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January 14, 2015 at 10:48 am #22315buffcodyParticipant
Many of us regulars know Joe Stevenson by his forum signature, Joey. He and I were engaged in a series of posts back in November that were very detailed in our description of our melanoma situations and the complexities of dealing with necrosis from radiated brain tumors. Joey has been on the Forum many times past but not for a couple of months since our dialogue. I had been worried about him and was happy to receive a personal email two days ago. I was not happy, though, to see what he has been going through during his silence. He has not been up to posting here but gave me the go ahead to let people know what’s going on.
This will be a very condensed and inadequate version of what he wrote me. In brief, he has been quite ill following a second craniotomy last month. The surgery itself went well, but the complication of a deep vein thromobosis followed, becoming a pulmonary embolism that sent him to the ICU. With the addition of other measures, within a week or so he was able to be sent to a rehabilitation hospital for physical and occupational therapy directed to major problems with his left side and leg that had been present for 6 months and worsened after the surgery, preventing free movement without great pain. Unfortunately, after a week of seeming progress, the pain suddenly reached intolerable proportions; and he had to be taken to emergency in the hospital where he had been operated on.
The diagnosis found internal bleeding into the back of his abdomen, probably made worse by anticoagulants he had been on. For a week or so he was in and out of consciousness and was in significant danger of death. Thankfully, he has experienced enough recovery now to be able to leave ICU and the hospital and return to the rehabilitation hospital. His current pain levels and physical capacities in general have worsened compared to those on his previous stay in this hospital, but there are still more questions than answers about the cause of what occurred and his future path. There has been no recurrence of the melanoma. Most all the rest of what he has been able to share with me is still in the state of “to be determined.” He is very grateful for your thoughts and prayers and continues to appreciate them and will return to communicating himself when he is able.
I hope my summary of Joey’s own communication to me is both accurate and comprehensive enough. Having had a craniotomy myself in November I realize how fortunate I am that my own recovery has been so uncomplicated. Joey’s story reminds me of my surgeon assuring me before the surgery that things should go very well but his quickly following this statement up with the addition of “But it is brain surgery.” We all walk a path that has some degree of darkness. Even without a recurrence of the cancer itself, there are other obstacles we can stumble on. Many of the procedures we choose to have we choose because not choosing to keep walking is really not a choice. Living as a melanoma “survivor” is not for the weak, but we are still very grateful for waking up to life every morning even to face sometimes very difficult days.
FrankJanuary 14, 2015 at 2:35 pm #66085MathewRParticipant
Frank, thanks for the update on Joe. Joe, I’ve been thinking about you and hoping that you were ok. I’m sorry to hear about your present challenges. My thoughts, prayers and best wishes during your recovery.January 14, 2015 at 2:53 pm #66086Catherine PooleKeymaster Frank,
Thank you so much for communicating this information for Joe. I’ve been thinking about him as well. Be sure to let him know we keeping him in our thoughts and prayers and hoping to see him back soon. How are you doing Frank? Sounds like we need an update on you too!January 14, 2015 at 3:35 pm #66087buffcodyParticipant
Thanks for asking about me. I don’t remember what I posted the last time, but my surgery was successful and no late negatives as Joey had. No metastasis found either, which was an unknown until the surgery was finished and a biopsy was taken. There has been a “something” showing up for a year now in the abdominal region and showing some degree of growth, over a centimeter now and apparently located in the pancreas. But whatever it is, is it causing no symptoms, and I have received no treatment. I will have a trunk CT in a couple of weeks, and I think a decision will be made whether or not to start an anti-PD1 at that time. I’ve been experiencing a lot more fatigue than I would like, but the cause is not known, though there are many options for that to choose from. No known metastasis for almost two years now. I like to focus on that. And since I know you are interested, I’ve been swimming about a half mile every other day for almost two weeks now, but I’m a long way off from getting back into any competition.
FrankJanuary 14, 2015 at 6:46 pm #66088Catherine PooleKeymaster
Even if you were not competing, the swimming I am sure is helping your immune system. The PD1 is a good choice for most, highest response rate and relatively few side effects for most folks. I would consider that for the pancreatic “thing’ . Keep in touch, always good to hear from you!
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