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Overdue Update From “RJoeyB”
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Overdue Update From “RJoeyB”

› Forums › General Melanoma Community › Overdue Update From “RJoeyB”

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    • April 27, 2015 at 7:58 pm
    RJoeyB
    Participant

      Hi all,

      This is Joe, a.k.a. "RJoeyB", checking in after a long absence from the site, with a long overdue update on an overly eventful several months, most of which were spent in four different hospitals, nearly dying twice from two different rare complications of complications of treatment. I posted this over on the MIF forums and Brian P. had the good suggestion for me to repost over here on MPIP. I had heard from Catherine at MIF (thank you!) several weeks ago and Frank ("buffcody") a little further back and promised I'd write a more detailed update when I had some more energy about what's happened with me since just after Thanksgiving. Settle in for a long post, even by my standards. 
       
      As you may recall, I had been dealing with a complication called radiation necrosis (or "RN") from the CyberKnife radiation treatment from the brain metastasis and first craniotomy I had a couple of years ago. The RN first manifested itself as a problem with my gait in my left foot last spring and progressively worsened through the summer and fall. Standard protocol is to treat the primary side-effect, cerebral edema or brain swelling, with steroids, typically Decadron (dexamethasone) and eventually the RN often resolves on its own. While it is difficult to tell RN apart from new melanoma itself with scans, mine followed the pattern of RN more closely according to all of my doctors. Through the time I was dealing with the RN, my left arm and hand also started to weaken from the neurological effects and I struggled with the severe side-effects of the steroids, especially fatigue, high blood sugar, and weight gain, but was able to manage through, although eventually required the use of a cane.
       
      Unfortunately at Thanksgiving, I had a night where I had terrible pain and couldn't move my left leg or stand at all, so was taken by ambulance and admitted to my cancer hospital. After a few days, I improved some, but my doctors told us that the RN wasn't improving and the effects of the steroids were taking too severe of a toll on my body, so we jointly made the decision to have another brain surgery to remove the RN, which, by that time, had grown beyond the size of the original tumor. I was transferred to the parent hospital of the health system where my cancer center does its neurosurgeries and had surgery a few days later. Repeat craniotomies to the same area always carry additional risks — my neurosurgeon describes the first surgery as "doing snow angels on fresh powder," and the second, after the scar tissue from prior surgery and radiation as "snow angels on a plowed gravel parking lot." Also with RN, there's always a risk that they may find some new malignant cells too, but the surgery itself went well — they followed the same scalp and cranial incisions as the first time — and no melanoma cells were found in the pathology.
       
      Although the surgery and immediate outcome went well, I soon developed a blood clot — a deep vein thrombosis ("DVT") in my calf that quickly moved to my lung as a pulmonary embolism ("PE") which can often result in sudden death. DVTs are about four times more common in cancer patients and in my case may have been a complication of the lack of mobility in my left leg. Normally they would treat clots with blood thinners, but since I'd just had the craniotomy, the risk for a brain bleed was too high, so an inferior vena cava ("IVC") filter was placed in the vein leading from my lower body to my heart to prevent further leg clots from moving up (I haven't had further clots, but need to be aware of the symptoms) and I was kept under close observation in the ICU until they were comfortable starting me on blood thinners several days later. The clots soon resolved and I moved to a highly-regarded rehabilitation hospital for physical and occupational therapy for my left side.
       
      With intense inpatient therapy (3 hours a day), I made quick progress in rehab and was soon back to moving well with the assistance of the cane and had a discharge date before Christmas. But a few days before discharge I again experienced excruciating pain in both my left leg and abdomen. I was transported to the closest emergency room where they determined I was experiencing a "retroperitoneal hemorrhage", or bleeding into the back of my abdomen near my spine.
       
      I was moved to the trauma center unit, one of the few in suburban Philadelphia (they were amazing), but despite attempts to find the source of the bleeding and stop it, my kidneys and lungs eventually began to shut down, so I was put on a ventilator and dialysis. I was in critical condition and we were told it was a dire situation and that we should have family start making their way to Philadelphia. In the minutes before I was intubated I had the most difficult conversations with my wife and daughters (17 and 21), ones I never expected to need to have at my age (44).
       
      The source of the bleed was never found — it typically isn't — but the thinking is that spending time on heavy doses of powerful blood thinners made me more prone to bleeding, combined with the continued physical straining to walk and stand. I received 19 total units of blood transfusions to replace what I lost. After two rounds of dialysis, my kidneys began to recover and after four days on the ventilator, I was weaned off and again able to breathe on my own. The ventilator tube was removed and I was taken off of the heavy sedation on Christmas Day. My doctors told me they hadn't seen someone start talking so much or so clearly so soon after having a ventilator tube removed — I guess not unlike my writing ;-). 
       
      Around New Year's, I was back to the rehabilitation hospital for more inpatient PT (for my leg and walking) and OT (for my hand and arm). The abdominal bleed left large hematomas pressing on the nerves between my spine and left leg — coincidence that it also affected my left leg as was the RN — leaving me with little to no movement in my leg. The largest of the hematomas was slightly smaller in shape and size as a standard ream of paper (10x7x3 inches) and is still being resorbed by my body — and still pushing on the large femoral nerve into my leg and pushing one of my kidneys out of position, although it still is working fine. My left arm and hand also worsened following the brain surgery and lack of use during the time I was hospitalized for the bleed, so I have limited use of my arm and fingers. My left foot also has a condition called "foot drop" that is actually a neurological result of the RN. I require a brace to control the foot drop and an additional effect called "clonus" that causes uncontrollable shaking when the foot is in certain positions. The brain incorrectly signals my calf to activate, causing the foot to droop and slightly invert, causing pain and the intermittent clonus. I made improvements over six weeks in inpatient rehab, going from not being able to sit at the edge of the bed without assistance and requiring 2 or 3 nurses and aides to get me from the bed to the wheelchair to being able to walk several laps on the floor with a cane, leg brace, and help of a therapist moving my left leg.
       
      All in all, and what's most frustrating, is that the last year has not been new melanoma itself, but two different complications (the DVT/PE and hemorrhage) of a rare complication (RN) of a radiation treatment (CyberKnife) from the last new melanoma tumor I had over two years ago, the brain metastasis — my most recent full-body PET scan a few weeks ago again showed no new melanoma, although there is an area in my left shin that received prior radiation (three years ago) and surgery (last May) that lit brighter but should be treatable if needed (it could still just be post-surgical inflammation); my last brain MRI last week again was clean for any new melanoma and the surgical site looks very good for continued healing — my last one in January was clean except for remaining inflammation and edema that would be expected to show up post-craniotomy. The edema is now gone. My cancer doctors are actually quite pleased with my continued progress against melanoma itself. Through 14 tumors, 2 clinical trials, 8 surgeries (including 2 craniotomies), 6 rounds of radiation, 3 immunotherapies, and 2 rounds of chemotherapy (part of the TIL immunotherapy), this last set of complications ended up being the worst part of my nearly 5 year battle with melanoma. 
       
      I now have "left hemiparesis" or partial paralysis of my left side. I've been home from inpatient rehab for a couple of months and, for now, I continue to use a wheelchair and we've had to make a number of modifications to our home — a stairlift, outdoor wheelchair ramps, a hospital bed in our dining room temporarily replacing our table, new "comfort height" commodes and safety rails in the bathrooms — along with a completely new living routine. I have had in-home PT and OT 2-3 times per week since getting home and am seeing some small improvements, being able to take a few steps with the cane and brace, and on carpet (which is more difficult than hard surfaces in the hospital), but not requiring the therapist to move my leg for me. This past Monday, I finally started outpatient PT and OT a few times per week back at the rehab hospital. There's only so much improvement I could make in the limited space of our home, with little equipment here vs. the outpatient gym, so we hope being in outpatient will bring further improvements. For now, our daily schedule and routine is very different and will be for the foreseeable future. It's a lot of work for my wife and she has been a real trooper at my side the whole way. 
       
      No one can say for sure how much movement, strength, or sensation I'll get back — only time and hard work will tell. Inpatient rehab meant 3 hours of therapy every day, and although being home has been good, it slows the pace of improvements. It's been encouraging to see some new strength and movement in recent home sessions — I hope outpatient rehab will quicken the pace some, even though it's limited to 5-6 hours per week (vs. 15 as an inpatient). I've unfortunately had continued pain, sometimes excruciating, and fatigue since getting home, but am also seeing some small improvements. I had trouble sleeping for a while (an hour or two per night), too, but that is also improving some. Since I can't make the small adjustments and movements in position when sitting down or laying in bed that we all make, day and night, and take for granted, my left leg muscles tighten and hurt frequently. My wife needs to help me reposition my leg every few hours, day and night. It is slowly getting better, very slowly. It takes its toll on her rest as well.
       
      There is a pain management and muscle spasticity specialist who we also now see at my cancer hospital — through most of my melanoma journey, I haven't had to deal with much pain until now. The steroids and other complications caused issues with my blood sugar, blood pressure, and blood oxygen levels, but we're working with my various doctors and the complications are mostly all now well managed and we're in the process of slowly weaning me from the countless medications and O2 machine. I've been sleeping upstairs again so hope to get rid of the hospital bed soon. It's all a slow process, but we're seeing progress. 
       
      Since I was on Decadron for nearly eight months, my adrenal glands are no longer producing cortisol. I'm tapered off of the Decadron and now taking hydrocortisone (a biologically equivalent dose to the amount of cortisol produced by the adrenals). We're now starting to taper the hydrocortisone in an attempt to restart the adrenals to produce cortisol, but the taper process could take months. A week in, after dropping the dose by only about 15%, I've noticed a great increase in fatigue, even with the already significant amount of fatigue I already feel. 
       
      In the five months before the initial gait symptoms of the RN, I managed to lose 45 pounds and was hoping to run in this year's MIF SFTS 5K. After prolonged Decadron use and the heavy fluid retention in the hospital, I then gained 55 pounds, but have since lost them over the past couple of months. But there won't be any running in my near future, if at all. Again, there is no way to determine yet how much of the brain and nerve damage is permanent. Hopefully the expected and renewed weight loss will help with blood pressure, blood sugar, and need for O2. 
       
      The IVC filter may or may not come out. Typically they like to remove them after 3-4 months in a "younger" person (I don't feel that young) before they become permanently embedded in the vein, but with my history and current lack of leg mobility they could choose to leave it in; we'll decide with my doctors soon, but I won't be surprised either way. 
       
      I've had a fall since I've been home, a few weeks ago. Middle of the night, I had to use the bathroom and as we were getting me back into bed, I made a misstep and went down, bumping my head on the side of my nightstand. We had to call 911 to help get me back up and also have paramedics check me. I didn't need to go to the ER because I wasn't having concussion symptoms, so my ego was more bruised than my head. Another reminder of vulnerability, though. I also had a near fall in the shower when my knee buckled as I stood to get up from the shower bench, but between my wife's strength and my own right leg, we managed to keep me from going down, but not without another bruise. 
       
      I guess that brings you mostly up to date. I really appreciate everyone who's followed along and those of you who checked in with me — or tried to. There were times when I obviously couldn't respond and despite extended time recovering in the hospital and now at home, therapy and recovery has been exhausting. But again, please know your kind words, concern, and encouragement were all appreciated. I hope to be able to participate here more again moving forward. My family and I are very much looking forward to attending the MIF SFTS event this weekend, only a few miles from our home! Hope to see some of you there. 
       
      All my best,
      Joe
       
       
    Viewing 17 reply threads
    • Replies
        • April 27, 2015 at 9:08 pm
        tschmith
        Participant

          Joe, 

               You're amazing!  You've been through so so much!  Thank you for updating us and thank God that you are successfully fighting Melanoma in spite of all the complications you've faced.

                Sending prayers and best wishes to you and your family.

                You are so strong!!!!

                Terrie

          • April 27, 2015 at 9:08 pm
          tschmith
          Participant

            Joe, 

                 You're amazing!  You've been through so so much!  Thank you for updating us and thank God that you are successfully fighting Melanoma in spite of all the complications you've faced.

                  Sending prayers and best wishes to you and your family.

                  You are so strong!!!!

                  Terrie

            • April 27, 2015 at 9:08 pm
            tschmith
            Participant

              Joe, 

                   You're amazing!  You've been through so so much!  Thank you for updating us and thank God that you are successfully fighting Melanoma in spite of all the complications you've faced.

                    Sending prayers and best wishes to you and your family.

                    You are so strong!!!!

                    Terrie

              • April 28, 2015 at 3:26 am
              _Paul_
              Participant

                Thank you very much for taking the time to type in that opus Joe! What an epic struggle and very humbling to read. It really puts my troubles in perspective (mine has been a cake walk compared to this). 

                I am not going to forget this either on those days when I have uncertainty looming on the horizon. I salute your bravery sir.

                Paul

                  • April 28, 2015 at 10:36 am
                  Maureen038
                  Participant

                    Joey,

                       I'm so glad you updated us on all of your struggles. Yet, you amaze me with your inner strength, determination and courageous honesty of all obstacles. I have missed your responses on the board because of all of your excellent advice and I've been wondering what happened to you. I'm sending you and your family many prayers and much hope that spring will bring progress and stability. Please stay in touch with the board!

                    Maureen

                    • April 28, 2015 at 10:36 am
                    Maureen038
                    Participant

                      Joey,

                         I'm so glad you updated us on all of your struggles. Yet, you amaze me with your inner strength, determination and courageous honesty of all obstacles. I have missed your responses on the board because of all of your excellent advice and I've been wondering what happened to you. I'm sending you and your family many prayers and much hope that spring will bring progress and stability. Please stay in touch with the board!

                      Maureen

                      • April 28, 2015 at 10:36 am
                      Maureen038
                      Participant

                        Joey,

                           I'm so glad you updated us on all of your struggles. Yet, you amaze me with your inner strength, determination and courageous honesty of all obstacles. I have missed your responses on the board because of all of your excellent advice and I've been wondering what happened to you. I'm sending you and your family many prayers and much hope that spring will bring progress and stability. Please stay in touch with the board!

                        Maureen

                      • April 28, 2015 at 3:26 am
                      _Paul_
                      Participant

                        Thank you very much for taking the time to type in that opus Joe! What an epic struggle and very humbling to read. It really puts my troubles in perspective (mine has been a cake walk compared to this). 

                        I am not going to forget this either on those days when I have uncertainty looming on the horizon. I salute your bravery sir.

                        Paul

                        • April 28, 2015 at 3:26 am
                        _Paul_
                        Participant

                          Thank you very much for taking the time to type in that opus Joe! What an epic struggle and very humbling to read. It really puts my troubles in perspective (mine has been a cake walk compared to this). 

                          I am not going to forget this either on those days when I have uncertainty looming on the horizon. I salute your bravery sir.

                          Paul

                          • April 28, 2015 at 8:38 pm
                          kpcollins31
                          Participant

                            Joe,

                            All I can say is wow… you have been through the ringer with this. Crazy to see all of this being caused by the treatment as opposed to the disease itself. I pray that the worst is over for you and you see improvement going forward. You definitely have a strong will and fighting spirit – keep it up!

                            Kevin

                             

                            • April 28, 2015 at 8:38 pm
                            kpcollins31
                            Participant

                              Joe,

                              All I can say is wow… you have been through the ringer with this. Crazy to see all of this being caused by the treatment as opposed to the disease itself. I pray that the worst is over for you and you see improvement going forward. You definitely have a strong will and fighting spirit – keep it up!

                              Kevin

                               

                              • April 28, 2015 at 8:38 pm
                              kpcollins31
                              Participant

                                Joe,

                                All I can say is wow… you have been through the ringer with this. Crazy to see all of this being caused by the treatment as opposed to the disease itself. I pray that the worst is over for you and you see improvement going forward. You definitely have a strong will and fighting spirit – keep it up!

                                Kevin

                                 

                                • April 29, 2015 at 12:59 am
                                Gene_S
                                Participant

                                  Joey,

                                  Thanks so much for updating us on your stiuation.  Wow you have been through so much

                                  Your family has been very strong through this and in helping you with your battle.  Keep up the good work and I hope that it does get easier for you.  Talk about a warrior you are surely one.

                                  Continue your battle and I hope one day soon you will be victorious.

                                  Judy (loving wife of Gene Stage IV and now NED)

                                  • April 29, 2015 at 12:59 am
                                  Gene_S
                                  Participant

                                    Joey,

                                    Thanks so much for updating us on your stiuation.  Wow you have been through so much

                                    Your family has been very strong through this and in helping you with your battle.  Keep up the good work and I hope that it does get easier for you.  Talk about a warrior you are surely one.

                                    Continue your battle and I hope one day soon you will be victorious.

                                    Judy (loving wife of Gene Stage IV and now NED)

                                    • April 29, 2015 at 12:59 am
                                    Gene_S
                                    Participant

                                      Joey,

                                      Thanks so much for updating us on your stiuation.  Wow you have been through so much

                                      Your family has been very strong through this and in helping you with your battle.  Keep up the good work and I hope that it does get easier for you.  Talk about a warrior you are surely one.

                                      Continue your battle and I hope one day soon you will be victorious.

                                      Judy (loving wife of Gene Stage IV and now NED)

                                      • April 30, 2015 at 7:04 pm
                                      RJoeyB
                                      Participant

                                        Thanks everyone for the prayers, kind words, and well wishes. It's good to be back on the forum among friends and fellow fighters. At some point, I hope to boil my giant post down to some of my key "lessons learned" about complications I experienced that we should all be aware of — not scared of, but things to know. 

                                        Wishing all of you the best as always;  you should be seeing more of me around here again now. 

                                        Joe

                                        • April 30, 2015 at 7:04 pm
                                        RJoeyB
                                        Participant

                                          Thanks everyone for the prayers, kind words, and well wishes. It's good to be back on the forum among friends and fellow fighters. At some point, I hope to boil my giant post down to some of my key "lessons learned" about complications I experienced that we should all be aware of — not scared of, but things to know. 

                                          Wishing all of you the best as always;  you should be seeing more of me around here again now. 

                                          Joe

                                          • April 30, 2015 at 7:04 pm
                                          RJoeyB
                                          Participant

                                            Thanks everyone for the prayers, kind words, and well wishes. It's good to be back on the forum among friends and fellow fighters. At some point, I hope to boil my giant post down to some of my key "lessons learned" about complications I experienced that we should all be aware of — not scared of, but things to know. 

                                            Wishing all of you the best as always;  you should be seeing more of me around here again now. 

                                            Joe

                                            • April 30, 2015 at 9:35 pm
                                            DZnDef
                                            Participant

                                              Very glad to read an update from you but so sorry for all the trouble and pain you've gone through.  I am so glad your melanoma appears to be in check and let's keep it that way!  Best of luck to you on your continued recovery from quite an eventful year!

                                              Best,

                                              Maggie

                                              • April 30, 2015 at 9:35 pm
                                              DZnDef
                                              Participant

                                                Very glad to read an update from you but so sorry for all the trouble and pain you've gone through.  I am so glad your melanoma appears to be in check and let's keep it that way!  Best of luck to you on your continued recovery from quite an eventful year!

                                                Best,

                                                Maggie

                                                • April 30, 2015 at 9:35 pm
                                                DZnDef
                                                Participant

                                                  Very glad to read an update from you but so sorry for all the trouble and pain you've gone through.  I am so glad your melanoma appears to be in check and let's keep it that way!  Best of luck to you on your continued recovery from quite an eventful year!

                                                  Best,

                                                  Maggie

                                              Viewing 17 reply threads
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