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A second saga for a new challenge

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    A second saga for a new challenge

    Last September I was diagnosed with stage 4 metastatic cancer and after some mishaps and a lot of thought began chemo early in November. Every 3 weeks since the start of chemo I still get the line stuck into my port and what was originally 3 different meds and is now down to one dripped in. One of those meds created more extreme mudslides than I ever thought could be possible. That one was discontinued early. I went through the bald phase and after the second one ran its course and was discontinued by hair began to grow again about 6 weeks later. For the big laugh after years of judgemental medical people telling me I needed to use weight they said I was loosing too much too fast and sent me to the nutrition clinic. While I was still finding a ton of humor in the situation they sent me a ton of ensure.

    After living with 40 years of a damaged spinal cord some of my metastatic bone sites are cervical, thoracic and sacral. Then there a a bunch of other places hit by the mets. My hands now function more poorly than before.

    I put this down here because it is for me more of a life journey than a medical journey.

    #2
    With the decrease in my hand function I finally got tired of dropping everything, including silverware. I went digging into a stash of stuff from years ago in the beginning of my journey and got out the old utensil holders and an assortment of gadgets I had not thought about in years. There was a bag of things in the bottom of a desk drawer and things like u-cuffs were made to be more durable back then than they are now. There was even a set of silverware with the beige band that goes over the hand. It is nice to not drop so much stuff. I spent a long time in the beginning learning how to do things without gadgets but I prefer less frustration these days even if it is taking the old gadgetry.

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      #3
      So sorry you are having to deal with this, especially at this time of the COVID-19 crisis. Your recent chemo puts you at more risk because you are still immunosupressed, as I am sure you know. But it also isolates you from friends and family who can support you during this time. Please reach out to our members and the SCI-Nurses for support, feedback, and just to vent if you need to. We are here for you.

      (KLD)
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        I have been out for tons of appointments from September to May including the every 3 week trip for chemo. I am pretty lucky at chemo being a vet and receiving treatment at the VA. They do all the blood work when I get there and then I usually have lunch then or after the blood work comes back and we are waiting for the pharmacy to send up the meds. At least one trip takes care of everything on chemo days rather than having to visit the lab and then get chemo in different locations. The VA was a virtual ghost town after the covid started. Most of the clinics were closed and halls empty. After reaching the infusion room it was business as usual with full staff and patient load. The stations were already a good 6 ft apart. And with the standard precautions used when accessing ports or starting iv lines not much changed. I had been masking since I started chemo early in November and that didn't change for me. Owl Transportation has been wonderful.

        I came in here to share because I really had not told many people and was starting to want to share my journey for others and my own benefit to see what I had so say over time. I kind of wish I had started this sooner.

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          #5
          You are so tough to be going through this. I appreciate your posts as it reminds me that we can only go a day at a time, dealing with each challenge that comes along. I guess I compare it to my very advanced age as a paralyzed person - each day I try to hold onto the ADL skills that I have trusted for decades. My husband, also paralyzed, and I face each day together and I am so grateful for him. During this pandemic some of the only persons in our home have been from home repair services, and we have not seen family for months. But there is still a kind of joy each day. I actually could visualize your trip to the V.A. as a recreation trip, if that makes any sense to you, and yet it's a struggle you are facing.
          Thank you for your post.

          Comment


            #6
            Thanks for sharing. Keep in touch and carry on in this crazy environment. At least you have a partner to share in sequestration (me too). I can't imagine dealing with my own crap alone, let alone cancer! Good luck.
            69yo male T12 complete since 1995
            NW NJ

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              #7
              One of the ongoing experiences has been working with therapy again to regain strength for transfers and what trunk stability I can manage. I can remember the days when transfers were so much easier. I guess being older now makes a difference as well. Maintaining strength is and ongoing project for many of us I guess I just felt like I was almost starting over to a large degree in some areas.

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                #8
                We are continuing to work on trunk stability. I have found all sorts of new ways to flop over while trying to set up in bed. Like everyone else dome days are better than others.

                Comment


                  #9
                  Regarding your last post about transfers, do you have a power bed? I have one but still need to use a rope attached at the foot of the bed, even after raising the head of the bed up. The rope is the kind used for horses and I got it at a farm supply place. I put knots in it where I need to grab on to pull myself up. The end closest to me is secured on the upper bed rail, to prevent it dropping to the floor.
                  I know other devices are available but I like mine, made for leading a horse.

                  I still struggle a bit once I'm in sitting position and have to maneuver over to the edge of the bed to use my transfer board. Things did improve when I recently purchased a longer transfer board. I had been using a short one for about 10 years until I took a slip and almost went to the floor. With the new board I'm firmly planted at the center/rear of my wheelchair cushion and ready to attack the day.
                  I can't believe sometimes how easy it was to sit up in bed - but that was 10 years ago.
                  Let us know how you are doing.

                  Comment


                    #10
                    Please use this forum to vent, share and learn new things. Please let us know how you are doing. I like your attitude about using the gadgets. Sometimes, as we get older, we are given the wisdom to conserve our energy for the things that really matter - like being able to eat without dropping everything!
                    ckf
                    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                    Comment


                      #11
                      I have realized it has been a year now. I really have no idea what I am supposed to be thinking. The biggest change has been my energy level. There has also been the necessary purchase of new pants, mine were literally falling off. The anger issues that some experience has never been an issue. When I do experience anger it is as a result of malfunctions in the system like having transport call today and say my paperwork needs to be done. For some asinine reason different parts of their computer system were not communicating and finally when checking another link it was verified my annual paperwork was done last February. I do get really angry when my stuff is messed up in the system because of computer errors, input errors or some jerk not knowing where to look.

                      The thing that bothers me most is the metastatic bone sites. My liver seems fine and I do cough more now, not a good thing to do around people with everyone on Covid alert. How do you say, hey I have some cancer growing in my lungs I am not contagious and not come off as a jerk or a victim? I don't think I am ready to stop fighting yet but how will I know when?

                      Comment


                        #12
                        Originally posted by Reader View Post
                        I have realized it has been a year now. I really have no idea what I am supposed to be thinking. The biggest change has been my energy level. There has also been the necessary purchase of new pants, mine were literally falling off. The anger issues that some experience has never been an issue. When I do experience anger it is as a result of malfunctions in the system like having transport call today and say my paperwork needs to be done. For some asinine reason different parts of their computer system were not communicating and finally when checking another link it was verified my annual paperwork was done last February. I do get really angry when my stuff is messed up in the system because of computer errors, input errors or some jerk not knowing where to look.

                        The thing that bothers me most is the metastatic bone sites. My liver seems fine and I do cough more now, not a good thing to do around people with everyone on Covid alert. How do you say, hey I have some cancer growing in my lungs I am not contagious and not come off as a jerk or a victim? I don't think I am ready to stop fighting yet but how will I know when?
                        Could you not say' "Excuse my cough, it is a chronic condition that is NOT covid."

                        Comment


                        • Reader
                          Reader commented
                          Editing a comment
                          Hey I like that idea! Thanks!

                        #13
                        Keep up doing what you're doing. I admire your tenacity in the face of this dismal situation (which includes a plague and the trump virus).
                        Sometimes all I can do is remind myself that my life has value and is valued, connect with friends, follow my bliss, and do the next right thing.
                        Good luck in your journey, you are not alone.
                        69yo male T12 complete since 1995
                        NW NJ

                        Comment


                          #14
                          Originally posted by Reader View Post
                          We are continuing to work on trunk stability. I have found all sorts of new ways to flop over while trying to set up in bed. Like everyone else dome days are better than others.
                          i use a loop to loop my arm in so i can transfer then roll over in bed i also use to roll to pull up pants i have loops in my shoes with zippers if that helps

                          Comment


                            #15
                            Originally posted by pfcs49 View Post
                            Keep up doing what you're doing. I admire your tenacity in the face of this dismal situation (which includes a plague and the trump virus).
                            Sometimes all I can do is remind myself that my life has value and is valued, connect with friends, follow my bliss, and do the next right thing.
                            Good luck in your journey, you are not alone.
                            you got purpose so i can harass your new jersey butt

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