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Thread: Once again the time has come

  1. #11
    Super Moderator Top User Baz10's Avatar
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    May 2011
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    Arthur mate,
    This will be one of my last posts for a while as we are off early morning.
    As usual before we set off I find it difficult to sleep, excitement I guess, always the same.
    I fully agree reminiscing is a great thing and as our kids both started early Emma at 3 1/2 and Simon at 7 we have put several hundred miles ,or many more together on our planks.
    Simon is without doubt the best skier by a country mile and gives the locals a run for their money.
    Emma is more than capable of skiing anything, now of course the grandkids are up and coming,
    Jamie (Simons) at 10 skies blacks and is dare I say overconfident but extremely well taught and parallels everything.
    Jake surprised us all even being autistic took to skiing like a duck to water and expresses his abilities in his own way and
    loves jumping bumps, he's another nutter of our family, has the occasional tantrum which we ignore and leave him, 100 metres and he then shrugs off his hissy fit and catches us up.
    Sophia is supremely confident and snowploughs anything and everything, having tried we can't get her to parallel for love nor money.
    Anne, well this is another story, she completely blew her confidence a few years back freezing on a 28 degree slope which went straight for about 300 metres, she could do it apart from fear took hold and it took Simon 2 1/2 hours to bring her down, she has never recovered and skis the greens or nursery slopes with me in a afternoon.
    So she elects to stay at the bottom or ride the telecabine to the top, have a coffee or hot chocolate, gas with the cafe owners and ride the telecabine back down.
    All in all, we have few bust ups, we all do our own thing but collectively and the kids in an afternoon are up on the chairlift on their own, and ski the blue and green runs back to the cabin, knowing full well the Pisteurs on the chair lift stations keep a watchful eye on them as they are well known.

    Meanwhile we sit in or out depending on weather at the iceberg bar.
    enough rambling Baz or you'll bore people to death.
    Ots 12.30 am and hopefully I'll get 5 hours before we need to wake, although I doubt I'll sleep.
    Bazzer
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  2. #12
    Administrator Top User lisa1962's Avatar
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    Jan 2013
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    3,909
    Baz

    Have a wonderful time and be sure to make it back without breaking anything! I for one do prefer sunshine and warm water. Go figure, I live in the Adirondack Mountains!

    Currently, hubby and I are obtaining our scuba diving certification and have our final, open water dive, planned for this April....

    All the best,

    Lisa

  3. #13
    Moderator Top User
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    Mar 2010
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    1,299
    Hi Baz, a little late to the thread and you will be there now, so hope the is lots of new snow and the soft snow is forgiving to the knees and back, enjoy.

    john
    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.

  4. #14
    Moderator Top User Fourlegsgood's Avatar
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    Aug 2011
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    976
    At the risk of hi jacking Barry's thread, you mentioned scuba diving. What a wonderful sport and so much fun. Alas my equipment was all sold when I discovered horse riding and that took over as my full time hobby. I still occassionally look through my dive log. Great times and good people. And of course one of the few past times or sports where we have to put our lives in other peoples hands and trust them to rescue us if all goes wrong (which it did for me once when I got badly narked). Eventually I was a Dive Master and looking after others to return the favour.

    Nick

    Quote Originally Posted by lisa1962 View Post
    Baz

    Have a wonderful time and be sure to make it back without breaking anything! I for one do prefer sunshine and warm water. Go figure, I live in the Adirondack Mountains!

    Currently, hubby and I are obtaining our scuba diving certification and have our final, open water dive, planned for this April....

    All the best,

    Lisa
    Age 1/2 way to 120 plus 1. Symptom of blood in stools May 2011. Colonoscopy June 2011 confirmed rectal cancer. CT scan June 2011 showed no spread to other organs. Anterior resection July 2011 plus 50% bowel removed due to thickening observed during operation. Biopsy confirmed stage 2 in rectum only. Completed 8 cycles of precautionary capecitabine (4600mg Xeloda). Returned to horse riding 6 weeks post op, jumping 2weeks later and first competition 2 weeks after that. July 2012 - CT scan clear. June 2014 - CT scan clear. December 2014 - Colonoscopy clear. July 2017 - 6 year CT scan clear.

  5. #15
    Super Moderator Top User Baz10's Avatar
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    May 2011
    Posts
    5,410
    We are back as of late yesterday after 2 weeks thankfully all in one piece with no injuries, nearly but not quite.
    We hoped for 3 to 4 weeks, but alas the warm weather and lack of snow put paid to those plans.
    up top it was either boiler plate ice early morning or slushy in the afternoon and down the mountain was quite bare with lots of brown bare patches.

    So we all drove over to Peissey Vallandrey and hopped into the Les Arc area a few times with the top station at 3,200 metres gave plenty of good skiing.
    all in all managed over 420 kms of skiing which surprised me as I thought my back and legs would give out but thankfully apart from being a bit sore they held up.
    One major prang when we were inside the taped off barrier in the queue for the chair a dick head totally out of control came through the tape, seeing what was going to happen Simon and I literally threw the kids inside us and waited for the impact.
    I unfortunately took the brunt of the impact on my right side whist Simon ended up with a lacerated right calf just above his boot.
    Im still sore but heck we were lucky and none of our kids hurt.

    I am assuming the surgeon is still working on the guy to remove the 125cm Leki pole that Simon rectally inserted. Lol.
    All in all a great 2 weeks and if there is spring snow, we shall return.
    Today will start catching up on forum activities so stay tuned.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  6. #16
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,251
    I've heard that snowboarding is even more lethal than skiing, but hard to see that from this tale.
    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.

  7. #17
    Moderator Top User Doug K's Avatar
    Join Date
    Dec 2014
    Posts
    583
    Quote Originally Posted by Baz10 View Post
    We are back as of late yesterday after 2 weeks thankfully all in one piece with no injuries, nearly but not quite.
    We hoped for 3 to 4 weeks, but alas the warm weather and lack of snow put paid to those plans.
    up top it was either boiler plate ice early morning or slushy in the afternoon and down the mountain was quite bare with lots of brown bare patches.

    So we all drove over to Peissey Vallandrey and hopped into the Les Arc area a few times with the top station at 3,200 metres gave plenty of good skiing.
    all in all managed over 420 kms of skiing which surprised me as I thought my back and legs would give out but thankfully apart from being a bit sore they held up.
    One major prang when we were inside the taped off barrier in the queue for the chair a dick head totally out of control came through the tape, seeing what was going to happen Simon and I literally threw the kids inside us and waited for the impact.
    I unfortunately took the brunt of the impact on my right side whist Simon ended up with a lacerated right calf just above his boot.
    Im still sore but heck we were lucky and none of our kids hurt.

    I am assuming the surgeon is still working on the guy to remove the 125cm Leki pole that Simon rectally inserted. Lol.
    All in all a great 2 weeks and if there is spring snow, we shall return.
    Today will start catching up on forum activities so stay tuned.
    Barry
    Baz,

    You are truly an inspiration! Thanks so much for all the sharing! I have read your accounts for two years and much appreciated them. Way to go!

    doug
    MyJourney:
    August 2004 Colonoscopy Clear
    June-July 2013 Abdominal Discomfort Upper Abdomen X-ray, UltraSound, CTScan all clear
    8.23.13 Diagnosed 5cm tumor on rectum wall: adenocarcinoma @age 66
    Aug-Sept2013 Met with Surgeon,Hematologist and Radiation oncologist
    Oct.-Nov.: Xeloda concurrent with radiation: 25 doses
    November CTScan, MRI and surgeon scoped: Tumor gone, scar tissue
    1.6.14 Surgery LAR: Rectum removed, sphincter remains: Pathology: no lymph node,
    Tumor downgraded from Possible T3 to T2
    Feb. - April Chemo:5 FU and Oxilaplatin:6 infusions over 14 weeks
    9.4.14 ColonoscopyClear,CT Clear
    Dec.14 Follow up BlWk +,CEA .9
    Mar.15Follow up BlWk +,CEA .6
    June.15 Follow up BlWk +,CEA .7
    Sept2015Followup BlWk + CEA .7 CTScanClear NED
    Dec2015SurgicalHerniaRepair
    Sept2016Followup BlWk + CEA .7 CTScanClear NED
    Sept-Oct2017Followup All clear NED
    Sept-Oct2018CTScan+Clear Bldwk+
    Mar2019Bldwk+NED
    Continue ColoRectal Support Group monthly

  8. #18
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
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    5,410
    Doug,
    Its not inspirational, just something I have loved to do since I was in my twenties and still do in my early 70's, this is what has kept me going during some rough times as well as the total and unconditional love and support of my family.
    I have to say, my wife Anne even though she doesn't ski up top with us as she completely lost her nerve in 2009, is always totally supportive and acts as downhill nanny to the youngest as we others hit the higher slopes.

    The one thing I can no longer do is tackle the black runs as if I fell, one loses core and upper body strength which makes it difficult to recover a situation as well as get back on the planks after a fall.
    Having said this I did manage 4 blacks that I knew well and a couple of mogul fields, gotta say with some trepidation but I had our Simon and Emma riding shotgun.
    Well kitted out, I have for the last 10 years always ski'id helmeted with a Lowe Alpine backpack which has built in skeletal back protection system.
    That piece of kit Keeps the lumbar area warm which helps as well.

    I shall keep going as long as I am able
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #19
    What an inspiration you are,Baz. My husband is like you but I am not. I am a graphite artist and have not really drawn since we found out about Al. I love to draw but just got so depressed and anxious,I couldn't. My pictures were not what I am capable of doing. But reading the inspirational stories here is igniting the fire again. I DID try to draw last night and it was pitiful. lol But I tried. And I will continue to try.
    But, if you can ski I can draw. I'm glad you had fun. Do you plan on going again? My husband did give up scorekeeping because he had to walk up 4 flights of stairs every night and he found it hard. But as soon as he could, he was back to his favorite activity......work. He and my son are working on a project of fixing up an old truck. He's gone on, like you.
    Your wife sounds wonderful and so supportive. How strong you all are!
    His fight is over. How brave he was. 47 years of love.

  10. #20
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,410
    Marian,
    Thanks for the kind words, skiing is something that's in my DNA.
    Anne was a keen artist having been to art college, but unfortunately like yourself she lost the interest in art and design, many , many years ago and despite all my attempts to persuade her over the years she hasn't any interest in taking it up.
    Her grandfather was a superb water colour artist and we have several treasured pictures of his adorning our walls, both landscape and seascape.

    Whilst we were at our place in resort was Disability Skiing UK, a fantastic charity that brings both physically and mentally affected kids from the UK.
    Those with severe physical disabilities are taken down on ski chairs whilst those that are able use skis where the tips are locked together by swivels and they are tethered to the instructor by long rains.
    There were at least 15 in our resort and many more thoughout the Alps and Austria.
    Seeing these children and teenagers not only enjoying but in absolute delight whooping, screaming, hollering and laughing was pure magic.

    That for me puts into perspective, what on earth have I got to moan about, nothing.
    The instructors accompany them, together with nurses and a doctor who do it all for free.
    As one of the instructors said to me, "it's a laugh every day" and seeing the kids enjoying it so much I have no doubt his words were absolutely true.

    As for going again, most definately yes if there is good spring snow and next year depends on what 2016 holds in store, but given an even chance most definately we shall be going, even if I can't ski, I am in the mountains that fortunately as a family we all love.
    As a rider When we are at our place I feel both physically and mentally much better, my neuropathic pain is much less and less need for pain meds in fact I hardly needed any except for the night when the dipstick took Simon and I out.
    Our great and long standing doctor friend Giles Page said the night it happened, take 2 Tramadol and a couple of glasses of red wine and you won't feel a thing till the morning.
    He was right.
    So take heart, pick up the graphite sticks or pencils, mount the paper and let your mind be freely expressed as they say, what's good for the mind is good for body and soul.
    Barry
    Last edited by Baz10; 02-02-2016 at 11:25 PM. Reason: Correction
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

 

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