O2 4 U

In keeping with my new pattern of frequent updates, here is the latest.

C continues to grow weaker. We have started giving her a flow of oxygen to help with a shortness of breath problem. Nausea continues to be our chief problem and one that appears unstoppable. We have tried all of the known methods, both drugs and wristbands. The best we can do is to try to make the intervals between nausea sessions as long as possible.

She is spending most of her time in a sort of sleep state where she is often restless. She will talk to people she sees in this state, sometimes in short mumbles, sometimes in long, complete sentences. She will sometimes “wake” from these sessions, say something to whomever is sitting in the room, and go back to her eyelid movies. She often feels like she has to go to the bathroom, but has difficulty in doing so.

Her periods of lucidity (or what appears as such to those of us on this side of the membrane) are getting further and further apart. She is clearly nearing the end of this life. She knows it. We know it. She is ready. We are not so much ready as we do not wish to see her hurting anymore.

Last night, we had another group dinner. My brother, P, from New York was in town on his way home from a Duluth visit. C’s sister Pat and her guy Dave were there. I grilled ribs over a slow fire for about four hours while other family members stopped by over the course of the afternoon.

As we were getting the table ready and folks started to sit down, C surprised us by asking to be taken out to the table in her wheelchair. We quickly rearranged the settings so she could sit at the head of the table and share a little food with us. It was a nice moment. She was clearly struggling however and we had to make our way back to the bedroom after a few minutes so she could lay down.

So it goes. We take what moments are given to us.

P.

First Day of Summer

We are spending the holiday weekend cleaning – woohooo. Let it not be said that we don’t know how to have a good time.

Both kids are under sentences of death if they don’t get their rooms picked up in preparation for a carpet cleaning next week. We are not talking about picking up a few stray pieces of clothing here. This requires an all out, expeditionary force, archaeological dig.

“Auntie” P came down from Duluth to assist J and help keep him focused during the effort. K is plunging ahead on her own. I was told that there would be before and after pictures of the J dig. If they materialize, I will post them here.

I too have a list of chores that I need to take care of. We are having a bit of a housecleaning party tomorrow afternoon where we will tackle the parts of the house not covered by K and J.

I will also have to address the annual “thistle pull” one of these days soon.

C is resting peacefully as I write this. Nausea is still a problem, but it comes and goes. Last night, she seemed to sleep fairly well until our newest neighbor across the street fired up the first of several noisy engine powered lawn tools at 6:30 in the morning. I lay in bed conjuring up several appropriate, but prison-earning responses. He must be shooting for the neighbor of the year award.

Not much more to say now. It’s a warm, sultry day here. The first real day of summer.

P.

Mexicali Blues

It’s Thursday and we have a crew cooking Mexican upstairs in the kitchen. C’s uncle from Colorado and his wife are in town visiting and wanted to come over to contribute their culinary skills to the group effort that has characterized our evening mealtime of late. It seems that most days we have more than our usual compliment of bodies in the kitchen come mealtime.

This is good. We need to share and be together right now.

C is still mostly dozing in this strange half-sleep state. She is still plagued by nausea which has proven very difficult to control.

Today, she actually left the bedroom on a couple of occasions, but the effort took a toll on her. She is so weak that the least physical effort saps her remaining strength. We tried to do a bit of paperwork, but it was too much for her.

All of this makes me feel so strange. The emotions are so intense, but at the same time, I feel like I have a layer of muslin laid over me that makes my view of the world slightly far away and fuzzy. Distant.

On top of everything else, I have taken a new job. I will start work at a large local company known by its three letter name. Strange as it may seem, I still am not exactly sure what I will be doing (reference the muslin comment above), but it will be dealing with the production of respirators and carries the title of Senior Manufacturing Engineer. I explained my current situation and requested an actual start date as far in the future as they were willing to go. More on this as it unfolds.

Right now I feel very sad. I know that this will change over time, but it definitely is the feeling of the moment. I have noticed that I am prone to losing my temper with K and J (always a bad sign) and am tending to seek quiet spots where I am alone when surrounded by groups.

More later.

P.

Through the Looking Glass

Today is better, for me at least. I got sleep last night with a little help from one of C’s medications. Aunt P stayed over and had a sleep out with J on the screen porch. She was there to act as my proxy if things were bad again. We agreed that I would start out with C and then she could take over at some point if need be. C roused me once at about 2:30, but other than that, I was dead to the world. What a difference it makes in one’s outlook.

Of course, having the first really warm days of spring with sunshine and singing frogs don’t hurt either.

Right now, C is upstairs with the hospice massage therapist getting a stroking session. I thought I would take the opportunity to jot down a few words about this whole process.

C is still experiencing vivid “waking” dreams. At first, I thought that it was something induced by one, or a combination of some of the many drugs that she is taking, but now I am not so sure. Another possibility is that she is beginning a transition to another place. She describes it as being “in another universe” that is apparently very much like this one, but different.

She seems to coexist in these alternative states with transitions that are not apparent to me. She can be talking to me or someone else in a perfectly lucid way and then say something that is clearly not associated with this particular universe.

I am not a religious person, but I do question things. I do not believe that I will go to a “heaven” or a “hell” when I die based upon my actions, or my professed faith. That does not mean that I rule out the possibility of some kind of experience on the other side of death – I just don’t know what it is. So, it is with great interest that I watch C as she leads the way.

I read a lot and some of my literary journeys have taken me to the land of quantum physics (which I do not pretend to understand), but some of the learning’s of that field of study posit the existence of alternate universes (which seem no more, or no less likely than the Judeo-Christian concept of heaven and hell). Perhaps what I initially took to be drug induced dreams are really a thinning of the membrane that separates C from other universes and somehow she now exists in more than one of these.

I know that it is frustrating and confusing for her to have to relate to all of these different places when they all seem equally real to her. Imagine if you had to somehow keep track of which universe the person you were talking to existed when they could look the same in any.

Anyway, if this whole thing were not part of an end-of-life process, it would be much more amusing. As it is, it is just frustrating for everyone.

Once again, I wish to thank everyone who has called and written in with offers to help. I know that your offers are sincere and they are much appreciated. For the most part, we must do much of this ourselves simply because it is laid before us on our paths. The more mundane activities, like housework, I will happily accept help with. So don’t be surprised if I call you for a cleaning party.

That’s all for now. I will keep this as current as possible.

P.

Speaking to Ghosts

And I thought I was tired yesterday.

We are still trying to get a grip on C’s nausea. The hospice folks recommended a couple of drugs that get administered together every six hours and that seemed to control things pretty well, but there was one unfortunate side effect – tremors. In an attempt to alleviate those, we deleted one of the drugs, a fluid, and continued on with the pill. That worked for a while, but last evening, C started to become sick again.

We reached the on-call nurse at the hospice program who walked us through the possibilities. None of the options sounded particularly good. In the end, C took only the tablet again along with an Ambien to make her sleep.

As the house slowly cleared of people (we had quite a crowd again), I was feeling the overwhelming pull of the pillow, and at about 10 o’clock, I hit the hay thinking I could get a good six to eight hours of uninterrupted sleep as the Ambien would keep C down. Boy was I wrong.

I had no sooner laid my head down than C began to speak. I rose back up to understand what she was saying, but that did not help. Her speech was sometimes clear, sometimes mumbled, but it did not take long for me to determine that she was not talking to me. She was talking to someone only she could see. This began a ten hour marathon of hallucinations and constant one sided conversation.

On top of that, C would have to get up every forty-five minutes or so to try to go to the bathroom. This meant that I also would get up to help walk her to and from the throne. Only one in five trips was productive. I would just start to drift off to sleep when she would either start to get up or start to talk. It was endless.

I am now a physical wreck and am not looking forward to this evening. I have calls into the hospice staff to help us adjust the med list, but I don’t know when or how that will happen. Right now, C is upstairs feeling very barfy and is not a happy camper.

P.

Bedside Visits

Whew. It has been a busy couple of days. Many visitors.

C is mostly resting. She is for all practical purposes, bed bound. We use a wheelchair to move between the bed and the bathroom.

Nausea and pain control are the two orders of the day, and are not easy to do. Part of the challenge is to renew the dosages at regular intervals, some of which occur when we are normally asleep. All of this is easy to screw up and makes for tired puppies. Fortunately, C’s sisters have been a big help and today, her best bud from Duluth came down to lend a hand as well.

The last two nights have had a partial air of celebration as unexpectedly large numbers of people gathered around the tables and counters of the kitchen, eating, drinking, and sharing stories, many of which involved C as a center piece. It was good and also bittersweet.

As for me, I am in a constant state of exhaustion. Sleep is fragmentary and too short. There seem to be endless things that need to be done and not enough energy to do them. While I am off trying to put one thing right, I feel guilty not being by C’s side even though there where all ready too many people in the room with her. It is a crazy time. Sophie the Wonder Dawg is confused by all the activity. On one hand, she is drunk with all of the new hands that are there to scratch her ears, but at the same time, she senses that this is not the normal routine and in anxiety, she follows me around with a nervous look in her eyes.

The hospice folks have been very supportive. A nurse has come by each of the last three days and new pieces of equipment have been delivered and temporarily stored in the dining room for possible use down the road.

Tomorrow things will be much quieter I am sure. Jobs will call to the adults and the kids must be in school. Perhaps then, Sophie will settle down.

Thanks to all of you who have written emails and dropped by to sign the guest book. Your thoughts and concerns are welcome balm to us in these trying times. If you call, or wish to stop by for a visit, I hope that you will understand if the timing does not work out. Dying is hard work and sometimes, the work must be done alone and in a zone of quiet. This is a dilemma that has no easy solution. Friends and relatives need to pay their respects, but at the same time, C needs growing amounts of quiet time to rest and prepare. So, if you call, please do not feel hurt if the timing does not work out. We are all marching to the beat of this new drummer that only one of us can hear. It is trying.

P.

Enough

It is Friday and I am tired. This is not the tired one gets after a week of 9 to 5 at the office with your cohorts. This is something more. It is the tired that comes from carrying a weight 24/7. Sometimes I think back and I have difficulty remembering life before cancer. What was it like when we lived our lives ignorant of the effects this disease brings into a family? What was it like to envision how we would spend our retirement? What was it like? I don’t know anymore.

Things have been hard around here lately as you may have guessed from my tone. C has not been able to eat or drink much over the last two weeks due to a combination of nausea, pain in her esophagus, and a general bad taste in her mouth. Consequently, she has lost more weight and is very weak. In addition to the lessened input, there has been no “output” other than urine in two weeks. Her systems are shutting down.

Yesterday, at a regularly scheduled appointment at the clinic, she tearfully told the staff that she did not want to do this anymore, that the pain had grown to be too much. At a hastily convened conference between C and me, her transplant physician, her case worker, and our favorite PA, we stated that it was time to evaluate our options. After doing so, we chose to stop taking the current chemotherapy drug and much of the prophylactic medications that form the endless lineup of pills that C must try to choke down during the day. We also chose to re-enter the hospice program and to focus on comfort rather than fighting the progression of C’s myeloma.

This was a particularly difficult decision for C. Anyone who has met her would know immediately that they were in contact with a person of immense will and determination. She has shown these characteristics over and over again during the last three and a half years. I know of no one who has gone through what she has. Her disease is one that causes great pain and the treatments for it are no less brutal. C approached this battle like she has with any challenge that stood in her way – with courage, determination, and a will to succeed. She has fought a foe that was relentless and devious. Throughout, she has been uncomplaining and without self-pity. It was therefore, a bitter pill to say “enough.”

One of the things that she and I have talked about late at night in those moments we get to share before sleep comes, was her fear that our children would look back on this time and feel that their mother “gave up” the fight of her life. This concern for her children, their future psychological health, and their view of her legacy is a very strong motivating force. I do not pretend to know what sources of inner strength have allowed C to make it this far, but I do know that this is one of them. She does not want them to believe that she is a quitter.

So, to say in public, to the medical team that has taken care of us through all of our ups and downs over the last few years, that enough is enough, was particularly hard for her. There were many times when the pain caused her to cry out, or the endless nausea and vomiting and diarrhea left her wrung out and lying in misery on the hard tiles of the bathroom floor, that she had voiced her resignation to me, in private, in the depths of the dark nights. She had surrendered to me over and over, but when morning came and the children had to be seen off to school, she somehow found the reserves to rise again and return to battle.

As I write this, she is upstairs sleeping (I hope). Last night, I called the members of her immediate family to tell them of our decision. It was exhausting. I used the phone next to the bed to make the calls so C could hear what I said and each call was like a small surrender that took something out of both of us.

This posting is easier to do in some way. I suppose that to some extent, I am writing it to myself – trying to set my thoughts in order – trying to make peace with what has come to be. We do not know how things will go from here. Timing is uncertain. What I do know is that I want C to be without pain and discomfort as much as is possible.

We are trying a new pain medication that comes in a patch that slowly releases medication over a 72-hour period. If that works, it should help with her constant bone pain.

As always, I will keep you up to date via this website.

P.

First HNT Redux

This is a repost of my first HNT. I don't have a "celebratory" pose - things have been kind of crazy around here lately.

C is dying. It is not the dying of movies where the heroine gently fades as the music wells. This is real. It is painful. It is ugly. She cannot, or will not eat much. She hasn't pooped in over a week. Her kidneys are failing and she is filling up with her own toxins. She is nauseated and often has the dry heaves.

She asked me tonight why she is still alive? Why is she having to go through all of this? I did not know what to tell her. I finally said that it is because she is such a fighter. I told her that we could call hospice back in, she could stop taking all of her pills, and we could make her as comfortable as possible for the remaining time. She did not respond.

I wonder what our children think? They don't want to talk about it. I don't blame them. I don't want to either. But here I am, talking to all of you whom I know only through this anonymous medium of blogland.

Well, I am tired now and will go back upstairs to my sleeping C. Adieu.

P.

Slipping Away

There are times of late when I think C is loosening her moorings to this plane. Yesterday, she spent long periods of time just sitting, staring at nothing in particular. It is like she is halfway to a place that I cannot see.

It is hard to watch, but also comforting in a way. I have always wondered about death. I have thought about my own and speculated about how it will unfold. Watching C is like having a guide. If it were not for the feeling shitty part and the incredible sadness of losing the love of my life and mother of my children, this would be a very interesting process.

How does one go about preparing to die?

P.

Where K goes to the prom and the Dawg offers up a gift

Note: This was drafted on Sunday but posted today.

P.

***********************************************

Twenty four hours ago, I was jockeying for position with a thousand other parents at the high school’s spring prom Grand March, which is where each couple going to the prom is announced, marches in a V-shaped path through the school gymnasium while friends and relatives take blurry pictures of them from the bleachers. I grabbed a seat near the first of three riser platforms that the costumed couples had to ascend and descend along their route and upon which they were free to pose, twirl, or do something else of their choosing. My favorite was the “trod on dress and nearly pull it off the chest” step that several of the girls found themselves doing as they made their way in unfamiliar shoes and formals. Fortunately, it was close encounters only.

While I was doing that, C was home sick. We went to the clinic in the morning to get platelets and while there, she threw up. This continued all afternoon and into the night. What made it more worrisome was that it appeared that she was losing blood in the process.

She has been having problems with a consistent nose bleed for weeks, but that seemed to get better in the last few days. It is possible though that she is still bleeding however and that it is flowing internally rather than externally. Whatever the case, last night had us worried.

It is not just the bleeding that is a problem. It is also the dehydration and the lack of nutrition that goes along with it.

C stopped throwing up around midnight and we were able to get some sleep but it is safe to say that we are both running a few cylinders short today. I took her back down to the clinic this morning to get a couple of liters of fluids put in to counteract the dehydration. She lost about three pounds overnight, all of it fluids.

Right now, she is resting, but still not interested in food. K has returned from the prom, but doesn’t have much to say about it. I am too tired to press. J is still with his aunt Pat where he spent the night last night.

As if this were not enough, the dawg ate something really dead yesterday and decided to mimic C overnight in the laundry room. Usually, she is pretty nonchalant about barfing when she has to do it, but this time even she was offended by what she had done. When I opened the laundry room door this morning to let her out and feed her, I was greeted by a smell so odious that my eyes started to run and my nose closed up.

I was dumbstruck by the cloying smell of death and decay. What in the world had crawled into the room to die? I looked around but did not see anything obvious. Sophie was looking guilty, but since there was no physical evidence, I shrugged it off and took her out for a walk to get the paper.

She immediately produced two prodigious examples of her digestive workings that started more alarm bells ringing. I have never seen her so productive in that manner.

Upon coming back into the laundry room, which is our family entrance to the house, I was again struck with the knowledge that there was something very, very wrong in that room. I then noticed that Sophie’s blanket (or quilt, really) was all rolled up in a ball, which I found to be odd because she is always lying on it and it was not possible to do so the way it was positioned.

I decided to take it out and shake it to see if that might shed some light on the problem. As I picked it up and moved toward the door, there was a sound akin to what you might hear as you strolled through the cow barn at the state fair. Kind of a cross between a plop and a thud. Looking down, I saw what Sophie had tried so hard to hide – a stinking pile of goo that could have come right out of a low-grade horror film. Suddenly, the magnitude of the stench grew exponentially and I nearly lost it. The blanket, the door mat, and my running shoes all went outside with various quantities of contamination.

I couldn’t deal with it right away. It was all too much. Instead, I went back inside, glared at the dog, got a cup of fresh coffee, and sat down with the morning paper to calm my nerves. The fact that I thought that news of fresh atrocities in the middle east, clamoring right-wing political candidates, losing sports teams were all better that what faced me behind door number one will give you a sense of my mental condition this morning.

I am better now. I cleaned things up. The blankets are washed. C is home and resting. K is home (if quiet). J is due home soon. We are safe whereas many others around the world are not.

P.

The Latest

Where to begin?

I have been holding off on posting because we were waiting to hear from C’s insurance company on whether they would support the use of Revlimid, a new derivative of thalidomide, as a treatment for C. The answer to that came in this morning and it was positive. Everything else was in place so as soon as the drug arrives from the pharmacy (only two in the whole country supply this drug), C will begin taking it. It is an oral application so she can take it at home which is nice.

One of the side effects however is that it will probably lower her white cell count and her platelets, which she has precious few of to begin with. So, even though the Revlimid will not require trips to the clinic, it is quite likely that we will continue to make frequent visits for platelet infusions. Which brings us to this week.

This week, we have made three unplanned trips down to the U. to get blood products. C was really tired over the weekend and by Monday, she could barely get out of bed. I came home from a doctor’s appointment to find her very groggy and lethargic. The last time I saw her like this, her hemoglobin levels were in the basement and prompted much excitement among the normally very laidback staff at the BMT clinic. I didn’t want to cause a repeat panic, but I brought her in anyway. Is was good that we went. Even though her hemoglobin levels were not as bad as before, she was in dire need of RBC’s and we wound up spending a good part of the day pumping stuff into her.

This was repeated again over the last two days and will most likely follow again tomorrow. I think we should just string some long tubes between the U and our house and save the driving. The benefits have been worth it though. She has much more energy and some color in her cheeks. If it were not for the stubborn nosebleed, we would be sitting pink.

We are all getting some doctor time these days. K went in Monday for a bone-scan on her lower legs and saw a sports medicine specialist today to try to understand her persistent leg pain that is now keeping her from competing in track. This started last year as shin-splints and reappeared this year as soon as she started doing her hurdles. After her auto accident, the pain got much worse though there is no evidence other than time that appears to connect the two. The pain was so extreme; her coach banned her from running and urged her to seek medical help.

The doc we saw today said that his suspicion is that K does indeed have shin-splints that have been aggravated to a high level. This was supported by the bone-scan results. The doc said that in his opinion, the shin-splints are being caused by muscle use imbalance – K is not using all of her leg muscles when she runs and the ones that are working hardest have strained the portion of her leg where the muscle enters, and is anchored to, the bone.The recommendation is that K should see a sports physical therapist, exercise, and eat better (yea doc. I didn’t even pay him to say it – er, wait, I did pay him to say it, but it was cool anyway, because I had been saying it to her for years). So, we have made an appointment with the therapist and now we just have to wait and see if K makes the commitment to follow through.

Let’s see, what else is new? Oh, I got a job offer. That’s good. It is contingent on passing a background check and a medical evaluation (another name for peeing in a cup), so I won’t say more about that until it is final. If any of you are approached by someone wearing a black suit and sun glasses who asks you about me, feel free to tell them I am a great guy.Well, that’s enough for now.

Don’t want to give you information overload.

P.