Okay, I have large B-cell diffused lymphoma. The trouble with big health issues is not so much all that stuff you know is going to be done to you–things you’ve known about and dreaded because you’ve known others who had to go through them and hoped you’d never have to face them yourself–bad enough indeed, it’s the endlessl waiting game that threatens to get me down the most and the quickest.
It was Wednesday mid-afternoon when the news came in a series of phone calls, the sequence of which are pretty mixed up in my memory. On Monday I had learned the lump removed from my breast was benign. The doctor’s assistant sounded so happy when she passed along word from the pathologist that they found no trace of cancer. However, sometimes your world shifts dramatically on one 7-letter-word, in this case “however.” Innocent enough at first, it can and in this case did–turn from innocent to ominous much too quickly. First I was happy and confident I’d beaten the odds once more, and then those nagging doubts and that word “however” slowly begin to surface. Wait a minute. The breast isn’t cancerous, but there was a suspicious looking lump which was successfully removed. Where did that lump come from? It had to get there from someplace else, but where? I was told an unidentifiable lump from the breast is extremely rare. But further study was absolutely necessary in order to rule out other possibilities.
Later I would learn those other possibilities were sarcoma or lymphoma, among other things, all originating somewhere else but not the breast. By that time I was asking those questions myself so that Hubby could poo poo the very idea and reassure me over and over again that the doctor had said no cancer. I trust him–always have–to guide me over the rough lumps in the road we’re traveling together during our life with his enormous personal strength and intelligence. It has always been he who helps me keep my overactive imagination from overwhelming me with with all those what if possibilities that keep popping up.
Every day I learn more about lymphoma. I know that there’s a high success rate of cure in the case non-Hodgekin lymphoma. Of course cure is what I’m hoping for, but there’s no way of knowing at this point if I’m going to win out on this one as I always seem to be the anomaly in all my ailments. I’ll be doing all these studies and treatment through a highly recognized physician at the Huntsman Cancer Institute, which reputedly is at the top of the cutting edge (whatever picture that paints for you) of the field. Their success rate for this type of cancer is good and at this point they expect my case to be no different. The oncologist is out of town, however, until Monday, but her medical assistant is gathering all my previous medical records and setting up appointments for a bone marrow biopsy (sounds lovely, doesn’t it?!) and a PET/CT scan for staging and exploration which probably won’t be possible before Tuesday or Wednesday. That’s where we are right now. In the meantime I wait.
I did decide to ask for help from my family doctor; she prescribed a very low-dose sleeping aid so that I can sleep–there’s nothing more lonesome than to lie away most of the night staring at the ceiling. It’s the time when the most awful thoughts gather and there’s little to distract you, not even a full moon in our current cycle to focus on. The sleeping pill was very helpful even at half-dose and last night I slept a full 8 hours and then some, with no apparent after-effects, just an exotic early morning dream about babysitting two children–one whose legs were fused together but could walk nonetheless. Although they were boys, the children looked remarkably like Bonnie Braids, the Dick Tracey babydoll I wrote about a few weeks ago. Both were small enough to cradle in my palm, and I have small hands, and both were very active to the point of turning their mother’s white carpeting into shades of gray and black, and I could find neither the telephone nor the vacuum cleaner and the children were just as illusive, hiding at every turn. If you can interpret that dream in the comments, I’d welcome it!
I’ve found two things–no, three if I add computer forty thieves games–to distract me very well. I went along yesterday with Hubby to the DMV to renew his license, no easy feat in Utah if you’re an immigrant whose immigrant and citizenship papers date back to the 1970s, and the world there seemed as normal and stupidly bureaucratic as usual, excellent for people watching as well. I began to forget myself watching other people live their lives.
As I sat there I wondered if anyone who looked at me would guess there was anything wrong with me. There’s no big C sewed onto my shirt front to announce to the world that I HAVE CANCER, no flashing neon. It occurred to me then that any number of those hundreds of people sitting around me could be going through the same thing that very moment. They may know it just as I do, or maybe not. I figure it’s best to know. A lot of my upcoming fight will be determined by the tests coming up next week.
The other helpful distraction has been reading, in this case a diary written in the mid-1800s by a woman converting to Mormonism at the very beginning of the Polygamy period. She comes across as very intelligent and a straight shooter with her written words. She figured prominently (years after her death of course) in helping to verify the true story of seven of a group of nine native Americans found in a mass grave here in Utah around 2006. The territory leaders at the time–all Mormon–had written accounts of a battle to suggest a small Indian uprising resulting in an order to shoot to kill for containment of the skirmish. Mrs. Heywood (a 3rd wife of a prominent Mormon) gave details that were verified by agents specializing in Ancient Archeology. The group of skeletons, one male approximately 34 years old, and six males ranging from 12 to 16, were shot and moved to a different location to be dumped haphazardly into a shallow grave to lie waiting to tell their story more than 150 years later. Mrs. Heywood says the group was not only expected, but by prior agreement were promised food and protection. When I’m reading these fascinating entries, and even now as I write of them, I lose myself completely.
In spite of this entry becoming much longer than I intended, I’m posting it to say thank you to all who have been in touch the last few days–through your comments and separate emails–to let me know you care, which makes me feel so grateful for friends who make me feel a little less alone. I won’t be filing a post every day, mostly because I fear the negative vibes about me (even as I struggle to squelch them) will result in pity me posts. I will post when my physical and mental condition coincide. Until I can–hopefully–put all this behind me, I will try to remain positive and live as normally as possible. Tonight the family is having dinner at a new Indian restaurant in town. Thank you all for being here and reaching out with your kindness.
We’ll wait with you.
We’ll read whatever you post.
And we’ll cheer you onward!
Alice – I was lying in bed staring at the ceiling the night I read your post and thought to myself “How can Alice sleep tonight?” so glad you have something to help you (I used Ativan – 1/2 – throughout my mother being in the hospital) – it helps! And today is Tin’s birthday and you have been front and center on my mind, even Tatjana asks me every few hours if I have heard anything. We are here but really there with you, cheering you on as your friend above writes, thinking of you, wanting the best possible outcome/diagnosis/results. Most of all we are sending you all the positive vibes of spring and to know that everyone here in New Orleans is a survivor and there is a richness on the other side of it that might have been unattainable before.
I am with you and praying very hard. That it doesn’t appear to be cancer is a blessing. Hugs!!!!!
Yep, I also read that large B-cell diffused lymphoma is the most common and the cure rate is very high. You are fortunate to have a renowned cancer center in SLC. That makes a huge difference in the quality of medical care you will receive. So far, it sounds as if you’ve had excellent and responsive treatment. Keep yourself occupied. Anti-anxiety and sleeping drugs are good. I’m sorry that your “bump in the road” turned out to be a boulder, but I know you can beat this. Your family and your friends are with you.
Colleen and I agree. We are right here listening to you in the dead of the night. We care. I’m not christian, but the Sunday night AA meeting is held at a Prespyterian church. If you don’t mind, I believe prayer works and would like to have the Presbyterian Sunday night prayer group include you? Is this ok?
I know from personal experience that they can fix your Lymphoma. My friend Delpha survived her bout, and lived a most creative and joyous life for many more years.
Hugs from here.
And I listen a day late, because I usually read early in the morning before you are awake. I’m glad you had a good night’s sleep; hope you actually had two of them. Take it all day by day; this too shall pass and you will go on to easier, more interesting things.
I am making (inventing) strawberry meringue pie and it will be so good, so preternaturally perfect, that I am convince you will taste it across the miles.
Sleep well – please don’t believe you shouldn’t accept help! – and know that we are thinking of you.
I know that waiting for details must be painful. I wish there were better words to say.
I don’t read your blog for a few days, and I’m hit with THIS news. Oh, Alice, I am so sorry that you have to go through this experience! Even though there are many reasons to be positive, it still reeks – a slightly less gross verb than sucks! I agree that limbo is ther worst! I thanked the Catholics for doing away with that awful in-between state found in the here-after, but we’re still stuck with it in the here-and-now. I wish you the very best and will watch and pray.
Uncertainty is indeed dreadful. I just hope your tests go well!
I would like to offer you some encouraging words. My dearest mom was diagnosed in 9/2009 with the same type of cancer. Initially, we were not very optimistic. But, with the help of a very aggressive oncologist and many prayers, her PET scan is clear today. I wish you a speedy recovery. I will also pray for you too!
I am very late in visiting and shocked at the developments. My thoughts and prayers are with you and hubby at this time. Try to take one day at a time, and let tomorrows worry not spoil today.
Been thinking about you this week. Hope you were able to get in for those tests and that THAT part of the waiting is over. My BEST prayers to you. rbs