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7 years ago this March.
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7 years ago this March.

› Forums › Caregiver Community › 7 years ago this March.

  • Post
    • March 13, 2015 at 1:17 pm
    jag
    Participant

      After my 4th craniotomy, my neurosurgeon came in to tell my family that he had removed what would be the last melanoma metastases in my brain.  Up to that point, I had had 2 lung surgeries, 1 Video assisted Thorascopy followed by 6 rounds of biochemotherapy, followed by 4 rounds of interleukin 2, followed by a complete left pneumonectomy.  I went on to have SRS radiation (still got the tattoo on my forehead for the laser alignment) followed by a craniotomy when that didn't work, and 4 subsequent cranitomies (2 were double craniotomies) that is when they cut 2 holes in your head.  In between there was focal patch radiation where they create a cast for your face and give you blasts of radiation, I never lost my hair during chemotherapy, the radiation did it, I got married as a fat bald guy to the woman of my dreams (my backbone through all of this and to this day).  

      Anyway, enough about that nightmare, there were good times too, trips to most of the national parks, the islands in New England, my cousin's wedding in Ireland, and even working at nearly every borough except Staten Island in NYC as a relief veterinarian.  It has been quite a journey.

      Two more brain surgeries later (to clean up radiation crud), a year of not being able to drive due to seizures and Dilantin toxicity, I am now back on my feet and maknig up for lost time.  I am finally tapering off of my seizure medication.  

      I was there for the birth of my son Jedd via invitro fertilization.  He is named after my oncologist (and personal hero-who I am sure to this day is as dedicated to his research and cancer patients as he always has been as he has been since he started-Dr. Jedd Wolchok.  Scroll down to the bottom of this article (that was almost 2 years ago on his 

       http://www.fredhutch.org/en/news/quest/2013-12/revolutionizing-solid-tumor-treatment.html€

      My wife  and I started our own mobile veterinary practice (she is a vet too.)  check it out.  I personally designed the sprinter procedure vehicle which has digital radiography, anesthesia for elective dental and surgical procedures.  Check it out:

      http://www.gsvmobile.com

      Anyway, now we are in the process of tearing down our old shack (Meredith and I bought it because she would be able to carry the mortgage on a 600sqft house-if I karked it (as NicOz used to say)) and are installing a n new modular home 3 times it's original size (1800 sqft)  Jedd made me do it as did adopting an early reitrement seeing eye dog last year on my birthday who put us over the edge.  We are renting a house across the street and hope to watch the demolotion and construction of it.  

      Meredith was diagnosed with a primary melanoma (barely stage I) and I realized how difficult in can be to think of a loved one being sick.  She was a champion thoughout my whole treatment and was strong for her's too.

      Needless to say, having cancer definitely got me used to big changes, being busy, and dealing with stress.  On my worst days I can say "At least I don't have my own brain surgery scheduled for today".  

      In the meantime, I'm sorry that I haven't been here to help encourage people and direct them for the best treatments as much as I used to.  The only thing I can say in my defense is that my treatments (other than brain surgery) are virtually non-existent any more and I have been just a little busy .  My treatment strategy was in this order. Say your prayers,  Minimize tumor burden, get throughthe most difficult treatments early on-save the easy ones for when you are really debilitated stay.  Immunotherapy and surgery were the best ones for me.  Stay active and keep moving (I try to get in 10000 steps on my pedometer/day) -say your prayers again, hold hands with your best friend, and look both ways when crossing the street.  

      I'd also like to thank the current melanoma "experts" i.e. patients who are experiencing their own treatments and passing on everyday advice to others.  Another resource I always found useful was google alerts.  I had one set for metastatic melanoma and one for brain tumor treatments.  You can set one up for yourself here-you will find out about the "cutting edge" stuff before your doctor does!

      https://www.google.com/alerts

      Another one when I was scanning for trials is

      http://www.clinical trials.gov.

      I am writing this to offer a bit of encouragement for all of you fully engaged in your own personal cancer battle-know that my prayers are with you and to say that you are welcome to e-mail me if I can offer any support:  I'd also like to say thank you to all of the caregivers as you are the glue that holds a patient together.  Some of them (my wife especially)are like crazy glue, which is fine-it is stronger even if smelling it makes you a bit dizzy.

      I never though life would be going this well for me.  I never thought it would be as bad as it was when I was going through treatment either.  Either way, I still think of god everyday.  I don't know why I have been lucky enough to be writing this right now.  Hope isn't a bad thing.

      e-mail: [email protected]

       

    Viewing 17 reply threads
    • Replies
        • March 13, 2015 at 1:24 pm
        Bubbles
        Participant

          Well lived and well said, Jag! Thanks for sharing. Many more busy days to you! Celeste

          • March 13, 2015 at 1:24 pm
          Bubbles
          Participant

            Well lived and well said, Jag! Thanks for sharing. Many more busy days to you! Celeste

              • March 13, 2015 at 1:25 pm
              jag
              Participant

                Sorry for all of the grammatical errors, I posted that before I reviewed it.

                • March 13, 2015 at 1:25 pm
                jag
                Participant

                  Sorry for all of the grammatical errors, I posted that before I reviewed it.

                  • March 13, 2015 at 1:25 pm
                  jag
                  Participant

                    Sorry for all of the grammatical errors, I posted that before I reviewed it.

                  • March 13, 2015 at 1:24 pm
                  Bubbles
                  Participant

                    Well lived and well said, Jag! Thanks for sharing. Many more busy days to you! Celeste

                    • March 13, 2015 at 1:25 pm
                    Brendan
                    Participant

                      Great to hear from you, JAG.  Having multiple brain mets myself I often think of you as my role model. Go hug your wife and wrestle Jedd.

                      Thanks for posting. 

                      Brendan 

                       

                        • March 14, 2015 at 12:39 pm
                        jag
                        Participant

                          Hang in there brother!

                          I followed your instructions yesterday

                          • March 14, 2015 at 12:39 pm
                          jag
                          Participant

                            Hang in there brother!

                            I followed your instructions yesterday

                            • March 14, 2015 at 12:39 pm
                            jag
                            Participant

                              Hang in there brother!

                              I followed your instructions yesterday

                            • March 13, 2015 at 1:25 pm
                            Brendan
                            Participant

                              Great to hear from you, JAG.  Having multiple brain mets myself I often think of you as my role model. Go hug your wife and wrestle Jedd.

                              Thanks for posting. 

                              Brendan 

                               

                              • March 13, 2015 at 1:25 pm
                              Brendan
                              Participant

                                Great to hear from you, JAG.  Having multiple brain mets myself I often think of you as my role model. Go hug your wife and wrestle Jedd.

                                Thanks for posting. 

                                Brendan 

                                 

                                • March 13, 2015 at 2:44 pm
                                kpcollins31
                                Participant

                                  Great to hear! Sounds like you have clearly been through a lot with this journey – great to hear you coming through with a positive outcome.

                                  Kevin

                                    • March 13, 2015 at 3:08 pm
                                    yazziemac
                                    Participant

                                      Oh, I'm so happy for you!  I've really been needing good news like this lately, as I've been struggling with feeling pessimistic about my Stage 4 husband's future.  Thank you!

                                       

                                      Yasmin

                                      • March 13, 2015 at 3:08 pm
                                      yazziemac
                                      Participant

                                        Oh, I'm so happy for you!  I've really been needing good news like this lately, as I've been struggling with feeling pessimistic about my Stage 4 husband's future.  Thank you!

                                         

                                        Yasmin

                                        • March 13, 2015 at 3:08 pm
                                        yazziemac
                                        Participant

                                          Oh, I'm so happy for you!  I've really been needing good news like this lately, as I've been struggling with feeling pessimistic about my Stage 4 husband's future.  Thank you!

                                           

                                          Yasmin

                                          • March 14, 2015 at 12:48 pm
                                          jag
                                          Participant

                                            Kick him in the a** that's what my wife used to do to me!

                                            • March 14, 2015 at 12:48 pm
                                            jag
                                            Participant

                                              Kick him in the a** that's what my wife used to do to me!

                                              • March 14, 2015 at 12:48 pm
                                              jag
                                              Participant

                                                Kick him in the a** that's what my wife used to do to me!

                                                • March 14, 2015 at 12:47 pm
                                                jag
                                                Participant

                                                  Thanks, I can't believe you just had major abdominal surgery ouch!, If you are currently NED, my next step would be to look for an anti PD1 drug, and or ippi.  They really do seem to work.  Hang in there!

                                                  • March 14, 2015 at 12:47 pm
                                                  jag
                                                  Participant

                                                    Thanks, I can't believe you just had major abdominal surgery ouch!, If you are currently NED, my next step would be to look for an anti PD1 drug, and or ippi.  They really do seem to work.  Hang in there!

                                                    • March 14, 2015 at 12:47 pm
                                                    jag
                                                    Participant

                                                      Thanks, I can't believe you just had major abdominal surgery ouch!, If you are currently NED, my next step would be to look for an anti PD1 drug, and or ippi.  They really do seem to work.  Hang in there!

                                                    • March 13, 2015 at 2:44 pm
                                                    kpcollins31
                                                    Participant

                                                      Great to hear! Sounds like you have clearly been through a lot with this journey – great to hear you coming through with a positive outcome.

                                                      Kevin

                                                      • March 13, 2015 at 2:44 pm
                                                      kpcollins31
                                                      Participant

                                                        Great to hear! Sounds like you have clearly been through a lot with this journey – great to hear you coming through with a positive outcome.

                                                        Kevin

                                                        • March 14, 2015 at 5:47 am
                                                        Kim K
                                                        Participant

                                                          Congrats Jag on everything.  You are one of us old timers by now, been there, done that, got the T-shirt and a few scars.

                                                          I never knew you and your wife were veterinarians.  Again congrats on starting your mobile practice.  I used to do relief work in GA for 9 years before moving back to Hawaii.  I wish I knew you were in NY, I was at Plum Island for 2 weeks last summer.  I did manage to hook up with Carole K though, we had a blast.

                                                          Amazingly I am also still NED after VATS and IL-2 5 years ago.  Just had my second ACL reconstruction 3 days ago.  I told my surgeon, no biggie I have been through worse.  I must say though, the hamstring graft is a magnitude of order less painful than the BTB one.

                                                          Here's to us old timers and hot tub parties with Barth etc.

                                                          Aloha,

                                                          Kim

                                                          • March 14, 2015 at 5:47 am
                                                          Kim K
                                                          Participant

                                                            Congrats Jag on everything.  You are one of us old timers by now, been there, done that, got the T-shirt and a few scars.

                                                            I never knew you and your wife were veterinarians.  Again congrats on starting your mobile practice.  I used to do relief work in GA for 9 years before moving back to Hawaii.  I wish I knew you were in NY, I was at Plum Island for 2 weeks last summer.  I did manage to hook up with Carole K though, we had a blast.

                                                            Amazingly I am also still NED after VATS and IL-2 5 years ago.  Just had my second ACL reconstruction 3 days ago.  I told my surgeon, no biggie I have been through worse.  I must say though, the hamstring graft is a magnitude of order less painful than the BTB one.

                                                            Here's to us old timers and hot tub parties with Barth etc.

                                                            Aloha,

                                                            Kim

                                                            • March 14, 2015 at 5:47 am
                                                            Kim K
                                                            Participant

                                                              Congrats Jag on everything.  You are one of us old timers by now, been there, done that, got the T-shirt and a few scars.

                                                              I never knew you and your wife were veterinarians.  Again congrats on starting your mobile practice.  I used to do relief work in GA for 9 years before moving back to Hawaii.  I wish I knew you were in NY, I was at Plum Island for 2 weeks last summer.  I did manage to hook up with Carole K though, we had a blast.

                                                              Amazingly I am also still NED after VATS and IL-2 5 years ago.  Just had my second ACL reconstruction 3 days ago.  I told my surgeon, no biggie I have been through worse.  I must say though, the hamstring graft is a magnitude of order less painful than the BTB one.

                                                              Here's to us old timers and hot tub parties with Barth etc.

                                                              Aloha,

                                                              Kim

                                                                • March 14, 2015 at 1:13 pm
                                                                jag
                                                                Participant

                                                                  Great to here from you too!  I see your name come up pretty regularly, when I check out this website nice to see you still helping people..  I was very happy when you responded to IL2.  I was going to mention an apology for the things I said and did as a darksider, but it just didn't seem right to bring that back on the main board  I hated when people did that and I don't want it to end up back here again.  Part of how I got sucked in by it was how angry that made me.  People need to focus on getting better

                                                                  I didn't really talk that much about working being a vet after a while, it was my getaway from reality and also held me together.  The crazy thing is I sort of miss the days of resting in a hospital bed during treatments, on some days when I work. and have to deal with the crazies.  Who would think of melanoma treatments as a rest?  I answered a phone call from our first client the day after my last brain surgery, and a business was born!

                                                                  My oncologist Jedd and I get along well.  He actually helped to create the Caninen Melanoma vaccine (I don't know if you ever used it) He probably has saved more animal's lives than I have!   He definitely deserves a namesake.  

                                                                  Did you hurt yourself working for the ACL?  Hopefully it was having fun and not animal wrestling.  Never heard of hamstring graft as a treatment I would assume you would have had a TPLO or TTA surgery performed wink.

                                                                  Let me know next time you are heading out to Plumb Island, I have not yet hooked up w/Carole K.  She will send out a super supportive e-mails occasionally about a patient that just was diagnosed with brain mets.  She helped me too, she really is pretty dedicated.  

                                                                  Well thats all I have to say about that!

                                                                  Stay NED and keep on being a good vet

                                                                  Oh and happy Pi day!

                                                                  3/14/15 9:56.32-think about it.

                                                                  • March 14, 2015 at 1:13 pm
                                                                  jag
                                                                  Participant

                                                                    Great to here from you too!  I see your name come up pretty regularly, when I check out this website nice to see you still helping people..  I was very happy when you responded to IL2.  I was going to mention an apology for the things I said and did as a darksider, but it just didn't seem right to bring that back on the main board  I hated when people did that and I don't want it to end up back here again.  Part of how I got sucked in by it was how angry that made me.  People need to focus on getting better

                                                                    I didn't really talk that much about working being a vet after a while, it was my getaway from reality and also held me together.  The crazy thing is I sort of miss the days of resting in a hospital bed during treatments, on some days when I work. and have to deal with the crazies.  Who would think of melanoma treatments as a rest?  I answered a phone call from our first client the day after my last brain surgery, and a business was born!

                                                                    My oncologist Jedd and I get along well.  He actually helped to create the Caninen Melanoma vaccine (I don't know if you ever used it) He probably has saved more animal's lives than I have!   He definitely deserves a namesake.  

                                                                    Did you hurt yourself working for the ACL?  Hopefully it was having fun and not animal wrestling.  Never heard of hamstring graft as a treatment I would assume you would have had a TPLO or TTA surgery performed wink.

                                                                    Let me know next time you are heading out to Plumb Island, I have not yet hooked up w/Carole K.  She will send out a super supportive e-mails occasionally about a patient that just was diagnosed with brain mets.  She helped me too, she really is pretty dedicated.  

                                                                    Well thats all I have to say about that!

                                                                    Stay NED and keep on being a good vet

                                                                    Oh and happy Pi day!

                                                                    3/14/15 9:56.32-think about it.

                                                                    • March 14, 2015 at 1:13 pm
                                                                    jag
                                                                    Participant

                                                                      Great to here from you too!  I see your name come up pretty regularly, when I check out this website nice to see you still helping people..  I was very happy when you responded to IL2.  I was going to mention an apology for the things I said and did as a darksider, but it just didn't seem right to bring that back on the main board  I hated when people did that and I don't want it to end up back here again.  Part of how I got sucked in by it was how angry that made me.  People need to focus on getting better

                                                                      I didn't really talk that much about working being a vet after a while, it was my getaway from reality and also held me together.  The crazy thing is I sort of miss the days of resting in a hospital bed during treatments, on some days when I work. and have to deal with the crazies.  Who would think of melanoma treatments as a rest?  I answered a phone call from our first client the day after my last brain surgery, and a business was born!

                                                                      My oncologist Jedd and I get along well.  He actually helped to create the Caninen Melanoma vaccine (I don't know if you ever used it) He probably has saved more animal's lives than I have!   He definitely deserves a namesake.  

                                                                      Did you hurt yourself working for the ACL?  Hopefully it was having fun and not animal wrestling.  Never heard of hamstring graft as a treatment I would assume you would have had a TPLO or TTA surgery performed wink.

                                                                      Let me know next time you are heading out to Plumb Island, I have not yet hooked up w/Carole K.  She will send out a super supportive e-mails occasionally about a patient that just was diagnosed with brain mets.  She helped me too, she really is pretty dedicated.  

                                                                      Well thats all I have to say about that!

                                                                      Stay NED and keep on being a good vet

                                                                      Oh and happy Pi day!

                                                                      3/14/15 9:56.32-think about it.

                                                                      • March 14, 2015 at 1:14 pm
                                                                      jag
                                                                      Participant

                                                                        Oh, I was kidding about the ACL surgery by the way.

                                                                        • March 14, 2015 at 1:14 pm
                                                                        jag
                                                                        Participant

                                                                          Oh, I was kidding about the ACL surgery by the way.

                                                                          • March 14, 2015 at 11:31 pm
                                                                          Manfred
                                                                          Participant

                                                                            Jag, nice to hear from you and the weaning off of the anti seizure madication.I am doing well after my second brain surgeries but I still have my lung tumors which seem to be stable.My oncologist at every visit says and I quote " Manfred I do not want to make you sick".This is sometimes hard to take but my wife tells me that I will die of old age and not cancer.So after almost 4 years I think my immune system is strong enough to keep the cancer under control and as long as this is the case no treatment for me according to the onc. Stay healthy,enjoy live and family.

                                                                            Manfred

                                                                            • March 14, 2015 at 11:31 pm
                                                                            Manfred
                                                                            Participant

                                                                              Jag, nice to hear from you and the weaning off of the anti seizure madication.I am doing well after my second brain surgeries but I still have my lung tumors which seem to be stable.My oncologist at every visit says and I quote " Manfred I do not want to make you sick".This is sometimes hard to take but my wife tells me that I will die of old age and not cancer.So after almost 4 years I think my immune system is strong enough to keep the cancer under control and as long as this is the case no treatment for me according to the onc. Stay healthy,enjoy live and family.

                                                                              Manfred

                                                                              • March 18, 2015 at 1:45 am
                                                                              jag
                                                                              Participant

                                                                                Good to hear you are doing well Manfred!  When I first found the MPIP, I read up on the Patnet of a man named Allen Carr.  He was in his 70s and had biochemotherapy + 2 lung surgeries and was still sharp as a tack.  He had no plans to die and is probably still chugging along.  Haven't bothered him in a long time, but definitely was a good mentor for melanoma.  How could I be afraid when a 70yr old walked right through all of the things I was afraid of?

                                                                                • March 18, 2015 at 1:45 am
                                                                                jag
                                                                                Participant

                                                                                  Good to hear you are doing well Manfred!  When I first found the MPIP, I read up on the Patnet of a man named Allen Carr.  He was in his 70s and had biochemotherapy + 2 lung surgeries and was still sharp as a tack.  He had no plans to die and is probably still chugging along.  Haven't bothered him in a long time, but definitely was a good mentor for melanoma.  How could I be afraid when a 70yr old walked right through all of the things I was afraid of?

                                                                                  • March 18, 2015 at 1:45 am
                                                                                  jag
                                                                                  Participant

                                                                                    Good to hear you are doing well Manfred!  When I first found the MPIP, I read up on the Patnet of a man named Allen Carr.  He was in his 70s and had biochemotherapy + 2 lung surgeries and was still sharp as a tack.  He had no plans to die and is probably still chugging along.  Haven't bothered him in a long time, but definitely was a good mentor for melanoma.  How could I be afraid when a 70yr old walked right through all of the things I was afraid of?

                                                                                    • March 14, 2015 at 11:31 pm
                                                                                    Manfred
                                                                                    Participant

                                                                                      Jag, nice to hear from you and the weaning off of the anti seizure madication.I am doing well after my second brain surgeries but I still have my lung tumors which seem to be stable.My oncologist at every visit says and I quote " Manfred I do not want to make you sick".This is sometimes hard to take but my wife tells me that I will die of old age and not cancer.So after almost 4 years I think my immune system is strong enough to keep the cancer under control and as long as this is the case no treatment for me according to the onc. Stay healthy,enjoy live and family.

                                                                                      Manfred

                                                                                      • March 14, 2015 at 1:14 pm
                                                                                      jag
                                                                                      Participant

                                                                                        Oh, I was kidding about the ACL surgery by the way.

                                                                                      • March 15, 2015 at 3:16 am
                                                                                      JoshF
                                                                                      Participant

                                                                                        Always like to see a post from you; especially with great news…inspirational! Thanks for sharing.

                                                                                        • March 15, 2015 at 3:16 am
                                                                                        JoshF
                                                                                        Participant

                                                                                          Always like to see a post from you; especially with great news…inspirational! Thanks for sharing.

                                                                                          • March 15, 2015 at 3:16 am
                                                                                          JoshF
                                                                                          Participant

                                                                                            Always like to see a post from you; especially with great news…inspirational! Thanks for sharing.

                                                                                              • March 18, 2015 at 1:46 am
                                                                                              jag
                                                                                              Participant

                                                                                                No Problem Josh, stay strong and keep searching for inspirations.

                                                                                                John

                                                                                                • March 18, 2015 at 1:46 am
                                                                                                jag
                                                                                                Participant

                                                                                                  No Problem Josh, stay strong and keep searching for inspirations.

                                                                                                  John

                                                                                                  • March 18, 2015 at 1:46 am
                                                                                                  jag
                                                                                                  Participant

                                                                                                    No Problem Josh, stay strong and keep searching for inspirations.

                                                                                                    John

                                                                                                    • March 18, 2015 at 1:48 am
                                                                                                    jag
                                                                                                    Participant

                                                                                                      Sorry hit post too fast, either way, thanks and I wish you well.

                                                                                                      John

                                                                                                      • March 18, 2015 at 1:48 am
                                                                                                      jag
                                                                                                      Participant

                                                                                                        Sorry hit post too fast, either way, thanks and I wish you well.

                                                                                                        John

                                                                                                        • March 18, 2015 at 1:48 am
                                                                                                        jag
                                                                                                        Participant

                                                                                                          Sorry hit post too fast, either way, thanks and I wish you well.

                                                                                                          John

                                                                                                        • June 24, 2015 at 1:33 pm
                                                                                                        Gail G
                                                                                                        Participant

                                                                                                          Wow!  I just dropped by to share this site with a newly diagnosed acquaintance.  Your story is such an inspiration – thanks so much for sharing and sending good vibes and prayers that your triump continues for a long..long…long…etc etc time 🙂

                                                                                                           

                                                                                                          Gail (15 years out NED)

                                                                                                           

                                                                                                          • June 24, 2015 at 1:33 pm
                                                                                                          Gail G
                                                                                                          Participant

                                                                                                            Wow!  I just dropped by to share this site with a newly diagnosed acquaintance.  Your story is such an inspiration – thanks so much for sharing and sending good vibes and prayers that your triump continues for a long..long…long…etc etc time 🙂

                                                                                                             

                                                                                                            Gail (15 years out NED)

                                                                                                             

                                                                                                            • June 24, 2015 at 1:33 pm
                                                                                                            Gail G
                                                                                                            Participant

                                                                                                              Wow!  I just dropped by to share this site with a newly diagnosed acquaintance.  Your story is such an inspiration – thanks so much for sharing and sending good vibes and prayers that your triump continues for a long..long…long…etc etc time 🙂

                                                                                                               

                                                                                                              Gail (15 years out NED)

                                                                                                               

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