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Thread: Jim's Update

  1. #931
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    Default We Need Answers

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

    Gear up everyone ~ this is verbose!

    Donna ~

    Owie! Iím sorry about your extraction site. Been there and done that.

    Did your dentist recommend rinsing your mouth thoroughly after eating?

    Your walk in the forest sounds wonderful. Itís such a rejuvenating feeling to be in nature. And with Daisy. Oh how I wish we could have a dog. We canít, obviously, but we sure miss our Bonnie Lass, the black cocker spaniel.

    I donít think Iíd be up to the task of scraping a dead possum off of our deck, and I definitely wouldnít be smiling. I did feel badly for the possum and said a prayer for it. Then I said a prayer that I could find someone to come out and take it away.

    I have respect for people, who do the jobs no one else wants to do, or who donít have an education or opportunity or skills to do other jobs. I befriended every housekeeper in the hospital, thanking them, asking them about their family. On my walks, I greet the gardeners for our greenbelts and thank them. Likewise, I was kind to Timothy and thanked him for helping us. I donít even want to imagine what it is like to do his job. Catching/exterminating mice/rats, getting raccoons out of attics (raccoons can be vicious). No thank you.

    Iíve had mundane jobs in my life, but I always did the best that I could do in the job and took pride in my work. I was a Kelly Girl (a temp) during the summer, after I graduated and before we moved back to California. One job I had involved using a black marker to cross off the word ďConfidentialĒ on every page of a 300 page document. I had a thousand copies to do.

    Instead of thinking, ďI got a degree for this?!Ē I said, ďMake the best of it. Itís an income.Ē I made up games in my head, challenged myself to see how many pages I could do in X minutes, etc. I became friends with anyone, who walked through the room, which was largely vacant aside from me. Pretty soon, more people walked into the room just to chat.

    In 1986, I had $300 in my checking account, no savings. I had been unemployed for 18 months, during the recession, had many interviews, but competition was fierce. I took Jon and Michael to Social Security and begged for help for them. They got SSI, since I was now officially broke, and the social worker told me about IHSS. Life changed forever for us that day.

    I understand desperation.

    NOW FOR OUR UPDATE

    JIM

    John texted me this morning that he had to take his daughter to a doctorís appointment at 1:30, which is the time I had scheduled for Jonís nurse to visit to examine Jonís wounds. This also rendered John unable to turn Jon and maybe be available to pick up Jim. We had no idea what time Jim would be out, as he was being squeezed into Dr. Kís schedule.

    So, Jim drove to/from the doctor. It was taxing for him, all of the walking and waiting. He arrived at 11:00 and was waiting for his blood draw. He called me 20 minutes later and said it would be 45 mins to an hour before he got his chest x-ray. GrrrÖ he had an appointment for these things!!!

    Jim got home at 1:15. Dr. K cleared him for radiation. He didnít see clear evidence of pneumonia, but heís very concerned about the low WBC. WBC is 1.6, up from 1.4. His RBC are in the normal range.

    Dr. K said that in 3-6 months, he might want Jim to have another bone marrow biopsy, because if his WBC doesnít come up, he must have some kind of blood disorder. He told Jim that he would do the next biopsy, since he doesnít feel that a good sample was taken with the last one.

    ARE YOU KIDDING US?!!! WHAT?!!!

    We waited for a month for the results, and nothing was found. No evidence of blood cancer or any other anomaly to explain Jimís low WBC. Now, weíre being told that that could be a false report, because the sample wasnít good enough?

    Remember what we went through just to get the biopsy? Jim did well, but itís very painful and risky.

    Before and after the biopsy results, Dr. K said that Opdivo can cause WBC to drop, but ďIíve never seen it in any of my patients.Ē

    Well, welcome to our world of the very rare and unusual, Dr. K!

    How many of your patients care for a 49 year old son, with multiple disabilities, at home? How many of your patients didnít come to you with a plethora of ailments and a ton of drugs they were taking for those ailments? How many of them were otherwise healthy aside from cancer?

    The x-ray showed the same things the CT scan and PET scan showed, except the tumor is larger now. However, I donít trust this finding, because it wasnít compared to any other images, and it doesnít show the detail of a CT or PET scan. The radiologist, who read the x-ray, wrote that it could be ďlung cancer.Ē Ummm Ö really?

    Jim is exhausted, of course, and he had a bout of strong coughing after he ate and settled down for a nap. He needed cough syrup. That seems to be needed more and more these days, and yet Dr. K doesnít seem concerned. He should hear Jim coughing, then sneezing, then gasping for air. I sit beside him, feeling helpless.

    Radiation treatment is scheduled for Monday, but Jim isnít sure heíll be able to go. Today, he was aching from his hips to his feet. And we had a quiet night last night, as Jon slept for 13 1/2 hours with SATS of 99 and no O2!!!

    RAD ONC called before Jim arrived home to say Dr. K cleared Jim for treatment. News to me, of course.

    Jim said that Dr. K told him: ďDr. D is in charge. Iím sorry. I donít know when the replacement for Dr. F will be here.Ē And, ďWe need to get started on the radiation treatments as soon as possible.Ē

    The System is letting us down, not living up to its hype in providing top of the line care in our cancer center. Jim is vulnerable and at a crossroads in his treatment options. This is it.

    We have the weekend to process this. Pray for rest and cessation of coughing for Jim, please.

    JONATHAN

    As I mentioned above, Jon had SATS of 99 at 2, 3, 4, 5 a.m. last night. I slept on his chair bed on and off and went to bed at 6 a.m. just for my heating pad treatment.

    Jon slept soundly for 13 1/2 hours. He fell asleep again at 4:30 this afternoon.

    John arrived at 12:15 today to turn Jon. We used his smart phone to take a photo of Jonís behind. John called Jon's nurse and left a message that he was sending her the photo (she was with a patient).

    Most concerning are two small areas on his testicles, which were bleeding. In fact, the photo captured the trickling of blood from the wounds.

    John looked at the photos and turned to Jon and said, ďIím so sorry, buddy. Weíre doing everything we can to help you.Ē

    I called Jonís nurse and told her what was going on and how the day had changed. She arrived shortly after Jim came home. She actually walked in as Jim was taking off his ďgermy clothesĒ and putting on his at home clothes. He was in his skivvies. She laughed, apologized and closed the front door. We laughed and said, ďLike you havenít seen this before! Come in!Ē

    We brought her up to date on Jim and Jon. As always, she was very concerned for us. She loves us so much, and she is our family now.

    We looked at the photo of Jonís rear end, and we talked about what needs to happen next. I told her that Iím beside myself, because weíve done all that we can, and look at what is happening to him. I asked her to send the photo to the WOCN, and tell him all the ointments/powders that weíve tried, and see what he can suggest. He knows us. He was here once a week for 9 months, when Jon had his 5Ē tunnel in his left buttock. He was here so often that we joked about building an annex, so he could live with us.

    I know that it is difficult for him to cover the entire county. But, all we need are his ideas right now. The photo clearly shows everything top to bottom, including drainage on the underpad. Surely he has had other patients with similar wounds. What do we do next?

    Jonís catheter fell out on its own after I deflated the balloon, and his new cath went in smooth as silk with a great return and no leaking. I am now convinced that the smaller sized catheter is the answer. How many years and wounds on his rear did that take?

    Meanwhile, Jon is rocking his SATS in the upper 90s today, still off of O2, with his trache plug in. His vitals were good today.

    ME

    I jumped out of bed at 8, thinking it was 9, this morning. That was fine, because I was able to make our orange juice and take a walk, before getting Jim ready for his appointment and communicating with John.

    When I opened the garage door to go out on my walk, there sat 9 cases of bottled water. Neither Jim nor I heard or even listened for the water delivery guy. Itís also trash pick up day, so loud trucks on the street are expected.

    Not knowing whether John would be visiting today, I carried in those 9 cases of water and stacked them in the garage.

    Do not ask me how I had the strength to do that. I was just so full of adrenaline about the entire day.

    Jim was able to stand and shave his 2 week old beard after his shower. This afternoon, the electric shaver, which I ordered from Amazon yesterday, arrived. One by one, we gather whatever he needs for comfort and ease. His new PJs will be washed tomorrow.

    I put out Jimís clothes, ironed his shirt, numbed his port, made sure he had his wallet, money, inhaler, glasses, cell phone. Tied his shoes, because bending over causes him to cough profusely. Sent him on his way with prayer.

    Then, I gathered all of the supplies needed for Jonís turn and catheter change. Tidied up the house a bit more. Took a shower, because as I said to John earlier in the morning, ďI need a shower. Iím getting ripe.Ē

    When youíre taking care of two seriously ill people, things like brushing your teeth, eating, sleeping, and showering seem to slip by day after day. Yes, I was ripe. Although quick, it felt fabulous. I came downstairs just as John arrived.

    ABOUT JOHN

    I told John today that there are people all over the world, who know about his gifts to us, helping us through this very difficult time in our lives. ďMany people are praying for you and giving thanks for your help to us.Ē

    Humble, as always, John responded, ďThatís so nice. Thank you. But, this is something my dad would have done for you, if he could have. So, Iím just following in his footsteps. Itís an honor.Ē

    We have a photo from so many years ago of Jon in his bed, and Johnís dad in a full Santa costume at Jonís bedside. Jon is looking at him in wonderment, and Johnís dad is stroking Jonís head. He used to tell all of the families in the neighborhood to let their kids look out the window onto the street to see Santa carrying his sack of gifts and saying, ďHo Ho Ho!Ē He knew that Jon couldnít get to a window, so he came in and stood with Jon and brought him a gift and loved Jon with all of his heart.

    I know that Johnís dad is very proud of John for helping us, as well as how lovingly John cares for his mother, wife, daughter, sister and family. John is definitely a chip off the old block. Bless them.

    Now that Iíve worn out your eyes, I thank you for reading, for your love, prayers, support, healing, positive energy, and for walking beside us on this journey.

    We pray for you and your loved ones every day. I promise you. We walk beside you too.

    We Love You!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  3. #932
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    Hi Rose,
    As always there are so many things in your post that I'm grateful for and so many that worry me and make me sad. I'll start with the good things - Jon slept. His sats were excellent. The new smaller cath doesn't leak. You got a walk. The nurse visited. John got a photo of Jon's wounds and I pray that the specialist will give advice (or better yet, make a visit!). The things that worry me are pretty much everything else. The system is exposing all its weaknesses through your treatment. The system doesn't do complex or exceptions to the rule. They do one thing and if that needs to be changed or adapted, God help you. If their treatment makes you worse, they blame the patient. Cancer treatment isn't healing - it hurts. I am so sorry that you both are between such a rock and a hard place, especially now that Dr. K is out of the picture. I will pray harder, if that possible.

    My face feels much better today! The dentist called home this morning to check up on me - that was nice, I thought. Jim thought he was covering his #$% because he messed up. I don't know and it doesn't matter. I feel better. Today it's snowing hard (and it's March 30!!!). So we had pancakes with maple syrup (real, of course) for breakfast and that made us feel better about the weather LOL.

    Love you all and hope that today is a good day at the Hacienda,
    Donna xox
    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


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  5. #933
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    Exclamation Truth

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

    Donna ~

    I'm so glad that you are feeling better. Does your dentist usually make a follow up call? Ours does. Your Jim sounds like my Jim!

    My Jim is suspicious that Dr. K wants to do another bone marrow biopsy to make more money. I remind him that our hospital is non profit. He counters with cynicism about non profits.

    I get it. I do. We all know about the corruption in our government, charities, corporations, etc. now. I'm not a Pollyanna, by any means, but it's stressful and depressing to see ulterior greedy motives in everything, especially health care.

    It's also sad to think that a doctor only follows up on you, if s/he thinks they erred.

    It shouldn't be this way for anyone.

    TRUTH IN MEDICINE

    What really bothers me is that Dr. K thinks that Jim's biopsy sample was insufficient. There is no excuse for that, when we should expect that skilled and careful physicians are performing the biopsy.

    Should we go all the way back to 2017 and Jim's lung biopsy? Was that sample sufficient to formulate appropriate treatment to eradicate it? How do we know? How do they know? And if it wasn't sufficient, why wasn't Jim told that?

    Your doctor tells you that you need X test or Y procedure, explains the purpose, and you should be able to be confident that this is the right path to follow. You should be confident that the tests and procedures are done correctly and accurately. In every step of the process, you should be told the truth by your physician. No hemming and hawing, no hiding and waiting, no speculating. The truth.

    I always tell physicians, "Give it to me straight. I can handle the truth much better than some sugar coated version that gives me false hope."

    We beat the odds best, when we know what the odds are.

    Dr. K says he wants to give Jim another 3 months at least to see whether his WBC increases to a safe range. So, he's willing to let Jim suffer with the effects of low WBC for 3 months?

    And, when I was fighting to get Dr. F instead of Dr. D for Jim's radiation, why didn't anyone tell me the truth: Dr. F was leaving. Did they do this to placate us, thereby luring Jim in for what they consider to be needed radiation on his tumor?

    So, it's Dr. D or die?

    Just tell us the truth!

    GRATITUDE

    We have much for which to be grateful, and we count our blessings everyday. Somehow, we manage to keep climbing out of holes and sitting on the edge for awhile.

    Jim feels better today. He tried on his freshly washed PJs, which fit and were comfortable for him. So much so that he said he'd keep them on today. I reminded him that they are intended for him to wear during radiation treatment and thereafter, when his arms are too sore to raise/lower to put on/take off a T-shirt. When I said, "Laundry, honey," he took them off. I had another load of his laundry in the washer at the time.

    He also really likes his electric shaver. Nothing like a new toy, eh? I'll make sure he uses it too! I'm tired of kissing a porcupine!

    Christmas is still happening in Michael's room and the downstairs bathroom (towels). So, I figure it's still Christmas. PJs and a shaver. Christmas type gifts for Dad (or Father's Day). For Jon, it's new movies every week. He's pretty up to date now.

    Jon is holding SATS in the upper 90s. He's sleeping at odd times, but so be it. He's healthy. His urine output has improved significantly since his catheter change yesterday.

    MY DAY

    I couldn't believe the clock when I saw 9:30 this morning! I ran downstairs to give Jon his meds, and Jim was just about to get up to do that. He didn't want to wake me up. Bless him.

    I took my walk on a gorgeous Spring Day. I stopped to watch 4 golfers setting up on a tee. I heard "FORE!" and watched the men jump when the ball landed in front of them. It came from a hill above them, an attempt to get the ball over a lake and onto the green, which clearly failed.

    Even I know that FORE means "Look out! I have no idea where my ball is going!" I'm quite a distance away, but golf balls have been known to break windows in some homes surrounding the course.

    Taxes

    Most of the afternoon I spent preparing to work on our tax return.

    When I first started using Spectrum's web mail, the option for email folders didn't exist. 49 pages of emails later, we were given folders. I spent 2 months periodically transferring emails to get down to 7 pages.

    One folder is for Jon's Medical Supplies, which I order on line. We are considered vendors for Jon's care, so we are self employed. All of Jon's supplies are deductible. Tedious to go to each email and chart the expense and the items. I was astounded at how much we ordered for Jon last year.

    We can also deduct certain household supplies needed for his care. So, I went through every Instacart order I placed in 2018. I didn't count them, but I often went to different stores twice a week. Also tedious.

    Yes, it would be easier if I did the charting every month. But, you all know what these months have involved. Being organized is a challenge.

    It's almost April, and I haven't started the chart for 2019.

    At least I made some progress today.

    Thank you all for continuing to read my lengthy posts and for your love, prayers, support and friendship. We love you and pray for you and your loved ones.

    Thank You, Donna, for everything!

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  7. #934
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    Hi Rose,

    About the samples and false negatives and false positives: Most of the time doctors get the right sample but at one time I was taught by a doctor that studied cell organelles (kind of like a cell’s organs and really tiny) how doctors take samples and test them. Even if you try to do everything exactly right a sample may turn out to be the wrong size by accident. So I don’t think they were purposefully doing anything wrong or lying about the samples. Even pregnancy tests can give false positives and false negatives. I think he just sees that something is not adding up so he's wondering if there was a small error in lab. There is a point where lab mistakes are too big though like when I had an idiot Dr mess up one of my blood results of course. The Dr D situation however annoys me. Donna totally speaks the truth about Jon’s quality of life. Thanks again for explaining dissertation rules. You totally should have gotten royalties as it appears you did most of the hard stuff.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  9. #935
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    Hi Rose,
    I am so glad that you got a good sleep and a walk!!! That's awesome and I'm so glad you got at least a tiny bit of rest. Before I forget (I'll forget if I get writing about another subject), we skyped with Natalie yesterday and she was telling us that she uses something called TurboTax to do her taxes - it's free and super easy she said. https://turbotax.intuit.com/personal-taxes/online/. I thought I would share in case it was helpful.

    I don't know why the doctors aren't more forthcoming about their realities. I guess it's in your file that you had trouble with Dr. D so no one wanted to tell you that he/she was your only choice. Who knows? I do know that hospitals make tons of errors every day. I cannot count the medical errors Nick has had (some of them very serious). Of course no one talks about them - there's a culture of shame and secrecy in the medical profession because errors are not supposed to happen. The LAST person to know is the patient! I think the whole thing is driven by litigations under the guise of patient safety. But it boils down to secrecy and fear. All I can say is that I pray Jim's treatment is not too painful and that it is effective. I just shake my head at all you are coping with and of course I pray.
    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


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  11. #936
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    Question On the Edge

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

    funnylegs4 ~

    My initial pregnancy test for Jon was false negative. I do understand well about lab errors, as we've had multitudes of them with Jon and Michael. I don't know whether a lab error has occurred with Jim's biopsy results, although it's entirely possible.

    Dr. K said that he wants to do the biopsy himself the next time, because he didn't think this sample was drawn properly. If that is the case, then that refers to professional/medical incompetency on the part of the physician, who drew the sample.

    I'm getting all of this second-hand from Jim, who sometimes gets confused in telling me what the doctors say.

    I would like to talk to Dr. K about Jim's incessant cough, what he thinks could be the source of Jim's low WBC, if it isn't a reaction to Opdivo, and if blood cancer is found, what treatments are available. I also want to ask him why he thinks this biopsy sample isn't telling us the whole story. The opportunity to do that is slim.

    I will send him an email with my concerns, so he may either write to me or call me to answer my questions.

    As for the Dr. D situation, this is inexcusable for a hospital as large as ours, which is part of a system of hospitals throughout the county. One Rad Onc to run a cancer unit as large as ours is absurd. So many cancer patients have radiation. One doctor can't handle them all. And Dr. D doesn't have the temperament to treat that many patients, since her one on one skills are nonexistent. I'd bet that she resents it, too.

    I was being sarcastic about royalties on my ex-spouse's textbooks. I could barely squeeze a paltry amount from him for child support. Oh, the stories I could tell!

    Donna ~

    Thank you for the reference to TuboTax. I am familiar with it. I've been doing our taxes since 1980, and I have a routine.

    The most time consuming part of doing our taxes is compiling all of the data, which is what I've been doing the past couple of days. I have to separate our personal and business taxes, allowable deductibles, and then I can plug the numbers into the forms. I also have to read the tax laws as they pertain to our particular circumstances.

    I don't think that I have the patience or brain cells to learn how to do something new on the computer. We also have frequent outages on our service, and I don't want to be in the middle of a form and have that happen.

    It's just stressful, and I despise having to do it, especially since we pay a greater percentage of our income in taxes than the 1% wealthiest citizens.

    You're right about fear of litigation constraining physicians, particularly in larger populations, like ours. We feel that we've had legitimate cases of malpractice with our boys and with Jim, when he was subjected to Dr. P's horrendous treatment. But bringing a malpractice suit is typically out of the range of most people, because it's very expensive, and the medical professional usually prevails.

    Jim has said that the Rad Onc department is in "chaos," as well as describing their equipment and facilities as medieval.

    Today, he described to me what happens, when he goes to the Rad Onc. First, he's led to a small room next to the toilet. Three narrow lockers are available, in which to place your clothes and belongings. I doubt that they are sanitized between patients. He puts on a hospital gown and walks into the radiation room, wearing his underpants and socks. He's cold. Of course. Then he climbs on a hard, cold surface, and the techs place wedges under his ankles, knees, neck and shoulders.

    If Jim is up to going tomorrow, at that point, the mold will be placed across his chest, and he'll be bolted down. He has tattoos on his chest in the middle for alignment. I told him today that after his shower tomorrow, I'm going to write on his chest: "Please do not break a rib. Thanks."

    YES OR NO?

    Will he or won't he be up to going in for this treatment tomorrow afternoon? Jim has been coughing so much, with so much force, and he's finding no relief in the cough syrup, and I honestly don't know whether he can tolerate this tomorrow.

    I'm making a list of questions for him to ask and warnings to give before the treatment to the team. He says he'll remember all of them, but he forgets that he'll be on Tylenol with codeine, and will take another shot of codeine to stifle his cough. They need to know what he's been going through, and answer some questions for him.

    TRANSPORTATION GLITCH

    I texted John with Jim's radiation schedule for this and next week.

    He replied that he will be out of town this Friday and next Monday. He had told me about this event, but I wasn't sure of the dates.

    Now what? Jon's nurse would help, but she works on Fridays. We tried calling a cab in 2017 to pick Jim up to take him to the ER. That cab ended up in another city south of us, wondering why Jim wasn't coming out to get in the cab. We don't use Uber or Lyft, because we don't have apps for them on our antiquated phone. And how full of germs are those alternatives?

    This is a BIG DEAL for Jim to have this radiation treatment. He needs to travel with someone, who knows him and cares for him. Oh, how I wish that could be me.

    I'm trying to be calm for Jim, but figuring out how to get him there for his treatment is my responsibility. And, I'm already stressing over his treatment, so now I have this little extra stress to manage.

    Truism: There's always one more thing.

    Jon is still holding SATS in the upper 90s, not on O2, and we give thanks for this blessing.

    Thank you all for listening, reading, caring, loving, praying, supporting, and being you.

    We love you and pray for you and your loved ones ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  13. #937
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    Rose, I understand all that you are saying, but I hope Jim can go. As radiation is put off, it gives the cancer a better chance. However, you have to do what you know is best. No one else is there in person, so no one else knows all the circumstances. We are just out here in space worrying along with you. So glad Jon got a couple of nights sleep.
    Virginia

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  15. #938
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    Dear Rose:
    Oh, how I wish I could be there to drive Jim!!!! Is there anyone else in John's family who could step in? His wife or daughter if she's old enough to drive? Does John have a trusted friend he could ask to step in? It might have to be a taxi - nowadays they use GPS and your postal code will bring them to your door with that information. Some cancer centers have transport services that use volunteer drivers - would your hospital maybe offer this?

    Jim's cough is really worrying. I know this is a very simplistic suggestion and I'm sure you've thought of it, but can you write all your orders and concerns in a note and give it to Jim to hand to the techs? Then call the reception desk to make sure that he does hand it to them?

    I always believe that the universe unfolds as it should - if this radiation treatment is meant to be, it will be. If not, it won't. There will be very good reasons for whichever it is. I can't imagine your stress levels. Thank goodness Jon is stable, bless his heart!!!

    My dear friend and mentor Kathleen Jordan passed away recently and this poem was read at her funeral - I think it feels right to share with you today.
    “Go placidly amid the noise and the haste, and remember what peace there may be in silence. As far as possible without surrender, be on good terms with all persons. Speak your truth quietly and clearly, and listen to others, even the dull and ignorant; they too have their story. Be yourself. Especially do not feign affection. Neither be cynical about love – for in the face of all aridity and disenchantment it is perennial as the grass. Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you from misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe no less than the trees and the stars; you have a right to be here. And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world.”
    ― Max Ehrmann, Desiderata: A Poem for a Way of Life

    Take care of yourself through all this, my friend. 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


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  17. #939
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Default Radiation Cancelled Again

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

    Virginia ~

    Thank you for worrying about us out here in space! I feel like I'm in space all of the time. If only I could float around. It sure would relieve my back.

    You are right that the longer we wait to do the radiation, the more chance the tumor has to grow and spread. When I explain what happened today in the update below, it may be clearer as to what Jim is up against right now.

    Donna ~

    John's weekend away is with his wife and daughter for their daughter's volleyball tournament. The rest of the family works, with much less flexibility in time as John has.

    We called a cab in 2017 to take Jim to ER (when he was admitted for 6 days), and the cab ended up in another city, insisting he was in front of our house.

    Remember Timothy, who removed the possum? Well, it's California, and there are quite a few folks around just like him. So, you don't know who is going to show up at your door, if they even show up. Plus, after the treatment, Jim will have to call and wait for a cab to pick him up. He's going to be in bad shape at that point and need to come home comfortably.

    When I asked Jim's Nurse Navigator for transportation help, she gave me a list for ME to call (not her), and we didn't qualify for any of them, because we're still employed.

    It feels awful to be stranded and dependent upon John for everything. Our friends don't live in proximity to us, as in hours or states away.

    I intended to write out all of Jim's questions (and mine) and describe what he's been going through for him to take to the techs. Instead, he spoke directly to the coordinator this morning. More on that below.

    DESIDERATA

    When my former spouse and I marched on People's Park in Berkeley in 1969, we stopped at shops in the Haight Ashbury district. I bought a poster, which was displayed in our assorted abodes throughout grad school and beyond. Mystical artwork surrounding "Desiderata."

    It was there for me every day and night to remind me about The Big Picture. It was my mantra, my spiritual nourishment, my promise to myself, my children, and all of those I loved and encountered on my journey. In the darkest times, when I was betrayed and damaged, when I needed faith to see me through another crisis with one of my boys, when I needed courage to start over, Desiderata was there.

    I memorized it. I chanted it.

    I don't know what happened to the poster. But it is forever etched in my soul. I can see it so clearly even now. It was my survival tool.

    Now, you have shared it with me to bolster me during this difficult path on our journey. Life comes around full circle once again. Thank you so much, Donna.

    That Desiderata was read at Kathleen's funeral tells me so much about her and how she is so precious to you. May God rest Kathleen's beautiful soul in eternal bliss and grant you and all of her loved ones peace and comfort. I look forward to meeting Kathleen on The Other Side some day.

    RADIATION CANCELLED AGAIN

    Jim barely slept all weekend thanks to continuous violent, body-wracking coughing. It's worse at night and in the morning. He sleeps about an hour, then wakes up coughing. He loses his breath, is gasping for air, groaning: it's a literal interpretation of having the wind taken out of your sails.

    Pain from neck to waist, his chest feeling raw. Elevated heart rate, SATS:92. Temp: 99 It's just wrenching for him.

    We called and Jim spoke to the Rad Onc coordinator. He managed to remember everything to tell her, with only one prompt from me. He asked her whether his coughing would be a problem following a treatment, as in disturbing the tumor or cancer cells. Her answer was "no." But, my guess is that he's still at risk for a broken rib, if a rib is slightly injured during treatment. Jim didn't go there.

    Jim thinks he should see a pulmonologist, and I don't disagree. But getting in to see one will take a lot of time. Weeks, maybe a month. Been there, done that. And what if all of this coughing is related to his tumor? A pulmo can't do anything to help that.

    I'm working on an email to Dr. K with questions and a description of Jim's frequent coughing spells. When he moves, stands, sits up, eats, goes to the bathroom, talks too much, he coughs. HARD.

    Sometimes that is followed with sneezing, over and over, also hard.

    On top of the low WBC, this is wearing Jim out.

    He may try to go for treatment next Monday. We will still have to work out transportation. This is only if we can get his coughing under control.

    It's so discouraging, and we feel like we don't know the entire story. So, I will pursue answers and seek solutions for Jim to get the treatment he needs.

    JONATHAN AND THE WOCN

    John and I intended to turn Jon today, but he fell asleep at 11:30 this morning, and he's still asleep.

    Meanwhile, Jon's nurse called this afternoon to tell me that the WOCN is available tomorrow and will be here around noon. His window is 10 to noon, but she encouraged him to make it closer to noon. She will also be here.

    He's seen the photo of Jon's backside, so he has some idea of what he'll be viewing. I trust him, and it will be nice to see him again after all of these years. We all used to have fun together teasing and joking, so I hope he still has that spark. Jon will be happy to see him.

    If Jon's awake, of course. My first concern about it, since his sleep schedule is so askew.

    Jon's nurse and I agreed that the WOCN, who I remember as quite buff, can help us turn Jon, and she and I can hold Jon, while he examines the wounds. We will have to turn him on both sides, so that we can change the underpads, since we didn't get to turn him today.

    Sheering

    I expect the WOCN to talk about "sheering" with pulling Jon up by his bottom sheet. Well, here's the scenario:

    It's 2 a.m., and Jon needs to be pulled up in bed. That's me, on my own, so I have to do it the only way I can. We investigated and tried all kinds of assistive sheets and lift straps, and none of them worked for Jon or me. We bought all of that stuff, not Medi-Cal, but it's useless to us.

    Jim can't help me. John can't be here at 2 a.m. or even everyday. He has a family, a job, a life. I can't get a home health aide authorized to come out to help me pull him up, evidently. If the agency even had a male aide, who could handle Jon safely, which they don't. But no one would be here at 2 a.m., regardless.

    If Jon has slid down in the bed, his airway is compromised. We can't have that. I have to pull him up. I HAVE TO DO IT. I have to unlock the brakes on his bed, put the pump on static full inflation, lower his head and raise his legs, pull the bed out from the wall. I have to empty his drainage bag, and put it on top of his bed, so it doesn't tug. Disconnect feeding tube and O2 tubing. Then, I have to gently pull him up in the bed. It takes three separate pulls to do this. Because I am doing it alone.

    Of course, setting him back up is just as involved.

    That's why I use Optifoam pads to protect from sheering. But if there is a better way, other than telling me not to do the only thing I can do to lift Jon up in bed, then I'm open to anything.

    I can only do what I can do. I'm doing my best. I'm old, falling apart, and very tired. Handle me with care, please.

    So, we'll see what tomorrow brings, as we try to get through this night.

    Thank you all so much for walking beside us and sharing your love and prayers for us.

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

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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  19. #940
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    Default Sleep Helps

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

    We don't know why, but last night, Jim slept for 6 hours straight without getting up to pee or coughing. What a blessing for Jim!

    Unfortunately, it didn't last. When I went to bed at 6 a.m., Jim started coughing. I was exhausted, so I slept through it (as did Jon), but when I got up at 8, Jim told me it had been pretty much non stop. His cough settled down a little as the morning wore on, but just talking made it return.

    I asked Jim to coach Jon's nurse and the WOCN in turning Jon, as I thought he'd feel included, and he is the expert on turning Jon, with John as his apprentice. But he soon lost his voice and had to sit down. I took over with coaching, and I turned to Jim at one point, rolling my eyes, because our nurses weren't picking up on the process. Jim returned my expression of frustration.

    They approach Jon as they would any other patient. But Jon isn't like any other patient. And we have a way of turning him, which works, is comfortable for him, and safe. John has it down pat. I was wishing he was here today.

    Jon's nurse suggested Jim try over the counter cough medicine, Delsym. So I'll get that for him on my Instacart run tomorrow.

    She also offered up her husband to transport Jim to/from his radiation treatment on Monday, while John is out of town. He's retired, and he goes fishing on Tuesdays and Wednesdays, but otherwise, he's available to help us with transportation. Another blessing.

    We are hoping that Jim has a better week and will be able to start treatments on Monday.

    Jim said that he's willing to try the inhaler, which the RTs in the hospital and Dr. K were pushing on him. He feels like his inhaler is losing its efficacy. He's been using it for 2 years, so perhaps it has. Jim was avoiding the new inhaler, because it has steroids, and his current one doesn't.

    I don't know what else to do, beyond what we're doing. Jim does want the radiation treatment, as he knows it is his last option. But he is so wracked from coughing all of the time, he has no breath or energy.

    We thank you all for your love, prayers, support, and continuing friendship. We'd be lost without you.

    We pray for you and your loved ones every day and send you all healing, positive energy.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), 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. Now, they watch over Jim and me.

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