will be singing whichever way you are meant to live.....niw hk m kanak Barbara.

  8. Something is so wrong with our health care system when insurance won't pay for an inhaler but will pay for a hospital stay for breathing treatments. But I suppose in your case it was a good thing you went to the hospital.

    Fingers crossed and prayers ascending for you.


  9. i appreciate all you have shared. you are courageous and insightful and of course, you are a fine writer and storyteller. count on my blessings and prayers. it sounds like your doctor has hope and i hope these procedures and prods are soon done. so glad you will be staying with a special friend. it's good to know you have a tribe, barbara.



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