And there was dancing, and singing, and movin' to the groovin'

This morning, I turned on the 70’s music station to keep me company while I do housework.  I want to finish as much as I can today because I have a bone marrow biopsy tomorrow at 8:00 am, and I’m not sure how “uncomfortable” I’m going to be after that. 

The music was too good to resist, and pretty soon I was rocking out in the living room, much to the dog’s apparent amusement.  Ha – like he has any rhythm.   I’ve always loved to dance… it reminds me of being at Boston’s on the Beach with Andre and Taylor back in my single days.  We’d dance all night – just me and my two best guy friends in the world.  I remember doing the Chicken Dance at Oktoberfest with Katherine too when she was very little and loved to dance with her mom.  I can’t help but wonder when I’m going to be feeling good enough to dance like this again.  I want to remember to do it every chance I get.

After I got my diagnosis, my friend Kathy was the one person I really wanted to talk to.  We’ve been friends for more than twenty years, but had lost touch for the last few, right after she was finishing up her treatment for breast cancer.  Kathy and I have done just about everything together – working at the same job, dating, shopping, French lessons, marriage, kids – and now, if I could find her, I knew that she would help me do cancer.  I knew that she would understand my fears and anxieties, and that she would be the perfect person to laugh and cry with, and to celebrate the fact that we are both alive today, no matter what happens tomorrow. 

I found her through You Tube of all places, and left a message for her.  She called me yesterday, sounding just the same as always, and my heart immediately swelled to ten times it’s normal size.  It was like we’d never been apart.  She gave me some chemo tips, advised against a wig (they’re uncomfortable, and as Kathy says, hair is overrated anyway), and talked about our seventeen year old daughters.  Kathy also told me something I’ve been thinking about since yesterday.  She suggested that when I pray, or when others offer to pray for me, to ask for specifics.  I like the idea of focused prayers very much, so I thought that I would start journaling here about what my prayer specifics for the day are.  If you would like to pray for them (and me) too – I’d be ever so grateful.

Prayer specifics for today:

        

       that my cancer has not spread to my bones or elsewhere in my body

·         that I will be able to be productive after my biopsy tomorrow and move through the discomfort

·         that I will feel up to going camping with the girls this weekend

·         that I will not freak out too much about chemo

·         that I feel like dancing a LOT more before I leave this world, and that I am able to

Okay… had to get up and dance again – “Can’t Get Enough of Your Love” by Barry White.  And half way through, I found myself reaching up to Heaven and singing it to my Father – Lord, I can NEVER get enough of your love.  You make me dance and sing, and you own my heart. 

We're off to see the Wizard...er... oncologist

10November09

Today, I saw the oncologist. We are in the process of staging my cancer.  Sounds kind of like a Broadway show, only not as much fun.  So far, it’s looking like a Stage III or Stage IV low grade follicular lymphoma, which David says sounds like a hairy kind of a cancer.  As you can see, we’re all trying to maintain our sense of humor here.

There was talk about antibody treatments, stem cell therapy, chemo, markers… I don’t care for the lingo and I don’t want to learn it, but that doesn’t seem to be an option.  It appears as though I, the woman who could never learn a foreign language, is about to become fluent, or at least conversant in Cancer.

I have added two more appointments to my burgeoning social calendar.  I’ll have a bone marrow biopsy this coming Thursday and a PET scan on Saturday.  That cuts into the middle of my girl camping trip this weekend, but we’ll work around that.  Priorities.

The oncologist tells me there is an 80% survival rate at 5 years across the board for patients with this type of cancer, but he says it’s not unreasonable to hope for way more than that.  I do.  From what I understand, there is no "cure" for this type of cancer. Instead, I will probably go into remission and then at some point in the future, there is a likelihood of recurrence. I told the doctor that I have a 17 year old daughter at home, and that I wanted to attend her wedding someday and hold her child in my arms.  It’s good to have goals. J

Day Two

Wednesday is a day where a lot happens, and at the same time, nothing much does.  From my perspective, I have been poked, prodded, catheterized, injected, sampled, studied, and drugged.  I have had my personal space invaded by the kind and caring nursing staff and flashed my butt at same nursing staff when I got up to brush my teeth with my gown flapping open behind me.  People keep asking about my pain, but I really don’t have much.  Probably due to the generous supply of Dilaudid provided by my doctors, of which there now appear to be about seven.  There’s the hospitalist who saw me in the ER, the new hospitalist I was handed off to upon admission, a surgeon, a urologist and an oncologist, none of whom I have yet had the pleasure of meeting.  Or at least remember meeting.  What’s to be done with me?  I’m not sure yet. It’s pretty clear that an 8mm kidney stone is not coming out of an opening the size of… well, it’s a small opening.  At least not without some help.

 

I’m tired… dozing off a lot and not able to focus on reading the book David brought me or watching television.  I’m in a delicious drug-induced kind of a haze, where the hospital bed is more comfortable than any I have ever slept in before.  The nurses are great – so sweet, so wanting to make sure that I am doing okay.  I love them all.  Especially Rahima, who lets me brush my teeth and take a shower.  How wonderful.

 

It’s after 8pm by the time I know what the plan of action is.  I’m scheduled for surgery at 7:00 am with the urologist, who will use a laser to blast my stone, catch the pieces in a basket and then put in a stent.  Then, if the surgical schedule can be tweaked, I will be moved from the cystoscopy room to a regular OR, and the surgeon will remove a lymph node or two in order to make a definitive diagnosis of lymphoma or something else.  The oncologist says we shouldn’t jump to conclusions, and I try not to, but I already suspect that the ER doc was right.  It will be easier (for the surgeon and for me) for him to take the lymph nodes  from my groin rather than laparoscopically from my abdomen.  We’re hoping the schedule will permit both surgeries to take place under the same anaesthesia so as to avoid putting me under twice. The anaesthesiologist comes by about an hour later to let me know that we are A-OK for both surgeries.  Boy, these people work late.  I am so grateful for all of their hard work. I can’t help but think that schedules like theirs have got to be hard on their families and their personal lives.

My nurse tonight has a daughter Katherine’s age who is also in the band at Rock Hill High.  She’s so wonderful, and I have a nice time talking with her about the girls and band.  David and I promise to email her some pictures we took at a competition a couple of weeks ago.  It’s good to have a normal, non-medical conversation.  She removes my catheter and the extra IV line from the inside of my right arm (where it is driving me crazy).  Earlier that day, they put a new IV line into the back of my left hand.  Hurt like the dickens when they did it, but that’s a much better place to have it.

 

After midnight, when the nurses and doctors and techs have gone and my room is dark, a few lonely tears escape.  I’m not afraid of the surgery – somehow I know that will be okay.  It’s the bigger, darker thing that looms out there that frightens me. 

And thus endeth the second day.

Flash Forward

These posts are kind of like a movie I saw that started at the end and kept flashing back further and further to the beginning – just a bit confusing and hard to keep track of.

Fred is home from the vet – last night he ate a huge bowl of cat food when he snuck into Katherine’s room.  Cat food has too much fat in it for dogs to digest, and he made himself good and sick.  The vet pumped him full of fluids – he literally looked like he was wearing a jacket made of water.  His back  wobbles when he walks.  They also gave him something for the nausea.  He may have pancreatitis from his celebration of gluttony – we’ll know more within the next 24 hours.  He just threw up again, but seems otherwise better if somewhat subdued.  He’s chilling on the sofa with a blanket over his water hump.  Poor Mr. McFrederson. 

While David was at the vet, I got a call from my surgeon.  I told him I’d just been admiring his work, and he seemed amused.  We exchanged some small talk about my incision, it’s healing process and my follow up appointment with him on the 20^th.  He said he had my pathology results and asked if I had spoken with anyone about them yet.  I told him I hadn’t; that I have an appointment with the oncologist tomorrow, but that no one would give me any info over the phone.  I said “I guess you don’t want to do that either.”  He replied “I will if you want me to.”  I did.  And he did.  “There are two types of lymphoma” he said.  “Hodgkin’s and non-Hodgkin’s.  You have non-Hodgkins lymphoma.” 

“Thank you so much for telling me” I said.  “I really needed to know.  Now I can move on from here.”   I like Dr. Crain.  He’s a little on the dry side and very serious, but he gave me a precious gift – information.  Now I really do feel as if I can proceed.  Now that the diagnosis is in place, the plan can be formulated.  I am a planner, and it gives me some measure of comfort to know what’s coming.

I email the Rubies (more about my personal flock of angels later) and some other friends to let them know the diagnosis.  I’m not hiding this – the more people I tell, the more there are who can pray for me and ask their friends to pray, and their families, and their churches, and their paper boys and checkout clerks and their postmen and anyone and everyone they know who will take a moment to pray for me and for my family.  If you are reading this, would you mind saying a little one right now?  Thanks.

Back to the beginning...

Up until now, I think I’ve been handling this whole thing pretty well, if I do say so myself.  Of course, feeling that I have been covered with a warm, fuzzy blanket of prayer has helped immensely.  I’ve prided myself on staying calm and focused, retaining my sense of humor, and just taking the one necessary next step at a time. 

Let’s back this train up to last Tuesday, so you can see where it all began.

I’d been having some pain in my back and hips lately, and attributed it to arthritis.  I’d never had arthritis in my hips, but I do have it in my hands, and at nearly 50, it seemed reasonable to assume that it might be spreading, exacerbated by the cooler, wetter weather we’ve been having.  I was having trouble getting warmed up at the gym – I was stiff, and it didn’t seem to go away.  I started doing more stretching and less circuit training, but I just couldn’t get loose. 

It was the first Tuesday of the month – stamp club.  I was prepared (for once) and had already completed my project to share.  I’d made two hybrid cards; a combination of traditional paper crafting and my new Digital Studio program – something I was in the process of getting certified in.  I was excited to show the girls at club what I’d done.  

I was also in my traditional pre-that-time-of-the-month cleaning frenzy.  The laundry was all done, the floors mopped, bathrooms cleaned – the house was looking good.  I knew it was “that time” because I was cramping, although the pain seemed to be only on one side, and was stabbing right through to my back.  At 4:00 pm, I took a couple of Tylenol and lay down for a while with Fred.  By 5:00 pm, the pain was gone and I got up and started dinner.

Although I didn’t have much of an appetite, I ate a pork chop and had some fruit.  I went upstairs and put on my makeup, getting ready for club.  The pain started coming back – quickly, taking me by surprise.  It was 6:30 pm, and I told David I wanted to lie down for a few minutes and see if the pain passed again.  About fifteen minutes later, I asked him to call my friend and tell her I wasn’t feeling well, and would not be at club.  By 7:00 pm, I was in the bathroom crying and admitted to David that I probably needed to go to the hospital. 

By 7:30 pm, I was in a wheelchair in the ER, crying softly and writhing from the worst pain I had ever experienced.  The waiting room was crowded with people waiting to be triaged.  Many were wearing surgical masks as a precaution against the flu.  I was embarrassed to be crying in front of everyone – they were all eyeing me uncomfortably – but I just couldn’t stop.  David told me later that he was toying with the idea of wheeling me outside and calling for an ambulance from his cell phone so that they would see me more quickly.  During this whole ordeal, I felt the need to keep apologizing for the inconvenience.  David has been travelling almost non-stop for the past three weeks, and the poor man just got home Monday night. 

By 9:30 pm (and here I am relying on David’s time line, as mine is somewhat blurred) I have seen a doctor, had a CAT scan and felt the blessed relief of IV Dilaudid.  They’re pretty sure I have a kidney stone.  I had heard the pain from a kidney stone was worse than labor pain, and I had always maintained that anyone who said that had never experienced a labor pain.  I was wrong.  I’d take labor any day. 

Some time later that evening – I’m thinking maybe 11 pm or so – the doctor came back in with the results of the CAT scan.  I did have a kidney stone – a huge 8mm stone – the cause of all my pain, and as it turned out, one of the greatest blessings of my life. 

The kidney stone that caused the pain, that brought me to the ER, that got me into the CAT scan machine also caused another surprise to be revealed – lymphoma in my groin and abdomen.    Maybe it was the pain meds, or maybe it was the total unreality of the words, but I took the news with complete calm and maybe even a little nonchalance.  The ER doc explained that lymphoma was a very treatable cancer, and that if he had to choose a type of cancer to have, lymphoma would be the one to go for.   He tells me “I’ll be honest with you – it’s going to be a rough couple of months, but this cancer has a high cure rate.”

By 3:00 am, or only a few doses of Dilaudid later, I am tucked into a hospital bed and sleeping soundly.  And thus endeth the first day.

It's too much

Monday, November 9, 2009

10:00 am – This morning I completely lost it.  Fred (my rat terrier) is sick – cold, shivering and vomiting.  I don’t know what to do, so I call David crying.  This is his first day back at work after being at the hospital with me for the last three days.  He hasn’t even been in the office for an hour yet, and I am calling him to come home.  I don’t have a car today, so I can’t take Fred to the vet myself.

David doesn’t hesitate – he tells me he’s on his way as soon as I tell him what’s wrong.  I wait the 20 minutes or so it will take him to get here, still in my bathrobe, rocking and crying and begging God to please not take my dog.  David arrives, lifts Fred gently from his crate and prepares to transfer him to his carrier when Fred vomits again – nothing but foam.  He leaves with Fred and I stumble to the shower, where I completely break down.  “It’s too much” I sob to God.  “It’s too much.”

I notice that my hands are going about their business; washing my hair, soaping my body, skimming gently over the suture line where the surgeon closed my leg back up after removing two very enlarged lymph nodes just four days ago.

Four days ago my life was normal.  Then, within 24 hours, it went spinning out of control, leaving me here, shaking and crying, wet and naked, begging for God’s help.  I know he is there, but I can’t feel him just now.