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Thread: My one and only publicity piece......

  1. #1

    My one and only publicity piece......



    The week after this picture was taken, I came back to see Denise as usual, and things had changed very dramatically. She was going downhill fast, which was a BIG difference from the previous couple of months. On the positive side, three of her sisters were there, so we got one last therapy session in with all 4 sisters.


    I had a hell of a time with my 1st dog Sasha, and it took me damn near 16 months to get her trained, and towards the end I was thinking about giving up. There was an old guy who was a therapy dog veteran who suggested that I go to Our Lady of Peace Hospice to try working Sasha in an actual hospice setting, and the main reason was that OLP didn't require certification! So off I went, Sasha acclimatized to the hospice quickly, and it became evident that we were a winning team. The rest is pretty much history, but there are some additional facts which should be noted.

    Our Lady of Peace was founded on Dec. 7th, 1941, and it was the ONLY thing that day that was NOT related to Pearl Harbor! In addition, Our Lady of peace is not only a hospice but a convent, and the Sisters of Hawthorne live their little rooms and tend to the patient's care, and their emotional and spiritual needs.

    If that wasn't enough, Our Lady of Peace has NEVER taken one penny of money from the patients or family of the patients from Day 1! It's always been free! The way this works is that OLP has a LOT of well heeled benefactors whose parents may have been patients there themselves, and this hospice is smack dab in the middle of one of the "Old Money" sections of St. Paul, MN.

    Last but not least, there is one other caveat which is VERY pertinent to this Forum, and OLP is ONLY for dying cancer patients!! Don't know how it started that way, but that's the way it is.

    I spent the better part of 7 years in OLP with first Sasha and then Annabelle, and from my current viewpoint, it seems like it was pure unadulterated FATE that I chose a cancer hospice to start my therapy dog career.

    Last May it was a simple pre-op physical which turned up the AML, which then very quickly was changed to refractory AML after the 7/3 protocol failed miserably. At this point the very first thing I did was to call up Our Lady of Peace, and asked if they would take me in if push came to shove, and they agreed.

    The last point, where FATE or predetermination rears its ugly head AGAIN, is when I got Annabelle as a very frightened rescue dog, I took her to OLP with no training whatsoever, and she figured the whole thing out in 3 visits!! The probability of THAT is on the far side of winning three Powerballs in a row, so there's no way ALL of this is just random chance.

    To finish up, Annabelle and I go to the main Ochsner Hospital complex in New Orleans twice a week, and we sweep the whole peds ward, and the peds ICU ward, and then the whole Surgical waiting room (capacity 75+ people), and then the surgical nursing desk and pre-op, and sometimes post-op if there is a request from family or a doctor. On a typical day, we see about 125 people a day over a 3 hour walk, and if you do the math, that's about 1,000 people a month. That's not too shabby as far as I'm concerned. Between both dogs, I am closing in on 900 facility visits, and a total of 80,000 people visited.

    Sasha


    Annabelle
    Last edited by Dead Man Walking; 05-31-2017 at 11:20 PM.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  2. #2
    Super Moderator Top User po18guy's Avatar
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    The hospice is the very definition of "charity", the meaning of which has been lost in our age. Now, your inspiring visits are also highly to be commended. The comfort that you have brought to the afflicted has not gone without notice.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    My oncologist pretty much requires that Annabelle comes with me to the monthly meetings!! There isn't much to talk about otherwise, because my AML is hiding out with Elvis, Jimmy Hoffa, and Salman Rushdie...
    Last edited by Dead Man Walking; 06-02-2017 at 07:45 PM.

 

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