Posts Tagged ‘Lymphoma



04
Dec
09

plowing through obstacle paths

Today, I am blown about like a dry leaf by the hospital system that hosts the cancer clinic where I am a patient. I like my oncologist, Dr. G very much. He is kind and compassionate, and a specialist in the varieties of lymphoma, a blood cancer with some 30+ varieties. I like his immediate staff. But there is one person, Ms. X, who does not like me and she has today caused a confusion that has my household, Dr. G’s staff and the Nuclear Medicine department in an unnecessary flurry of activity to straighten things out. I don’t know why this person takes a dislike to me, but I am told I am not the only patient on her dis-list. Disconcerting…even more so if I were really sick now, as I was 3 years ago, when everyone’s compassion was a cup of cool water for me.

Why Ms. X continues to hold her job is a mystery to me, but Ms. L from Nuclear Medicine has taken on the case and saved the day. Yeah for the stalwart ones! Thank you Ms. L. I didn’t want to have to postpone this scan and go through the anticipation all over again. Blessings on your day Ms. L.

This brings me to considerations of Kingdom vs. kingdoms. Nothing like this would happen if egos didn’t run the world…yes, even in the church!  So I’ll share with you my Advent reading this morning. It comes from a little book by Richard Rohr called, Preparing for Christmas—Daily meditation for Advent. Today’s reading is based on  Isaiah 29:17-24; Matthew 9:27-31

And those who err in spirit will come to understanding, and those who grumble will accept instruction. Isa.29:24

Easy to see where my alliance for proper health care in this country lies: let’s put the CARE back in Health care! Some younger folk might be surprised to know that there was a time when hospitals were not completely bottom-line-profit oriented, when insurance and pharmaceutical companies were not bed-fellows, and when doctors actually came to a sick person’s home and got to know the family and the circumstances. Not every new thing that comes out of the can  is progress.

17
Nov
09

flying around corners

Since I last posted I have flown to many places in circular patterns as well as straight lines and U-curves. Last weekend I flew (actually) to New York for a meeting of the MennoNeighbors, a group of Mennonites currently putting our heads together to work toward securing the next step our denomination must take in social justice: inclusivity and the embrace of diversity. It was a fine weekend, met very interesting and wonderful people. Didn’t have time to see much of Manhattan, but we got a lot done (I think). Then flew home and attended a lovely party with new friends. Yesterday, I crashed under the weight of water logged wings.

Today I literally turn the corner on safety and turn 71. Those who are yet healthy and under the age of 60 may not understand what I am about to share concerning corner-turning, but hang in there with me and time-travel a bit.

My 70th birthday was bittersweet. We thought we were going to be received into membership at the church we were attending. It was to be a prodigal son  sort of thing. Dear old friends were invited to attend and were just waiting for the date to be declared. My  singer/songwriter  friend was going to play and sing for us. Significant persons in my encounter with faith were looking forward to being there with us. After 3 decades in the desert, this was an important event of covenant renewal for us. Of course, as we know, it never happened. Instead, we had some people come and celebrate my 70th birthday, including one dear old friend who flew in from Albuquerque. It was an amazing evening. On the other side of this movie screen, I was recovering from a Rituxan infusion  (lymphoma maintenance treatment), feeling ill and heart-broken. That was 70 for me…a little formidable but a cornerstone of age that I managed to slip through with more or less dignity.

This year, I turn the corner and face the east, the road to 80. There is no stopping it. The years go so quickly and cancer patients all know that time becomes a different entity in the remission stage(s). For me, it is not a loss of youth, it is an anxiety about time itself…time to do as much as I can to make a difference everywhere I go…to leave a legacy that is positive and helpful, especially to my daughter, partner and all those whom I have loved, love and maybe love me too. But even more than that—to leave the spot of the world that I stand in better off than when I arrived—better off because I chose to struggle toward wholeness without holding back. Sometimes that looked foolish to me as well as to others, but I never had a real choice. It wasn’t heroic. It was just an energy seemingly written into my DNA, completely outside voluntary action. Completely intuitive. I take no credit. It just was what it was. Chemotherapy changes DNA. Mine did in some respects, but not in this one. Praise God!

This is a sad time of year, and it is nearly Advent. I am mourning losses of my own and that of persons who have touched my life and now are gone. This includes all persons I’ve known who have died of terminal illness as well as those gone through an accident of timing. They all live in my heart. The first is my sister, who died last year of lymphoma at almost 81, 2 days before Christmas. She was like a mother to me. I talk to her often and think she is waiting for me somewhere in time and sacred space. This is a comforting thought. I am young and old at the same time because I got such a late start at 40. My young friends don’t understand my old heart and some of my old friends do not understand my young heart, but if I walk along with Jesus—the premier young/old, male/female one, I just feel like me and that is the best place to be…walking along the Sea of Galilee with all the others.

So I gather myself together, dry my wings off and prepare to circle the sky with wings of prayer. I am the Sacred Bird of the North, made in God’s image and preparing to join the great procession of Sacred Birds when called…but for now, I have so much more to do…so much more of Galilee to walk. May God grant me time enough to die with no regrets at all.

Praise God from whom all blessings flow….

I want to walk as a child of the light. I want to follow with Jesus…

18
Sep
09

48+ hours later

So much for the immune system replacing those damaged white blood cells quickly! In my case, improvement is slow and painstaking. What I didn’t say in yesterday’s post (what I did while lying down), is that while Rituxan (rituximab) is not a heavy duty (toxic) chemical, it is still a drug developed in a laboratory, and not a natural substance. It has side effects…not horrible like chemo, but not a walk in the park either. At least it isn’t for me.

At this time, there are 5 years data on Rituxan’s use. When I started on it in May of 2007, there were only 2 years data. I’m a bit of a guinea pig because this drug managed to get FDA approval under the Clinton administration without the usual 100 years (just kidding) of testing generally required in this country. That is not to say it had no testing, just that for some reason that I can’t remember, its successful use in Europe, along with some other loopholes in our system, brought approval more quickly. And because of this, many thousands of people have longer remissions and better chemo outcomes. So why am I complaining? I shouldn’t.

As I have gotten older I have become one of those persons who are said to have a delicate constitution. That was not always the case before the  great mid-life shift in age. Perhaps this shift to delicate is concurrent with having had the lymphoma in it’s indolent stage for a long time before it transformed into its large cell manifestation? I just know that somewhere around mid-life, everything started changing and I got delicate. So now, 48+ hours after the miracle drug dripped into my body, I can report that I no longer have bone and muscle pain, heartburn, abnormal bloat, brain fog, peripheral neuropathy, low body temperature, and emotional melt-down. No, I am improving. I am just extremely fatigued, plagued with digestive misfiring, night time neuropathy, chilliness and bad humor. I have put in a call to my trusty homeopathic physician who will help me with these side effects that I couldn’t possibly be having, since the drug is so well tolerated by the vast majority receiving it.

* * * * *

Just spoke with homeopathic doctor X  in the knick of time. I was about to spiral out into the stratosphere! I’m an emotional person. You probably already figured that out.  Back to being grateful for Rituxan 🙂

* * * * *

Homeopathic  Update: 2.5 hours after taking first dose of prescribed remedy, and I am feeling so much better that I’m wondering why I waited so long to call Dr. X. Hope it was stupidity and not pride… 😉

17
Sep
09

what i did while lying down

Yesterday, I traveled to one of the big university cancer research clinics in my area and laid my body down to received a substance called *Rituxan (Rituximab). I do this every 12 weeks, rain or shine, hot or cold, happy or sad, sick or well. Rituxan has helped me to achieve 2.75 years of remission from non-Hodgkin, B-Cell, lymphoma. Unless the CT scans show otherwise, 12 weeks from yesterday will be my last treatment and I will be declared in full non-Hodgkin, B-Cell, lymphoma remission, otherwise known as a cancer survivor.

Cancer is now generally considered a treatable, chronic disease in the oncology world. Remissions, the state in which no detectable cancer is seen in the body, are key. Anything hiding or too microscopic gets a free ride unless, or until the whistle blows. So remission is bedrock for being a survivor. Yes, there are other characteristics, like ingredients in a pie, but this one is numero uno. After that can come any number of poetic attributes, but remission, preferably full remission, is #1. Thanks to the biotech pioneers, Ivor Royston and Howard Birndorf , (were they beamline scientists?) and the companies who market rituximab  under the trade names, Rituxan and MabThera, my last encounter with this product will be 12 weeks from yesterday. (Praise God!)

Rituxan infusions are not a horror story, as is most chemotherapy, but it has its own properties that vary from person to person. Simply stated, Rituxan is a monoclonal antibody that locks onto  the CD20 protein found on the surface of the B-cell lymphocytes. It is also present on the surface of most of the abnormal B-cell lymphocytes that occur in some types of non-Hodgkin lymphoma. Rituxan marks these cells to be attacked by the immune system; however,  both abnormal (malignant) AND normal (healthy) B-cell lymphocytes are marked.  The downside to this double deal is a lowered immune response to colds and such for as long as it takes for the  body to replace the normal white blood cells that are damaged. The literature says this happens quickly. My experience has not been quick. Today I am at 45% of my normal vitality, feeling tired, flu-ish, worn and a glass half empty. I have to be careful not to be around sick people. Last time, because I was already not well before getting the infusion, it took about 6 weeks to recover and I questioned the value of continuing on. Do I say anything to the docs? No, I do not because in their minds I’m better off compromised than dead!  Well, this time I didn’t have anything viral going on, so I should be better in a few days to a week (maybe 2 weeks.)

I sound ungrateful, I know. What I really am is worn out, like I nearly drowned swimming across a muddy river, and now glad to be resting, sopping wet, under the bridge, away from the elements. The heart wants to get on with things, but the brain is foggy and the body parts don’t seem to recognize each other. I’m a merrionette…a Pinocchio! This soap opera will pass and I am a lucky lass to have a great oncologist with a compassionate heart and a warm demeanor…lucky as well to have friends who care about me and pray for me.

I am also lucky to have gotten sick AFTER I’d already gotten into Medicare. Even with the insurance I had as a self-employed person, it would have been a financial wipe-out with who knows what ending. (One CT scan can be 6 or 7,000 dollars. PET scans even more. Rituxan infusions also thousands. Will somebody please wave a magic wand in Washington to get all those “servants” to see the light of day??? This rich country does not now rank very high among the health systems of the world. I personally mourn for an artist friend who died of lung cancer because he had no insurance! He was gifted, brilliant and sending money to his developmentally impaired daughter. I mourn for all those who, against their wishes, are inducted into the cancer club and especially for those who finally must leave their bodies behind to the thief that is cancer. And then there are the families, the friends and the loved ones… Come, Lord Jesus, the tables need overturning.


20
Jun
09

Hello blogoshpere

This is my first entry as a newbie blogger. I had so much fun leaving comments on my friend’s blog, that  having my own soapbox seemed the thing to do. So, with help from blog friend, ordinary (mostly), I am stumble-bumbling into blog-world from my comfortable computer studio where I more easily create digital montage images for whoever needs them. If curious, see my website,  www.inheritanceproject-2.com

I have lived a long time and done a lot of things, half of which are forgettable, the other half largely regrettable, but gathered together are plowed into a redemptive field of rolling hills and valleys called experience. This of course has been by Grace, not by might, will or cleverness.

Three years ago I was diagnosed with non-Hodgkin, transformed, B-Cell lymphoma. Since that time my life took a steep bank  toward the center and I have not been the same person since. I do not thank cancer, nor do I pat myself on the back for surviving that first onslaught. What I do is look deeper, see more, think a lot, hear a lot and by the Grace of God know that some things in life count more than others… friends, family, peace, justice, honesty, truthfulness, forgiveness, faith, and walking the Way.

This is what I took with me from my cancer experience, and what I live by each day as best I can:

Do not be afraid—I will save you.
I have called you by name—you are mine.
When you pass through deep waters,
I will be with you; your troubles will not overwhelm you.
Isaiah 43:1-2

YHWH




Blog posts

May 2019
S M T W T F S
« Jan    
 1234
567891011
12131415161718
19202122232425
262728293031  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 205 other followers

Categories

Archives