March 23, 2012
Moody died at 1:55 AM. ML and I had finally gotten to sleep when Sandy (our aide tonight) woke us to be with him for his last breaths. We called Hospice to come. The nurse arrived about 30 minutes later and certified his death. The death certificate must be signed by Dr. Bergdolt in the morning. The nurse called the funeral home to come get Moody's body and have it cremated. I had filled out everything on the paper work except the date and time of death. It's amazing to me that it was only about two weeks ago that we were told Moody would die within 5-6 months. I guess we should be very grateful that he did not suffer longer in the pangs of death.
March 22, 2012
Last night Moody's breathing became very labored, gasping for air. He is totally nonresponsive, and often seems to choke on his phlegm. This condition is still going on, so the Hospice nurse came and thought he would die within a week, quite possibly within a few days. His pulse and fever indicated an extreme dying process, but his blood pressure is still good. Kay Clark from GR, has been great supplying us an aide for the night, and she comes over herself with an aide going off duty to change Moody and clean him up a few times a day. ML decided to stay here and not return to her job and they were great about telling her to take whatever time she needed. Robert is coming tomorrow. ML got us a baby monitor yesterday that we leave on so we can hear Moody where ever we are in the house. I decided to not try to have neighbors sit with Moody as I think it would be too distressful for them. ML and I, and our neighbor, Mary, take turns. I asked the music director for Iolanthe if would be OK if I missed some of the final rehearsals or performances and I am waiting to hear back. I don't want to leave the house because I want to be here for the end.
March 21, 2012
ML arrived last night from Baltimore through a 2-hour thunderstorm. Moody was about the same today as yesterday. The Hospice folks came by this morning including his nurse, Bronwyn, and his CNA, Lorene. Lorene gave him a shave and a bath and Bronwyn tended to his medication needs. She is now of the belief that Moody may live only another 2 weeks. So now he is eligible for Hospice inpatient facility but I would rather he stay here. Having some sleep at night is sooooo helpful!
Around 1pm, Kay (The Galloway Ridge Home Health Coordinator) came by with an aide for 2 hours to clean Moody up and Kay and I discussed my needs for aides between now and Monday. While they were here the UNC Hospice delivery man called to say he was bringing a mattress cover that changes air pressure so the patient doesn't get bed sores, BUT we had to move Moody somewhere else while he put the pad on the bed. A 3-ring circus ensued in figuring how we small women were going to get Moody out of bed for 20 minutes. A group effort- we (ML, Kay, the aide, and I) Moved the hospital bed with Moody in it over next to our queen bed. ML and I got on the bed and Kay and the aide got on the other side of Moody. We then picked up the sheet ends like a sling and moved him over to the queen bed. The guy came with the mattress cover then Kay got the idea to call the Fire Department across the road to come over and move Moody back onto the hospital bed. They did because her son-in-law volunteers there. Kay used to work in EMS before getting her MPH. Moody seemed pretty scared by all this movement so I gave him an Adavan and he has been sleeping ever since. The Hospice man picked up the unused potty chair, walker, and wheel chair.
I spoke with Mary Marshall about the possibility of having Moody's ashes placed in the St. Andrew's columbarium. After checking with the new Rector, Carol Jablonski, they made us an offer we couldn't refuse so when the time comes, I will have the cremation, and we will take Moody's ashes to College Park and have a funeral and place his bones there with our friends; Phyllis, Earl, Bob, Maude, and Eunice. That way I will know that every Sunday some of his friends will be passing by and think of him. We are thinking of Friday evening April 20 for the funeral, which is about a month away - but these things are hard to predict and that date may not work.
March 20, 2012
I spent some time on the phone today with crematories, funeral homes, cemeteries, etc, trying to get some things in place so I'll be ready when the time comes. There are big differences in prices of things so it pays to shop around. ML comes tonight (yeah!)
March 19, 2012
CNAs for tonight, tomorrow, and the next night. They said they'd be willing to send folks over for an hour a couple of times a day to make sure he is comfortable or when I need to go out. Then I would only need to hire someone for overnight. The Hospice folks are still looking into Respite care in Siler City. I should know tomorrow. The Hospice nurse thought he was given too much Adavan and morphine, but he's on teeny doses. She saw him after I had given him his meds so he wasn't in much pain. Later when they changed the bedding right before his meds, you could see he was in a lot of pain. She did not think he would die within 2 weeks so he was not a candidate of hospice residential care (but there are no beds now anyway). His heartbeat and BP are still very good.
The Assistant Director for Nursing at Galloway Ridge came over to see if their home health folks could really look after him. She thought they could and they could give him his meds if they were measured out. She had done research on lymphoma at the National Cancer Institute and said the lymphoma in the blood goes to the brain and causes swelling in the brain which is why his dementia took such a steep decline when the lymphoma returned. She thought his rapid physical and mental decline were typical. She also said she thought he was closer to death than the Hospice nurse- maybe weeks rather than months. So her advice was to take advantage of the Respite care if available and then he would be ready for residential hospice if available. Or we could bring him home and do the modified 24/7 plan. She thought soon he would not be at risk for trying to get out of bed.
Another home heath agency I called thought he should go to a nursing home for custodial care, but if it's weeks we probably could handle it here with more support, but I cannot afford months. Nevertheless, I may go and look at the one nursing home with beds available on Wednesday when ML is here.
Moody seemed warm to the touch though no one has taken his temp. He might have an infection of some kind as well. Below is a pic of Kay Clark who coordinates the GR Home Health and Sharon who is staying with Moody now as I write this entry.
March 18, 2012
Moody was up a couple of times last night agitated, but unlike the previous night, he swallowed his medicines, but it was nonetheless, very difficult to get him back to bed. He spent about 2 hours in the recliner sleeping because I could not get him to the bed. Chuck, the home health aide from GR came at 9:30am while I went to church. At noon he got Moody up, shaved and dressed, such that Moody could join us for dessert in the living room. But after about 20 minutes, he was ready to go back to bed. Chuck put him in the wheel chair to get him into the bathroom and out into the living room. I got home from my Voices board meeting around 5:30pm and Moody was still asleep. I gave him his meds, then Chuck left. I was able to get Moody into the hospital bed this morning and I think he likes it.
March 17, 2012
At around 2am I heard Moody up and slowly moving about. He was very agitated and kept making repetitive motions (opening and closing the toilet seat, trying to enter the corner cabinent). I got him to sit but unfortunatewly it was on my computer chair that has rollies so he couldn't get the leverage to get up. Finally, we got him back to the bedroom but he wouldn't let me help him further and he sat in the closest chair. I could not get him up so he spent the rest of the night in that wooden chair. This morning I was able (with his help) to get him back into bed. I gave him medicines for pain and agitation around noon and he's been asleep most of the day. The nurse said his blood pressure and pulse were good, so he's not as weak as he appears. This behavior could go on for weeks.
I cannot keep this up for much longer. The Hospice social worker and nurse came out today and upped his morphine dose and suggested I give him the stuff for agitation every 4 hours along with the morphine. The social worker, Rob, is going to try to get him into a respite hospital in Siler City but the earliest would be Wednesday. He could stay there for about 5 days. During that time I'm going to have to try to get him into a memory care place even though the one we liked has no openings. So that means one of the places I didn't like. It's sad, but I cannot manage him when he is uncooperative. ML said she would come on Tuesday night and stay until Thursday. Linda and Rob said they'd come on Friday thru Sunday and Rudy & Mary may drop in Sat afternoon. So I have to do something for the next 4 days and nights, but I cannot reach anyone on a Saturday. Monday is the earliest I can get help. Please pray for us.
March 16, 2012
Moody was in so much pain this morning that I had to call the nurse. She came over and said I should give him morphine every 4 hours or as needed in between (a very light dose). The UNC Hospice CNA also came and noticed the marked deterioration since Wednesday. They ordered him a hospital bed, potty chair, and over-the-bed table thinking that he would be more comfortable in a bed that could crank his back up when he wants to get out. A nice volunteer from Fearrington Cares came over to help me make room for the bed in our bedroom. We moved a bookcase and a heavy recliner out of the way to make room for the 7' bed. I couldn't find anyone to stay with Moody so I got him in the car (the morphine had helped ease the pain such that the CNA, Lorene, gave him a shower and got him dressed), and we drove to Walmart in Siler City to get extra long sheets that hopefully will fit. Moody stayed in the car while I went inside for 5 minutes to get the sheets. The bed is suppose to come on Saturday. My fear is that being in a strange bed will confuse him further. He has not said anything about the other Cathy in a while now- I think he knows who I am. He certainly knows who our neighbors are. It hurts him when I turn over in the queen bed, so if he's in another bed, I can still sleep in the room with him and help him when he needs to get up. He ate some ice cream and 2 Popsicles today. The nurse also gave me some sponges to swab his mouth to help the dry mouth go away.
March 15, 2012
Moody seemed a bit better today as it relates to walking, though he is still unsteady. He seems to be in more pain, however. Chuck came this morning and got him dressed and shaved while I was at the gym and walking the dogs. Chuck will be coming back on Sunday morning and afternoon. I then took Moody to Charles House but they called me within an hour- Moody wanted to talk to me. He thought I was taking him to Baltimore and he was confused that I left. I told him I'd pick him up in 2 hours, which I did. I took the dogs in and got to do a Show 'n Tell for the assembly. When Moody got home he had a Popsicle and took a nap. Moore (a GR aide) came at 6pm so I could go to rehearsal. Moody was still asleep, but Moore said he got him up at 7pm and gave him some ice cream and ginger ale. I have a hard time getting Moody to take various medicines. They just treat symptoms, like today the medicine came for the thrush in his mouth.
Moody almost seems like a different person from just last week when we went to Dr. Park's office. Now he takes baby steps, has a hard time getting in the car and talks gibberish. He has a hard time formulating words. He eats nothing but ice cream and drinks nothing but ginger ale. He has lost 10 pounds since last week. He weighed 192 lbs on March 7 with his clothes on at Dr. Park's office and today he weighed 180 lbs in his pajamas on our home scale. When Moody lies down, he moans with every breath, his mouth is open, and his face is gaunt. I've seen this look before-- on my dying father and my dying mother. It grieves me to see it on Moody's face. I know he is still too strong to die anytime soon, however. It breaks my heart when he calls out to the Lord for mercy. I guess we should increase the pain meds and get him a hospital bed.
March 14, 2012
Today was a busy day. At 6am, Moody was up wanting to get dressed because he had to get to church. He left the house but came back after about 2 minutes. I gave him the anti-anxiety pill, but that sort of made him really tired such that he put his head on the table at breakfast. I tried to help him stand to move him to his fancy chair but we could not together manage that. At 9am the hospice aide, Lorene, came and gave him a shower, shaved him, and got him dressed. I used that time to handle some of my Voices treasurer business.
At 10am the hospice nurse, Bronwyn, came. She was here for an hour checking him out and writing out the medication schedule for me. She got another med out of the comfort kit stored in the fridge and suggested I use it in the daytime for anxiety and use the other at night if he's restless at bedtime. They are basically tranquilizers. I gave her Moody's new symptoms (extreme dry mouth, and night sweats) and she said this was the lymphoma getting worse. She ordered a medication for his mouth- she thought there were some thrush patches. I didn't think folks got that at home - only in hospitals.
At 11am, my neighbors came over then the lawyer arrived to get our NC Wills signed and witnessed. It was very difficult for Moody to write his name. It in no manner looks like his signatures but at least that is done! We also had Moody sign over his share of my car title to me so I have to take that to DMV.
Vic James from St. Andrew's called and talked with Moody for a while. After a short nap, Moody got up and sat in his chair just in time for two of the retired clergy to come and bring communion. Moody could not communicate well. He didn't know much what was going on, but he could say the Lord's prayer. We sat in the courtyard after that then he took another nap. I asked Mary P. to came over to spell me so I could walk the dogs up to the mail kiosk. Later Mary sent us over some dinner, well sent me dinner, Moody just eats ice cream and drinks lots of gingerale.
Moody's walking was very slow and wobbly all day. I tried to get him to use the walker or hold on to me, but he prefers to stumble along. Bronwyn asked me to just use the wheelchair they provided. I told her that Moody is worse everyday compared to the previous day. She's going to have a nurse call me on Friday to see how it's going. Bronwyn is off until Sunday. I also wrote a check to Clare Bridge to ask for first refusal should a room become available. I can see that I'm not any good at all this.
March 13, 2012
The UNC Hospice folks (social worker and nurse) came out on Saturday and enrolled Moody. They explained that Medicare pays for all their services to the tune of something like $155 per day. This hospice benefit was approved during the Reagan administration. It's cheaper than having terminal patients go to the hospital. (I read in Moody's father obituary that he was in the hospital for 3 months after declining health for 2 years. I think he had prostate cancer.) The next day various things started to arrive: comfort pack of medicines to be kept in the refrigerator, an automated recliner with buttons that raise the seat to help you get up, a folding wheelchair, and a walker. Today some medicines arrived just in case Moody might need them such as an anti-anxiety drug and sugar-based laxative (because the pain medicines can cause constipation). Moody likes the chair as he was starting to have trouble standing from a seated position. We haven't used the wheel chair or walker, though I was requested to pull up the rug runner in the hall so he didn't trip on them.
A Hospice volunteer coordinator called me and is trying to set up a volunteer to come out Monday and Friday afternoons to stay for about 3 hours so I can get out of the house. A Hospice home health aide is supposed to come out Monday, Wednesday, and Friday to help Moody bathe and shave, etc. That person only stays for about 45 minutes. There is no need for the hospice patient to go see any doctors, but the nurse has to get her medicine orders from the patient's physician. In this case, that's Dr. Bergdolt. So I asked if Moody still had to take all those pills he was on and they all agreed that he could stop the Lipitor and Namenda. He is taking the Vicodin pill about 3 times per day. Moody has not exhibited that frantic compulsion about going home and me not being his wife like he did a week or so ago. But I do have that anti-anxiety pill I could give him, if he starts that agitation again. Also, my cousin Deborah, gave me some good advice on how to redirect Moody's focus should this happen again. She said I should not try to insist that I am his wife or this is his home, but just agree and change his attention. When he said he wanted to go home at some point last weekend, Mary laurel just took him outside and walked him around the house. When he got the the back of the house, Moody recognized it as home.
Tata, stayed with him while I went to chorus rehearsal. When I came home, Moody was up in his new chair in the living room talking with Tata. I think he really enjoyed talking with her. The LTCP have not yet approved the payment for the GR home health folks. But I sure hope they reimburse me. It's hard to get ahold of my contact there, Ann Gallagher, as she doesn't have her own email. It all goes one place and then her stuff gets forwarded to her. Therefore, it's tough to cc her with emails to the providers like GR or Charles House. I sent her the first Charles House invoice but she hasn't said if she received it. I did receive a check from the insurance company returning all the premiums paid in the last 9 months since they decided he was eligible for the benefit last spring.
I took Moody over to the last memory care facility (Clare Bridge) that Mary Laurel and I visited last week. It's a Brookdale senior living place about 20 minutes away. The nurse did an assessment of Moody and gave me an estimate of the amount for "extra care" that he would need now, but as the cancer gets worse, that care will go up. Because the Hospice folks would still go out there, that helps with some of the "extra care" costs. Hospice will supply us a hospital bed whenever we want it. If Moody had to go to this facility, we would have to take his furniture, so they would provide the bed at that facility. I did explain to Moody that a residential facility was a contingency plan if something happened to me or I am unable to care for him down the road. They have no openings now anyway, but I did ask to be on the first refusal list when a room becomes available - just in case. There's no telling how bad Moody may be in 1-2 months when a room may become available. So I just want to leave my options open. The nurse at Clare Bridge thought the memory care was the best place for Moody as the staff:resident ratio is 1:8 which is higher than in regular Assisted Living. Both ML and I thought that it was nice that Clare Bridge had a dog who lived there and greeted all the residents and guests. Though ML did not see the other options available, I think she accepted my judgement that this facility was hands above all the other memory care facilities in the area that are open to the public. It's probably not as nice as those provided in continual care places like Galloway Ridge, but you have to buy in to those while you are still in independent living.
March 7, 2012
Today was our final visit to Dr. Park's office since we decided to call in Hospice for palliative care. Dr. Park said his white cell counts doubled in the last few weeks and documented his weight loss. He has lymphoma cells in his bone marrow, blood, and gut. He thought that without treatment Moody would probably die within 5-6 months. He is in pain and we got an Rx for vicodin in case the ibuprofen doesn't help. He did offer us more chemotherapy but he was doubtful it would work and would probably only extend life by a few months, the end would be the same regardless. So rather than go through the agony of treatment and the expense for tax payers, we both decided to call it quits. I'm expecting a call from UNC Hospice tomorrow.
In the meantime, I have looked at several memory care facilities in the area but didn't like any of them. I have one more to see tomorrow, but they do not have any openings at present. The other places have a double room available but I think if Moody does go to one of these places he should have a private room. These memory care places do invite Hospice in so he could spend his final days there.
Two days ago, Moody was so agitated that I had to call my neighbor to come help me try to keep him here. He did not recognize this as his home, or me as his wife. He wanted to "go home". He went outside with some of his belongings and got really cold half-way down the block. I was able to get him to come home but he is a "flight risk" so assisted living won't take him- it has to be memory care, and they are fairly nasty places: old folks all sitting around in a wide place in a hall with their heads down, awful music playing from somewhere, and an aide bouncing a large ball to the ones who have their eyes open. Really gross... If Moody were worse off, he may not notice - but when he was having a good day- this would be like living in Hell.
Yesterday, he was better and did not try to leave home or tie up the dogs to take them home. He even washed some dishes yesterday as I recall. He is still mostly only eating ice cream. Terri, our neighbor up the street, brought him a container this evening, which was nice as we were out and I haven't had time to go to the grocery store yet this week. I wish I had more positive things to report. Our friends here and back home are very supportive and there are a lot of resources here on which to draw. ML is coming home tonight for the weekend, and that will be good. She should see him while he still can recognize her. We have home health from Galloway Ridge sending aides over to stay with Moody while I am out. Our neighbor, Mary has also come over and stayed with him so I could go look at these memory care places. I am grateful for all support.
March 1, 2012
I got a call today from Dr. Park's office asking that we come in next Wednesday (March 7) since some lymphoma cells appeared in his blood test. This is from the blood draw 2 days ago from his GP. I guess she called Dr. Park about it. Moody's health has been rapidly deteriorating within the last 2-3 weeks. He is exhausted all the time- therefore sleeps a lot, complains of pains in his shoulder, ribs, and elsewhere (may be a sign of bone marrow problems). His appetite has diminished by more than half and he has lost 10 pounds since early February. He's having some trouble standing by himself and cannot tells the dogs apart. Since his dementia is also greater (much more confused about where he is, who I am, etc), it's hard to get a fix on his exact complaints. The nurse who called today did say that his blood levels were low but not low enough for a transfusion. I guess this is supposed to be reassuring. Comparison of the blood counts on Feb 7 and Feb 28 show huge gains in the numbers of lymphoma cells.
February 28, 2012
Moody had his annual physical exam today and also got the results from his brain MRI from last Friday. The MRI showed no sign of strokes or problems with major arteries, but the small veins show signs of sluggish blood flow. There is also less white matter. This is essentially the same result as his previous MRI. They called it "small vessel disease" and recommended continued aspirin and lovastatin. The medical term for the white matter decline is Leukoaraiosis. Patients may develop subcortical dementia syndrome.
Moody has a fair amount of fatigue and sleeps most of the day. When Don and Kathy were here, he moved his plate away and put his head on the table to "rest". He also seems to need more help than before as in dressing, bathing, and even standing from a seated position. He was faithful about washing the dishes, but he has not done that in about 2 weeks. The doctor gave a prescription for a new drug (an antidepressant) to help with resting more at night and that will help increase his appetite. She wants to see him again in 2 months. Since Dr. Bergdolt was taking blood anyway for a lipid panel, I asked her to please get his blood counts to see if the lymphoma had returned.
February 8, 2012
Moody's 3-month check-up was today. The new process worked pretty well: we arrived at 12:45 and left at 2:30. Parking was $3. The port was a little clogged but it soon gave blood after Moody flapped his arms and coughed a few times. The blood test revealed that both his red blood and platelet counts were low so he has to go back in 2 months for another blood test (April 11), but Dr. Park doesn't need to see Moody again in person until June. A physical exam did not show any enlarged lymph nodes. The doctor indicated that the median life expectancy for people with lymphoma who have had success with chemotherapy but did not have a bone marrow transplant.. is 5 years.
November 9, 2011
Moody had another 3-month check-up and all his blood counts are really good. UNC changed their procedures so the visit was much longer. Instead of getting his blood taken in the doctor's office we had to go to the lab first for that. We waited an hour there. Then after his blood was taken we waited another hour to see the doctor. They were tying to speed things up with their new procedure- WRONG! They did give us a free parking voucher. We go back on Feb 9.
August 10, 2011
Last Wednesday Moody had his 3-month check up and because Moody was experiencing some of the same symptoms as a year ago, they scheduled him for a PET scan which was performed this morning. We went back to see Dr. Park in the afternoon and he said the results showed no indication of the lymphoma returning. But the scan did show that Moody had a cracked rib. That was when he fell down with the dogs about a month ago. Nothing they can do to really fix that so no point seeing a doc. We have another check-up apt in 3 months (November).
June 6, 2011
Moody went in to have his port "flushed" so it won't clog up. All in all it took about an hour and parking was $1.50. He went to see his GP earlier in the day and all seemed well. He's supposed to go back in October.
May 4, 2011
Great report from Dr. Park that the lymphoma is in remission: negative bone marrow biopsy, colonoscopy, and PET scan. So he goes back every three months to see Dr. Park and get blood drawn. Because he is leaving his port in place we will have to see a nurse every 6 weeks to flush the port to keep it open. The doctor said that we can expect and average of 2-3 years in remission but he didn't say if that was a normal distribution or skewed. We should call him if he has high fever, more fatigue, or return of bowel symptoms. When it does return he suggests another course of chemotherapy- one that has 2 treatments a week for two weeks, then a week off. He didn't say how many cycles that would be, preferring to talk about it if there is a recurrence. Parking was $10 since we were there from 10:30 until 3:30.
April 20, 2011
We spent all day at UNC's Memorial Hospital today getting Moody's colonoscopy. We arrived at 11:30am, 45 minutes ahead of schedule to have time to check in. They sent us to three different places to register before we got to the right place. We sat around there for an hour, then went to the GI procedure place in the basement where we sat for another 2 hours, then I complained and they took him back where he lay on a stretcher for an hour before taking him to the procedure room. The procedure took 2 hours, so around 5:30pm we finally left there. Parking was $8. The test found a few little polyps which they removed and one odd shaped one that they sent to pathology. But all those horrible lymphomatic tumors that were there before were gone. So that's good. We will get the official results in 2 weeks when we see his oncologist. They said his appt was for 2:15pm, but our letter from them said the appt was at 12:15pm. All I know is that we were the last patients to leave that place.
April 19, 2011
Yesterday, Moody got his bone-marrow biopsy. Parking was $3. It went very smoothly. Tomorrow is his colonoscopy, but he's having a hard time remembering not to eat anything today. I found him with an empty container of ice cream this morning.
April 17, 2011
Moody had his blue-light treatment on his face Friday, April 8, but he couldn't remember that so had no idea why his face was all red and blistered. It's all better now thanks to some special serum I got from Ria, who makes wonderful natural skin products in her kitchen. Tomorrow he has a bone-marrow biopsy and Wednesday a new colonoscopy to see if the lymphoma is in remission.
April 1, 2011
I took Moody up to his dermatology appt in Chapel Hill. He had a cancerous spot removed from his back a few weeks ago and they wanted to get the rest of it today. It was a superficial basal cell skin cancer which is the most common and least aggressive form of skin cancer. Dr. Fradin performed an electro-desocation and curetage (ED&C) procedure three times to successively remove skin layers. Moody's having a bluelight procedure done April 8th which treats the field of stuff on his face. Moody is supposed to return to see Dr. Fradin in 6 months for a followup because once you've had a cancerous spot removed they want to check all over all the time.
March 27, 2011
Moody is home now from a stint in the cancer hospital as an inpatient. On Friday I took him to a same-day appt with our GP because he was complaining of chest pains with a horrendous cough. He had been coughing and snivelling for about a week but on Friday he was really weak so I called for the appointment. When we got there, he got really bad: dizzy, vomiting, chills, slight fever. So the doctor called his cancer doctor who requested he come up to the UNC hospital emergency room. We went up there and they immediately took him back, accessed his port and drew blood to see if his white blood cell count was too low to fight the infection. They started him on an antibiotic drip and and did an x ray, CT scan of head and abdomen. All tests were negative but they admitted him for observation. The next day they let him go. Moody has no memory of the going to the doctor's office or the ER and when he woke up in the hospital he wondered how he got there. He thought I had just put him there because "I was tired of taking care of him". After my show in Durham on Friday night (about midnight) I stopped by the hospital and found where they had admitted him. He had a private room on the 4th floor of the cancer hospital and was fast asleep. They next morning, ML, Robert and I went to retrieve him and brought him home to rest some more. He is better but still weak and coughing. I'm sure there will be follow-up appt to this encounter. I get his wool coat and jacket back from the dry cleaners tomorrow.
March 10, 2011 Cycle 6 - Day 2
Moody died at 1:55 AM. ML and I had finally gotten to sleep when Sandy (our aide tonight) woke us to be with him for his last breaths. We called Hospice to come. The nurse arrived about 30 minutes later and certified his death. The death certificate must be signed by Dr. Bergdolt in the morning. The nurse called the funeral home to come get Moody's body and have it cremated. I had filled out everything on the paper work except the date and time of death. It's amazing to me that it was only about two weeks ago that we were told Moody would die within 5-6 months. I guess we should be very grateful that he did not suffer longer in the pangs of death.
March 22, 2012
Last night Moody's breathing became very labored, gasping for air. He is totally nonresponsive, and often seems to choke on his phlegm. This condition is still going on, so the Hospice nurse came and thought he would die within a week, quite possibly within a few days. His pulse and fever indicated an extreme dying process, but his blood pressure is still good. Kay Clark from GR, has been great supplying us an aide for the night, and she comes over herself with an aide going off duty to change Moody and clean him up a few times a day. ML decided to stay here and not return to her job and they were great about telling her to take whatever time she needed. Robert is coming tomorrow. ML got us a baby monitor yesterday that we leave on so we can hear Moody where ever we are in the house. I decided to not try to have neighbors sit with Moody as I think it would be too distressful for them. ML and I, and our neighbor, Mary, take turns. I asked the music director for Iolanthe if would be OK if I missed some of the final rehearsals or performances and I am waiting to hear back. I don't want to leave the house because I want to be here for the end.
March 21, 2012
ML arrived last night from Baltimore through a 2-hour thunderstorm. Moody was about the same today as yesterday. The Hospice folks came by this morning including his nurse, Bronwyn, and his CNA, Lorene. Lorene gave him a shave and a bath and Bronwyn tended to his medication needs. She is now of the belief that Moody may live only another 2 weeks. So now he is eligible for Hospice inpatient facility but I would rather he stay here. Having some sleep at night is sooooo helpful!
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| Bronwyn and Lorene from UNC Hospice |
Around 1pm, Kay (The Galloway Ridge Home Health Coordinator) came by with an aide for 2 hours to clean Moody up and Kay and I discussed my needs for aides between now and Monday. While they were here the UNC Hospice delivery man called to say he was bringing a mattress cover that changes air pressure so the patient doesn't get bed sores, BUT we had to move Moody somewhere else while he put the pad on the bed. A 3-ring circus ensued in figuring how we small women were going to get Moody out of bed for 20 minutes. A group effort- we (ML, Kay, the aide, and I) Moved the hospital bed with Moody in it over next to our queen bed. ML and I got on the bed and Kay and the aide got on the other side of Moody. We then picked up the sheet ends like a sling and moved him over to the queen bed. The guy came with the mattress cover then Kay got the idea to call the Fire Department across the road to come over and move Moody back onto the hospital bed. They did because her son-in-law volunteers there. Kay used to work in EMS before getting her MPH. Moody seemed pretty scared by all this movement so I gave him an Adavan and he has been sleeping ever since. The Hospice man picked up the unused potty chair, walker, and wheel chair.
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| ML, Kay, and one of the EMS guys |
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| Moody's meds and flowers from Jane Bruce |
March 20, 2012
I spent some time on the phone today with crematories, funeral homes, cemeteries, etc, trying to get some things in place so I'll be ready when the time comes. There are big differences in prices of things so it pays to shop around. ML comes tonight (yeah!)
March 19, 2012
CNAs for tonight, tomorrow, and the next night. They said they'd be willing to send folks over for an hour a couple of times a day to make sure he is comfortable or when I need to go out. Then I would only need to hire someone for overnight. The Hospice folks are still looking into Respite care in Siler City. I should know tomorrow. The Hospice nurse thought he was given too much Adavan and morphine, but he's on teeny doses. She saw him after I had given him his meds so he wasn't in much pain. Later when they changed the bedding right before his meds, you could see he was in a lot of pain. She did not think he would die within 2 weeks so he was not a candidate of hospice residential care (but there are no beds now anyway). His heartbeat and BP are still very good.
The Assistant Director for Nursing at Galloway Ridge came over to see if their home health folks could really look after him. She thought they could and they could give him his meds if they were measured out. She had done research on lymphoma at the National Cancer Institute and said the lymphoma in the blood goes to the brain and causes swelling in the brain which is why his dementia took such a steep decline when the lymphoma returned. She thought his rapid physical and mental decline were typical. She also said she thought he was closer to death than the Hospice nurse- maybe weeks rather than months. So her advice was to take advantage of the Respite care if available and then he would be ready for residential hospice if available. Or we could bring him home and do the modified 24/7 plan. She thought soon he would not be at risk for trying to get out of bed.
Another home heath agency I called thought he should go to a nursing home for custodial care, but if it's weeks we probably could handle it here with more support, but I cannot afford months. Nevertheless, I may go and look at the one nursing home with beds available on Wednesday when ML is here.
Moody seemed warm to the touch though no one has taken his temp. He might have an infection of some kind as well. Below is a pic of Kay Clark who coordinates the GR Home Health and Sharon who is staying with Moody now as I write this entry.
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| Kay and Sharon from Galloway Ridge Home Health |
March 18, 2012
Moody was up a couple of times last night agitated, but unlike the previous night, he swallowed his medicines, but it was nonetheless, very difficult to get him back to bed. He spent about 2 hours in the recliner sleeping because I could not get him to the bed. Chuck, the home health aide from GR came at 9:30am while I went to church. At noon he got Moody up, shaved and dressed, such that Moody could join us for dessert in the living room. But after about 20 minutes, he was ready to go back to bed. Chuck put him in the wheel chair to get him into the bathroom and out into the living room. I got home from my Voices board meeting around 5:30pm and Moody was still asleep. I gave him his meds, then Chuck left. I was able to get Moody into the hospital bed this morning and I think he likes it.
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| Chuck with Moody for dessert on Sunday |
March 17, 2012
At around 2am I heard Moody up and slowly moving about. He was very agitated and kept making repetitive motions (opening and closing the toilet seat, trying to enter the corner cabinent). I got him to sit but unfortunatewly it was on my computer chair that has rollies so he couldn't get the leverage to get up. Finally, we got him back to the bedroom but he wouldn't let me help him further and he sat in the closest chair. I could not get him up so he spent the rest of the night in that wooden chair. This morning I was able (with his help) to get him back into bed. I gave him medicines for pain and agitation around noon and he's been asleep most of the day. The nurse said his blood pressure and pulse were good, so he's not as weak as he appears. This behavior could go on for weeks.
I cannot keep this up for much longer. The Hospice social worker and nurse came out today and upped his morphine dose and suggested I give him the stuff for agitation every 4 hours along with the morphine. The social worker, Rob, is going to try to get him into a respite hospital in Siler City but the earliest would be Wednesday. He could stay there for about 5 days. During that time I'm going to have to try to get him into a memory care place even though the one we liked has no openings. So that means one of the places I didn't like. It's sad, but I cannot manage him when he is uncooperative. ML said she would come on Tuesday night and stay until Thursday. Linda and Rob said they'd come on Friday thru Sunday and Rudy & Mary may drop in Sat afternoon. So I have to do something for the next 4 days and nights, but I cannot reach anyone on a Saturday. Monday is the earliest I can get help. Please pray for us.
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| Setting up the UNC Healthcare bed |
March 16, 2012
Moody was in so much pain this morning that I had to call the nurse. She came over and said I should give him morphine every 4 hours or as needed in between (a very light dose). The UNC Hospice CNA also came and noticed the marked deterioration since Wednesday. They ordered him a hospital bed, potty chair, and over-the-bed table thinking that he would be more comfortable in a bed that could crank his back up when he wants to get out. A nice volunteer from Fearrington Cares came over to help me make room for the bed in our bedroom. We moved a bookcase and a heavy recliner out of the way to make room for the 7' bed. I couldn't find anyone to stay with Moody so I got him in the car (the morphine had helped ease the pain such that the CNA, Lorene, gave him a shower and got him dressed), and we drove to Walmart in Siler City to get extra long sheets that hopefully will fit. Moody stayed in the car while I went inside for 5 minutes to get the sheets. The bed is suppose to come on Saturday. My fear is that being in a strange bed will confuse him further. He has not said anything about the other Cathy in a while now- I think he knows who I am. He certainly knows who our neighbors are. It hurts him when I turn over in the queen bed, so if he's in another bed, I can still sleep in the room with him and help him when he needs to get up. He ate some ice cream and 2 Popsicles today. The nurse also gave me some sponges to swab his mouth to help the dry mouth go away.
March 15, 2012
Moody seemed a bit better today as it relates to walking, though he is still unsteady. He seems to be in more pain, however. Chuck came this morning and got him dressed and shaved while I was at the gym and walking the dogs. Chuck will be coming back on Sunday morning and afternoon. I then took Moody to Charles House but they called me within an hour- Moody wanted to talk to me. He thought I was taking him to Baltimore and he was confused that I left. I told him I'd pick him up in 2 hours, which I did. I took the dogs in and got to do a Show 'n Tell for the assembly. When Moody got home he had a Popsicle and took a nap. Moore (a GR aide) came at 6pm so I could go to rehearsal. Moody was still asleep, but Moore said he got him up at 7pm and gave him some ice cream and ginger ale. I have a hard time getting Moody to take various medicines. They just treat symptoms, like today the medicine came for the thrush in his mouth.
Moody almost seems like a different person from just last week when we went to Dr. Park's office. Now he takes baby steps, has a hard time getting in the car and talks gibberish. He has a hard time formulating words. He eats nothing but ice cream and drinks nothing but ginger ale. He has lost 10 pounds since last week. He weighed 192 lbs on March 7 with his clothes on at Dr. Park's office and today he weighed 180 lbs in his pajamas on our home scale. When Moody lies down, he moans with every breath, his mouth is open, and his face is gaunt. I've seen this look before-- on my dying father and my dying mother. It grieves me to see it on Moody's face. I know he is still too strong to die anytime soon, however. It breaks my heart when he calls out to the Lord for mercy. I guess we should increase the pain meds and get him a hospital bed.
March 14, 2012
Today was a busy day. At 6am, Moody was up wanting to get dressed because he had to get to church. He left the house but came back after about 2 minutes. I gave him the anti-anxiety pill, but that sort of made him really tired such that he put his head on the table at breakfast. I tried to help him stand to move him to his fancy chair but we could not together manage that. At 9am the hospice aide, Lorene, came and gave him a shower, shaved him, and got him dressed. I used that time to handle some of my Voices treasurer business.
At 10am the hospice nurse, Bronwyn, came. She was here for an hour checking him out and writing out the medication schedule for me. She got another med out of the comfort kit stored in the fridge and suggested I use it in the daytime for anxiety and use the other at night if he's restless at bedtime. They are basically tranquilizers. I gave her Moody's new symptoms (extreme dry mouth, and night sweats) and she said this was the lymphoma getting worse. She ordered a medication for his mouth- she thought there were some thrush patches. I didn't think folks got that at home - only in hospitals.
At 11am, my neighbors came over then the lawyer arrived to get our NC Wills signed and witnessed. It was very difficult for Moody to write his name. It in no manner looks like his signatures but at least that is done! We also had Moody sign over his share of my car title to me so I have to take that to DMV.
Vic James from St. Andrew's called and talked with Moody for a while. After a short nap, Moody got up and sat in his chair just in time for two of the retired clergy to come and bring communion. Moody could not communicate well. He didn't know much what was going on, but he could say the Lord's prayer. We sat in the courtyard after that then he took another nap. I asked Mary P. to came over to spell me so I could walk the dogs up to the mail kiosk. Later Mary sent us over some dinner, well sent me dinner, Moody just eats ice cream and drinks lots of gingerale.
Moody's walking was very slow and wobbly all day. I tried to get him to use the walker or hold on to me, but he prefers to stumble along. Bronwyn asked me to just use the wheelchair they provided. I told her that Moody is worse everyday compared to the previous day. She's going to have a nurse call me on Friday to see how it's going. Bronwyn is off until Sunday. I also wrote a check to Clare Bridge to ask for first refusal should a room become available. I can see that I'm not any good at all this.
March 13, 2012
The UNC Hospice folks (social worker and nurse) came out on Saturday and enrolled Moody. They explained that Medicare pays for all their services to the tune of something like $155 per day. This hospice benefit was approved during the Reagan administration. It's cheaper than having terminal patients go to the hospital. (I read in Moody's father obituary that he was in the hospital for 3 months after declining health for 2 years. I think he had prostate cancer.) The next day various things started to arrive: comfort pack of medicines to be kept in the refrigerator, an automated recliner with buttons that raise the seat to help you get up, a folding wheelchair, and a walker. Today some medicines arrived just in case Moody might need them such as an anti-anxiety drug and sugar-based laxative (because the pain medicines can cause constipation). Moody likes the chair as he was starting to have trouble standing from a seated position. We haven't used the wheel chair or walker, though I was requested to pull up the rug runner in the hall so he didn't trip on them.
A Hospice volunteer coordinator called me and is trying to set up a volunteer to come out Monday and Friday afternoons to stay for about 3 hours so I can get out of the house. A Hospice home health aide is supposed to come out Monday, Wednesday, and Friday to help Moody bathe and shave, etc. That person only stays for about 45 minutes. There is no need for the hospice patient to go see any doctors, but the nurse has to get her medicine orders from the patient's physician. In this case, that's Dr. Bergdolt. So I asked if Moody still had to take all those pills he was on and they all agreed that he could stop the Lipitor and Namenda. He is taking the Vicodin pill about 3 times per day. Moody has not exhibited that frantic compulsion about going home and me not being his wife like he did a week or so ago. But I do have that anti-anxiety pill I could give him, if he starts that agitation again. Also, my cousin Deborah, gave me some good advice on how to redirect Moody's focus should this happen again. She said I should not try to insist that I am his wife or this is his home, but just agree and change his attention. When he said he wanted to go home at some point last weekend, Mary laurel just took him outside and walked him around the house. When he got the the back of the house, Moody recognized it as home.
Tata, stayed with him while I went to chorus rehearsal. When I came home, Moody was up in his new chair in the living room talking with Tata. I think he really enjoyed talking with her. The LTCP have not yet approved the payment for the GR home health folks. But I sure hope they reimburse me. It's hard to get ahold of my contact there, Ann Gallagher, as she doesn't have her own email. It all goes one place and then her stuff gets forwarded to her. Therefore, it's tough to cc her with emails to the providers like GR or Charles House. I sent her the first Charles House invoice but she hasn't said if she received it. I did receive a check from the insurance company returning all the premiums paid in the last 9 months since they decided he was eligible for the benefit last spring.
I took Moody over to the last memory care facility (Clare Bridge) that Mary Laurel and I visited last week. It's a Brookdale senior living place about 20 minutes away. The nurse did an assessment of Moody and gave me an estimate of the amount for "extra care" that he would need now, but as the cancer gets worse, that care will go up. Because the Hospice folks would still go out there, that helps with some of the "extra care" costs. Hospice will supply us a hospital bed whenever we want it. If Moody had to go to this facility, we would have to take his furniture, so they would provide the bed at that facility. I did explain to Moody that a residential facility was a contingency plan if something happened to me or I am unable to care for him down the road. They have no openings now anyway, but I did ask to be on the first refusal list when a room becomes available - just in case. There's no telling how bad Moody may be in 1-2 months when a room may become available. So I just want to leave my options open. The nurse at Clare Bridge thought the memory care was the best place for Moody as the staff:resident ratio is 1:8 which is higher than in regular Assisted Living. Both ML and I thought that it was nice that Clare Bridge had a dog who lived there and greeted all the residents and guests. Though ML did not see the other options available, I think she accepted my judgement that this facility was hands above all the other memory care facilities in the area that are open to the public. It's probably not as nice as those provided in continual care places like Galloway Ridge, but you have to buy in to those while you are still in independent living.
March 7, 2012
Today was our final visit to Dr. Park's office since we decided to call in Hospice for palliative care. Dr. Park said his white cell counts doubled in the last few weeks and documented his weight loss. He has lymphoma cells in his bone marrow, blood, and gut. He thought that without treatment Moody would probably die within 5-6 months. He is in pain and we got an Rx for vicodin in case the ibuprofen doesn't help. He did offer us more chemotherapy but he was doubtful it would work and would probably only extend life by a few months, the end would be the same regardless. So rather than go through the agony of treatment and the expense for tax payers, we both decided to call it quits. I'm expecting a call from UNC Hospice tomorrow.
In the meantime, I have looked at several memory care facilities in the area but didn't like any of them. I have one more to see tomorrow, but they do not have any openings at present. The other places have a double room available but I think if Moody does go to one of these places he should have a private room. These memory care places do invite Hospice in so he could spend his final days there.
Two days ago, Moody was so agitated that I had to call my neighbor to come help me try to keep him here. He did not recognize this as his home, or me as his wife. He wanted to "go home". He went outside with some of his belongings and got really cold half-way down the block. I was able to get him to come home but he is a "flight risk" so assisted living won't take him- it has to be memory care, and they are fairly nasty places: old folks all sitting around in a wide place in a hall with their heads down, awful music playing from somewhere, and an aide bouncing a large ball to the ones who have their eyes open. Really gross... If Moody were worse off, he may not notice - but when he was having a good day- this would be like living in Hell.
Yesterday, he was better and did not try to leave home or tie up the dogs to take them home. He even washed some dishes yesterday as I recall. He is still mostly only eating ice cream. Terri, our neighbor up the street, brought him a container this evening, which was nice as we were out and I haven't had time to go to the grocery store yet this week. I wish I had more positive things to report. Our friends here and back home are very supportive and there are a lot of resources here on which to draw. ML is coming home tonight for the weekend, and that will be good. She should see him while he still can recognize her. We have home health from Galloway Ridge sending aides over to stay with Moody while I am out. Our neighbor, Mary has also come over and stayed with him so I could go look at these memory care places. I am grateful for all support.
March 1, 2012
I got a call today from Dr. Park's office asking that we come in next Wednesday (March 7) since some lymphoma cells appeared in his blood test. This is from the blood draw 2 days ago from his GP. I guess she called Dr. Park about it. Moody's health has been rapidly deteriorating within the last 2-3 weeks. He is exhausted all the time- therefore sleeps a lot, complains of pains in his shoulder, ribs, and elsewhere (may be a sign of bone marrow problems). His appetite has diminished by more than half and he has lost 10 pounds since early February. He's having some trouble standing by himself and cannot tells the dogs apart. Since his dementia is also greater (much more confused about where he is, who I am, etc), it's hard to get a fix on his exact complaints. The nurse who called today did say that his blood levels were low but not low enough for a transfusion. I guess this is supposed to be reassuring. Comparison of the blood counts on Feb 7 and Feb 28 show huge gains in the numbers of lymphoma cells.
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| Blood tests March 1, 2012 |
Moody had his annual physical exam today and also got the results from his brain MRI from last Friday. The MRI showed no sign of strokes or problems with major arteries, but the small veins show signs of sluggish blood flow. There is also less white matter. This is essentially the same result as his previous MRI. They called it "small vessel disease" and recommended continued aspirin and lovastatin. The medical term for the white matter decline is Leukoaraiosis. Patients may develop subcortical dementia syndrome.
Moody has a fair amount of fatigue and sleeps most of the day. When Don and Kathy were here, he moved his plate away and put his head on the table to "rest". He also seems to need more help than before as in dressing, bathing, and even standing from a seated position. He was faithful about washing the dishes, but he has not done that in about 2 weeks. The doctor gave a prescription for a new drug (an antidepressant) to help with resting more at night and that will help increase his appetite. She wants to see him again in 2 months. Since Dr. Bergdolt was taking blood anyway for a lipid panel, I asked her to please get his blood counts to see if the lymphoma had returned.
February 8, 2012
Moody's 3-month check-up was today. The new process worked pretty well: we arrived at 12:45 and left at 2:30. Parking was $3. The port was a little clogged but it soon gave blood after Moody flapped his arms and coughed a few times. The blood test revealed that both his red blood and platelet counts were low so he has to go back in 2 months for another blood test (April 11), but Dr. Park doesn't need to see Moody again in person until June. A physical exam did not show any enlarged lymph nodes. The doctor indicated that the median life expectancy for people with lymphoma who have had success with chemotherapy but did not have a bone marrow transplant.. is 5 years.
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| Blood tests Feb 8, 2012 |
November 9, 2011
Moody had another 3-month check-up and all his blood counts are really good. UNC changed their procedures so the visit was much longer. Instead of getting his blood taken in the doctor's office we had to go to the lab first for that. We waited an hour there. Then after his blood was taken we waited another hour to see the doctor. They were tying to speed things up with their new procedure- WRONG! They did give us a free parking voucher. We go back on Feb 9.
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| Blood tests Nov 9, 2011 |
August 10, 2011
Last Wednesday Moody had his 3-month check up and because Moody was experiencing some of the same symptoms as a year ago, they scheduled him for a PET scan which was performed this morning. We went back to see Dr. Park in the afternoon and he said the results showed no indication of the lymphoma returning. But the scan did show that Moody had a cracked rib. That was when he fell down with the dogs about a month ago. Nothing they can do to really fix that so no point seeing a doc. We have another check-up apt in 3 months (November).
June 6, 2011
Moody went in to have his port "flushed" so it won't clog up. All in all it took about an hour and parking was $1.50. He went to see his GP earlier in the day and all seemed well. He's supposed to go back in October.
May 4, 2011
Great report from Dr. Park that the lymphoma is in remission: negative bone marrow biopsy, colonoscopy, and PET scan. So he goes back every three months to see Dr. Park and get blood drawn. Because he is leaving his port in place we will have to see a nurse every 6 weeks to flush the port to keep it open. The doctor said that we can expect and average of 2-3 years in remission but he didn't say if that was a normal distribution or skewed. We should call him if he has high fever, more fatigue, or return of bowel symptoms. When it does return he suggests another course of chemotherapy- one that has 2 treatments a week for two weeks, then a week off. He didn't say how many cycles that would be, preferring to talk about it if there is a recurrence. Parking was $10 since we were there from 10:30 until 3:30.
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| Moody getting a vein access for his PET scan |
April 20, 2011
We spent all day at UNC's Memorial Hospital today getting Moody's colonoscopy. We arrived at 11:30am, 45 minutes ahead of schedule to have time to check in. They sent us to three different places to register before we got to the right place. We sat around there for an hour, then went to the GI procedure place in the basement where we sat for another 2 hours, then I complained and they took him back where he lay on a stretcher for an hour before taking him to the procedure room. The procedure took 2 hours, so around 5:30pm we finally left there. Parking was $8. The test found a few little polyps which they removed and one odd shaped one that they sent to pathology. But all those horrible lymphomatic tumors that were there before were gone. So that's good. We will get the official results in 2 weeks when we see his oncologist. They said his appt was for 2:15pm, but our letter from them said the appt was at 12:15pm. All I know is that we were the last patients to leave that place.
April 19, 2011
Yesterday, Moody got his bone-marrow biopsy. Parking was $3. It went very smoothly. Tomorrow is his colonoscopy, but he's having a hard time remembering not to eat anything today. I found him with an empty container of ice cream this morning.
April 17, 2011
Moody had his blue-light treatment on his face Friday, April 8, but he couldn't remember that so had no idea why his face was all red and blistered. It's all better now thanks to some special serum I got from Ria, who makes wonderful natural skin products in her kitchen. Tomorrow he has a bone-marrow biopsy and Wednesday a new colonoscopy to see if the lymphoma is in remission.
April 1, 2011
I took Moody up to his dermatology appt in Chapel Hill. He had a cancerous spot removed from his back a few weeks ago and they wanted to get the rest of it today. It was a superficial basal cell skin cancer which is the most common and least aggressive form of skin cancer. Dr. Fradin performed an electro-desocation and curetage (ED&C) procedure three times to successively remove skin layers. Moody's having a bluelight procedure done April 8th which treats the field of stuff on his face. Moody is supposed to return to see Dr. Fradin in 6 months for a followup because once you've had a cancerous spot removed they want to check all over all the time.
March 27, 2011
Moody is home now from a stint in the cancer hospital as an inpatient. On Friday I took him to a same-day appt with our GP because he was complaining of chest pains with a horrendous cough. He had been coughing and snivelling for about a week but on Friday he was really weak so I called for the appointment. When we got there, he got really bad: dizzy, vomiting, chills, slight fever. So the doctor called his cancer doctor who requested he come up to the UNC hospital emergency room. We went up there and they immediately took him back, accessed his port and drew blood to see if his white blood cell count was too low to fight the infection. They started him on an antibiotic drip and and did an x ray, CT scan of head and abdomen. All tests were negative but they admitted him for observation. The next day they let him go. Moody has no memory of the going to the doctor's office or the ER and when he woke up in the hospital he wondered how he got there. He thought I had just put him there because "I was tired of taking care of him". After my show in Durham on Friday night (about midnight) I stopped by the hospital and found where they had admitted him. He had a private room on the 4th floor of the cancer hospital and was fast asleep. They next morning, ML, Robert and I went to retrieve him and brought him home to rest some more. He is better but still weak and coughing. I'm sure there will be follow-up appt to this encounter. I get his wool coat and jacket back from the dry cleaners tomorrow.
March 10, 2011 Cycle 6 - Day 2
YEAH!!!!! Moody has completed his 6 months of chemotherapy!! And he received a nice certificate honoring that feat. We were tucked in the most remote corner of the clinic today and finished around 12:15pm. Parking $4.50. Tonight we will celebrate by going up to the Dockside for crabcakes and listen to Tommy Edwards perform.
March 9, 2011 Cycle 6 - Day 1
Today the doctor met us up in the infusion clinic which saved us a little time. Stacie A. was Moody's nurse today. The doctor said that he won't see Moody for 2 months but in 6 weeks he wants a bone marrow biopsy and another colonoscopy so we got all that scheduled. He'll get a PET scan on the morning before we see the doctor in May. He wants to be sure Moody is in remission. If he is not then there are other treatments or drugs he can prescribe. If all is well in 2 months, Moody can have the port removed.
Moody was very tired today during the infusion session and came home and went straight to bed. I brought our lunch today rather than buying anything to eat. The parking guy let me out to drive home and let the dogs out and come back without paying twice (which was very nice). We were at the hospital from 9:30 until 2:30. Parking $10.
February 10, 2011 Cycle 5-Day 2
We went a little early hoping to leave a little early but we just waited around more than usual. The nurse today was a new lady for us and I don't recall her name. Only one more cycle to go in March! Parking was $4.50
February 9, 2011 Cycle 5 - Day 1
The results from Monday's CT scan were super in that all the lymph nodes are back to normal size. The spot in Moody's chest is now half the size it was in September so the Dr. feels that after next month's infusion session that Moody will be in remission. He will double check that with a repeat CT scan and colonoscopy in May. He will start out seeing Moody about once a month to check blood levels, etc and probably have a CT scans every 6 months. He says he will be able to tell if there is a recurrence of the lymphoma via those tests before any new symptoms may occur. Dr. Park reiterated that it will probably return in 2-4 years and then it will not be easy to treat. He said that Moody could probably have his port removed in May if he likes.
The office visit went quickly with the taking of blood pressure, temperature, weight, and accessing the port. Dr. Park said he'd see us next month and up we went for the infusion session which lasted until about 2:45pm. At noon I went to the first floor to get my annual mammogram which was negative. We'll be back Thursday for the second day of bendamustine. Parking was $10 today.
February 7, 2011
Today we went to the UNC Cancer Hospital so Moody could get a CT scan to see if any of the tumors have shrunk under his current infusion scheme. We will know the results on Wednesday so stay posted. He had to drink a super large coke with something in it and they shot him with contrast and took pics. Parking was $3.
February 4, 2011
Moody had a followup visit with Dr. Bergdolt this morning about his memory issues. She gave him a cognitive battery and thought that his mild cognitive impairment (MCI) had progressed to moderate. She thought it was probably due to some blood vessel issues in the brain rather than to Alzheimer's Disease. She wanted him to put his pills in a Mon-Sun plastic am and pm container to help ensure that his takes all his meds at the right time, but Moody does not wish to do this.
January 13, 2011 Cycle 4 - Day 2
The waiting room was packed this morning at 9am, but we got in soon and out by 11:30am so it was a good day. Moody had Stacey A. as his nurse today and things went very well. There was lots of stuff in the newspapers to keep us busy. In the evening Moody and I went out to eat and to a concert in Durham, and amazingly, Stacey A. was in the rather small audience. The concert was a shape note trio singing songs from Corsica, Georgia, and Appalachia - very tight harmonies. We loved it but I never would have thought there'd be anyone there we knew.
January 12, 2011 Cycle 4 - Day 1
Despite a little ice on the roads this morning, Moody and I made it to his 9am appt with Dr. Park. Moody asked him how long he would likely live and Dr. Park said he didn't know but that 4-5 years was not unreasonable to hope for. On Feb 7 Moody will get a CT scan to see if the tumors have shrunk which would indicate that the chemo is working. If it's not working then he may switch the medication to something stronger, but he's "80%" sure this treatment is working. After the treatment is over in March, Moody will get a PET scan, bone marrow biopsy, and another colonoscopy to determine if he is in remission. After Dr. Park's office and blood draw, we went up to the infusion clinic and got Stacey J. again as his nurse. Time went quickly and we were finished by about 2:15.
Today I parked in the valet lot right next to the hospital since it only cost $2 more than the garage parking for a full day ($10 vs. $8). I feel better about paying for all this parking because Turbo Tax says I can deduct it on the taxes. My mock up of 2010 taxes indicated that we had sufficient medical expenses (compared to total income) to warrant taking a deduction. Besides parking, miles driven to medical appts can be taken. It also includes expenses (not reimbursed by insurance) for medicine, copays, glasses, dental and eye care appts, chiropractor appts, etc. You can also deduct health insurance premiums including long-term care which surprised me. Just have to keep a record/receipt of all this stuff (with which the blog helps).
We go back tomorrow morning for day 2 and then return on Wednesday, Feb.9 to see Dr. Park and have more chemo.
December 30, 2010
Moody did very well on our trip to Charleston, though it is evident he is both cold and tired a lot of the time. He tends to wear all his clothes including hats, gloves, long underwear and two pairs of pants while he is indoors. His left eye is much better. Before Christmas we made several trips to the eye doctor to treat his corneal abrasion and the doctor did verify that it was Epithelial Basement Membrane Dystrophy EBMD like was in his right eye when we moved here 2.5 years ago.
December 15-16, 2010
Moody's third cycle went very well. He saw Dr. Park first thing Wednesday morning. They took blood and checked his levels which were very similar to last time and he gave Moody a brief exam, feeling lymph nodes in his neck, groin, legs, etc. He said that after the fourth cycle they would do another CT scan to see if the tumors have shrunk. If they have not then they may have to change the chemo drug, but Moody doesn't complain as much so I would guess that they are shrinking. Dr. Park said Moody did not have to have a blood test before we travel for the holidays. In the Chemo bay, they left the port accessed when Moody went home Wednesday night but I don't think that was a good idea. I worried that Moody would get up and take a shower or fall down on it so next time I will ask them to remove the needle after the first day which means they will have to insert a new one the next day. We had carolers who came around the infusion clinic which was nice. On Thursday it was very quiet as the snow and sleet may have kept some patients from driving in. On Wednesday we left around 2:45pm and on Thursday we left around noon.
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| Lori putting his bracelet on at the infusion clinic |
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| Moody in his infusion chair - he was cold |
Separate from the cancer stuff, Moody had a corneal abrasion in his left eye Wednesday night which rendered him blind because it hurt to open his eyes. This is what happened to him right before we moved to Fearrington. A specialist at Duke told him it was a genetic problem where his cornea just flakes. He had an operation in his right eye two years ago, so this time they may have to operate on his left eye. A neighbor was kind enough to take Moody to the eye doctor Friday morning as I had other obligations. We go back Monday morning. The eye doctor gave him some drops to put in the eye.
Moody came to the Chapel Hill Community Chorus concert Friday night with the help of some other neighbors. He enjoyed it but he couldn't find me up on the stage. Today he is resting (Dec 18).
December 14, 2010
We finally received some facility bills. We received two bills each for $175 from UNC Hospitals after Medicare and Moody's health insurance paid their parts. For the colonoscopy on Sept 16 the original facility charge was $5,202.23 and the Oct 4th bone marrow biopsy charge was $6,579.32.
November 27, 2010
Moody and I had a great time in Baltimore visiting ML and Robert for Thanksgiving. Moody felt really good and the drive up and back was not too taxing. Moody especially enjoyed talking with my nephew, Andy, about his lymphoma from about 15 years ago.
November 23, 2010
Moody had his blood drawn yesterday to see if it's ok for him to travel and the nurse called today to say everything was fine. He went up to his skin doctor this morning to make sure all was well as per our GP's instructions and things are in fact, fine. He's taking a nap now. It worked well to go to our local doctor's office for the blood draw rather than going up to the cancer hospital.
November 18, 2010 Chemo Cycle 2- Day 2
I took Moody in for his appt around 11:30 then zipped over to NCHS office in RTP for a luncheon to celebrate 50th Anniversary of NCHS. Then picked up some ice cream and went to get Moody. He was just finishing his treatment when I arrived around 2pm. He said things went well and he found a New Yorker to read from April that for some reason he doesn't remember reading before. Our local doctor's office said they'd be happy to take Moody's blood for the count next week so we don't have to go back up to the hospital. Next appt is for Cycle 3 on Dec 15-16.
November 17, 2010 Chemo Cycle 2- Day 1
We had a 9am appointment with Dr. Park where the nurse accessed Moody's port (this time the inner port)and drew blood for the blood count monitoring. Then we went upstairs to the infusion clinic where he had his Rituximab and Bendamustine drips. We did not leave the cancer hospital until about 2:45pm. Parking $8. I thought it would go much quicker than Day 1 of Cycle 1, and of course it was 3 hours less, but there is still a lot of waiting around. They serve up the chemo drugs especially per patient because they have a short shelf life. We waited an extra 45 minutes before they brought him the Bendamustine. So bottom line-- I missed my job setting up refreshments for the Women of Fearrington program, but thankfully my neighbor stepped in and handled that for me.
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| Lab result Nov 17, 2010 |
When we went to get Moody's appts for Dec (15th and 16th), the staff person made several errors, which I heard because he sort of talked to himself while he was entering things into his computer. For example he was filling out some form online and said Moody was getting R-CHOP which is incorrect, then he did not make the appt for the second day, and there was some other error. Because I was there I was checking on all that, but I worry about folks who go in alone and don't have someone paying close attention. I did give him the notorized Healthcare Power of Attorney to put in Moody's medical record - I hope he put it in the right one.
November 14, 2010
Moody is feeling really good and we had a nice time at the MET HD broadcast of Don Pasquale on Saturday. We took a long walk with the dogs yesterday morning and now he's at the grocery store, so things seem quite normal. More chemo on Wednesday and Thursday.
November 3, 2010
Today we went to Dr. Park's office so they could draw blood for a count. We arrived around 9am. Everything went well. They decided it was easier just to take the blood from a vein in the hand rather than do the port access. I did remember to take my camera so there are some nice pics. Pam took his blood and Dr. Park and she came out afterwards to say things looked good and he would not need a transfusion and he was fine to go to Charleston for the weekend. We left at 10am. Parking was only $3.
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| Dr. Park, Moody, and Pam |
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| Pam and Moody |
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| Pam drawing some blood |
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| Blood counts Nov 3, 2010 |
November 1, 2010
Moody felt really good all weekend, though he did sleep quite a bit. We went to the ballet in Raleigh on Saturday afternoon and had a lovely party here Sunday night. He took the dogs up to the village for ice cream yesterday afternoon. It's lookin' good.
October 29, 2010
Moody had his general medical exam with Dr. Bergdolt today. She took some urine and blood samples, gave him a physical exam and a pneumococcal vaccine. She ordered B12, vitamin D and a lipid panel and suggested that we cut back to one Namenda pill a day and then come back in 4 months. She said to continue taking all his other meds. She said Moody's pulse in his feet were good but that he could not feel the vibration of her tuning fork. She suggested he take Flomax for his enlarged prostate, but then didn't give us an Rx for it. He had lost 5 lbs since his last visit in August. The diagnoses codes on his chart were 272.4, V244.9, and 600. Alas, I don't have my ICD-9-CM book anymore. The reason for visit was "complete medical exam."
I gave Dr. Bergdolt the Medical Power of Attorney and Advance Directive documents we had signed 2 weeks ago. She has to write a letter indicating that he cannot communicate his medical information sufficiently so I can act for him. The Durable Power of Attorney documents we signed were filed with the Chatham County Deed Registration office. It names me as the first attorney-in-fact, and Mary Laurel as the back-up. The mix up with his life insurance I think has been straightened out. Nationwide never sent us a bill since we moved to NC so it's been 2 years since we paid a premium, but we can reinstate the policy by paying the back premiums.
October 27, 2010
I took the suggestion of one of the cancer publications the hospital gave us and am keeping a spreadsheet of the costs so I can make sure we got it all covered. So far the total charges come to almost $9,000 but they billed us for $14. They are waiting to hear from Medicare and United Healthcare before billing us more. We were going to go to the movies today but I didn't want to wake Moody from his nap so we missed it.
October 26, 2010
We have received many phone calls and emails from friends which is very nice. One of Mary Laurel's friends, Gwen Romeo, is doing a triathlon for the Leukemia & Lymphoma Society in honor of Moody.
October 25, 2010
Moody very much enjoyed Linda's and Molly's visits but he did not feel up to sitting in the dining room for his dinner on Sunday night when we had guests. He did enjoy sitting in the courtyard for the appetizers, however. He has not complained of queasiness since yesterday morning.
October 24, 2010
For the last 2 days, Moody has not eaten as much as he usually does and does not like his coffee in the morning. This morning he feels a little queasy. Guess I should fill that Rx for anti-nausea medicine they gave me.
October 21, 2010 Chemo cycle 1-day2
Today was much better than yesterday in that we were gone by noon. We had a different bay and a different nurse, Stacey (from NJ). I did remember to bring my camera today, however. They gave us a prescription for some anti-nausea medicine should Moody start to feel queasy. Parking was $5. Afterwards we had hot dogs and ice cream at Meadowmont.
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| Accessing the port. Wash cloth in Moody's mouth was his idea. It hurts a little. |
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| Hooking up the infusion meds. |
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| Taking a stroll. |
October 20, 2010 Chemo cycle 1-day 1
Well we both survived the ten hours spent at UNC Cancer Hospital today. The day started with a visit to Moody's oncologist, Dr. Park. They took some blood from his new port (turns out it's a double port) for a bunch of tests, then we chatted with his doctor before heading up to his chemotherapy chair. The doctor said that his bone marrow biopsy confirmed the diagnosis and that 5-10% of his marrow cells were lymphoma. He said this was stage IV cancer which is typical of lymphoma. He reiterated that the therapy would not cure him and the lymphoma would probably come back within 2 years and it would be harder to control next time.
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| Lab results Oct 20 2010: Before Chemotherapy |
The chemotherapy bays are really nice and they take up half of the third floor. Moody's nurse, Stacey (from MA), was very attentive to him for the 8 hours we were there. First a saline solution with heparin, then the Rituximab for 5 hours, slowly to make sure he had no reaction, then more saline, then 30 minutes of Bendamustine, then more saline/heparin again before "de-accessing" the port. We go back tomorrow for more Bendamustine but it should not take more than 3 hours. Our friend here in Fearrington was kind enough to come in to our house and take Zoe and Zelda for a walk at lunch time. Too bad it rained on them in the park. Moody has to return to to Dr. Park's office for blood work on November 3, then more chemotherapy November 17-18. He has to go back every four weeks for more chemotherapy through March. The Bendamustine kills all kinds of blood cells in addition to the mantle cells so they have to frequently check the hemoglobin, white blood cell, and platelette counts. If they become too low, he may have to have a blood transfusion. If he gets a fever of 100.5 or greater he is to go immediately to the ER because an infection could be fatal. This is scary business! Parking was $8.
October 17, 2010
I change Moody's dressing everyday so thought you might like to see pics of the event.
I sure hope I am doing it correctly.
October 13, 2010
Today we went up to UNC Memorial Hospital for the insertion of Moody's "Port-A-Cath" which will be used for access to the circulatory system for the infusion of his chemotherapy. We got to the hospital at 8am for the registration process which took about 1 hour and included some blood work to determine the coagulation properties of Moody's blood. Memorial Hospital looks like the oldest of the many UNC hospitals, but Michelle was a very cheerful registration person with which to start.
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| Michelle checking Moody in for the procedure. |
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| The port is made of metal with a self-sealing cover over the top. |
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| It got inserted into his chest with a catheter that goes into the vein leading down into his heart. That way the medicine is pumped throughout the body without saturating an entry vein. |
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| Moody's nurse for getting ready for the procedure was Donna Wilson - but no kin that I know of. |
To give medicines or treatments, a non-coring needle is put through the skin and into the port. These needles do not cause holes when entering or exiting the port. To prevent blood clots from clogging the line, Heparin is used as a wash to keep the line accessible.
The staff at the Radiology Intervention Clinic were very nice with one doctor coming to tell us what was going to happen (Dr. Isaacson) and another actually doing the implantation (Dr. Foltz). They gave him Fentinol and Versed to sedate him while they did the deed. The procedure itself only took about 1 hour, but we didn't leave the facility until about 12:45pm. While they were checking his alertness in recovery they brought him a nice turkey sandwich but that didn't stop us from getting BLTs on the way home.
The risks of having this "power port" include a central line or pocket infection or getting a hematoma. We need to change his dressing daily for 7 days (starting Friday) and be alert to any fever, redness, swelling, or chills. They gave us a little kit with id cards and a wrist band that indicates he has this port which is made by BARD (type Double POR7 with a 5ml flush volume).
The next appointment is in a week, Wednesday October 20, with Dr. Park which is followed by the first infusion session. When I called his United Health Care Medigap policy folks, they indicated that all would be covered but a $175 copay for each chemotherapy session. But there may be doctor charges which are handled separately. So, even though I have asked many people at the hospital how much this is all going to cost....no one knows. It's a mystery!
October 8, 2010
Yesterday, when we went to our doctor's office to get our flu shots, they told Moody that they all decided NOT to try to take out the plastic tip accidentally left in his left iliac vessel since it has been there for so long. Moody has decided to treat only one thing at a time so he canceled his dentist appt. and doesn't want to make his annual vision check appt.
October 6, 2010
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| Steven I. Park, MD |
This morning we met with Dr. Steven Park in the Hematology/Oncology clinic at the UNC Cancer Hospital. He said that the cancer cannot be cured but it can be managed. Without treatment his prognosis was poor. With a moderate amount of chemotherapy, they could put the lymphoma into remission but it will resurface and he would have to do more chemotherapy. He did not recommend the most aggressive therapy which would involve intensive chemo and a bone marrow transplant as this treatment is not recommended for persons over 60 years of age. He thought Moody would not survive the treatment. Therefore, he offered us two choices - a treatment of R-CHOP which has very nasty side effects and contains 5 drugs, or a newer treatment of R-Bendamustine which is only two drugs but has shown, on a very limited study, to be effective for controlling mantle-cell lymphoma. In both cases the R stands for Rituximab which is a monoclonal antibody which targets the cancel cell without hurting normal cells. Bendamustine is an alkylating agent which interferes with the way DNA works in the cell. It will affect both healthy and cancer cells. The most likely side effect is fatigue but he will be at higher risks of infection because his white blood cells won't work right. Nausea, fever, and blood infections are also possible and must be monitored.
We go back in one week for blood work and for them to put in a "port" into his vein so the chemotherapy can be administered through it. The R-Bendamustine chemotherapy infusions will start Oct 20-21 at the Cancer Hospital on an outpatient basis. He will return every 28 days for about 6 months. He will probably lose his hair and feel bad. They will monitor his blood count each time and if it goes too low, he will be restricted from going out to public places like the theater and grocery store. The doctor said his lymphoma would probably return within 1-2 years and he would go through another course of chemotherapy, but eventually, it will no longer be effective. The doctor felt that with this treatment, he could expect to live 4-5 years if all goes well. Without any treatment he would only live 8-10 months. It seemed like an obvious choice to make to suffer some misery to buy several years of life. But it only postpones the inevitable. So we know all flesh is mortal but we don't usually know when, where, or how. Is this knowledge useful in some manner? Miracles do happen so I believe prayer and good vibes cannot hurt and may help.
Useful stats: H: 6'1 1/2 " W: 205 lbs
October 4, 2010
I thought I would try to keep a blog of Moody's cancer treatments in order to keep a record of what went on and how he progresses. This initial entry will start at the beginning.
Throughout the summer Moody complained of bowel problems and there did appear to be blood in the stool so upon returning from Nantucket he made an appt with our GP, Dr. Barbara Bergdolt. She quite naturally ordered a colonoscopy which he had on September 16, 2010. Dr. Dellon took lots of photos of the event and told us afterwards that there were "innumerable" large polyps. He removed three and biopsied several others.
He called us the next week with the pathology results that indicated that Moody, thankfully, did NOT have colon cancer, but that he did have Mantle Cell Lymphoma (MCL), which is a non-Hodgkin cancer of the blood. The UNC medical staff then set up a myriad of appointments to determine the stage of the cancer. These included:
Sept 18: PET and CT scans
Oct 4: Bone marrow biopsy.
All of these tests were in the new cancer hospital at UNC Medical Campus. The hospital was completed a year ago and is very nice. It's located about 20 minutes from our house in a huge medical complex on the south side of Chapel Hill. For the PET scan, Moody had to have isotopes or something pumped into his blood for the nuclear scan. For the CT scan, he had to drink some stuff and have a contrast pumped into his blood. These tests took all morning. Dr. Bergdolt called us later that week to tell us that these tests revealed that while there was lymphoma in the chest and intestines, there was none in the bone or spine. The scan did reveal a piece of a plastic tip left from an old catherization in his common iliac blood vessel leading to his left leg. But it may have been there for 25 years since Moody was in Leland Hospital for the blood clot in his left leg. Or it may have been from something else, but we can't remember. In any event, it has to be removed. A call to his former physician, Dr. Qadri, revealed that his former doctor had retired and the medical records were "somewhere".
The bone marrow biopsy was a pleasant experience for Moody. Partially because they gave him some kind of morphine, but also because the attendant was soooo nice. John S. Strader, PA was from Greensboro and attends the Episcopal Church in Chapel Hill so they had lots to talk about. He started off saying that he has had 3 bone marrow biopsies himself and is so far, a 7-year survivor of non-Hodgkin lymphoma. After the procedure, he wheeled Moody down to the lobby and showed me how to bring the car around to pick him up. On our way home we stopped off at the best BLT place in the area and sampled their wares, which were quite good given they had no Portuguese bread. On Wednesday we will meet with Dr. Steven I. Park who will tell us what Moody's treatment will be.
