Two Weeks

Well today wasn't as bad as last Saturday! However, I still have the evening to go and that is always the worst - especially Saturday nights at a little before 10 p.m. I am sleeping better and that a positive step forward. There may be hope.... I went to the florist today to order flowers for next Friday and that was tough. The frames pics, etc look good on the table but I didn't leave them out. I only printed one more pic and framed it to go with them. I got a lot of work done in straightening up the garage today PLUS got the pantry cleaned out. There were a lot of things in the pantry that Larry liked but I don't, such as chicken noodle soup (yuk), so put that kind of stuff in bags and will take it to the food bank next week. I'm tired after doing all that work today so maybe I'll sleep good tonight.... Back around 1992-93, a plant employee gave me a watercolor with the following verse on it: "There are special people who touch our lives in a certain way and having known them we will never be the same." I have had that above my desk for years and I usually look at it every day. Right now, I think of Larry when I read it. At different times, over the years, it has been friends, co-workers, etc. Still haven't opened the envelope with the death certificates in them - maybe tomorrow.... One day at a time...

A day closer to two weeks.....

The funeral home called today to let me know that the death certificates had come back so I went by and picked them up this afternoon but haven't looked at them yet..... Maybe tomorrow.... It was a very nice dinner last night with the neighbor and yes, the evening was easier then I got home. It's nice to be able to talk to someone who has lost a spouse and learn from them. Even though we all handle it differently, the issues are the same. I talked to Larry's broker today and things will not be as simple as we thought they would be. Even though I'm beneficiary, there is still a lot of paperwork to get done and I'll need to go back to the attorney who did our wills and have him help me with some of it. I also got the paperwork in the mail today for his life insurance so that is more paperwork to take care of. Then their are the banks, house, car, etc..... All the paperwork should keep me busy for awhile... I got all the pictures printed and framed for the Celebration of Life - unless I decided to change some of them. I'll set them out on the table this weekend and see how they look and flow. I think that mentally I'm starting to gear up for next week. As I told the counselor on Tuesday, my emotions have scabbed over a little bit and the scabs will be torn off next week at the Celebration of Life service and all the motions will be raw again. One day at a time...

The lonely evenings....

I can make it through the day by staying busy but the evenings are my undoing. It's after dinner, when we would go sit down to watch TV, read, he would surf the web on his laptop, etc that are extremely hard for me to get through. At least Morris has gotten to where he comes and gets up in my lap for the evening - well he does if I'm sitting in Larry's big recliner. I guess that time of day may be what takes the longest to adjust to based on what other people say who have lost a spouse. I was always a list maker but now I make sure I have things to do on my list for the next day so I have a reason to get up other than to feed His Majesty. The funeral home called me yesterday to let me know the printed materials were ready to pick up which I did today. They included the Memorial Cards, Thank You cards and laminated obituaries. I got them home and didn't look at them for an hour or so because I knew it would be Kleenex time when I did and I was right. However, the Memorial Cards turned out really nice and it was good for me to be able to select the verses, pictures, etc and do the design myself - much more personal. Then this afternoon, I have been printing and framing pics for the Celebration of Life service. I can loose myself in the computer process but it is also sad to look at the pics. Kind of a double edge sword.... I'm going out to dinner tonight with a neighbor lady who lost her husband about 5 years ago. Maybe the evening won't be so lonely.... The 2-week day is looming this Saturday and I'm planning to spend the day cleaning out the garage - my stuff, not his. One day at a time..

Another day

I spent some time this morning going through a couple of boxes of misc stuff that Larry had while looking for some things to use for the Celebration of Life. He sure didn't keep a lot of personal stuff! However, I did find his high school letter sweater from 1962 and it is in excellent shape. Cross country running was his thing in high school and he was very good at it. Had lunch with some friends today who are handling the lunch, etc for Larry's Celebration of Life gathering. Bittersweet lunch! They gave me some really good suggestions on things to do or not to do that day. I was going to try a different bereavement support group tonight but decided not to and will just stick to the one-on-one's with the counselor for the next 3 weeks and will then try the support groups again. I'm still mulling over some of the stuff she said yesterday. If I wasn't so personally involved in the process, I would find some of it interesting such as how the emotions come and go. Little things can trigger a good cry and other times the same thing won't especially bother me except for making me sad. I continue to be overwhelmed with all the cards and emails I have received and continue to receive. One Day at a Time...

Grief

I called the hospice bereavement counselor this morning for an appointment, she had an opening for this afternoon so I took it. I asked her where to meet her and she said "Peppi's House." Well I didn't expect to ever go back there! Needless to say, I was in tears by the time I walked in the front door. I looked at the calendar and realized that it was only 2 weeks ago that we moved Larry to Peppi's House from the hospital. Two weeks isn't very long but to me it seems like a lifetime ago..... I just can't believe that so much has happened in 2 weeks! Anyway, we talked a lot about grief - how people react differently, things to definitely do (such as don't fight it), how it affects people differently, how people expect us to react, etc. A wise person said "We grieve for someone as deeply as we loved them." Wow! Another wise person said that the 4 phases of loosing someone are "(1) Accepting the reality of what happened (2) Feeling the pain (3) Reorganizing your life and (4) Living your new life." I think I'm 95% in the first 2 phases and maybe 5% in the 3rd phase since some things were necessary for me to start doing such as filling my own pill box, writing checks out of Larry's checkbook, being trained by Morris, etc. I really like both of those quotes and they hit home. She is very interested in how I'm using the blog - not only as a journal for me but as a means for others to follow me on this journey which is, as we know, One Day at a Time....

Letter to Larry 12-26-11

Hi Sweetheart, It has been 9 days since you moved on and it sure has been lonely. However, today for the first, time I felt like I just may make it. My head always knew I would but today I woke up and felt it in my heart. Even Morris was better today which makes my day better. I have learned to give him his tuna even though I still can't stand the smell of it. He spent more time on your desk this morning in the sun so maybe he is adjusting also. I slept better last night and maybe that helped my attitude today. It's sunny and 60 degrees today so I walked up to Starbucks this afternoon for an iced tea while listening to your playlist on the iPod. I think you would be surprised at some of the people I have heard from since the news about you has gotten out on the electrical grapevine. Even Frase called... I still haven't met him but at least now I've talked to him. Today I did the 2011 section of our "Through the Years...." scrapbook. We sure had a lot of good memories for most of this year and it was hard to get the Little Rock trip on one page. Of course the last 2 months were no fun doing but I managed to get them down with only 2 pieces of peanut clusters. I miss you terribly but I'm trying really hard to take it One day at a time.. like we talked about. Love ya!

I made it!

Yesterday was a very long, downer day but I made it. I got the first week and Christmas all done at the same time! Morris was really restless yesterday and just wouldn't settle down until about 7 p.m. when he finally settled down on my lap. We stayed up way past our usual bedtime and needless to say, I kept watching the clock for the time last Saturday night when I got the call from hospice. Once we went to bed, it was a long time before I went to sleep but finally did and awoke to a new day. Today was only a 2 Kleenex day which was really good - especially considering that the obituary was in today's paper. Not sure what all I did today but I kept busy. It's good that I can get busy on the computer editing pics, etc and get lost in it. I'm getting ready to go over to a friends for a visit which is NOT a Christmas visit... 8-) I think some people are worried about me since I don't want a lot of company, etc but I'm doing o.k. One day at a time...

Here is the link to the obituary if you are interested. http://www.legacy.com/obituaries/tucson/obituary-print.aspx?n=lawrence-mcclelland-larry&pid=155170201

Triple Yuk!

What a long week it has been and what a lonely, lonely day today was. Lots and lots of Kleenex used this morning! Since it was Saturday, let alone Christmas Eve, I couldn't fool myself that he would be home later in the day. Even Morris moped around today... This morning he was out in the garage and got up to the highest spot on a high shelf, on top of a box, and just sat up there by himself for the longest time. He came into the office for about 2 minutes and then left. Too bad there isn't a support group for pets.... I couldn't stand to look at Larry's empty desk so I put his business cards back under the desk mat and some papers on it. It doesn't look so empty now. I apologized to Morris but I switched our chairs back in the living room. Larry's chair is just to big and uncomfortable for me - my feet don't even touch the ground.. Morris slept on my lap last night instead of stretching out beside my legs like he usually does/did in Larry's chair. I guess I will have to go looking for a chair that meets both of our needs... I walked up to Starbucks (2 miles round trip) this afternoon and got a hot mocha while listening to Larry's Playlist on the iPod. That used to be our morning walk and it's been a couple of months since we did it. I decided that the 4 miles round trip to McDonalds was more than I wanted to do plus they don't have decaf mocha.... Maybe I will sleep better if I get back into the habit of walking every day like we used to. I go to sleep with no problem but then wake up after about 4 hours and can't go back to sleep for 1-2 hours. I eventually do go back to sleep but it isn't the same as a good 8 hours sleep. We used to talk about how fast time passed - it would be Sunday and we couldn't believe another week had zipped by. Well, this week, each day has been a very, very long day - certainly not like they were 2 months ago. I also put a picture of us in the office today which I needed to see when I'm at my desk. So... 1 day of the 3-day weekend down and 2 more to go.... One day at a time!

Double Yuk!

I just wish I could go to sleep, wake up and Christmas would be over! If one more person wishes me "Happy Holidays"......... I had to restock my supply of peanut clusters today while at the store! I see that Starbucks is going to be open on Christmas so plan on walking up there since McDonalds will be closed. I've had lots of invitations but Morris and I decided to just stay home and do our own "non-Christmas" thing - whatever that will be. I cleaned Larry's desk off today. Actually, it had an inch of dust on it and then just decided to go ahead and clear it off since I'm going to use it because it is in front of the window. However, now it looks so bare and depressing. I thought if I used it then Morris would get back on it like he used to do and spend the morning laying in the sun. Gotta put something on it tomorrow.... I went to a Spouse's Bereavement Support Group today that is run by Peppi's House although the mtgs are at a different location. I think I will try the other one they have and see if it fits better... This one is mostly people in their 70's or more and most of them lost their spouse 1.5 - 2 years ago. I think it may have become a social event for some. I did get some good out of it so it wasn't a total loss. I sent the email out today letting people know when the Remembrance is going to be. Thank goodness I had my new stock of peanut clusters. Part of me will be really glad when that is all over and the other part of me says "what will I do then?" and that scares me because it seems so final and then I have to look down the road at a life by myself. One day at a time...

Yuk

It's getting to be the time of day that I have the hardest time with - when if he was at work, he would be coming home but doesn't come home so starts another lonely evening with just me, Morris and an empty chair. Where's the kleenex..... The days don't bother me since I stay pretty busy with errands, working on the computer, etc. I'm going to the support group tomorrow that Peppi's House has for spouses. Maybe I will learn something magic to help get through the evenings.... Saturday is looming just around the corner and I'm really NOT looking forward to it! We weren't real big on Christmas but still it's hard to reconcile the "Christmas Spirit" with how I fell - Bah Humbug! I don't want to hear one more "Happy Holidays". I was reading the obituaries in yesterday's paper to see how they were written and noticed that 2 other people had passed away at Peppi's House the same day that Larry did. I noticed some empty beds but didn't get a chance to ask the nurse. I'm trying to figure out what to do with an unused marriage license.... I brought it in from the car but haven't looked at it yet. On a lighter note, I Morris let me win a round this morning when he waited for me to get dressed before demanding breakfast. Actually, I think he just wanted to lay in bed a little longer because when I don't sleep good then he doesn't either. One day at a time...

Another day....

Well,,,Morris won another round this morning! I just didn't feel like getting up this morning so laid in bed all the way to 6:30 a.m. 8-) Well that was way past his breakfast time and he was not going to wait another 1/2 hour until I showered, dressed, etc to get his tuna. So yes, I gave in and fed him first. Then he goes back to bed for a nap.....

I met some girl friends yesterday for wine and pizza at our neighborhood pizza pub. It was nice to get out and do something "normal" even if we did review the obituary, memorial card and start making plans for the Remembrance.

I have had some phone calls from people that Larry used to work with and one was a partner in the agency at one time. I have never met him but know of him. Today I got a call from the person who bought the agency from Larry and his other partner. I really teared up at some of the cards I got today and had to have some more peanut clusters..... I seem to do o.k. during the day since I'm really busy with all the things that I have to get done, etc. My mind kinda says "he's at work or someplace and will be home later". I think the evenings are the worst. We would eat dinner and settle in to watch TV while reading the paper, etc. That empty chair is really EMPTY and I miss talking to him about something on TV, what we are going to do the next day, etc. Sometimes I comment to Morris but he is usually asleep on my chair's footrest (actually Larry's chair) and he gives me a dirty look when I wake him up. It gets empty in the office and I miss him not being at his desk with Morris looking out the window. Morris doesn't spend near as much time on Larry's desk as he used to. Sometimes I get a little panicky at the empty days and nights ahead and then try to remember One Day At A Time...

Me and Morris

I admit it! Larry was the Chief of Staff for Morris and I was a distant second. Morris and I had a talk last night, well actually I did most of the talking, and I told him that he is just going to have to meet me half way on stuff. I've learned to ignore the small of tuna (Chicken of the Sea Light Chuck is preferred) which I can't stand, so he can continue to have his snack of tuna. I am tolerating sitting in Larry's hugh, leather recliner which does not fit me at all just so Morris can have a place to sleep in the evening. My chair has a space between the seat and leg rest so he can't lay there. However, I have drawn the line at getting out of bed in the morning and going immediately to the kitchen to feed him. I head for the shower first thing, dress and then go to the kitchen. Larry always got up, immediately went to the kitchen for coffee and fed Morris his breakfast. Now he has to wait about 20 minutes for me and you would think the world was ending. This morning he just stayed on the bed until I headed for the kitchen so I guess I have won that battle. The favorite fresh water supply for Morris was in the master toilet bowl. Morris was not a happy camper when we put the riser on the seat for Larry since Morris couldn't reach down far enough for his drinks. Georgia took the seat off last Thurs and today is the first time I've seen him back in there getting a drink. It is easy to see that Morris does miss his best buddy and I do feel for him. It was 4 years ago last Thursday that Morris adopted Larry and they have been inseparable since then. This morning, for the first time, he came into the office and laid on Larry's desk while the sun was shinning in the window.

Now as for me..... It was good to get back to walking this morning after breakfast - it's been along time. Larry had done a play list on the iPod of his favorite music so I listened to that as I walked. Only took 2 Kleenex's for the 1 1/2 miles -pretty good I thought. I wrote Larry's obituary this afternoon and it only took me 1/2 a bag of peanut clusters to get that done. This morning I did the memorial card using a template the funeral home gave me. It's kinda neat that I can choose background, verses, add pictures of him, etc. For you who haves asked about sending flowers, etc, I'm requesting that you make a donation in Larry's name to Peppi's House, 5301 E. Grant Rd, Tucson, AZ 85712. They said you can just put him name in the memo section. The Celebration of Life will be at hour home on Jan 6th at 11:30 a.m. Invitations for spending Christmas Eve, Day, etc are coming in but I think I just want to spend the time with my little buddy.... One day at a time..

Life goes on

I spent 2 hours at the mortuary today and it all seemed so surreal and like I was dream walking. It didn't seem possible that I was making decisions about Memorial Cards, picking out an urn, talking about Larry's obituary, etc. The death certificate arrived while I was there so I had to review and approve it. Instead of going with the usual Memorial Card with The Lords Prayer on it, I doing one that I can design using a template and selecting verses from a book and also add several pictures of Larry. It just seems more personal and really about him. Tomorrow I start the obituary which is going to be very difficult to do. Some people have suggested that I let others do these things but to me, I am doing them as a tribute to him so it's important that I do them myself - besides I probably knew him better than anyone else. Several neighbors came by to visit me and I had several phone calls today from friends and people from Peppi's House (hospice) expressing condolences. The visits, phone calls plus, cards and emails mean so much to me right now. Morris is still kinda moping around and missing his buddy. One day at a time….

I said yesterday that I wasn't going to continue the blog. However, today I realized that I need to continue it as the next chapter for me. I'm not sure I will write it every day but probably several times a week until I don't feel the need to any more.

He's gone.....

My lover, my companion, my husband in spirit, my traveling buddy and my very best friend was taken from me last night at 9.55 p.m. The end came rapidly and there wasn't time for me to get back over to Peppi's house but the nurse and patient tech stayed with him so he wasn't alone. When I got the call, I threw on some clothes and was on auto pilot while driving over there. They met me at the front door and I didn't break down until then. I have never sobbed so hard in my life nor felt so alone even though friends got there soon after I did. We have worn wedding bands for about 3 years. I was suprised that his fit me when I put it on after the nurse took it off his finger so part of him did come home with me..... Between my divorce and moving in with Larry, I lived by myself for 24 years and was alone but not lonely. Today I'm lonely besides being alone. I came home last night, turned the electric blanket on and crawled into bed with a new box of Kleenex. Morris crawled up beside me on the bed and stretched out right next to me while purring. He laid there for the longest time and then he went over and laid on Larry's side of the bed. That alone was good for a few more Kleenex's. Larry's very favorite song is "Two Out of Three Ain't Bad" by Meatloaf. I think of it as he won the liver and kidney transplant battles but lost the cancer battle. For a long time, my computer's screensaver has said "Life is a one-trip salad bar" and we truly believed that. And my oh my, what a feast we had for 12 years and those memories will get tme through this difficult time. One day at a time....

Thank you for all your cards, emails and facebook messages - they mean so much to me. I don't plan on doing anymore regular posting to our blog at this time but may from time to time in the future.

Such emotions...

Not much change with Larry today. The nurse says his sleep is deeper since they can reposition him or wash his face and there is no response. He doesn't grip my hand when I hold his but neither does he pull his away like he did yesterday morning - there just isn't any response today. He just lays there peacefully in bed and sleeps with a light snore at times. The breathing is a little more rapid at times and at times he pauses breathing and then resumes. But oh the emotions.... My years of working in a man's world, where emotions were not allowed, provided me with a very thick skin. But that skin has split wide open and I simply cannot remember when I have ever felt so much hurt, loss, grief, sadness or have cried so hard - if ever. I spent all those years "fixing problems" and it's so hard to accept that I can't fix this one. I'm known for my "To Do Lists" and now I sit staring at a piece of paper , unable to write anything down when I need to be making lists of people to notify, things that will need to be done, etc. I've been given several pamphlets on things that do or will need to be done but reading them is as far as I have gotten. At least I did get the mortuary issue taken care - or at least the process was started with them and can be completed later. I feel so disloyal and guilty when I think about those things and he isn't even gone yet.... And poor Morris.... it breaks my heart when I wake up in the night and see him sitting by Larry's pillow and staring at it. One day at a time...

It was only four weeks ago today......

.....that our life was totally turned upside down and will never be the same again! I'm just in awe of how much can happen in such a short amount of time. I'm still trying to come to grips with the diagnosis while hearing the doctor say his guess is we only have 3-4 days left. He is quick to follow that with "sometimes the patients surprise me and last longer than I think they will." He was restless this morning when I came in and showed it by using his right arm to scratch is head, pick at his clothes, etc. The left side never moves since that is the side affected by the stroke. The doctor said he wasn't in pain but asked me if the restlessness bothered me, which it did, so they upped his med a bit and that calmed him down. His breathing is more rapid than yesterday and he has some short periods of not breathing before the breathing continues. Mostly, he just lays there and peacefully sleeps. There isn't as much sound of congestion in the lungs today as there was yesterday so that med is working.The kidney still seems to be working o.k. He has lost almost of his hair by now. The beard got very thin so they shaved some off yesterday when he got his bath. Now he has a goatee and mustache which doesn't look that bad. I spent some time this morning with the bereavement counselor this morning which I needed. My brain (the right thing to do) and heart (emotions) are definitely not in sync. I know I shouldn't feel guilty when I leave here but I do. I know I can't "fix" this but I want to try. I know I shouldn't feel guilty when I go out to a nice lunch with a friend but I still do. I know I need to get organized on what will need to be done but feel guilty when I start to work on the lists. I am simply not used to not being able to control my emotions! I don't like this "not being in control" and I'm simply not used to that feeling. But....one day at a time...

Peaceful, restful, pain free sleep

I continue to be amazed at how peaceful he is here in hospice as compared to the hospital. He is in a peaceful sleep and no one is bothering him. They wanted to give him a bath today so before they did, they gave him his pain killer shot, waited a little while for it to take effect and then did the bath, changed his gown, gave him a shave, etc. He wasn't responsive but it didn't make him restless and agitated like that would normally have occurred in the hospital when he was in pain. There is some fluid build-up starting in the lungs and you can hear it when he breathes. They give him something to help dry it up and suction when needed. He is getting the shot of stuff to help him not reject the kidney which I am thankful for. Otherwise, he just sleeps which is the second day like this. It is soooooo good to feel I can leave here and don't have to spend all day here. I come in for awhile in the morning, then leave for lunch or errands and then come back for awhile in the afternoon. I go home around 5. Tomorrow a friend is coming by and we are going to lunch. I eat but I don't really taste it and I sleep but don't feel rested - but I go through the motions. I wasn't aware of it but I know 2 people who volunteer here at the hospice place. One will be in later today and one on Sunday. It is obvious that Morris misses his buddy. Last night, in the night, I happened to open my eyes and Morris was standing by Larry's pillow looking down at it as is to say "where is he?" Georgia sets in Larry's recliner when we are at home and Morris is right up there with her like he is with Larry. Morris doesn't like my recliner because the leg rest is open so I guess I will have to switch to Larry's chair where he can stretch out along side my legs and sleep which is what he likes to do. He has also finally gotten me trained to adhere to the feeding schedule he had trained Larry for. I continue to very much appreciate your email of support. They mean so much to me and I reread them for extra boosts of support when things are looking dark and I think I can't handle anymore of this. But.....One day at a time.

It was the right decision

I came into Larry's room about 7:15 this morning and he was softly snoring and sound asleep like he would be at home. There was no one coming into take blood, get his vitals, wake him up to take pills he could barely swallow, etc. He has slept all day like that and I've been told that that will probably be the norm from here on out. Keeping him comfortable is the guiding principle from here on so I'm fine if that means he sleeps all the time. Plus, apparently that is just what the body does in this situation when it is shutting down. He had only had a couple of episodes of restlessness since he got here of wanting to get out of bed but they didn't last very long and then he laid back down and went back to sleep. I actually got outside during the sunshine today! When he was at UMC, I would get to the hospital when it was dark and it was dark when I went home. Georgia and I even left for lunch today and to pick up some stuff at the cleaners. I don't fell I need to stay here all the time like I did in the hospital. There are noi docs coming by, they take good care of him and he is sleeping peacefully. I still woke up about 3 a.m. this morning and couldn't go back to sleep but maybe tonight will be better... Georgia and I went over to the mortuary today while she was here and can help me with some decisions. I just needed to get some things started so when they get the call they have some basic information. It just seemed so unreal to be setting there and discussing such things. It is really hard for me to comprehend everything when it is all happening so fast - I didn't have time to adjust to the diagnosis before we had to deal with the next phase which was hospice. I talked to the doc this morning and we are going to keep him on a low dose of immunosuppresent drug so hopefully the he won't reject the kidney to soon. Its' a drug they can inject so he doesn't have to take the pills. That was Dr. Whitman's suggestion when he called me yesterday afternoon just before we moved him. At 3 a.m. this morning, I knew that I couldn't stand to see him reject my kidney that had given us such a wonderful 3.5 years. The body may reject it naturally but at least it won't be because we withdrew the immunosuppresent drugs. So far, it is working fine. I can accept the rejection if it happens naturally but the feeling is that the cancer, or side effect, will take him before it gets to that point. One day at a time...

The Next Chapter

We moved Larry to hospice late this afternoon. The docs told me again this morning that it was the best solution so I asked to talk to the hospice people. The admissions nurse came to the hospital, went over everything and I signed the papers. In my mind, I knew it was the right thing to do but emotionally, it was one of the hardest things I have ever done in my life. I think part of the reason was that in doing so, I was admitting that the disease was winning. I still haven't gotten used to the diagnosis let alone being ready to put him in hospice! I talked to Jennifer earlier in the morning and she supported the decision. Georgia, Larry's sister, arrived at the hospital while I was meeting with the hospice nurse so she was able to listen to the program and support me when it came time to sign the papers. Many, many, many tears were shed today. Larry was actually a little more alert at times today so I could talk to him about stopping meds that were not going to change anything and that we would focus on keeping him pain free which is his wish. Still it was so hard! We will keep him on a med to prevent seizures which can occur from the tumors in the brain and one to slow the kidney rejection.All other medication is stopped except for the pain meds. His kidney doc feels that the cancer will get him before kidney failure will. The hospice facility is very nice and homey. The whole focus is to keep him comfortable while nature takes it's course and he is allowed to die naturally but pain free and comfortable. Isn't that what we all want? The hospice place also puts a lot of emphasis on supporting the family and making sure their needs are met. I don't know how many days we will be on this next phase of the trip but all I can do is to make sure Larry isn't in pain, I take care of myself so I can look after him and treasure the wonderful 12 years of our memories when the sky is the darkest. One day at a time...

Not a fun day

The "not so good news" just kept coming today, wave after wave. It was just all overwhelming by the end of the day. It started with the first docs letting me know he has developed pneumonia which wasn't a surprise to them but was to me. Then I found out from neurology that there is nothing they can do about the stroke. They would usually give him blood thinners but since his platelet count is pretty low, they can't risk hemorrhaging. At least the tumor is in a place that basically just causes weakness on the left side of the body but not the face. Then came oncology saying that chemo is out for now because he is too weak and the pneumonia and stroke changes everything. She saw him on Friday and was amazed at the change in Larry since then. Then radiation says that he won't have any more radiation because he can't cooperate in the treatment and the pneumonia and stroke take first priority. But, the radiation did shrink some of the tumors and the steroids stopped the bleeding around some of the brain tumors. Then comes the Palliative Care doctor who lets me know that the docs all agree that I should consider hospice. I asked if Larry has a month left or 6 months and he said he thinks it will be closer to a month if that long. I guess I knew all that subconsciously but it was another thing to hear someone say it. It is just all too much too fast! Four weeks ago we were planning our next trip which was going to be to finish the drive up the Pacific Coast on Hwy 1 from San Francisco to Seattle (we've already done San Diego to San Francisco) and then go over to Victoria, BC before coming back home through Oregon, Sacramento, etc. And now, I'm making decisions about hospice....... The last coherent conversation I have had with him was yesterday morning. He just sleeps and then gets a little agitated when the morphine is wearing off and the pain comes back. Then he gets a shot and soon all is well again. His sister will be here tomorrow around noon and I'm looking forward to having some support while making some very difficult decisions. Your emails of support are greatly appreciated. I save them and then read them during the day at the hospital when I'm needing a little boost. One day at a time....

Plan for the day

Larry is about the same as he was when I left last night. I understand he got rather anxious in the night and was trying to get out of bed but they got him calmed back down and then he slept the rest of the night. There is a big dry erase board in the room and the "Plan for the day" is Pain control consult w/palliative care, Oncology consult due to low platelet count, Neurology consult for the stroke and a MRI which will have to be done with conscious sedation due to him being claustrophobic. As for me, emotions are very close to the surface. The staff here are wonderful - besides taking good care of Larry, they also keep an eye on how I am doing and are always wanting to know what they can do for me. I'm getting pretty good at typing with one hand since he won't let go of my hand. One day at a time...

Another Sunday in the hospital

I've spent 3 of the last 4 Sundays in the hospital..... Jennifer and I were plesantly suprised this morning when we got to the hospital and Larry was awake and talking. They finally got the pain under control during the night and it make such a hugh difference. He slept most of the day today but would wake up for a few minutes and usually we could talk to him. Even when he was asleep, he would reach for my hand and hold on to it very tightly. They took a chest X-ray today to compare it to 3 weeks ago but don't know the results yet. However, we did get the results back from the CT scan that was done yesterday. I don't know all the details yet but the internal medicine doctor did tell me that it shows there is an area of the brain that is not getting blood which means it a stroke. The Neuro doc was going to come in to talk to me but got tied up with an emergency so I won't get more information until tomorrow. I don't know what caused it, what the effects are/will be or how it can be treated. The scan showed that some of the tumors are a little smaller so the radiation seems to have helped on those. This all just seems like such a nightmare and is still hard to believe. However, after yesterday, I think reality is starting to hit me and I can see the roller coaster raid that is ahead of me. I just never know when I walk in his door in the morning what I will see. He could be bad like yesterday or good like today. Just before we left last night, the nurse talked to me and showed me a purple sticker on his door by his name and a purple form in his chart that the doctor had signed. He is listed as DNR (do not resusciate) or some hospitals call it AND (allow natural death). We signed the living wills and they were put into the hospitals computers back when we did the kidney trasnsplant so I did not have to make the decision - Larry had already made it. After the nurse talked to me, they put a purple wrist band on him. It's just a precaution at this point but I'm glad it's done. Tomorrow is going to be a busy day since besides the regular docs, we have pain management coming by, the neuro team, pallative care, and Dr Whittman, our nephrology doc, has hosptal rounds this week for his office. One day at a time....

Another long day in the hospital

Today was something like the 13th day in the last weeks that we have spent in the hospital. Not much fun! They don't know if the severe back pain is from the brain tumors, or where the cancer has spread to the bones or something unrelated to the cancer. They are running blood test and did another CT scan this afternoon to compare the tumors in the head to the ones that were there 3 weeks ago. They gave him a lot of morphine for pain when nothing else would help but it was still pretty bad even with the morphine. He would get really agitated, delusional, try to pull out his IV and cather, try to get up, etc. I just lost it today at one point listening to him when they were trying to get him on the CT table and he was crying out from the pain. He has been in a deep sleep since about 3 p.m. when he got back from the CT scan. I noticed that there is a lot of his hair on the white pillow that has fallen out. At home, we have brown pillow cases so I didn't see it although I could tell that it was getting thinner. I was also rather emotional today since we had planned on getting married this morning at home but..... We got our marriage license last Tuesday before he got so bad. Last night we joked about doing it here in the hospital today by the Chaplin but he was just too out of it today. We wanted to do it while Jennifer was here. But sometimes things just don't work out... One day at a time..!!!!!

Back in the hospital

The day didn't start out very good when Larry slid off the bed about 4:15 this morning when he tried to get up to go to the bathroom. He couldn't get up due to the severe pain in his back so we eventually had to call the paramedics to come lift him up. He just wanted to sleep and was in pain so no radiation today. However, we did make it to the Cancer Center and our appt with Dr Garland. She wants to do chemo but (1) he needs to finish radiation first and then have about a weeks rest before chemo (2) she need to get with pathology and get more specific on the cancer cells to know which chemo to try and (3) she has to get with Larry's nephrology doc to determine which chemo's won't damage the kidneys. Not a simple process! We still got a prognosis from her of months to maybe a year - depending on how his cancer responds to the chemo. She has one patient that is 2 years out. We knew it had already spread to the brain and liver but she said there was also a couple of spots in the other lung and a few spots in the back part of the abdomen. The severe back pain is a major issue right now - it has become so severe that he can barely turn over in bed. It hurts even when lying still in bed. So.....I called the kidney doc and he said "let's admit him and get this pain under control, find out what is causing it and get him hydrated". He couldn't get out of bed to get to the car to come to the hospital so back came the paramedics. This is a guy who almost never complains of pain so for him to say it's almost unbearable means is really bad. But he is in hospital now and they gave him a hugh shot of morphine so he is resting. What a roller coaster ride and I think we are just barely leaving the gate.... One day at a time..

Some days are diamonds....

I may be the only person who remembers the John Denver song that says "Some days are diamonds and some days are stone......". That's kinda how I feel about our days. Today was not a diamond day....We are soooooooo glad that we get to go to the cancer doctor tomorrow for our first official visit. I may not like what I hear but at least we will hear something and hopefully get a plan going. I had to call Larry's kidney doctor today since he just can't swallow one of his immunosuppresent pills anymore. It is HUGH and uncoated so is always kinda hard to swallow. The radiation doc said that sometimes patients develope a problem swallowing when going through radiation. He isn't having a problem with swallowing his other pills - just this one. So, I called Dr Whittman and they make it in a liquid so we are going to try that for a few weeks. Not taking the drug in one form or another is not an option if we want to hang onto the kidney. Unless the radiation machine goes down again, we finish radiation on Monday. Jennifer arrived this afternoon and is really good to see her and have her here for a few days. I'm so glad she will be here to go to the doctor's appt with us tomorrow. One day at a time...

Back on track

The machine was working today so radiation happened this morning - 7 treatments down and 3 to go. I asked the Doctor how many beams of radiation he gets per treatment. He said there is a beam that comes in from each side and it does the whole brain. There are too many tumors to do focused beams. Kinda interesting.... We see the same people every day since they are all scheduled around the same time on different machines for different cancers. One guy's cancer started in his tonsils which I have never heard of. It was good to have the house cleaning people here today and get the house all cleaned. They work in teams of 4 and go through the house like a whirlwind. One does bathrooms, one does floors, one does the kitchen and one does dusting, etc. The exterior of the stainless steel frig looks like new. I have a shelf full of products I have bought to clean it and could never get it looking new. They use a plain damp cloth (with just water) and then dry it with a rough, clean cloth. I couldn't believe it! After watching them work, I decided to take a nap this afternoon when Larry did. I usually feel worse when I get up from a nap and today was no exception. Of course UPS ringing the door bell about 30 minutes after I laid down and then a phone call an hour into the nap, when I was actually asleep, put a stop to the nap. But it sure felt good to just lay down on the bed and read. Radiation tomorrow and then we pick Jennifer up at the airport around 4:30. One day at a time....

Larry's new hair cut

Here is Larry tonight with his new, shorter haircut. His hair is definitely thinner after starting radiation. We think Robert did a really good of cutting it shorter but yet keeping his basic style. It's about 1" long on top. It goes good with the beard which is another story. Since Larry can't trip his beard with only one hand his options were to cut the beard off, me learn to trim it or go in to Robert every couple of weeks and let him trim it. Needless to say, Larry chose the last option. 8-)

Some good news today

The radiation machine is still down!!!!!! Hopefully it will be ready in the morning. We just want to get our 10 treatments over with. But, we got a call from Dr Garland's office, she's the lung cancer specialist, and they changed our appt from Dec 19th to this Friday, the 9th. This is a really important appt and we are very glad that it will be while Jennifer, Larry's daughter is here, so she can go with us. But that change means we had to change another doctor's appt but that's o.k. Larry seemed a little stronger today but maybe it's because he hasn't had radiation in 4 days. Anyway, he sat at the table in the kitchen for dinner tonight instead of eating in the recliner. It's amazing how little things mean a lot. One day at a time....

Machines!

About 10 minutes before we were to leave the house this morning for today's radiation appt, we got a call that the machine was down so they canceled us for the day. Apparently they run some testing every morning before they start and if anything doesn't come out o.k. then they can't do the treatments until a technician gets everything checked out. At least we didn't get there and find out it was cancelled but we were looking forward to finishing treatments on Thurs and now we should finish on Friday...we hope. They rescheduled us for 2:30 p.m. tomorrow assuming everything is up and working. Oh well....can't do anything about it. It was a long night last night since Larry woke up around 1 a.m., went to the bathroom and fell. He was finally able to turn over and get up with my help. At least he didn't break anything - only a scrape on his arm. The guy came today to install grab bars in the toilet area, raise the seat and install a grab bar as you step down into the shower. None too soon..... Of course after that episode, there was very little sleep for the rest of the night. A friend of Larry's for around 35-40 years came for a visit this afternoon and Larry really enjoyed the visit. After sleeping all morning, Larry was feeling well enough for us to all go out for a late lunch. That's the first time he has gone out to eat since he got home from the hospital a week ago today. Big decision for tomorrow is how short to get his hair cut... 8-) One day at a time...

Another week begins

Oh for 8 hours of interrupted sleep....... After Larry took a shower this morning he came into the kitchen, took his coffee and sat at the table drinking coffee and watching the Today Show while I fixed breakfast. For a little while it was what we have done many, many times and the world seemed as it used to be. But after breakfast he was so tired that it was time for a nap. Some friends came over today and he told them that it was good to see someone without a stethoscope around their neck.... 8-) The headaches are much better so I guess the radiation/steroids are working a little bit. He has only taken pain medication a couple of times since he has been home. The use of the left hand comes and goes but at it's best it is a long ways from normal. At other times it is completely useless and doesn't have much feeling in the hand. The doctors said it was about 50/50 that use of his left hand would return after the radiation/steroids. At least he has good use of his left shoulder and elbow - just not the hand. We're looking forward to getting the last 4 radiation treatments done this week. It will seem strange to have an extra 2 hours in the morning to do other things. Thanks to everyone who has sent emails of encouragement, prayers and good thoughts. We really appreciate them. One day at a time...

Nice winter day

We don't have many rainy days in the desert and we have even fewer real winter days. However, today was our second consecutive windy, rainy day and another one forecast tomorrow. Such a nice break from sunshine and blue sky's. So much for sleeping in this morning... Larry's sleeping pill didn't work last night after about 2 a.m. By 3 a.m. he was wanting to talk. But....we didn't get up until 6 (usual time) and there was no alarm going off. My antennas seem to be tuned so that I wake up when he is awake. After breakfast he took a 2 hour nap and then wanted a hot mocha so we went to Starbucks which also got him out of the house for a bit. Some friends came over today and we really enjoyed the visit. Larry laid down on the sofa after they left and I sat in my recliner for the next 2 hours - not really napping but just resting and reading at times. Tomorrow will be another slow day and then we get back to our busy daily routine. He is still debating how much hair he is going to have cut off when he goes in for his usual hair cut on Tuesday. One day at a time...

Not a bad day....

It is so hard to believe that it was only 2 weeks ago today that I took Larry to the ER for what we thought might remotely be a heart attack or stroke. Never, in our wildest thoughts, did we think we would come home with a diagnosis of Stage 4 Cancer. It still doesn't seem real. Anyway, we can't change it so we have to deal with it. The usual trip to radiation today. We are so looking forward to not having to get up in the morning and head out to the hospital. We just want to sleep in and if we can't sleep, just lay in bed and enjoy not having to get up to go someplace. We had an appt today with our primary care doc - we have the same one. I wasn't sure how he fit in with all the other docs we have but he will be the one who will arrange hospice or just be there for us if we want to talk. His advice to Larry was "No matter what the specialist say, it is your decision on what is done and how much is done". He explained that the specialist will usually want to try one more drug, one more treatment because they don't want to give up. But it is up to Larry to say "that's it. Dr Giles said we need to keep "quality of life" as our guiding compass through all this. We came out of there feeling a lot better about everything. He also said we need to have a talk about what Larry wants if he is in the hospital and codes - does he want extreme measures taken to bring him back or not. Conversations that you never, ever want to have with someone you love. The doc also did the paperwork so I could get a Handicap Parking Placard which will make it easier. I was afraid he wouldn't use his wheel chair but he doesn't hesitate if there is much walking. He is just so very tired that walking more than just in the house is hard to do. One day at a time....

A long night last night

Larry has been sleeping really good at night since he got home from the hospital until last night. I don't think he got 3 hours of sleep so guess who didn't get any sleep either... Even Morris was tired today. He laid down for a nap after we got home from radiation and slept for a couple of hours which really helped. Meantime, I was doing laundry and going over to Walmart Pharmacy for my daily pickup. We ran into our first difference of opinion with doctors today.... The radiation doctor thinks Larry should change his oncology doc and go to one about 1.5 hours one way from us - way on the north side of town at a satellite office of the Cancer Center. We have an appt with Dr Garland on the 19th at the main UMC Cancer Center which is much closer to us. If we see the doc up north, we would have to continue with them for any chemo, check ups, etc. The oncologist we saw in the hospital said waiting to start chemo for a few weeks wouldn't make any difference which is what the cancer center said today when I called to try to change the appt. There aren't any appts sooner and they said it wouldn't make any difference in the outcome. So....we are going to wait for Dr Garland. Originally, they said he would have abut 15 radiation treatments but today said it would be 10 and today was our 5th. Larry was so exhausted this morning that we tried out the new wheelchair between the valet parking and getting to the radiation dept over at UMC and it worked fine. We are really looking forward to Sat and Sun when we get a break from the radiation. I'll probably wake up around the same time but sure don't plan on getting up at 6 o'clock like we are doing right now.

On a side note... I had my labs done when we got back from Arkansas and the doctor called me in because my liver function values were high. We redid the labs with the same results and then I had a liver ultrasound which didn't show fatty liver which is what he thought it was. Next was a referral to a specialist and a possible diagnosis of auto immune hepatitis which is where your body attacks it's own liver. More testing and today I got a call that the values are back down to normal so don't worry about it but have my labs done every 6 months which I already do because of the kidney donation. Talk about some good news! One day at a time....