Hanging by a Thread

It has been a busy week.

We have done CT-scans (me), bone marrow biopsies (C), job interviews (me), track meets without running (K), riding bikes to school (J), more job interviews (me), clinic visits (C), dog to the vet (S), plus all the normal stuff like shopping, cleaning, cooking, homework, doo-dah, doo-dah.

Now it is Friday. The kids are at school (we hope), C is upstairs eating her yogurt and pills, and I am down here writing an update.

The bone marrow biopsy for C marked number thirteen in a long line of fairly painful procedures. The biopsy itself went well and without pain (at least none that made it past the potent medication that C gets before the start), but what wasn’t there at the start made up for it later.

Wednesday was a lost day for our poor girl. She spent the day in bed and not feeling very well at all. The biopsy was part of it, but she was also dealing with the ever persistent nose bleed, bone pain, and the approach of what she thinks is a cold. All in all, she was not a happy camper.

Thursday was a bit better as we headed down to the clinic for the weekly checkup. C received another dose of platelets and had the normal bloodwork done. Her creatinine levels were up a bit over the last reading which is never good news. Part of that might be due to dehydration from the day before when it was a struggle to get food and water into her.

Her other numbers also moved a bit in the wrong direction. Her white blood cell count and hemoglobin numbers were down and some other kidney function numbers were on the upswing when we would rather see them go the other way. The transplant doc stopped by to check on us briefly and relayed some preliminary biopsy numbers. C’s bone marrow is now 90 percent plasma cells.

For some, this will be a review, so bear with me. Plasma cells normally constitute 0 to 2 percent of the bone marrow population. Victims of multiple myeloma start to see the percentage of plasma cells grow uncontrollably in their marrow, crowding out the other very important marrow citizens that serve as factories for all the needed blood cell types. Without these factories, the body cannot make red blood cells, white blood cells, platelets, and all of the other constituents that make up a healthy blood supply. In short, the patient does not do very well.

This is one reason why C has to get so many infusions of platelets. Anyway, this news was not good, but not unexpected. We knew that the myeloma has been progressing in an unchecked manner after the halt of the last chemotherapy attempt. As you may recall, we stopped that regime when C went into the hospital with acute kidney failure a couple of months back.

Since then, we have been laying back and seeing if her kidneys might heal themselves a bit and allow us to try one more treatment.

There is a new variation of an old drug that has shown some positive results in the treatment of myeloma. It is called Revlimid and it is a cousin of thalidomide which C has taken in the past. The use of Revlimid in conjunction with dexamethasone is a treatment program that is in its infancy – so much so that it is not yet widely approved for multiple myeloma patients and is requiring special applications be made with the insurance company to get backing.

The hope is that this new treatment will knock the myeloma back far enough for C’s bone marrow factories to begin making the necessary products she needs to survive.

That brings us up to date. We are waiting on word from the insurance company to see if we can begin the Revlimid treatment. We will let you know.

P.

Rituals

I sit in a silent house. It is 7:40 on a Saturday morning. I am on my third cup of coffee, have read the paper, fed the dog, had breakfast, and emptied the dishwasher. I am up when everyone else is not because a call came in at 5:20 AM from K saying that she needed a pickup. She had spent the night “sleeping” in a cardboard box as part of a fund raiser for the homeless.

She immediately hit the sack upon returning home (she still has one) while I pondered my options. I spose I could have done the same and hope that someone else would feed and water the dog but experience has shown that everyone else in this household assumes that I will fill that role, which makes it a self-fulfilling prophesy. So, I put on a pot of coffee and take care of it.

Now the dog is sawing logs in the bedroom with C. K is dead to the world having not slept all night. J is quiet in his room and may still be asleep, but it’s hard to know without cracking the door to check. And our guest for the weekend, P, is likewise, snoozing away.

We have a guest because C is going through closure. At least, that is how I am thinking of it. She is spending this time with those who have been close to her throughout her life. This is a good thing.

It is not scripted time. There are no speeches or testimonials. There are conversations and walks. There are the rituals of food preparation and consumption. There are periods of shared silence. Most of all, there is togetherness.

For the most part, I am a watcher of this more than a participant. I am a facilitator, a stagehand once removed from the play. Most of those who partake in these ceremonies are women – women carrying out ancient rites of family, friendship, love, and support – ensuring that life will go on even as individuals pass away.

In ancient societies, men and women had their own rituals, secret societies, and legends. In a way, I feel that we still do. During these gatherings, I feel like I am on the outside of the tent, or the cave, or the kiva, called upon from time to time to fetch water, or pass a needed object in. This is not an abject role by any means. I do not feel rejected or excluded. It is more a question of propriety. This is not my time. It is their time.

I think that it is wonderful that C has this time. Hard as it may be to contemplate the passing of a lover, a friend, a relative, it is worse in my mind to have that relationship severed suddenly, without the chance to pay respect, to bid adieu. Now, and for as long as we have, it is that time.

P.

Thoughts and Worries

To all who check in on this blog and drop a comment from time to time, I appreciate it. This is my "private" space to talk about what it is like to live with cancer and what it is like to watch it eat the love of my life in a slow but unstoppable fashion.

I maintain a more public website on the CaringBridge network, but I won't publish it's location here because it is "too" public and readily identifies us. So, you will have to put up with me here in my infrequent visits.

I think about posting here more than I actually do. Some of that is due to not wanting to sound like a whiner when things are weighing me down. Some of it is due to being in the wrong place at the right time - like driving down the freeway composing a post in my head. It comes together nicely, but when I finally get home and find the time to sit down at the old puter, it is no longer there.

One of the things that has been running around my mind of late is my own condition. I have mostly written about C and her day to day issues, but I am running on borrowed time as well, just not as critically. I have a CT scan coming up this Monday to see if the last round of chemo did any good. I have grown lackadaisical about all of this in the past few years because my responses to this chemo program have been so positive that I virtually forget that I have a fatal form of Non Hodgkins Lymphoma, but this will not go on forever.

Whenever I come up on one of these CT scans and the subsequent doctor's visit, I get antsy with apprehension. Will this be the time the shoe drops and I get the news that the chemo didn't do it's thing this time? I start feeling myself for swollen lymph nodes and sometimes find something that may be one (or may not) and then I find myself touching that spot over and over again to see if it still feels like trouble.

What will happen to my children if both of their parents die before they finish high school? Who will take them in? What will thier lives be like? These are the thoughts that fill my head as I lie awake at night before the sandman comes.

So, no HNT picture today, just some naked thoughts.

Hearing the Ocean's Roar

When we last checked in with our plucky couple, they were about to tank up and take off for parts unknown; get away for a while to recharge the batteries and smell the roses. And they were very, very, aromatic.

Last Thursday, C went into the clinic and was infused with two units of platelets and two units of red blood cells. She left with a bounce in her step and a blush on her cheek. She looked like a vampire who has just dined.

Friday morning, she hopped on a plane and flew off to a long weekend as a guest at a beach house in North Carolina with the intention of spending the time on slow walks along the sand, a bit of sightseeing, and as much shrimp as she could stuff down. The flowers were in bloom and their scent filled the air. The nights were cool and the sound of the ocean waves sent her to sleep in her guest room high above the dunes.

This time was made all the more special because we did not know if we would make it. The week leading up to this was spent in unplanned trips to the clinic for infusions of blood products to both try to stem the internal bleeding that had developed and to replace the vital parts that had leaked out. There were some teary moments on the beach when we thought of how close we came to not being there. We felt like we were in a dream.

The house was something from another time when craftsmen knew their trade and took pride in exhibiting their skills in their handiwork. It was a place of high ceilings, dark wooden floors, white painted walls of v-groove paneling, and windows looking out over the dunes to the sea.

Our days started and ended with walks along the sand to see what the water had tossed up for our inspection. There were bits and pieces of shells everywhere – oyster, clam, mussel, and sand dollars. There were the occasional jellyfish, stranded at high tide by the retreating waters. On one occasion, we came across a small puffer fish, half inflated by the shock of its own mortality.

We picked up the occasional bauble and brought it back for closer inspection. Some made it all the way back to our home far from the sea. Most were left for others to speculate over on their walks along the sand - part of the ever-changing seascape.

We are now home again. C made it just fine. We knew where the local hospital was in the event that we needed to make use of it, but fortune (and a lot of borrowed red cells) smiled on us and we passed it on by.

When we returned home, we found the frogs overjoyed to have us back as they sang all night long last night in honor of our return. We expect that they will continue to serenade us again tonight and we intend to do our part by listening to the chorus as we drift off to sleep.

P.

The Trip

We have always loved to travel - particularly on our stomachs. By that I mean that food is one of the most important aspects of life, both here at home and abroad. When it began to look like the end was getting near, C said that she wanted to make one last trip to someplace where we could eat shrimp fresh from the sea.

We were pondering how to make that happen when a good friend of C's sister offered the use of a beachhouse on the North Carolina coast. That was all it took. The female side of the family took charge and began to line up who would come, how, when, where, etc. It looks as though there will be twenty plus showing up to camp out at the house and help celebrate our last vacation.

The parallels with a certain movie made back in '83 are very apropo. There will be good friends, good food, good wine, and good music. I just hope she makes it.

Last week, there was some doubt. Her internal bleeding had weakened her to a dangerous degree and it was not clear that infusions of platelets (corks) and red blood cells would stem the tide. We go back to the clinic today for a check and to see if she is still losing blood intestinally. She is not feeling as bad as she did last Thursday and I am keeping my fingers crossed. She wants so badly to go on this trip.

We are scheduled to fly out on Friday. So, we will need to pack her full of platelets and RBC's on Thursday in hopes that it will hold her through the weekend until we can return the following Tuesday. If worst comes to worst, we can try to get help at the emergency room of the local hospital, but I would hate to see that happen.

Anyway, we keep our fingers crossed. To those of you who have written in, thankyou for your thoughts. To MB, a big Way To Go for donating platelets. They do make a difference - a life or death difference - to those out here like C.

More later.

P.