The Cat Came Back

Curly hard at work.

Recently, the cat who keeps me company at the Post Office, Curly, disappeared. She adopted our office as her home seven years ago. She spends her day sleeping in a chair atop a red, white, and blue blanket knitted for her by one of our customers. At night and when the office is closed, we place her outside to fend for herself.

This year, winter came early to the Hood River Valley. Our first snow fell on November 9th. Then, just in time for Thanksgiving, the weather turned cold, very cold. While acclimating to the season’s onslaught, I was also grappling with my doctor’s suggestion to renew treatment for my blood cancer, multiple myeloma.

I understand the proactive thrust of Dr M’s idea. Clinical trials demonstrate that low dose oral chemo can extend remissions in patients who have undergone a stem cell transplant. Nonetheless, I waver. The fact that I feel good makes me hesitate. Why set the clock ticking on treatment now? Shouldn’t I wait until I’m symptomatic?

Our home after a recent snow storm

As I contemplated what to do, the cold snap broke and torrential rains threatened to flood the valley. Last week, the snow returned. Several brief storms dusted the trees, decorating the shoulder of each branch with white epaulets. Then, the full moon joined with the solstice and bore the gift of a lunar eclipse. In years gone by, such heavenly triangulation would have prompted pagans to sacrifice an animal. After all, angry Gods must be appeased.

That was when Curly disappeared.

In a world full of unpredictability, Curly’s steadfast appearance at our back door each morning, is appreciated. Throughout my workday, the transactional banter that accompanies the selling of stamps often includes an inquiry about Curly. Customers want assurance that she is safe. In this way, she acts as a touchstone helping to forge bonds in the community that would otherwise be absent.

After four days of worrisome questions from admirers, my faithful companion reappeared. She seemed no worse for wear, just hungry and sporting a suspiciously torn claw on her back foot. I theorize that she entered a building from which she could not escape.

Curly’s return brought to mind an old folk song: The Cat Came Back. The tale it tells speaks to the resilience of cats, uncanny in their ability to land on their feet in the direst of circumstances. As the song progresses, it takes on sinister overtones. The cat not only comes back but does so with a vengeance that grows in proportion to the effort to be rid of him.

Spanky, another cat who comes back a lot

Something similar occurs when cancers relapse. Remissions imply that one’s cancer has disappeared. With many blood cancers, however, the disease exists undetected in a dormant state. It is myeloma’s capacity to evolve that makes it, thus far, incurable. The cancer has resourcefulness equivalent to a cat with nine lives; its true regenerative force, though, may actually be infinite.

In a New York Times article, The Cancer Sleeper Cell, by Siddartha Mukherjee, the author postulates: “Chemotherapy unleashes a ruthless Darwinian battle in every tumor. A relapsed cancer is the ultimate survivor of that battle, the direct descendant of the fittest cell.”

Hence, my reluctance to begin a regimen of chemo; I wonder if doing so when my quality of life is high not only eliminates an option but also makes the cancer smarter. Like Curly, I do not want to enter a building from which I cannot escape.

I am a pragmatic optimist. I respect the ingenuity of life in all its forms, be it a life threatening cancer or a cleverly resourceful cat. I also admire the persistence of science. Right now, I’d say the brilliance of researchers is gaining on the lethality of MM. One of these days, perhaps in my lifetime, the cat, or rather, the cancer, will not come back.

Trees

Trees

“Keep a green tree in your heart and a singing bird will come.”

Chinese Proverb

Raked leaves from a sugar maple

In November, the deciduous trees on our property cover the lawn with a radiant multi-colored blanket of leaves. Each fall, I spend several hours raking them into piles. Then, I haul them to my flowerbeds where they act as nutritional mulch.

Our property was once a strawberry farm and before that, part of a forest. We purchased the land with a small house over thirty years ago but never worked it. Instead, we raised two boys who enjoyed a playground of 4+ acres.

One of our sons was born in what is currently the den, the other nearly so, though complications at the last moment precipitated a rush to the hospital. We commemorated the first-born’s birth by planting a Sugar maple tree. Two years later, our second son’s arrival was marked with a Quaking aspen. Though we stopped at two children, the tree planting was only beginning.

As our sons grew, it became a ritual for the three of us boys to plant a new tree each Mother’s Day. The value of our gift lay in the legacy tribute of a tree’s life. Furthermore, it came wrapped within the comedy of our antics. On one occasion, the boys and I broke a water pipe while planting a Japanese maple. That day may have been my sons’ first lesson in how to swear. Now, years later, it endures as a humorous anecdote in our family history. I like to imagine that tree’s delicate beauty stems from the bile spilt at its christening.

L-R, Maple, Walnut, Aspen

The first tree dedicated to my wife was a white birch. Its multiple trunks and drooping branches now reach 30 feet into the air. Many more followed one at a time, along with random plantings of bunches of Douglas fir, poplars, and Norway maples. Despite the dozens of additions, room exists for many more.

To plant a tree affirms life beyond the boundaries of our short stint on earth. While my cancer causes me to sometimes brood about mortality, the trees I’ve sown connect me to the imperishable wonder of creation. The routine chore of gathering leaves to share with my garden folds me into the mystery of how life everlasting encompasses us all.

Against that backdrop, I attempt to put my disease in perspective. Lately, it stutter-steps: one moment advancing, the next retreating. The cancer, multiple myeloma, seems reluctant. On consecutive visits, my blood labs crept upwards in a telling category. Then, at my most recent appointment, the movement stalled.

Maples in full color

Further proof of the lazy nature of my disease came from a series of X-rays on my pelvis and legs. Pain in my thigh and hip made me wary of advancing cancer. One of the sneaky ways this disease harms the patient is by causing lesions in the bones. Often, someone with myeloma does not know the extent of the damage until a bone spontaneously fractures. This development is not bone cancer, per se; rather, it is a result of the blood cancer interfering with the normal process of bone loss and replacement. Fortunately, nothing was found on the radiological exam but my renewed peace of mind.

Overall, my condition gives me reason to rejoice. I survived the first onslaught of multiple myeloma, much as an old tree endures a lightning strike. Remember, in 2007, the prognosis was five years. Given the status of my disease, its ambivalent nature and my constitution’s ability to respond to treatment, I consider that a poor estimate. No one can say how many years lie ahead. Nonetheless, I think there will be plenty of time to plant more trees.

First round of treatment

I have now completed the first round of three weeks of Revlimid and then a week off. Just started the next round. No indication yet of whether it’s working as it can take quite a while. My first blood test has just gone off the London and could take at least a couple of weeks to return.

It was a bit of a shock to the system, and it brought it home to me that my health is gradually deteriorating.I was surprised how quickly the side effects knocked me sideways.

For fellow myeloma sufferers the details are: One Revlimid a day, 40 mg steroids once a week, Warfarin to prevent DVT, and the usual clutch of anti fungals, Bonefos etc. Also lactulose for constipation, calcium as my levels went down.

Having just had a week off Revlimid, I feel it’s the steroids that affect me most – the shakes, especially in my hands, muscle weakness and twingeing (also sometimes internally), bad withdrawal from the third day after, low mood, very tired, swollen hands etc. Not sure about the Revlimid – they do make you tired too and my immune system is going down. I had a very few odd red spots but not the dreaded rash that some people have.  I did have some mouth problems after having bitten my cheek and then finding my whole mouth got sore, but have just used Difflam to get rid of it (ruins your taste buds!).  I find I have to nap during steroid withdrawal.

I am trying to eat well (am hungry with the steroids but do need to put on some weight after my low fat diet) and am trying to go on my cross-trainer everyday. Also using a circulation booster on my feet – they help a little with peripheral neuropathy and prevent DVT in my legs.

I still haven’t got my Warfarin blood test levels up to where they are needed – maybe due to my diet with lots of green veg! But they are gradually increasing the dose.

So toodling along and just getting used to planning my week around the pill cycles. I make a to-do list for Tue/Wed as the steroids mean I can get quite a bit done – today was very successful! Yesterday I did the hospital in the morning and a demo against the cuts in the afternoon! Then a visit from a friend later! Yes I am knackered but all the union stuff keeps my brain working.At the end of every day I write down my meds and how I feel, which helps when you think you feel bad on eg day 4 you can look back and see you did the previous week and not to worry. Also helps at appointments. But also I write at least 4 positive things down too!

Many thanks for visitors, postcards, emails and comments on my blog. All really helps. Visitors very welcome if you are healthy!

Will try and update again soon.

Day 39

Hello,

I went to the Doctor for my weekly visit yestereday.

Not good news, but I knew that.

High M-spike, which means the transplant did little good.

The problem is what to do now.

Don’t Know.

The Doctor suggested I get on a clinical trial somewhere so I can possibly take advantage of new drugs that are not yet approved. I have to do all the work of course to find these trials. They cannot find me a donor yet.  At this point that is really my only hope. I never thought I would do an allogeneic transplant because of all the possible complication that could arise, but now I am willing to do anything because I want to see my grandchildren someday among other things.

I encourage anybody reading this to enroll in the stem cell donor program. You could help many people awaiting donor matches around the world. It’s easy, all that is required is a cotton swab of  the inside of your mouth. If you are a match and willing to donate for someone, then it is a matter of sitting in a chair for about 6 hours while they draw blood through a machine then return it through the other arm. they extract the stem cells they need that way. It does not involve needles through your bones.

All you need to do is go to bethematch.org

Thank You for listnening.

Moni

Please enroll because you could save a life. This is good for Leukemia and Lymphm patients as well.

Day 31

Went to my Doctor’s appointment this morning. They tool a bunch of blood to test my Myeloma markers. Will find out next week. I also have to do the 24 hour urine collection.

I had 2.7 white, which is low, 3.4 red, 70,000 platelets, and still holding 11.7 hemoglobin. My blood pressure was a little low, 97/55.

Am staying awake so far, but I feel a possible short nap coming on maybe, or maybe not.

I have been getting 8 hours of sleep every night at least. It is great.

Day 30

I’ve been feeling OK for the past few days.

On saturday my kids came over and we all watched the Soccer game. The U.S. lost, they are out of the world cup.  It was great, it was my birthday. They gave me the world’s most thoughtful birthday cards each one of them. My little one brought me one dozen pink roses. I almost fainted.  This is the kid who never calls to ask how I am doing.

We took it easy on sunday- no different than most days. We made ribs and chicken wings on the grill with corn on the cob.

Today, monday, I didn’t do much. Stayed and walked around the house. Took a nap around 4 pm. It is tiring doing nothing. I am expected to feel tired, so it’s OK.

After dinner every night I make myself either walk around the yard for 25 minutes, or walk around the house. It is quite hot so Sometimes it’s a mixture of in and out.

I am off the antibiotics since saturday. I haven’t had any milk or chocolate,lunchmeat, or cheese since I started the antibiotics. I have to wait a few more days.

Moni

Day 24 Hospital then Out

I didn’t get punctured until after midnight. The nurse didn’t do it, some other person did. Then I was ready for the IV antibiotics, but the nurse was nowhere around. Finally at 12:45 he came.   It was a very slow drip so as not to blow my vein.    It lasted until almost 4 am. I slept through most of it. Then the vitals Tech came in.

I slept until 7:30 am, got out of bed at 8.

Ate breakfast at 9, got my pill – Acyclovir.

I was feeling tired all morning. Ate lunch from the hospital or else I wouldn’t have eaten anything. Of couse while I am chewing, that’s when the Physician’s assistant came in. She informed me that I would not be leaving today. I was not happy. Reason? A sort of muddled story about I need the IV antibiotics and they could only be given in the Hospital room because there was no pill form. She also said the Infectious disease doctor would be stopping by to assess me.

I figured it would be soon. He didn’t come by until 4:30 pm to tell me there MIGHT be a pill form of antibiotic I could take at home but that he didn’t see any reason for me to remain in the hospital. I agreed. About that time I heard a bunch of people talking outside in the nurse’s area and recognized my Doctor’s voice. I took him 20 minutes to come in. He said that they were working on a way to mabe get me out if my insurance would cooperate in me purchasing the “expensive and rare” antibiotics. I waited and then the pharmacy lady came in and said it had been approved but that I had to pay now for the pills. I got my VISA number from my husband, signed the form and she came back with my pills.

Finally, I was leaving. But of course it took another 2 hours between the nurse getting the discharge papers in order and the transportation team arriving to the room.

You know, the nurse knew at 4 pm that my IV was swollen and a little red, she said she would be right back to take it out, but she didn’t remove it until 6:50 pm. She sure had time for all that chit chat between 4 and 7 though. Believe me she could have taken it out but just didn’t feel like it. As a matter of fact, I had 2 nurses assigned to me that day. It just urks me.

Needless to say, I was elated to be home. I got to sleep by midnight after taking my antibiotic. 

 Moni

I was still not happy. At  

I took a nap around 2 pm.

Day 23 – Still in the Hospital

Happy Father’s Day!

Got to bed by 11:00 last night. At 12:15 they came for blood draw and vital signs. They also hung another bag of antibiotics.

I went back to sleep.

At 4:30 am the Tech came in for vital signs. I was so tired.

I went back to sleep.

At 7:30 am they came back for vital signs. I slept on and of until 8.

Ordered brakfast at 8, but didn’t get it until 9.  Blueberry muffin, banana, orange juice and hot chocolate.

At lunchtime my husband came and brought me a bacon sandwich and chips, very fattening, but good.

A litttle while later, the doctor came by and decided that the 2 bacteria cultures that were growing were coming from the PICC line. He ordered it to come out as soon as possible, and an IV line be put it right before.

My nurse tried to hit a vein, but couldn’t.    The Picc line nurse came and did it. Also, she then took out the contaminated PICC line. It didn’t hurt one bit.

My younger son came by after work for a little while, then my older son showed up and spent the rest of the day with my husband and I. It was great. I am feeling better today with much more energy. 

More chinese for dinner.

They left around 7:00. I got a shower and will watch a little TV, then bed. I will be punctured at midnight for blood, then they will give me more antibiotics through the IV line.

Moni

Day 22 – Back to the hospital

Well at 2:30 am up to pee. At 4:30 am up to pee and diarrhea. At 8 am up to eat a big tasty breakfast of 2 eggs, bacon, toast with cream cheese, orange juice and hot chocolate.

The kids (they are grown) and my husband were going to meet at a lake to go skiing and boating.  Just when my husband was about to leave at 9:30 am, I got a call from the Doctor. He informed me that my blood cultures had come back positive and that as soon as I could I had to be admitted into the Hospital for IV antibiotics and observation.

I tried to get out of it but to no avail.  Well the truth is I was kind of dizzy.

I got to the Hospital about an hour later and they were waiting for me. I got all my hookups.

They started some antibiotics and now I an here dizzy and not happy. I finally got some food at 2 pm.  The Doctor says I will be here for at least 2 nights.  Make that 2 sleepless nights.

The guy in the next room has the TV so loud, he must be deaf. Oh when he talks, he is even louder.

Husband brought some dinner Chinese. Everything tasted a little off, but my husband said it was good.

I will get a shower soon. I will go to bed before 11:30 I hope.

Day 20

I got 8 hours of sleep! I woke up at 7:30 but I had a fever of 99.7. I was sweating. My husband is out of town, so I am alone. I can’t get rid of the fever.

Finally I got out of bed at 8:30 and had a little breakfast.

All day I have had a ever of between 99.3 and 100. Another waisted day. It’s hard to walk even to the kitchen and back.

I finally took 625 of Tylenol at 5pm so I could function tonight.

I am going to the doctor tomorrow. I have not called them about the fever because I don’t have a ride, and I was hoping the fever would go away.

The fever went away at 8 pm and never came back.   Husband came home at 9.

We went to bed at midnight.