Memorial service information
We are planning two memorial celebrations of Randy including photos, planned or impromptu comments from friends and loved ones, and feasting on his 5 or 6 favorite foods (all sweets)! The first will be held on Bainbridge Island on April 15 beginning at 2:00pm at the Island Center Community Hall, 8395 Fletcher Bay Road. The second on April 22, at 2:00pm, at the Wilsonville Community Center, 7965 SW Wilsonville Rd., Wilsonville, OR. We hope that you can attend one of these and if you cannot please celebrate him in your own personal way (a shot of good scotch, a boat ride, bugee jumping, a camping trip with your family, snow skiing, dancing, or anything that reminds you of his zest for life).

Some people have been asking if there are charities which were Randy's favorites for sending rememberences. I have listed these three in the papers: The Haven Institute (havenfoundation.org), the Musella Foundation for Brain Tumor Research, and Hospice of Kitsap County. We would also be touched to find out what your favorite charities are, so if you wish to express yourself in this way choose whatever moves you!

I have been very busy since Randy's passing and really haven't had or taken time for my feelings to surface yet. As things quiet down a bit I expect the reality will begin to sink in. For now it's hard to say much about my experience of the last week or so.

Once again I wish there were a special phrase for appreciation that is so much bigger than the "Thank you" we say when someone passes us the salt. If there were, it would still be inadequate to express my appreciation for the support and friendship I have and still am experiencing. Thank you! Warmly, Kellee

In the arms of many of his family and friends and with the loving wishes and prayers of many more (thank you all), Randy passed peacefully today at 2:05pm. We were told on Saturday morning that he probably had only a few hours left and he surpised us all with the fight he still had in him. Over the next couple days we will be planning two memorial services for him. One here on Bainbridge Island and one in the Portland area. I will pass on all the details and post more when I have some time to reflect and find words. Lovingly, Kellee

Dear Family and Friends
Randy’s condition has deteriorated very quickly in the last 24 hours and the hospice nurses have now indicated that they think he has only perhaps a couple days left. Jake and Wyatt are here and Thelma (Randy’s mom) and Kim and Jordan (my sister and her son) are here too. We are holding him and one another close and we can feel you all holding us close too. We are very appreciative of your loving support! Warmly, Kellee

Help-Local Wednesday March 28
There are a couple things I would appreciate help with :
1. Anyone going near Home Depot today? There’s something I need and while I don’t have to have it for a few days, the sale price ends today. The savings don’t really justify an extra trip but if someone is headed that way and is willing to shop for me please call me (206)855-4117.
2. This one is now taken care of! Jake has a clear plastic bird feeder that is attached to his bedroom window with suction cups and the birds are really using it now (so we don’t want to move it). I’d like to have one for Randy’s bedside window. I think they sell them at Bay Hay and Feed. I’d be grateful if someone would pick one up for me there. We have plenty of seed for it.
Thanks! Kellee

Be careful what you wish for!
That’s one of those lessons that keeps being presented to me over and over and over and I keep thinking I’ve finally learned it but here it is again.
Randy has made a real emotional shift. He’s no longer fighting desperately to hold onto his independence - no more “I can do it myself”. And the timing is good because his legs will no longer support him even for a few seconds. As I mentioned in the last blog I thought I wanted that surrender of independence because it would be so much easier to care for him and keep him safe. Now that it’s happening, it is easier to care for him, and I feel so very sad at the loss of this huge aspect of Randy. And like everything else in this process there are surprising little joys mixed in with the grief and hurting: I am quite honored by and tender around his new vulnerability.
May you find plenty of little joys mixed into your day! Kellee

A mind of his own
Occasionally when Jake and Wyatt were little I wondered if it might have been a better design concept if little ones were born without “a mind of there own”. I remember thinking it might work better if that type of independence developed gradually over time. I know it’s arrogant of me to question such things but I’ll admit that I wondered . . . and I’ll bet I’m not alone. Now I find myself with similar thoughts about this stage that Randy is in. When I hear him say, “leave me alone, I’ll do it myself” and he simply doesn’t remember that he can’t do it for himself anymore and that he hurt himself the last 10 times he tried, I wonder.

As to his condition, he’s still eating, drinking and sleeping about the same amount as last week and his vital signs are unchanged over the last week or so. He has lost a little more strength, primarily on the right side. The most significant changes I have seen have been that his logic, reasoning, memory and language abilities are slipping. I know this is what he most dreaded and so it’s hard to watch and as I alluded when opening this post, it makes it very hard to help him.

I arranged to have a nursing assistant here to help from 1-9pm each day and that has helped considerably (he takes their suggestions much more easily than mine). And since Tuesday, the first day we had an assistant here, his waking hours have become more erratic and several of the biggest challenges have come up outside of those hours. This morning, for example, he was up once at 6am and again at 9am. Both times he wouldn’t accept help and fell and hurt himself. Even though he’s only awake a few hours a day I’ve decided to try to get round the clock professional help. I don’t know how else to keep him safe. It will be some time before we can actually get that many shifts lined up but today I did manage to get most days covered from 9am-9pm.

The boys have been home about half the time: staying with friends for a couple nights, then coming home to reconnect and tell us about their adventures and pack to head out again. This seems to give them a sense of how Randy is, as well as some cheery times and an opportunity to relax from the stress. The hardest part for them, I think, is when Randy is trying to interact with them and not making any sense.

I’m surviving and enjoying fleeting tender moments with Randy, thanks to amazing support from friends and family. Thanks again! I’ve been doing some writing which is a coping strategy I’ve used since I was a teenager and I’ve felt especially compelled to write through this because I find myself coming to grips with much of this via some particularly vivid metaphors. I’m going to sign off now and work on one of those pieces now. Good night to all of you! Kellee

It’s hard to know that you are all there rooting so enthusiastically for Randy and I can’t bring you good news about his condition and yet I know you want to hear what’s up so here it is. His strength, language skills, the amount of food and liquid he’s able to consume and the portion of the time he’s awake all continue to decline, though more slowly than they did when he first got home. He has several hours each day now in a state somewhere between awake and asleep (after a few moments he nods in response if you speak to him- but his eyes are closed and he doesn’t speak and hardly moves). With great effort he eventually moves through this to a point where he can sit up and open his eyes and eat or drink or talk, though often figuring out how to speak seems quite difficult and occasionally he makes no sense at all. He has still been coming awake in the afternoons to welcome and hug friends and family who visit though it becomes harder for him to stay fully awake with them for any extended time.

He also wakes up enough to use the toilet and enough to go soak in his bathtub and still insists on making his way to those locations on his own (rather than using the bedside commode or having a sponge bath or even getting a ride in the wheel chair) though he has taken several falls doing this due to his extreme weakness and poor balance. Last night this was even more extreme and after a 4 hr. bath (he didn’t want to get out sooner) he couldn’t get out of the tub. I finally called the fire dept. to come help him out and that made him really mad and the adrenalin helped him to get out, then it took him another 45 minutes or so to crawl to bed and finally accept help to get in. It was similar this morning when he got up to go to the toilet. We have equipment and people here to help and he is very resistant to using these and I’m told that it is normal for people at this point to hang on quite vigorously to whatever independence they still can.

This morning (because of the trouble getting to and back from the toilet) Randy was awake earlier than usual. He announced he just needed some more chemicals to beat this thing and he asked to talk to Dr. Spence. We called Dr. Spence and he told Randy that he hadn’t ruled out the possibility that Randy could have another round of treatment, but he’d have to get stronger first starting by drinking enough to get re-hydrated. So Randy said I’m going to drink 3 (20 oz) bottles of Gatorade today. I put three on his bedside table so he can monitor how he’s doing. I hope he can do it but he has been trying all along and he has only been drinking between 10 and 20 oz a day lately. Hospice and the doctors have explained that this happens when the body begins shutting down and even though you want to and try you can’t drink “enough”. In fact I’m told if we tried to push him to drink more than he does naturally (with frequent gentle reminders) his body wouldn’t be able to use it properly and it would make him more uncomfortable. I guess my summary would be that while his physical condition continues to decline, I am clear that at this point he has not surrendered.

We have reached an important decision. Since it seems to be particularly hard for him to accept help and recommendations from me I have decided to hire a practical nurse who can be with him from about 1-9pm. This is the time that he seems most likely to be awake and when the most demands are placed on him (to take meds, etc). Thelma (Randy’s mother) as well as the hospice folks and several friends have recommended this. It was difficult for me to accept the suggestion as I wanted to give Randy the gift of my care. And I have become clear over the last few days that he accepts the care better from professionals, further they are more skilled and confident about how to provide it while I frequently second guess myself and don’t know how to help him. I was also reminded that it will allow us to enjoy our time together as partners rather than trying to figure out how to get along in the awkward roles of patient and caregiver. It seems to better preserve his dignity and will be a gift to me to be relieved of some of this responsibility.

So does anyone know of someone in the area they would recommend? It would need to be a practical nurse so that he/she can dispense medication. We have a list of agencies in the area and of individuals (unscreened) who have given their name to the hospice organization, but of course it would be great and potentially quicker to have someone who is recommended by someone we know.

On another practical matter I am in absolute awe regarding the outpouring of generosity and support we have received. I will never be able to describe how much it means to all of us! So many people have called and offered to do errands etc. and this is very helpful. I’m thinking of trying a new way of utilizing all the help that is being offered to me because I’m sometimes thinking, for example I could sure use some stuff from Costco (not the case today) if only I knew someone that was headed that way soon. What if I were to do special posts on the blog labeled “help general” for things you can help with no matter where you’re located, or “help local” for things that I could use help with locally. Then if you are looking for ways to help you can read the ones that apply to you and if you’re just looking for an update on Randy’s condition you can skip the “help” postings. And once the need is covered or no longer applies I can remove the post.
Anyway, I’ll give this a try and see how it goes. Thanks again! Kellee

Randy has been relatively stable since I last updated you and in the afternoons and early evenings he’s had nice visits with friends and family. We think he’s growing a little more dehydrated each day as he isn’t able to drink as much as is recommended, and his blood pressure has been a little lower each time the hospice nurse is here. He’s eating pretty well. He’s still weaker than his last few days at the hospital and it’s been 4 days or so since he has come down the stairs. In fact in that time he has only gotten out of bed to use the toilet or the bathtub. And, as pressure increases on the limbic system he is growing more easily agitated and sometimes gets confused and angry and lashes out and with his communication skills challenged and the confusion he’s experiencing it is sometimes difficult to even tell what is upsetting him.

I’ve been thinking that he would tell me clearly whether he was still trying to gear up for another fight or whether he was ready to stop fighting and surrender to whatever the future holds. Then I would know whether to push him to drink as much as possible and to keep giving him all his vitamins, and limit his skittles (sugar can add to dehydration issues per one of his nurses), or whether to just see to his comfort. I so want to support him in the way he wants to be supported. And I have been dreading the moment when he said he couldn’t or wouldn’t fight anymore and I’ve been preparing myself for it. Now I think he can’t or won’t actually say words of surrender, and yet his choices and actions say he is moving in that direction.

Our friends Cathy and Ernie have helped me to accept that since he does seem to understand the ramifications of his choices, I can interpret what he wants from his behavior and his choices. Friday we discussed which of Randy’s meds are most important with the hospice nurse and let Randy know that he has choices about which ones to take. It was clear he was growing very frustrated with being prodded to drink and handed 2-12 pills 4 times a day. The nurse explained that many of the pills he was taking, especially the supplements were really designed to give him his best shot at regaining long term strength and didn’t add much to his immediate quality of life. If he was still thinking he might have, or might regain enough strength to fight this some more with another round of chemo and wanted a chance to try, it would help his cause to take the supplements and some of the other less critical medications. And, if he just wanted to improve the quality of his life right now for the time he has left, and if taking so many pills was really annoying to him the drug list could be paired way back. Randy said he wanted to take the minimum number of pills except that he wanted to continue with the RUTA 6 protocol. He also decided he wants a hospital bed to make it easier for him to sit up to take his pills. Hospice has arranged for it to be delivered Monday.

So starting Friday we cut way back on the number of pills he takes, eliminating the vitamins and supplements recommended by the naturopath as well as Lipitor for his high cholesterol and the high blood pressure medicine recently prescribed (he’s not well hydrated anymore which is what seemed to trigger the high blood pressure anyway), etc. This has him down to about 10 pills a day plus the RUTA 6 protocol plus the nasal sprays and ointments he’s supposed to be doing for his nose bleeds.

Yes this is still quite a lot of things that are supposed to be done in the 5 or 6 hours that he’s actually awake each day especially since the RUTA6 protocol calls for melting 3 tabs (alternating RUTA6 and Calcium/phosphorus) under his tongue every 1 ½ hours while he’s awake. And Randy moves very slowly now and has difficultly transitioning from one activity to the next.

Things have gone smoother since this change and Randy and I have been closer and more tender with one another-which is a big quality of life factor. Last night though by the time he was ready to go to sleep he was highly agitated and resistant to the last round of regular pills as well as the last tabs under the tongue and he again said it was all too much. I’m noticing a pattern that he seems to be his most agitated right before he goes to sleep at night and in the morning as he’s struggling to wake himself up. I told him he could stop the RUTA6 protocol, which would simplify things a lot since the timing of taking it is more rigid than his other meds. He said he’d finish it for that day and then decide so I guess we’ll discuss that a little later today when he’s awake. He opted not to do the nose sprays and ointments, convinced that they weren’t helping him anyway as he still gets at least one good nose bleed a day.

My plan for the day is to get all the things done earlier in the day so the only thing he’ll have to do before going to sleep is take his pain medication. That’s all for now, I’m not going to take the time to read this over so I hope it makes sense. By the way, yesterday I printed the many warm responses we’ve received to this blog and read them to Randy and please know that you touch him deeply, bringing tears to his eyes and a smile to his lips. Thanks again for your warmth and support. Kellee