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Thread: Needle Phobia

  1. #1
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    Needle Phobia

    My mom has stage 4 pancreatic cancer with mets in both lungs. She is currently living by herself, but I think relatively soon, she'll need constant help with even the most basic functions. I'm an only child and a lot of the caregiving will fall on me. My mom has one sister who can help out, but she's in her late 70s, with her own health issues, so I can't ask too much of her. My mom has cut off most of her contact with friends and fellow church members because she doesn't want them to see her in her current condition. So we're pretty limited in who will be able to help with caregiving. A nurse currently comes out 2x a week and an aide another 2x a week. One thing that I've been dwelling on, is that my mom has to receive blood thinner injections twice a day. She can currently do it herself, but I know it will come to a point where someone will need to do it for her. My problem is that I have a HUGE phobia regarding needles. I can't look at them, cry when I have to get them, and didn't pursue my love of medicine because of my phobia. I really don't know how she's going to be able to get her medication without me stepping up, but I also know myself too well and don't think I'll be able to do it. Do you think I'd be able to hire someone (or more than one person) to come out to just give her the injections? Everything just seems so overwhelming now with trying to stay focused during work, being a mother to my 16 year old, taking care of my mom and knowing that due to the nature of her illness, how rapidly it progresses.

  2. #2
    Administrator Top User lisa1962's Avatar
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    tammymoons:

    So sorry to hear of your Mom's diagnosis. Certainly is a tough one. While there is not much I can offer regarding your Mom's actually diagnosis, I will say the folks over in our Pancreatic Forum are invaluable and come with a wealth of information. Feel free to post on over there and they will respond to any questions you may have.

    As far as Needle Phobia, all I can say if you may be surprised at exactly what you are capable of in the event you are required to help in that capacity. However, I would discuss this with your Mom's doctor or if they have one, a Patient Advocate, to see what options are available.

    Lisa

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of this. First, love does not count the cost. We should strive to enjoy each and every moment with our loved ones. Now, if you ponder needles and why they are used, you see that life flows through them. They are not evil, not punishment, but the most effective way in which life-prolonging medicine is given. I inject myself daily and have taken a different view of needles. Occasionally they pinch, but so does life. You might also consider looking into caregiver classes at the facility where mom is treated, or at a community college, etc. Hoping for the best!
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

 

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