Billiam's Lymphoma

Last Update

2009-02-25T23:25:00.004-07:00

Since William has begun blogging about his Lymphoma experience I figure there's no need in me continuing here. If I need to get anything off my chest I know your phone numbers and email addresses.

You can keep up with his condition and observations about his treatment at http://www.dubious-maxims.blogspot.com/

You can also feel free to visit my blog at www.abraxanminis.blogspot.com

Oh where to begin...

2009-01-30T09:57:00.004-07:00

This has been one helluva week. It's difficult to know where to begin which is why it's taken so long for an update.

To set your minds at rest, William is okay. I have a hard time spitting out "he's okay" because he's only "okay" as a person with lymphoma can be. He's not "okay" and won't be "okay" for quite a while. He is, thankfully, "improving" steadily. After two years of clean PET scans perhaps this lead bowling ball in my stomach will melt and I'll be able to say, or hear, "He's doing okay!".

He's losing hair pretty substantially now. While we don't really care about the cosmetic aspects of that, the hair loss is a constant reminder of the lethal beast we are battling and the toxicity of our best weapons. We try to laugh about it. "Yanno honey. I've never seen your upper lip..." and "I'm afraid to blow my nose because I'm afraid my nose hair will come out." But the truth is, that each time he reaches up, combs his fingers through his hair and comes away with 20 or 30 hairs, our stomachs drop.

The "Neulasta" portion of the tale:

Because the chemo is lowering his immune system, as chemo does to most patients, he is getting injections of a drug called Neulasta to boost his blood count. He could explain this drug to me ten times a day and still most of that information oozes rapidly out of my brain. The drug has something to do with recombinant DNA. It's a heavy duty drug. However, it is not made of platinum, gold and diamond dust and therefore, does not warrant it's $2,480.00 (per injection) price tag. Look up the statistics on how many people receive chemo each year and figure that 90 to 95% of those patients are going to suffer a low blood count. If every office is like ours and won't give the chemo with a lowered blood count, then figure every one of those patients is having to fork over at least $4,800.00 per month for Neulasta.

The only reason we know how much these injections are is because we had to change insurance companies at the beginning of January. We had to use the conversion insurance that would cover the pre-existing illnesses. We're paying over $1,500.00 per month just for the two of us, for this new insurance, but I won't go there now, that's another whole blog post or three. Suffice to say it's lousy coverage and we will not be keeping it once he's clear of cancer.

Anyway, because we have new insurance the doctor's office had to be sure we hadn't just printed up fake insurance cards on card stock (because that's all the insurance company provided, flimsy paper cards, damned things should be 24 carat gold embossed). The insurance coordinator came back and said she couldn't get confirmation on our insurance. She said she got a message saying the office was closed "due to holiday snow" (that is a precise quote). They asked us if we wanted to pay the $2480.00 out of pocket along with the 750.00 chemo (yes, the shot is three times more than the chemo treatment.) "Good god, we can't pay that in one go."

I looked at my card. The insurance company is in Indiana. I told her "No way are they closed for snow. They're in Indiana. They get snow all winter, every winter. This is why none of us can find parking in the metro area because the spaces are taken up by people from Indiana. I'll call them."

Here is a lesson I've learned. When you are in dire need of speaking to an actual person and can't wait for useless recorded information or wander aimlessly through a phone menu maze, not when you are just late to meet a friend at Starbucks because THAT would be really cheesy of you, but when you are in dire need of speaking to a human quickly, listen through the menu and if you hear "for all other questions..." choose that option.

I ignored the options for "benefits" and "verification" and chose "for all other questions...". I was instantly connected to a real human and handed my phone to the insurance coordinator. I then followed her to her desk and sat with her while she was transferred to various desks, went through a couple of phone menus, before finally getting through to the person who could verify our insurance and tell us if we needed to have the treatments pre-certified. Sitting by her side like a loyal old dog prevented her from giving up on the madness of being transferred all over India to find out if we had insurance.

Straightening out this mess took about an hour. When I got back to the chemo lab the nurses had taken the I.V. out. William says he overheard the nurses talking about how waiting too long might allow a clot to form or something but when I asked them why they'd taken it out they told me "We were told the insurance couldn't be verified and you couldn't pay for the Neulasta". If it had been later that same day I'd have bitten her, but I had "get the chemo done with" tunnel vision and didn't think about the ramifications of what she had just said. Wednesday turned so sour for me that I actually didn't think about the fact that if you can't afford Neulasta and you don't have insurance YOU DIE, until late Thursday.

One more thing about Neulasta. The side effect (yeah, more side effects) is bone pain. So, within an hour post-Neulasta William begins to ache which progresses to a goodly amount of pain all over which lasts 2 or 3 days. Just doesn't seem fair does it?

Hi ho Hi ho

2009-01-21T21:19:00.004-07:00

It's been back to work week. William managed to avoid further side effects over the weekend and went back to work on Monday. It's so unfair that he has to work as bad as he feels. Even though he is greatly improved, he still feels awful. It's just a much less awful awful than he felt prior to the start of chemo, if that makes any sense.

The cancer and the chemo leave him exhausted and weak. He's weak and tired when he wakes up and leaves for work, drives clear across town, works 8 to 9 and 1/2 hours, drives the 40 miles home, and can do little other than eat a light dinner and lie down. Some nights he sits up at his computer for a little while before giving up and heading to bed. He doesn't think he's brave, but the truly courageous never do. He has to ride that rank bull not for a mere eight seconds but 24 hours a day, 7 days a week and hold down a job.

He's having difficulty sleeping at night. He has stopped drinking coffee, those of you who know him well are likely as amazed as we are by that fact. He has a cup in the morning before leaving for work and that's it for the day. The generic Ambien he was prescribed has no effect on him. Perhaps he's just too exhausted and weak to sleep? We don't know why, we just know we've tried every trick we can find and nothing has helped so far. He settles for cat napping through the night and calling it good enough. I'm sure that's not helping the weakness and exhaustion either.

He had an office visit with his Oncologist today and got a beaming report on the diminished state of the monster. The swollen nodes on the left side of his neck are completely gone. The nodes on the right side of his neck are almost gone. The profound swelling in his left thigh is down about a full 1/3 from where it was and below the knee his calf is only slightly puffier looking than the normal leg.

The nodes in his torso must be greatly reduced as well because he's gotten quite a bit slimmer in the middle. When all of this started back in November and as it got so much worse in December, his face had begun to look slim, his arms and shoulders were getting so thin I could see his shoulder bones and his right leg was getting almost scrawny. The monster was making some parts waste away while ballooning out in others. We couldn't understand at first why he seemed to be gaining weight in the middle while losing so much everywhere else. Now we know. As the chemo melts the swollen nodes, his left leg swelling reduces as well as the swollen nodes in his abdomen and chest.

The Oncologist tells us that William is doing as well as we can expect at this point and said that it was remarkable to see this amount of improvement so quickly. I think it's the chemo combined with the positive energy from all our many friends and family coming to us from all around the world.

Chemo Round Deux

2009-01-14T15:37:00.002-07:00

William's stomach pain started improving by Monday and yesterday he felt so much better that we went out to breakfast after he had his pre-treatment bloodwork. Sitting in the hard restaurant chair was uncomfortable for his hip and back but it was so nice to be able to get out and do something normal he didn't care about that discomfort. We haven't been out of this house together for anything other than medical appointments and Christmas Eve at Mom's house since Thanksgiving. It was good.

Today, his chemo went well but he didn't sleep well last night so chemo really took a lot out of him this time. He came home ate a little bit of lunch and was snoring within 10 minutes.

His doctor said he's responding really really well to the treatment. The lymph node swelling has gone down markedly which really surprised the Doctor. The blood count done yesterday was only slightly low. The doctor was not concerned about that at all but the Chemo people decided to start giving him Neulasta injections just to be on the safe side and keep the counts up. William remembered to ask the doctor about the bone marrow biopsy this time and we are all excited to report that no lymphoma cells were found in the marrow sample.

Okay, cross fingers, toes, eyes or whatever that the chemo doesn't make him sick this time around and that he continues to improve over the weekend.

As always I sure do appreciate hearing from you all and thanks so much for all the positive vibes. They're working well.

Love,
jean

I know I know I'm sorry

2009-01-09T16:26:00.002-07:00

I promised updates and I'm not holding up my end of the bargain.

It's been a crummy week. There. I said it. His abdominal pain escalated. His mother took him to the doctor for me while I ran to the grocery to buy everything that screamed "HIGH FIBER" at me because we'd been told the pain was likely caused by constipation.

The doctor palpated his stomach and found what he thought were small blockages so he sent them to Walgreens for Milk of Magnesia.

Well, the update is that between the Benefiber, Activia Yogurt, stool softeners, green leafy veggies and Milk of Magnesia (twice) he's finally pooping up a storm. Unfortunately, this has not helped his stomach pain as he's still racing for the medicine cabinet every 6 hours and would take them every 4 if I weren't such a harpy about it.

Also, his leg is hurting again. Not as bad as it was, but it's pain, it's back and that's f-ing bad news to both of us.

Maybe he'll still have a job in a couple of weeks??????? They're being patient now, but they can't be patient forever.

Weekend update

2009-01-04T21:32:00.003-07:00

Well, William has had a tough weekend. He'd felt great, just a little bit run down, Wednesday and Thursday. Friday he started feeling bad. Saturday he started having some severe stomach pain which has continued all day today. We're able to control this pain with pain pills somewhat, but it's a disappointment. He's also started running a mild fever. Thus, first on the agenda tomorrow is a call to the doctor.

Hopefully we'll hear that the stomach pain is a side effect from the chemo and not some fresh hell. Hopefully they'll give him medication for the fever which is probably the sign we were watching for that signals a lowered white cell count.

The good news is that the crushing pain he was enduring prior to the chemo is still gone, and the swelling in his leg is slowly lessening.

He'd hoped to go back to work tomorrow.

Financially, he needs to go back to work tomorrow but it's not going to happen.

One down, twelve or so to go.

2009-01-02T08:00:00.002-07:00

William had his first chemo treatment Wednesday morning. We both lost sleep Tuesday night worrying over this unknown thing. We'd read about it and knew what to expect, then lost sleep expecting it all.

Our expectations were enhanced by the literature he was given regarding the drugs that would be used. I will not name the various chemicals here simply because I can't. Their names were about a foot long and I've long since forgotten them. Mainly what I remember was William's reaction to reading the drug literature. At one point he abruptly closed the leaflet and said "I'm not going to read any more of that one." At another point he said "my god, this one is related to Mustard Gas." He asked me to stay until they started the chemo so I did.

We were the first people to occupy the chemo lab. There were 25 to 30 puffy recliners in rows. The room slowly filled while we were waiting for the first two "pre-chemo" I.V. bags to drain. One bag was to help prevent nausea during the treatment, the other bag was a steroid and something else that would also help prevent nausea. They did their job. William didn't even feel faintly ill during the treatment. This event we were both looking forward to and dreading, turned out to be a real non-event. He didn't feel anything burning his veins, there was no nausea, no side effects at all. He dozed and read for 2 hours.

We were told that the pre-chemo drugs would stay in his system for a couple of days and would continue to help with the nausea. We got a prescription to help with nausea as well, adding to the overflow in our now burgeoning medicine cabinet. Two years ago, our medicine cabinet held Aspirin, Tylenol, Pepcid, Alka-Seltzer, Excedrin and Nyquil at most. Now we have blood pressure pills, blood thinners, cholesterol pills, pain pills, sleeping pills, anti-nausea pills, anti-anxiety and anti-depression (the need for these being exacerbated by the reasons we need all the other pills), pills and powders for constipation (caused by the lymphoma as well as the anti-nausea pills and pain pills), plus all of our old standbys. Two years ago our medicines took up about 4 coffee cups worth of space in what used to be the narrow 3 shelf coffee cup cabinet. Now there is no space for coffee cups on those 3 shelves. Better living through chemistry.

We've been waiting for the side effects to begin, but so far so good. William says he feels kind of heavy and feels kind of like something is sitting on him. Once in a while he gets slightly nauseated, but he's only vomited once and got right over it. What has us overjoyed for the moment is that the soul crushing, crippling pain, that had driven him to two pain pills every 4 hours, has disappeared. We're hoping to the heavens that this is not just a temporary respite caused by the I.V. steroid pre-chemo treatment. He has only taken 2 pain pills since the morning prior to the chemo and those he took for help sleeping, not pain. Two entire days with no pain other than a mild headache. We're pretty damned ecstatic about that. Prior to the chemo he was unable to bend his left hip at all anymore. He walked, agonizingly, just dragging his immensely swollen leg because he couldn't lift it. Now, he can lift it about 3 inches off the floor while standing.

If we had to enter the new year in this manner, these improvements are the best we could have hoped for. If these improvements are temporary, caused by the steroids and anti-nausea I.V.s, then at least he's had two entire days without pain and able to hold down food. We'll happily take whatever good days we're given.

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

2008-12-24T12:52:00.002-07:00

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

2008-12-23T11:40:00.002-07:00

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

2008-12-19T17:32:00.002-07:00

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.

2008-12-19T07:56:00.002-07:00

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?

2008-12-17T16:00:00.002-07:00

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?

2008-12-16T08:00:00.002-07:00

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?

2008-12-14T09:55:00.002-07:00

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

2008-12-13T14:02:00.000-07:00

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.