Page 22 of 54 FirstFirst ... 1217181920212223242526273252 ... LastLast
Results 211 to 220 of 534

Thread: Jim's Journey

  1. #211
    Distinguished Community Member
    Join Date
    Oct 2006
    Location
    North Carolina
    Posts
    6,162

    Default

    Rose, just wanted you to know I will be praying about the blood in Jim’s urine. He is working his way down on the rad onc. By my count he is down to 7 days. Wanted to just say that in reading Patrick Swayze’s wife’s account of his illness he had to have his stomach drained quite often. So happy you have Dr S and Dr K. Continuing to pray about over all situation.


  2. #212
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,843
    Blog Entries
    32

    Default

    I'm so sorry to hear of the blood in Jim's urine! I pray that goes away ASAP!!! But I'm so touched by hearing more stories of the beautiful folks at the treatment center and I'm so glad Dr S is a good knowledgable guy. At least the huge gut is finally good for something!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  3. The following 2 users say "thanks"


  4. #213
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,732
    Blog Entries
    1

    Default

    ((((((Hugs to All)))))) ~

    Virginia ~

    Thank you so much for your prayers, which are working.

    funnylegs4 ~

    Thank you. Yes, Jim's gut is good for something! It's still uncomfortable for him, and maybe he will have another drainage after radiation is finished.

    No blood since last night! And, Jim slept a total of 9 hours. He fell asleep from 10 pm to 2 am, went to the bathroom, back to bed, slept til 4 am, up to potty, have a cuppa and 1/2 a Boomin' Berry bagel. Back to bed at 5 and up at 8.

    He ate his cereal/fruit feast, in two segments, and it was smaller than usual, but he hasn't had this meal for a week. Bowels started moving well.

    I was able finally to cut his hair today. It was just looking ridiculous. It just grows in different angles all over his head. And he's reclined on pillows all of the time, so his hair now has a mind of its own. It's a challenge to cut his hair, but it looks so nice and tidy now.

    My hair is half way down my back now. I haven't had my hair cut for over a year, and John's neice cuts my hair and comes to our home to do it. But, you know ... there just hasn't been time with all that has happened in the last year for me to have that luxury. I'm just always grateful that I do have hair.

    Jim calls me "My hippie wife" now. It's fine. I'm not my hair. And yes, I'm still a hippie. Like that's a bad thing. Ha!

    Then, our day took a turn ...

    JIM'S BLOOD DRAW

    I called the oncology unit today to request an order for Jim to have his blood drawn at the medical offices rather than home health, because we have to go to radiation every day, and it's too much to try to schedule a home health visit with a trip to the medical offices.

    Dr. K's assistant returned my call and said, "You're welcome to come here to have the blood draw."

    The urgency of the blood draw was the blood in Jim's urine, which has stopped. A coagulation panel was ordered. Not needed now, probably, but okay, let's do it.

    I stipulated that this was a port draw, not a peripheral (arm or hand) draw, and that we needed it done at 3 p.m. so we could make the 3:30 pm appointment for radiation in rad onc. Very specific on everything. As always, because I know how these things can go awry.

    Which it did.

    John picked us up at 2:40. Once there, I got a wheelchair for Jim and pushed him to the elevators. The walk is too long for him. Up to the 3rd floor. There we were told that they no longer do blood draws, since the infusion center moved to the second floor from the hospital. Off to the second floor we went.

    At the infusion center, as he registered, and I explained that he was getting a blood draw, Jim had to fill out/sign a stack of papers, due each month, when patients check in, and then I asked if the order had been received from Dr. K for the blood draw.

    Jim at one end of the counter, signing forms in a wheelchair, me at the other counter standing over the "I'm new" receptionist, who couldn't find the doctor's order for Jim's blood draw on the computer. She called Dr. K's assistant, who swore that the order was sent. Then she called her supervisor, and I watched as this person was trained, and the clock was ticking since Jim had a 3:30 appointment for radiation. STRESS BUILDING FOR ME AND JIM.

    Once all of that was sorted out, the order was in, Jim signed the papers, we waited. Finally, a nurse came out, sat down next to us and said, "We can't draw the coagulation peripherally. We don't do that here, and it can't be done through the port, because it can cause a false result."

    I told her about Nancy drawing from his port in October for the coagulation panel, ordered that day a few minutes prior to her drawing it, and that Nancy is an infusion nurse, and she drew from the port.

    "We can't do that. And we can't draw peripherally, so you'll have to back down to the first floor and have the lab draw it from his arm."

    "Oh, no. We will not be doing that. Look at his arms! He has purpura, and his skin tears and bleeds and needs to be bandaged and treated for weeks. The last peripheral draw he had left a bruise half way around his arm from the lab downstairs. No. Our home health nurse will draw it. Now we have to go down so he can have radiation. And we wasted all of this time, thinking it would be easier. As if cancer isn't stressful enough, this is what we have to go through?"

    We were sitting next to an elderly gentleman, who told us that he'd been waiting 50 minutes for his scheduled infusion. This is just unacceptable.

    I turned Jim's w/c around, and I said, "You need to fix this" as I gestured around the waiting room. Off to rad onc.

    Started on the 1st floor, elevator to 3rd floor, back down to 2nd floor, back down to 1st floor. Long corridors; it's a huge complex. It is so fun to maneuver a w/c into an elevator, especially when you are my age with a few physical issues.

    Progressive Disclosure:

    We weren't told that we had to go to the infusion center for the draw. We weren't told that a coagulation panel had to be done peripherally. We weren't told that we were considered "drop ins" rather than a scheduled appointment at 3 p.m.

    One of the things in this world that I loathe is Progressive Disclosure. Another is patronizing. Another is receptionists, who should not be training, while treating patients, who are waiting for treatment in an infusion center. The receptionist, who coldly handed Jim the paperwork to sign, never smiled once, and she interrupted Jim, when he spoke.

    IN THE ROOM

    Jose came in, and we chatted, as Jim was taken immediately upon our arrival. While Jim was being treated Mark and his wife, Gail, (got her name today) came in. I sat there bemoaning our challenges today with getting a blood draw, all the while probably educating him a little about how things can go wrong. But he knows well. His wife's cancer is rare.

    Suddenly Jim appeared, and it just seemed so quick to be done. He chatted with Mark and showed him his purpura arms.

    How many ways can they make it more difficult? How can they not recognize the fragility of their patients? When is the cure, which radiation is not, worse than the disease? Yes, Opdivo has extended Jim's life, and things could be, and will be, much worse than they are currently. But what he's going through now is the price he's paying for Opdivo's extension and all of the chemo etc.

    We are keenly aware of the timetable associated with the rad onc patients, so we are all on time, and we wait. And we know that we'll be in and out as soon as possible. It's just amazing at how they get the patients in, treated, and out so quickly. All done with kindness, smiles, caring, love.

    We missed that today in our other adventures.

    So, now we will need to schedule Nancy for Friday, which will put a crinkle in our daily routine, but worth it, because we miss and love her, and we know she will do what Jim needs.

    Thank you all so much for your love, prayers, positive, healing energy, and friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  5. The following 4 users say "thanks"


  6. #214
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,732
    Blog Entries
    1

    Default Weekend Wrap Up

    ((((((Hugs to All)))))) ~

    Jim has managed his 11 radiation treatments very well. It's very tiring, but it's actually good for him to be out and walking. I'd like to inspire Jim to walk about the same distance every day after treatment ends next week. He can wear the pedometer next week, so we can calculate the distance he's been walking and apply it at home. Maybe he could walk on our greenbelt up and down to equal that distance. This may be a hard sell, but I'll try it, because exercise is always beneficial.

    His primary problem is Ascites. He does want drainage again, but he prefers to have at least a week off from going to a medical appointment. I hear that.

    IN THE ROOM

    The ladies I helped by opening that heavy rad onc door for the wheelchair exited the treatment area Thursday with a bunch of pink balloons. I exclaimed, "Balloons! YAY!"

    The lady in the w/c (I should have asked their names too!) beamed, "I graduated today!"

    Mark and I and another lady congratulated her and wished her well. As I held open the door, I asked her if they had any plans to celebrate, and she wasn't sure. "Party! You should go out and have a great dinner and party!"

    They both grinned at me, and the lady in the w/c said, "Yes, let's do that! I'd like that!"

    Gail and Mark are having a difficult time. Gail's radiation is around her mouth, as she has skin cancer which metastasized internally. She's had surgery, and now radiation. Her face is burnt and swollen, and she has trouble eating, can't taste the food anyway, and is utterly exhausted and miserable. Mark is so worried about her, and he's wiped out too.

    They were supposed to meet with Dr. D (the monster, who treated Jim's skull neoplasm) prior to Gail's treatment yesterday. But, they saw the nurse, not Dr. D, and the nurse proclaimed that Gail could have another treatment. Mark came back to the room fuming, and he began telling me more of their saga.

    Gail's oncologist is our Dr. K, and Mark said that he's never met a more caring, compassionate doctor. "He's going to get an earful from me at our appointment with him on Monday morning. I want answers and direction. No one knows whether this radiation is helping Gail, and they just chose a 30 day treatment out of nowhere. Jim has 15 days, and he has a fairly common cancer. I just feel like we're on this never-ending road to nowhere."

    I offered my understanding and our experience with Dr. K. I gave him our two main viewpoints: 1. This is her body, and she has rights. 2. The doctors work for you, not the other way around. I told him to make a list of what he wants to discuss and cover everything with Dr. K.

    I gave him a little hug, as he was sitting, and I was standing, so Jim and I could call John to take us home.

    We don't know whether they'll be in the room on Monday, but if Gail's treatments are halted, we made certain Mark knew that we would continue praying for them.

    THE WEEKEND

    Here's how I spent our day "Off":

    Two loads of laundry.

    Jim dropped his inhaler in the living room. I had to move furniture to find it, and it was unreachable under his bed. In moving furniture, I discovered that I really needed to Swiffer the floors. Then, I vacuumed.

    Cleaned up the kitchen, reloaded the dishwasher, and discovered our kitchen had been invaded with ants. Set up the boric acid/sugar/water baits in three locations, vacuumed up the ants, yet again, wiped down the counters, scrubbed the sink several times.

    Ordered from Instacart. Brought in, unloaded, wiped with alcohol, and put away everything.

    Managed to watch most of the OSU game with Jim. We won 73-14, which is why we're ranked #1 nationally. We wish that Jonathan and Michael were with us to celebrate. They loved rooting for the Buckeyes.

    Jim kept telling me to sit down and relax. Well, I can only do that for so long, and then, I have work to do. Witness the dust under that coffee table, which I cleaned up today. It's a heavy table, even if it's on rollers. The top lifts up to be at chair height. We bought it so I could feed Michael in the living room, while he watched TV in his feeder seat.

    Of course, every square inch of the living room is cluttered. I'd love to see the clever ways Martha Stewart or The Property Brothers could rearrange our space to make it more functional. They probably could. But when do we have time for that?

    Tomorrow morning, I have to run the monthly errands, including picking up Jim's meds and going to the ATM. The last 2 times I tried to use the ATM, the guard truck was there maintaining the machines, so they were down. I figure they won't be doing that on a Sunday morning. I hope I'm right.

    When I come home, I will feed Jim, do more laundry, more cleaning, prepare for the next 4 days of treatment.

    Nancy will be here on Friday, 11/15, to draw Jim's blood, and yes, she can do it through his port, because she knows how to do that. We had a good conversation on Jon's birthday Thurs. evening. She told me not to worry about it, because she would call Dr. K in the morning and explain everything to him. The coagulation panel isn't urgent, since Jim isn't bleeding.

    She comforted me so much, and we laughed several times, because that's what we do. We need the tears and laughter to relieve the stress.

    As always, we thank you for your love, prayers, guidance, and friendship. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  7. The following 5 users say "thanks"


  8. #215
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,961
    Blog Entries
    15

    Default

    Rose, I avoid Martha Stewart. But Marie Kondo has had some good decluttering and storage ideas, I think.

    Funny thing about dust--and those little bits of things on floors that some of us feel obliged to bend over and pick up. None of it is going anywhere. It will be there tomorrow. Sometimes a person just has to call a halt to the tidying and sit back and take a few breaths. Hope you're able to do that now and then at least.

    I'm so glad to know that Jim is walking and keeping his spirits up.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  9. The following 4 users say "thanks"


  10. #216
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    1,241
    Blog Entries
    9

    Default

    Dear Rose,
    I agree with Agate. Marie Kondo is a spiritual person and she would deeply understand the meaning and memories of your spaces. Something tells me too, that she would understand that every decision you make daily about how you are going to expend your energy is taken with love and devotion for your family. You see what needs to be done and you do it.
    Rose, I will tell you our news. Last Thursday afternoon Jim and I drove up north to close his family cottage for the winter (I say 'his' because he owns 1/3 with his sister and brother - MY family cottage on the same lake is owned half and half with my sister - Jim and met and married on the lake and so did HIS parents!). Anyway, we were supposed to go up the previous weekend but we had a huge wind and rain storm which put the power out for 2 days so we couldn't empty the plumbing without electricity. So, on Thursday we went up and discovered that there was ICE in the toilet, the tank and all the pipes! Luckily, no pipes burst and we got the fires going and warmed up the house. Eventually everything melted and thank goodness started working again. We cleaned up fallen trees from the windstorm and then got the plumber over this morning to blow out the pipes and close the house. This morning we got a call saying that Nick's air mattress broke over the weekend and there was confusion and we hadn't been called earlier because they each thought the other had already called us. Poor Nick had a loaner mattress that really hurt and he had a terrible night last night. So we went over today and met with everyone and we are getting everything in place with the help of an administrator and Nick's great staff. Poor Nick though and I feel so badly that we didn't know so didn't call him to reassure him. This morning I told them to put him on a normal mattress from one of the other empty rooms because I knew that would be better than a bad air mattress. It was and he was happier when we arrived. I think he'll be OK overnight until we can try another different loaner tomorrow. Anyway, that's our bit drama and given all that you have had with mattresses over the years, I knew you would understand. Sending lots of love and I'm so glad that Jim is able to walk longer and that everyone in the waiting room of rad onc has the blessing of your kindnesses! xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  11. The following 4 users say "thanks"


  12. #217
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,732
    Blog Entries
    1

    Default

    ((((((Hugs to All)))))) ~

    agate ~

    I'm not a Martha fan either. I don't know anything about Marie Kondo.

    But decluttering involves throwing out stuff, and all of Jim's clutter is necessary. His room is our living room, and his queen sized futon takes up a LOT of space. He doesn't have a closet or a dresser for us to put stuff in, so most of it is on the coffee table and the floor. This is why I can't use our Roomba any longer, because it runs into or eats everything on the floor.

    Jonathan's room was the same way. When care is intensive, you need a ton of stuff to meet needs. Even with his cabinets and closet, his room was cluttered with equipment and ongoing supplies. Now, it is open and lovely, except for all of Jim's stuff, like his towels stacked on Jon's over the bed tray, and his sweats, pjs, and fleece shirts tossed on Jon's chairbed or hanging from Jon's lift. Jon's closet is filled with other supplies for Jim, and I haven't even removed all of Jon's supplies yet.

    Our kitchen counter is the location for Jim's nebulizer cups, both for soaking to clean and sitting out to air dry. He's having more breathing treatments per day now, thanks to his giant gut, which is pressing on his diaphragm. We have a small galley kitchen, and every inch of it is occupied with small appliances.

    I need to try to keep the living room "dust free" (impossible), because dust affects Jim's breathing. The clutter makes it very difficult for me to clean, because I have to move everything on the floor to Swiffer, and I have to bend and stretch to get under his bed, then try to clean the narrow space between the bed and the front windows.

    We have two large windows with wood shutters. They won't open fully, because the bed is in the way. I have to get in the most contorted positions to clean them, with just a tiny opening to get in between the shutters and the windows. Those windows haven't been washed for probably 2 years. I just can't get at them without moving the bed, and I can't move the bed anymore.

    My back is paying for moving the coffee table, in addition to all of the other physical things I do everyday, like helping Jim dress, tie his shoes, and carrying out all of the trash and the laundry, etc. I try to find easier ways to do these things, but they don't help very much. Sometimes just standing for a few minutes is enough to set my back on fire.

    I was diagnosed with RA in 1972, but I spent my entire life after that caring for Jonathan and Michael, lifting and carrying them, and their chairs, before we had a van in 1989. Up and down stairs, in/out of bed, tub, chairs, etc. Some of those years, I worked outside of our home, so I did much of that lifting wearing high heels. I am paying for all of that now. I feel like I'm 110. Our dear friend, who is 96, is in better shape than I am!

    Thank you for wishing me restful moments. I do have to take frequent breaks, but I have to keep working, because the more that builds up, the more I have to do. I just want to try to keep up with it as much as I can, and that is becoming more difficult. When Jim's treatments conclude, and we have a week off, I will try to catch up on rest.

    This went long ... obviously ... and I apologize! I will reply to Donna in another post.

    Thank you, agate, for your steadfast friendship and sage advice. I wish I could take it, and someday, I probably will! You are in our prayers always.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  13. The following 3 users say "thanks"


  14. #218
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,961
    Blog Entries
    15

    Default

    I wouldn't worry for a minute about windows that haven't been washed in 2 years. When there are more important things going on, some things have to be put on a back burner--a lot of the tidying and decluttering that women seem hardwired to keep doing, for instance.

    I'm no big disciple of Marie Kondo either but her ideas aren't just about decluttering. She has some methods of storing and folding things that make life a bit easier.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

    "Always put off until tomorrow whatever you think you should do today." --Anonymous



  15. The following 3 users say "thanks"


  16. #219
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,732
    Blog Entries
    1

    Default

    ((((((Hugs to All)))))) ~

    Donna ~

    Oh my! You have had quite a bit of stuff going on! I just had an inkling that something might be amiss.

    I'm so grateful that you were able to save your pipes and that everything is okay with your lake cottage. I know the cottages are cherished in your families, and the history is incredibly romantic.

    Oh, and I feel so awful for Nicholas without his alternating pressure air mattress. We went there too many times with Jonathan, including last November right before Thanksgiving, when John took the iconic photo of Jonathan in his recliner, as we put his new mattress on his bed. It's just so painful, and we feel so helpless, until we can get the mattress replaced, so we can relate to all of you on this.

    Jon's best mattress system was Invacare. They lasted about 3 years. We did buy a new pump during that time though. And, I recall now, that tubing on the side where we turned Jon and he leaned came apart. We had a loaner, while it was repaired. But then, the company we worked with for so many years was bought out, and they no longer served private clients.

    I can't even count the number of alternating pressure mattresses we purchased for Jonathan, after Medi-Cal said he could only have a static mattress. He had wounds, for crying out loud, on his buttocks! It was prescribed by his physician to have alternating pressure. We couldn't win, so we bought his mattress systems. We have remnants of all of them in the garage.

    I'm praying for the perfect mattress system for Nick, which will provide him with the support and comfort he needs.

    Please don't feel bad that you didn't know and didn't call Nick. I understand, and you know I do, and I'm right there with you. As soon as you learned about his mattress, you were actively problem solving for Nick. And he felt better, when he saw you, and he knows that you'll make everything the way it should be. And, I'm certain that Nick knows the importance of the cottages to the family legacy. It's his legacy too.

    Even if we could clone ourselves, it wouldn't be enough. Equipment breaks in the middle of the night, or on a holiday, or a weekend, or when we're not expecting it. We have sure been there. So many times.

    Just focus on Nick's getting a new mattress system, and the cottages are safe from Winter's potential intensity.

    Our prayers are with all of you, and please update on Nick's mattress. I'll be worrying about it, of course. It's what I do. Can't help it. We love you.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  17. The following 2 users say "thanks"


  18. #220
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,732
    Blog Entries
    1

    Default DAY 12: Listening, Leaning, Learning

    ((((((Hugs to All)))))) ~

    JIM'S MORNING

    He slept more last night, but woke up feeling fuzzy headed and nauseous. Could be from radiation, or from Ascites, or cancer, or all of the above.

    The first BP I took was 156/126, and I was thinking, "ER here we come," because his BP is generally below 120/60. Changed arms, and it was 117/68. His SATS are in the low 90s, and his heart rate is elevated, because he's under so much stress with his giant gut.

    He has been angry about his gut all weekend, which, of course, isn't good for him. I keep trying to explain to him why he has Ascites, and that Nancy diagnosed him long before a doctor did. It's part and parcel with some cancers, including lung cancer. It's incurable. It's horrible. Treating it is difficult. It's similar to lymphedema, which Jonathan had. I keep reminding him that Nancy will be here on Friday to answer all of his questions and calm him down.

    He can't think clearly anymore. He is frustrated, when he tries to find a word or describe something to me. I have to remind him of things several times, and then he remembers. It is aggravating for him. And he fears losing his cognition.

    His vitals remained good for the rest of the day, and he was able to wash up, but not shower, and shave with his electric razor. But it was an effort for him.

    Jim perked up a bit, when we climbed into John's car. John always asks Jim how he's feeling, how his day has been, if he's okay. Then he takes off slowly down the street, careful over the speed bump, and we begin our 10 minute visit.

    Today, we talked about Michael's birthday and Veteran's Day. John remarked about how close their birthdays are. Jonathan and Michael were born 1 year and 4 days apart. That's one reason why they have always been so attached to each other.

    When we arrived at the medical complex, John saw the wife of one of his closest friends. He called out to her, and we chatted and joked around a bit.

    IN THE ROOM

    The room was empty, when we arrived. Shortly after Jim checked in, he told me that he needed to go to the bathroom. I knew that if I didn't see him again, he'd be in treatment.

    The technician came out, and I told her that he was in the bathroom. She said, "Ok, but I want to talk to you about changing tomorrow's appointment to 1:40 instead of 3:30. We have scheduling conflicts."

    I sighed. "We depend on someone else to transport us, and he works until 2:30. Also, Jim needs the entire day to gear up for this adventure. If we change to 1:40, we'll have to start at 11:30 to get ready. He needs to eat. Rest. I don't think we can do it. I'm sorry."

    She was disappointed, but she understood. You know, he only has 3 more days of this to go, so why put a wrench in the works now? This is the schedule he is used to after 12 rounds. Consistency is important in these situations. We understand that things are difficult for them, because they have so many patients, but after 12 rounds, we're pretty tired and looking forward to getting it over with. They know this, and it isn't their fault. Just too many patients and not enough equipment or staff to treat them all.

    Mark and Gail arrived. I stayed and spoke with Mark, while Jim and Gail chatted in the dressing room prior to their treatments.

    Mark was bemoaning all of the doctor appointments, medications, conflicting opinions, loss of their lives before cancer, when they could hike and do whatever they wanted to do without restrictions, her sleep apnea, which she can't control, because she can't wear the mask, how tired he is, how tired she is, how they have not had a vacation in several years.

    I listened, nodded in understanding, and interjected with our experiences.

    I told him that Jim and I had imagined taking a weekend in Laguna, and how we longed to be able to do that. Jim thinks we will someday. I am more realistic. I am the one, who will be left behind, so I have to be realistic. I pray that he's right, and I'm wrong. But I am still realistic.

    In those moments, I felt like Mark and I were in our own two person therapy group. We covered so many things in just 15 minutes, the entire scope of our losses, our fears, our anguish, our love for our spouses, our exhaustion as caregivers.

    Meanwhile, Gail told Jim that she had the Orgain, loved it and has ordered a case of it. She looks and feels better today, even after 4 medical appointments. Perhaps she is feeling like she is finally being heard and seen.

    We will see them again tomorrow, Wednesday and Thursday. Then Jim will graduate, and they'll be on their own for another week or so. But they will meet and connect with new patients, and they will share their wisdom, and all that they learned from others in the room, with them.

    Sometimes we just need to talk to others, who understand. A la BrainTalk. And, actually, that is the best thing we can all do for ourselves and others. Share. Talk. Commiserate. Support. Cry. Laugh. Bemoan. Complain. Spill it all. This is how we discover that we are not alone.

    And while we never want anyone else to feel our pain, when we encounter someone with the same pain, we are comforted to know that we're not alone in how we feel or what we're experiencing.

    We left Mark assuring him that we would be there for him in the next 3 days, and that our prayers will continue.

    Even if we reach a place, where our minds cannot recall these moments, they are forever kept safely in our souls.

    Thank you all so much for continuing to follow us on our journey. Because of you, we know that we are not alone. We are so grateful for your love, prayers, support, and friendship. This is everything, and it is why we are here sharing our lives with each other.

    We love you and pray for you and your loved ones everyday.

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  19. The following 3 users say "thanks"


Page 22 of 54 FirstFirst ... 1217181920212223242526273252 ... LastLast

Similar Threads

  1. Starting this Journey
    By mom2hunter in forum Child Neurology
    Replies: 2
    Last Post: 04-27-2017, 06:57 AM
  2. Who Else Has Questions About Their Health and Spiritual Journey?
    By NeuroNixed Craig in forum Multiple Sclerosis
    Replies: 28
    Last Post: 08-29-2012, 01:16 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.