Happy Holidays, we're giving you a bone marrow biopsy.

I got a call from our Oncologist's nurse asking us to spend Christmas Eve morning in their office for William's bone marrow biopsy. This came as a bit of a surprise to us. I talked to this nurse yesterday and she said he might not even need a bone marrow biopsy. While her opinion was contrary to what I'd read online, I was willing to grasp hopefully to it yesterday. All I was half-way expecting from their office today was a phone call to let us know what we needed to do next.

We, of course, won't have the results of the bone marrow biopsy until next week sometime but starting chemo isn't dependant upon those results. William's chemo will start next Wednesday. Before you look on your calendars, that would be New Years Eve. Happy Holidays.

We received the full and official word in the diagnosis this morning. We're fighting Stage IV Hodgkin Lymphoma. I'm sure they'll attach the letter B to this diagnosis because he's having symptoms like sweats and general whole body itch associated with the disease. Thus far everything our doctor has explained to us is identical to what we've read online.

William will begin a moderately aggressive form of Chemo beginning next Wednesday. He will receive a treatment once every two weeks for two months and then will need another PET scan and another bone marrow biopsy to make sure the treatment is making significant progress.

He feels bad, he hurts, he's shaken up by both the procedure and the surety of the diagnosis.

The Monster Has a Name

When I started this blog, the title came from some half-hearted joking about un-named generic lymphomas. There are two basic types of lymphoma, Hodgkin and non-Hodgkin. We decided that anything that was causing this much mayhem in our lives deserved a name. Thus, the blog title became my name for the beast, "Billiam's Lymphoma", for the man known as "Bill" to his family and "William" to ours.

Yesterday William had one of his lymph nodes removed and had the shunt/port, or what we like to refer to as his "Port-o-let" or Borg Implant, installed. The surgery went well and didn't take as long as the surgeon had predicted. William felt pretty good when we got home and much better after his medications. Too much better actually. He'd been told by the surgeon, the nurses and, repeatedly, by me to take it easy, stay in bed let the surgery heal for two days before he started getting up and around much. I thought I was going to need to duct tape him to the bed. Up and down and up and down. Every time I turned my back he was hopping out of bed for something that I could have easily and happily gotten for him. He was about to get a knock in the noggin.

He also ate like a champ for the first time in weeks last night. Our neighbors, the dog ranchers, gave us a giant Stouffer's Lasagna and an equally gigantic Stouffer's Mac and Cheese tray. Billiam was in pasta and cheese heaven. So, Pat and Diana, it was a BIG hit for him and a real life saver to me because I was exhausted by yesterday evening and very grateful I didn't have to do anything more than toss those trays in the oven for an hour.

The surgeon, called this morning to let me know that he'd gotten a preliminary report back from the pathologist on the lymph node. He hadn't expected to know anything before next week so I don't know if he hounded the path lab on my behalf since he knew how worried we've been, or if the path lab was just that quick this time. Without further ado, the name of the beast attacking my husband is Hodgkin.

I don't know whether to rename the blog or not. I'll think about that another day.

The meeting with the Surgeon

The meeting with the surgeon went well. He too seems thorough. Lord knows he was understanding enough and on the ball enough to have recognized that William needs this biopsy right away.

He had happy words, before he scared the crap out of us. He told us that the hugely swollen lymph nodes usually just melt away during chemo. This is good news since William is becoming more crippled each day from the pain in his enormously swollen leg. At that news, we both actually started looking forward to the vomiting of chemo. Anything to get rid of those swollen nodes.

Then he got down to the brass tacks of the meeting, which was to explain the biopsy procedure and the placement of the "shunt". I don't know what I was picturing, but it sure wasn't what was explained to us today. I guess I pictured just your basic I.V. implant. I wasn't expecting the implant plus a rubber tube that goes directly into the jugular vein and extends all the way down to near his heart. Neither was William.

I was so shocked by this revelation that I didn't ask the surgeon my main question which was "Why is this implant necessary? William doesn't mind getting a new I.V. for each treatment." But that's okay because the surgeon continued to explain that putting the chemo into smaller veins such as the hand or arm burns up those smaller veins because it is so toxic.

At these words our unspoken thoughts once again collided overhead "SO THEY'RE PUTTING IT DIRECTLY INTO HIS/MY HEART INSTEAD?" Apparently, at least from what we managed to grasp after that second revelation, the larger blood vessels move the chemo through much more rapidly, leaving less time for damage. He didn't say NO damage, just less damage.

Another fun shunt fact is that "sometimes they get infected". Which means that during chemo when his immune system is depressed, should the shunt become infected it could rampage through his entire body quickly. It would have to be removed and the site nuked with antibiotics. A new shunt would have to be placed. I don't even want to think about hospital borne viruses and bacteria. I'll think about that tomorrow. Maybe not.

So, that's where we stand this Friday evening. We're actually wondering which might be worse, that swollen leg and the lymphoma or the chemo. I reckon we're at "The treatment may kill him, but he'll die without it anyway." stage.

The biopsy is scheduled for Monday morning. We're to arrive at the hospital between 9:30 and 10. They'll prep him and the surgery will be around noon.

I'll reply later.. maybe.

I do appreciate y'alls comments. They help give me strength to get up and fight when I don't even feel like getting up to tend to my own needs. To know that we have a cheering section is a big help because it reminds me of all the people standing behind us to catch if we fall.

So, if I don't reply to comments. Please understand that it is certainly not because I don't appreciate them. Right now I just have a hard time talking about what is happening. I want to curl up in a soft blanket, plug into my iPod and let it tell me stories... for about a year.

But somewhere in all of this there may, although I don't see how, be something that happened that might help someone else somewhere else. So I try to at least blog. I sometimes have to leave out some things that are just too frightening for me to think about for a few days, or forever. In Gone With the Wind, Scarlet O'Hara says; "I can't think about that right now. If I do, I'll go crazy. I'll think about that tommorrow."

Blogging is also a lot easier on my low energy reserves, not to have to write everyone separately and no way do I have the energy or the stomach to "discuss" what's going on when most days just thinking about all of this makes me sea sick. I know y'all understand that and I appreciate that understanding.

I read every comment as I post them and they are much appreciated.

Love,
jean

Could I find a good surgeon on Craig's List?

I became almost desperate enough to put an ad on Craig's List looking for a General Surgeon who gives a shit. I was ready to call the local news channels and put my, now quite haggard looking, face on TV begging for an hour of a surgeon's time. If Craig's list and the news channel hadn't worked I might have just told William to lie down while I sterilized an exacto knife and numbed his neck with a bottle of ambesol.

The search for a surgeon has been going on, supposedly, since last week. I've been checking in at the oncologists office about it and they've professed multiple problems with getting Insurance authorization, finding a doctor in our insurance program, etc. This week I called and they said they'd found a doctor, had faxed him our records and told him it was STAT. I was told this surgeon's office would call me. They didn't. I called the oncologist back today and was again told the other doctor's office was supposed to call me. I answered "Well, they haven't, may I have their number please?"

I couldn't get through the damned maze of an answering system to a real person. I left a message and 3 hours later got a call back. They wanted to schedule an "Initial Consult". I asked if we could also schedule the biopsy at this time so we didn't have to wait another week. I was transferred to the "surgery scheduler". I asked her that since we had to make all possible haste on this biopsy, if I could go ahead and get the surgery scheduled for next week since we'd be seeing the doctor for the consult on friday. She said "Well, yeah. I guess. But he won't be having surgery until well into January anyway so I don't see how it makes a difference".

"Umm. This is supposed to be a STAT. This is lymphoma. We need that biopsy in order to start Chemo."

"Your doctor's office didn't tell me it was STAT"

"They told me they told you it was STAT when they faxed you our records."

"Well, our doctor isn't even going to be here. He's on vacation until the New Year."

"Did you tell my Oncologists office that?"

"They didn't ask." (I kid you not. She said "They didn't ask")

"Do you not generally volunteer that kind of information when a doctor's office calls to make a surgery appointment?"

"I don't appreciate being spoken to like I'm an idiot."

No. I was good. I did not say what I was thinking. Hopefully I was thinking LOUD enough for her to hear it though.

My cork blew. It was 1:20pm and I was still getting the "Our office is closed from 12:00 to 1:00" message on the oncologist's answering machine. I grabbed the truck keys and hit the road. I was loaded for rabid bull elephants.

"Do you have an appointment?"

"No, I would just like to speak to the Dr."

"Are you a patient?"

"No, my husband is the patient?"

"Does he have an appointment?"

"No. It's just me. I would like to speak to my husband's doctor. I'm in no rush. I will see him at his convenience. I'll just sit here and read. I'll be absolutely fine even if I need to wait all afternoon."

I didn't even have time to open a magazine. The nurse called me back. I explained the problem to the nurse. The Dr. came in, perched on the exam table, and I told him the problem. I told him that if my husband's biopsy could wait a couple of months and if his treatment could start in a few months and everything would be fine, then he needed to tell me now. He said in his completely calm and kind way "You won't have to wait". He says these things and the look in his eyes says "You can trust me." and I do.

His nurse remembered that she had a friend who worked scheduling surgery. One phone call to her friend and we have an appointment for a consult on Friday and an appointment for the biopsy on Monday. That little nurse is a team player on the side of the patient. This is good. I can trust her too. That makes two doctors and a nurse, willing to play on the buddy system.

They had to see my red eyes and I had to see the whites of theirs and we got this done. The phone tag plan wasn't working. Lesson learned on all sides.

The monster got shoved into a corner.

uhh what swollen node in his lung?

We met our Internal Medicine specialist yesterday. The man is A-OK in my book already for two reasons.

1. When this adventure began, the lymphoma was found on CT scan by his cardiologist. The cardiologist made an appointment with this Internal Medicine specialist and sent the CT results to him. Rather than waste further time seeing William first and then sending him to an Oncologist, the I.M. doc called and made us an appointment for the very next day. This of course makes great sense, but very few doctors around here would have done it.

2. He asked if William was having pain and when William told him yes, the doctor automatically said "I can write you something for that." He asked if William had been coughing and I said "Yes, badly enough that he often throws up. Between the pain and the coughing he isn't sleeping." This fine I.M. said "I can write a prescription for that too. Cough syrup with codeine may help with the cough and it should make you drowsy enough to sleep." We didn't have to beg and plead for relief, we didn't even have to ask. In a town where all the doctors and medical personel seem to look at every patient asking for pain medication as if they're meth addicts, our new I.M. is an absolute GEM.

What caught us off guard at this visit was when we mentioned the cough. The doctor said "It may be the swollen lymph node in your lung." No one has discussed the CT scan with us really, other than the "Significant Abnormalities" bit. Our mutual unvoiced thoughts struck each other in their fast track across the 4 feet of space separating us. "Uhh. What swollen lymph glands in his/my lungs?? That's not good is it?" The crash of thoughts awoke the monster in the corner. He uncoiled and grinned maliciously at us both.

Symptom or something else?

What is the line between keeping ourselves informed and knowing too much? We know as much about lymphoma treatment as we can without having experienced it for ourselves. We've also read about all of the symptoms of Hodgkin's and non-Hodgkin's lymphoma. This means we know what to look for and what to report to the various doctors, but this also means we're staring at every tiny thing and wondering if this is a progression of the disease.

Pain, itching and bruising are symptoms. William's swollen leg itches at times, hurts all of the time, and his foot looks flushed. We can be pretty certain that these symptoms are due to the extreme edema caused by the lymphoma. But what of the itching back? Is that just a back itch or is that the disease? He has a tiny bruise on his arm, is that just a bruise or is it the lymphoma?

He has been coughing until he vomits all weekend, he was nauseated all day yesterday and couldn't keep food down until well into the afternoon. Is this the monster? His diaphragm hurts and feels tight. Is this the result of the vomiting or his muscles complaining about the stress test he had on Friday? Is the vomiting a delayed reaction to all of the crap they've dumped into his veins for all the many tests this week? Is the monster attacking this quickly and violently?

We need to know. We don't want to know.

The week the earth stood still

Tuesday morning I got the call. "Significant abnormalities" were seen on my husband's recent CT scan.

I asked "what significant abnormalities?" I thought my cell phone dropped carrier as my question was met with total silence.

"Hello? Are you still there?"
"yes. I'm still here."
"What significant abnormalities?"
silence.
"Hello?!"
"I'm here. I just, I just don't know how to tell you this."
and then the earth froze.

A string of frantic phone calls, hurried appointments, and emails ensued, but the earth has not turned. We have moved through a vacuum. Words and information bounce off some invisible force field surrounding me. Everything is flat rather than glossy.

I do what has to be done and no more. My brain has ceased to function for purposes unrelated to my husband's disease and treatment. I have to consciously force my mind to deal with other issues but I'd have an easier time roping a grizzly bear.

This is just week one. After 5 days we don't really know any more for certain than we did at the time of the "Significant Abnormalities" and "must start treatment right away" phone call. All the doctors have told us is that it looks like Lymphoma. We will need lymph node biopsies, bone marrow biopsies and a PET scan to tell us for sure that it is lymphoma, what type of lymphoma and what areas of my husband's body it has infiltrated.

Next week is filling up with appointments. My head is filling up with fog that clears only when called upon to make appointments, or to call one doctor to tell him the other doctor has left two messages and needs a damned call back NOW. Nothing is in focus. I'm not even sure that I'm remembering to blink.