DNR & calling in Hospice

This morning it was obvious that Ed's deterioration is progressing much faster than I ever thought would happen. He was in a stupor all morning, and when he finally became somewhat awake, he did not acknowledge any of us who were there. Throughout the day he could occasionally answer a question from a nurse but was mostly hallucinating, grabbing at the air, speaking nonsense, constantly fiddling with his hospital gown or the bed sheets. He did eat when fed and turned his head away and made a face when he'd had enough. Dr. Mitchell, the oncologist, says we are seeing the effects of the cancer, not the narcotic medication as I had convinced myself it was. He says there will be no improvement, only continued deterioration. It could be tonight, it could be days, it could be weeks, he can't predict but he anticipates that Ed's body will probably gradually shut down bit by bit. I agreed to the Do Not Resuscitate level under which Ed can still get antibiotics if needed and pain medication, in other words minimal sustaining efforts but maximum palliative care. We will meet with reps from hospice tomorrow to see what our options are and what it truly feasible. Originally when we talked about this eventuality, Ed wanted to be at home with hospice care. We will see if that's possible. He may not even be aware of his surroundings. For now, he remains at Grant Hospital.

I now have a muscle relaxant to go with my pain medication. So far I have remained clear-headed enough to make decisions. I know if he could say it, Ed would say Our Love to All.
Joni

A hospital for each of us

Ed is in Grant Memorial Hospital in downtown Columbus tonight (Wednesday night). I was in Doctor's Hospital emergency this morning.


Yesterday, while helping Ed shave, I was standing, bent over, and reached to the right side of his face in a twisting motion--stupid move. I injured my back, creating a muscle spasm that only intensified as the day went on and I did more things. I was up during the night with it, and at 5:50 a.m. today I called Daughter Debbie and Tom for both of them to come. Debbie stayed with Ed; Tom took me to the emergency. The pain was so intense and localized that I thought maybe I also had a kidney stone. After a CT scan and hearing my symptoms and seeing the agony I was in, the doc pronounced a severe muscle spasm that could take weeks to undo (let's hope not), and gave me IV pain killers, sending me home with a prescription for Vicodin and instructions to see my regular doc tomorrow.


Meanwhile, Debbie tried to get Ed up at 8 a.m. to take morning medication and get him to, with grandson Kurtis's help, his 9:15 appointment with the oncologist. He was confused, dazed, altered, very weak, refused the medicine, didn't even realize I wasn't there. She called the oncologist who said, under Ed's and my circumstances, to call 9-1-1 and get him to the hospital. By the time the doc responded, Tom & I were on the way back home, so she waited to call. Ed was sound asleep, so I had some breakfast, called my chiropractor to cancel today's 3 p.m. appointment and tell him what was going on with me and Ed, and called my regular doc for an appointment for tomorrow. Then we called the emergency squad. Ed had a chest x-ray and CT scans of the head and chest. The brain lesions are still there tho not multiplied. There is lung metastasis. There was questionable pneumonia, so he received an IV antibiotic along with the fluids that the paramedics put him on. Because he had not had his morning pain pill to make him foggy (in my "expert" medical opinion), in the afternoon he was fairly lucid, but by evening he was hallucinating--and recognizing that he was. He is in the hospital overnight at least. We'll know more tomorrow what the next part of the plan is. It's good that he's in the hospital because I could not take care of him at home right now. If they send him home, his "kids" will have to set up some sort of schedule to be with us at home along with, hopefully, help from Hospice.


So while I thought I would be updating the blog with the results of his oncology visit, instead I'm home alone with some back pain and on Vicodin. Daughter Judi will pick me up in the morning and take me to the hospital since I can't drive myself right now. We'll see what develops there. Debbie, Tom, & Judi stayed with me all those hours at Grant Hospital today, for which I am very grateful.

Joni

Scary days, better days

Sorry it has been so long since I updated the blog. Last week was a bit scary and then a bit hectic. Ed's physical strength deteriorated during the week. He can no longer get up from the bed or a chair or the toilet on his own. What was the truly scary part occurred on Wednesday.

Monday & Tuesday Ed seemed dazed and in a fog, often unable to answer simple questions. The home health therapist could not get him to talk with her about using his walker. Wednesday morning I called the doctor with a chronicle of what I saw as effects of the pain patch. When he called back (3 hours later), he said to take the patch off immediately. Unfortunately, the oncology office was in the midst of moving to their new building and the doc could not see Ed in his office (no such thing as house calls anymore). Wednesday night when Ed wanted to go to bed, he asked for help getting out of the chair but what he said was "I reach buffet" and then some garbled, meaningless syllables. During the night he was up twice, each time babbling and looking like he didn't know I was there. At 7 a.m. Thursday morning I had the oncologist paged and he did call right back. He was sure I was seeing residual effects from the Fentanyl pain patch. He told me to call the emergency squad and get Ed to Grant Hospital (downtown Columbus & the doc's base of operation) for evaluation to be sure it wasn't something else. As he said this, Ed called to me from bed, asking who I was talking to. He was lucid, clear-eyed, focused, answered questions clearly and quickly. As a result of hearing this over the phone, the doc said to just watch him and if any confusion or dazed look returned to then call 9-1-1.

During the day Thursday, Ed twice had delusions, thinking he saw "Marie's coffee cup" perched on his walker (my sister, Marie, had called while we were having lunch so she must have been on his mind) and wondering what was next to his shoe (he figured out it was just the carpet which he first called "blanket"). He also sat and counted and re-counted the adjustment holes in the legs of his walker; he said he was making sure there was the same number on each side. After each of these incidents, he looked up at me and said, "I just said something silly, didn't I." Since he realized that, I didn't call 9-1-1.

Friday morning, he was much better and continued to remain lucid throughout the weekend, conversing a little with our various visitors, following the conversations going on around him when all the kids and grands were here on Saturday, and paying attention to sports on TV as he watched with Melissa and Mark. He and I had a good discussion about his health situation Thursday morning, clarifying his wishes to have a ventilator if necessary and re-affirming everything else in his Living Will. We had another good discussion on Sunday about resuming Nexavar today, reviewing all we now know about how it will affect him and what we will do to try to minimize the side effects now that we're smarter about it. Last night he started on Oxycodone (generic for Oxycontin) because the doc still feels he needs to be on a narcotic for pain. I went to a group session Thursday evening (daughter Debbie and Tom "Grandpa sat") that made me realize I need to be much more aggressive about calling the doc. The 2 presenters happened to be from his office, a nurse and social worker, and they insist that they want calls, so I will be reporting every little thing instead of trying to second-guess what's going on.

I think Ed enjoyed having everyone over on Saturday tho it was really tiring for him, especially since he has gone for several days now with no afternoon naps (no pain patch putting him to sleep a lot). I am especially glad Melissa and Mark were here, not just for the extra help but for my own peace of mind to see that she is doing OK with her pregnancy. They brought ultrasound pictures from her latest doctor visit--amazing to see this baby in 3-D, even one photo where he was yawning. I say "he" because I think it's a boy and I already think the face looks like Mark, but none of the photos show anything gender-wise. The technician and OB know the sex, but since M&M don't want to know, we don't get to know.

Meanwhile, I found out Friday morning (Debbie "sat" again) that I have some eye problems that will require laser surgery, designed to correct "narrow angles" and prevent glaucoma--just what I needed, one more thing. And once again a doctor told me I'm "older" now plus my genes are responsible for this condition. The laser surgery is supposed to be simple and only take an hour total, I can drive myself to and from the eye surgery center, but each eye will be done a week apart on June 28 and July 5. Follow-up will be drops for a few days with no impairment of my eyesight so that I can drive, etc.

Guess that's enough for now. I'll try to update the blog on Wednesday after Ed's oncology appointment.

Everybody please take care of yourselves.

Joni

The walker is in use

Friday afternoon Ed's walker was delivered, and he immediately began walking around the house much better--much steadier on his feet and with less worry about the sore hip possibly causing a fall. Today (Monday), the home care therapist came and checked the height of it (I did fine with that) and moved the wheels that are on the front legs so that they are inside the legs instead of outside. As a result, Ed can get into our powder room just off the family room using the walker now that it's not quite as wide. It was clearing the doorways of the bathroom and bedroom but he couldn't maneuver inside the bathroom with it before. Amazing what an extra inch or so can do.

I think I'm detecting a pattern with the new patch for pain. We change the patch every 72 hours, putting a new one on at 9 p.m. Ever since he started on the patch, he has been scratching pretty much everywhere on his body. This itchiness is a known side effect. What I'm noticing is that the next day after a new patch he is either extremely sleepy and/or dazed and in a fog. He can't even answer simple questions though he ponders each one until he finally gives up on answering (or I give up waiting for an answer). Then on day 2 he is alert, talkative, eating better--in fact on Saturday he even asked for a milkshake in the afternoon, something he hasn't wanted (or anything else cold, for that matter) in quite a few days. Then on day 3 he is awake but has no energy. If I can confirm this pattern over the remaining 2 days of the current patch, you can bet I'll be on the doctor's case about whether this patch is too powerful for right now. It was prescribed so that Ed wouldn't have to swallow any more pills than necessary; however, it doesn't seem to take care of the hip soreness any better than Tylenol did, I think. What I haven't figured out yet is whether we are seeing some cognitive impairment again from the brain lesions or if it's from the pain patch. Ed notices it, too. He is struggling to come up with certain words again. He is having difficulty writing down his blood pressure readings with the date expressed correctly. He has tried to talk about various grandkids and great-grands with visitors but gets them mixed up; for instance, he reversed the ages and accomplishments of Grayton and Sadie and he referred to Lilly as Millie.

Ed's mouth has healed. I don't see any sores inside anymore. However, he is still having difficulty swallowing, and as I said above, he does not want cold things to swallow. I take this difficulty swallowing as confirmation that the lesion in the throat is the cause of this problem. The Magic Mouthwash hardly helps with that at all, so we'll have to find out what else we can do. Meanwhile, he still has no appetite nor taste buds and pretty much only eats a little pudding, jello, mashed potatoes, Ensure, and the occasional bowl of Cheerios.

This coming Saturday we will be having everybody over for supper--hopefully the rain won't ruin a cookout. Grandson Jeremy gets in Thursday from St Louis, Melissa and Mark will arrive Friday from Iowa, Sherry flies in Saturday morning early from St. Louis; everybody else lives around here. Nothing like adding to the traffic of Memorial Day weekend.

Guess I got a little long-winded with this posting. To all who have asked, I'm hanging in there, so far handling everything so long as I can have a good cry in private once a day.
Joni

Food, glorious food--and good news about Joan

Chicken broth with crushed Saltines, jello with Cool Whip, Cheerios and milk, yogurt, Ensure, creamy mashed potatoes with gravy--not exactly a gourmet menu, but Ed is eating again. Hurrah! On Wednesday his mouth sores were obviously better and he actually felt like eating. Oddly, swallowing water is still a chore but the jello and mashed potatoes and broth went down just fine. Although he still slept a lot, he took short naps rather than 3-hour long ones and was up, alert, and conversational far more than anytime since May 1. I never thought I would say I'm glad he's not taking Nexavar, but it is such a relief to see this improvement and to not have him suffering so. We are going to enjoy this 2-week reprieve before he tries the drug again.

Now on to something very few people know about. I've debated with myself since March 7 about whether or not to let everyone know about my own health issues, but now they are resolved so I'll briefly fill you in. On that date, the same day Ed had his first hip pain that started his ordeal, I had a physical that sent me into a series of tests and biopsies. The end results for me turned out fine in the two questionable areas: Indications of possible cancer of the endometrial lining of my uterus turned out to be a benign fibroid tumor that I don't need to do anything about and a slight thickening of the endometrium that will be monitored via ultrasound in the future but is not so unusual in someone my age. (That's right, the gynecologist basically told me I'm old.) The other issue is that I have an enlarged thyroid, technically called multi-nodular goiter. The first good news is that "multi-nodular" almost always means no cancer, but I do have one large node. It was biopsied on Tuesday, and Wednesday I got the good news that the node is benign. Since the large node and enlarged thyroid do not impede my voice or swallowing or bother me in any way other than not liking to wear turtlenecks, there's nothing to be done about that except ultrasound in 6 months to make sure nothing has changed. Once again, what a relief! Ed didn't need this extra worry on top of his own problems.

For a change I feel like I've delivered good news all around. My cousin Carole said there would be some good days mixed in with the bad and we are currently having a few better ones. Thanks to all for your words of encouragement.
Joni

Off Nexavar for 2 weeks

Ed has not had any better days since I last wrote; in fact, he has hardly eaten anything for the last several days because his mouth sores hurt and it is simply too difficult to swallow. He has now lost 28 pounds since this ordeal began. Today, the oncologist saw him and stopped his taking the cancer-fighting drug Nexavar for 2 weeks (he only began taking it May 1). If the mouth sores are from the Nexavar, he should have some healing and be able to eat again. If they heal, he may start taking Nexavar again to see if they return. There is an alternative drug, Sutent, that he may change to down the road if necessary. If the mouth sores are actually from the radiation treatment he had, they should heal on their own but it could take weeks. I was chastised by the doctor (can you believe that!); I'm not to make a big issue out of getting Ed to eat. He is to eat whatever he feels he can whenever he feels like it. Even if he goes back on Nexavar, we don't have to be so stringent about following the timing of eating and taking the drug (I probably was a bit overboard about that). The doc says the body is smarter than we are and will accommodate what's going on. He says the nutrition Ed does take in is probably mostly "feeding" the main tumor. I don't really understand how that works nor the logic of not eating, but he says there is no danger of organ failure or anything like that. The swallowing difficulty, however, is most likely due to the cancer. There is a lesion on the back of his throat that is probably the culprit. The loss of appetite is also due to the cancer.

Ed is to keep using the "Magic Mouthwash" prescription he started the other day. I am to call the oncologist by Friday if the mouth sores don't improve. Not sure what he'll do about it then but I'm hoping I won't even need to call. Ed will also start wearing a patch for pain control tho it is a low-dose medicine--he's just glad it's not another pill to swallow--yet he is still to take Tylenol for pain as needed. We go back to the oncologist May 30.

A priest from our church is coming this afternoon to give him Communion and the sacrament of Anointing of the Sick. Maybe this spiritual boost will do some good. Thus ends today's update.
Joni

3 not-so-good days

Joni here. Ed always tries to sound upbeat in his blogging, and I think he is making an effort to keep his spirits up. However, Mon., Tues., and today have been very hard days for him. I thought he was a little perkier, more alert, more strong-voiced on Monday even tho he still "deep rested" in the recliner all day. He had a lot of trouble eating because of mouth soreness inside his mouth, but he did try. His diet lately has been all soft stuff and drinkables. His hip soreness (and weakness, I think) increased to the point where, instead of using the cane to assist his right side when he walks, he now places it in front of him and leans with both hands or grabs furniture and such to help keep his balance. Then on Tuesday, the mouth became even more of a problem. He barely ate anything all day. We had a consult with the oral surgeon who will extract the abscessed tooth, but before he schedules that the oral surgeon needs to talk with the whole gamut of Ed's doctors to be sure he can handle the sedation and the procedure. Getting ready to go to that appointment really took a lot out of Ed. Today he has not gotten out of bed at all except to go to the bathroom. He has eaten virtually nothing today. I called the doc, with these results: He is now on Magic Mouthwash which numbs the mouth and throat and helps the ulcers and soreness heal. From what I have read online, the radiation treatments that he had cause this problem, and it could take 7 to 14 days for the cells inside the mouth to rejuvenate. A social worker will be arranging for him to have a walker. Unless he gets some strength back in a hurry, we may have to add wheelchair to that request, too, so that I can get him to places he needs to be more easily. We're expecting a call to schedule a visit to the oncologist earlier than his May 22 appointment. Unfortunately, the doc is on vacation this week, so it will probably be next week til we see him.

Sorry this is all not-so-good news. I'm having difficulty sounding upbeat the way Ed does when he writes. These after-effects of the radiation--and maybe the start of effects of the Nexavar--are much more intense than we understood they would be. I'll feel better if he can just eat again--and so will he, no doubt, even if his taste buds aren't working!

May 6

No appointments this past week since the radiation ended Monday, just pills and pills. Side effects so far are quite a bit of hair loss (looks like a full waste basket) but I still have enough left that Joni says it looks better than it used to because I don't have cowlicks now! One aspect is that there is all this white hair, but underneath there was still quite a bit of brown. Probably a few more days until it's all gone.

Other stuff - a slight forehead rash, little scalp tenderness. Gum and cheek sores. Tooth ache mostly better, but DDS still wants to pull it, have to get Oncologist's OK, he'll do a blood draw. Maybe get it all done this week. Appetite still poor, taste buds essentially non-operating. Probably still losing weight as a result. Hip soreness is still here, making it harder to balance and navigate.

Nexavar isn't too much of an issue so far, I just hope it's working. Fatigue has been pretty extreme this week. Don't do much but relax and "deep rest" in the recliner all day.

Joni still working like a trooper. Mowed again, but that's something she likes to do, so maybe that's a good thing. Essentially cooks 2 meals for each meal - mine and hers. Most of you will appreciate the fact that she has built up this file, starting at Day 1, with notes on every appointment, medication change, Dr. comment, symptom update, etc. Mrs. organized!!

Willl catch up as news develops. Appreciate your interest.

Ed

Radiation ends!

Well, waited a little extra time to post this since this is a sort of switch-over period. That last radiation treatment must have been a doozy. The Dr. did reduce my steroids again to just once a day, part of the weaning he had described. Today, though, has been a blur. Slept in til nearly 8, ate & took my plethora of pills, then pretty much stayed in my recliner and slept or deep-rested til lunch, more of the same this afternoon. I guess it's the sleep, but I've been a bit off the deep end a couple of times today, apparently goofing up our phone number, etc.

Still have my hair, but last night it started coming loose a few strands at a time, won't be surprised if that continues.

Hip has started to feel sore again, Dr. thought that would be normal, it's still controllable with just Tylenol.

Have to watch the timing of the Nexavar, can't take with food (dilutes its effectiveness) so it has to be an hour before or 2 hrs. after eating. I take 2 tablets, twice a day.

No medical meetings for a while (we do intend to check in with the Oncologist as soon as we get our questions lined up).

Meanwhile we continue to appreciate all the prayers, e-mails, best wishes, cards, calls, etc. Keep it up, please.

Ed