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Thread: Husband has passed

  1. #1

    Husband has passed

    It is with a heavy heart that I finish the crappy cancer journey with news of my husbands passing. He was diagnosed with PCNS Lymphoma in 2011. He finished his treatments in remission and had been living with residual side effects from the cancer and treatment. In November he along with the rest of the family had what we thought was the stomach flu except he could not recover. A few days of feeling bad then a couple where we thought he was getting better. In January he went for an ultrasound, Dr thinking it was his gallbladder. It showed absolutely nothing. Continued thinking he had gastritis which can last for months after having the flu until March when he got worse slept for three days, no eating at all and having lost close to 100 lbs. Took to the ER after peeing lots of blood to get a CT which showed spots everywhere. PET scan confirmed it was in the lungs, throat, small intestines, stomach, kidneys, adrenal glands, liver, pancreas. Decided to go home where he peacefully passed three days later on March 28th.

    I have still lurked around here as most of you know that once you have cancer it is hard to forget. I will continue to lurk and wish you all the best in your journey. I hate to think of cancer as a battle as a lot of people say because it indicates a sense of failure if you don't WIN.
    Spouse/Caregiver of 56 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!
    Went early for scanxiety in Aug 2014, all clear!
    Scan Feb 2015, all clear!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Very saddened to hear this. May he now experience eternal rest, free of suffering, and may his loved ones receive consolation in their time of sorrow. If grieving is intense, if suffering seems to continue, it is only because your love for him was great. I know that he will always live on in your heart and mind, but I am convinced that he lives on in spirit.

  3. #3
    Senior User
    Join Date
    Feb 2017
    Gracie, po18guy says it beautifully. I too am very sorry about the death of your husband and pray that you find peace and healing after such a difficult struggle.

    My Dad died at age 41 of colon cancer. Star athlete and former Marine officer, reduced to a barely recognizable shell. There are some scenes in life that stay with a person. You integrate them, and they become part of you.

    I agree with your point about "winning." Most of what the world counts as wins and losses is fleeting and illusory. Imposters, in the words of a famous poem by Kipling.

    Winning means getting up each day and doing your duty, regardless of hardship and heartbreak. It means never giving up on hope and faith. In the end, that's the only kind of winning that matters...and it's still available to you.

    God bless.
    YOB: 1954
    PSA 4.4 -- March 2016
    PSA 5.9 -- January 2017
    Cystoscopy to assess unexplained episode of severe overnight bleeding from urethra in December 2016; results normal; incident unexplained -- February 2017
    PSA 7.7 and PHI 59 -- March 2017
    3T MRI of prostate -- April 2017; prostate found to be enlarged (79cc) with two potentially cancerous lesions, one PIRADS-3 and one PIRADS-4 -- the latter in the anterior apex of organ
    Fusion biopsy -- August 2017; 14 cores taken, with two measured at Gleason 4+3, corresponding to the MRI PIRADS-4 target location
    PSA 7.0 -- November 2017
    RALP at Johns Hopkins, Dr. Allaf (highly recommend) -- February 2018
    Pathology report upgrades G4+3 tumor to 4+5. One additional cancerous nodule found, G3+4; organ-confined; margins clear, SV clear, LN clear
    Continence: One pad for two months, then dry
    ED: Resolved at one month with aid of Cialis
    PSA <0.1 -- May 2018; Aug 2018; Dec 2018; Apr 2019; Aug 2019

  4. #4
    Moderator Top User
    Join Date
    Mar 2010
    Gracie, so sorry to read this, my thoughts and prayers to you and your family, we are still here for you and do continue to lurk and post when you feel you can. Your first hand experience as a carer will help others when they face this disease.
    I hope the happy memories you both made together return sooner rather than later.

    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  5. #5
    I’m so sad to hear this, Gracie. I know it’s very hard and exhausting for everyone. My husband died in hospice Jan. 2 of PTCL Lymphoma after fighting it for three years. I was with him when God called him home. I go to bereavement counseling at the hospice and support groups there.
    POGuy is right....If grieving is intense it is because your love for him was great. Our love for my husband was intense. It was a roller coaster before and after. Taking day by day and getting rest helps a little.
    And Gerard is right too...winning means getting up each day and doing your best. His suffering, and my husband’s, are over.
    The happy memories will help sustain you in your faith and love. God bless all of you.
    His fight is over. How brave he was. 47 years of love.

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    We must allow ourselves to grieve, as it is a human process that is normal and natural. Yes it hurts - the death of a loved one stings. The emptiness and sense of loss can seem overwhelming. And yes, our tendency is to withdraw into ourselves - but that only deepens the pain while wounding our hope. Grieving is a process, a painful coming to grips with loss, but also a coming to grips with ourselves. Yet, being a process, it is one that we progress through. If we get mired down at a certain point, it is time to admit our weakness and rely on others, whether personally or professionally.
    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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