Days 3 & 4

This is going to be short and sweet.  Words cannot begin to express how crappy I feel at the moment.  But I wanted you all to know the latest.

I ended up going home yesterday afternoon after a several failed attempts at injecting chemotherapy into my spine.

It’s strange, but after wanting to badly to go home, after being here, I wanted to go back to the seclusion and silent of the hospital room.  Today is better, but still that feeling remains.

Today was my first Father’s Day and although it was memorable, it was far from enjoyable.  I am having a very difficult time adjusting.  I think I would get along quite nicely by simply staying in bed all day, but some words from one of my doctors to “resist the fatigue and stay action” makes me feel guilty about doing that.

Despite that, I have taken several short naps throughout the day, trying to balance the warring feelings inside myself.

Tomorrow I have an appointment in the afternoon for an injection to help boost my white blood count.  At some point I will also need to have the chemo injected into my spine, they think guided by x-ray or some such.

Thank you for all of your well wishes and know that although I don’t respond, I do read them and each and every one boosts me up.

xo
Frank

Day 2

Day 2 (yesterday) was much less eventful (Thank The Powers!) than Day #1.

Well, first of all, I have no hair left to shave. Well, I do, but that would require me either get into some very compromising positions, or to pick up one of these. Neither of which I want to do, so I’ll keep what I have.

I woke and noticed first thing that my hips and pelvis were much more mobile and in much less pain than they’d become since I was in the hospital. (Apparently because the lymphoma is in the bone marrow down there, it’s causing problems for those areas. So much so, that I have what’s called a Patient-Controlled Analgesic machine that dispenses dillauded intravenously when I press a button.). I was able to get out of bed without having to maneuver and lift my legs with my arms! And there wasn’t any pain from walking! It was really impressive!

Around mid-morning, a very friendly-looking woman came in and said, “I’m the Discharge Nurse and I need to prepare some things for you so you can go home tomorrow.”

I almost jumped out of my bed! I get to go home! I mean, I knew it would happen, but they were saying they’d have to keep an eye on me blah blah medical jargon, etc. But here was a real person preparing stuff for me to go home!

The rest of the day was uneventful until around 3pm, when I GOT A FEVER! UGH! Talk about a buzz kill!

So my support team (Mom!) kicked into action by making ice packs and the nurse gave me Tylenol.

In the early evening, the nurse hung the chemotherapy bag from the IV pole and it ran for the next 2 hours.

Chemotherapy with a fever.

Always a winning combination.

Unfortunately I ended up feeling pretty crappy for the rest of the evening. And the fever continues even as I write this.

Day 1

(I apologize in advance for what have to be innumerable grammatical and general language mistakes.  The pain killers prevent me from keeping my eyes open for periods longer than 3-4 minutes at a time!)

Day 1 of Chemotherapy was not one of the highlights of my life (although it did end up feeling like it was one of the longest of my life!).

I had decided that I was going to claim as much power during the chemotherapy process as I could, so asked my dear, sweet, beautiful partner to bring the hair shavers and after little ado,

On My Terms!

Haven’t you always wondered what you’d look like without hair? This was such a liberating, and dare I say, “fun experience!

First, I’d always wondered if I have the technique to shave a head correctly (sorry, old Beauty School Day sneaking through there!). There really are right and wrong ways to shave a head. Done correctly and hairs on the head will shimmer in the light. Done incorrectly, well, let’s just say it could end up looking like a weed wacker got taken to your head!

Then of course I wondered what this big ole’ brain bag would look like without hair. I’m biased (and severely hopped up on pain killers, but from what I can see (and remember long enough to judge and comment on!) I think I’ve got a right nice shaped head! Although not having bangs makes that big old bump (what is that anyway?!) bigger, and oldder, and bumpier!

But most of all, I had to take my own hair off of my head when I wanted to do it, not after watching clumps and gobs of it fall to the ground. The doctors said that not everyone loses their hair, but that most do. I’ve never been a gambler, but “most” doesn’t sound very favorable! So off it came!

(Speaking of odds! Did you know that in the United States, only about 100 new cases of Burkitt’s Lymphoma get diagnosed with each year? YesserrrreeeeBob! I’ve got luck! Source )

So after the New Do and Realizations of how lucky I truly am, I ordered and ate breakfast. Which was good I had done it quickly, because they (which means someone from the medical complex) showed up to install a new IV (the last one was looking a bit haggard!) and to begin chemo for the day (so there aren’t, nor will there ever be photos of any part of my visit to the hospital, just cuz…. eeewwwww….)

Unfortunately things got off to a really bad start. The very first bag of chemo gave me the most awful shivers to the point that my body was quivering and quaking. Normally that wouldn’t be such a bad problem, but with my pelvis being so painful, every shiver and shake brought tears to my eyes!

So the doctors lowered the rate on the first bag of chemo and gave me some demerol (a narcotic pain killer). They covered my blankets with a mountain of warm blankies (it may have been closer to 3 or 4) and I soon stopped shaking a felt more comfortable.

Unfortunately, the Demerol does not like to play nicely and ended up making me very, VERY groggy. So groggy that I would be sitting up in a chair or in bed talking with someone, and I would just stop talking and fall sleep. In. Mid. Sentence!

Actually, they’re not sure now if it was the chemo or the demerol that did it, but it was annoying (I’m sure for all parties involved!)

After the first bag was done, they did the intrathescal (spinal tap) treatment. For the spinal tap I had 2 weeks ago (is it a shame that I’ve had two spinal taps in a matter of two weeks?!) they had me lay on my side on my bed in a very tight fetal position. For this one they had me sit on the edge of my bed leaning forward onto one of the hospital overbed table, which was raised to it’s highest position. Then they did their magic.

Initially they numb the area around where they’re going to inject the needle, then they need to get the needle perfectly located into the spinal column. This is actually the most painful part of the whole process. Feeling that needle being moved around in SUCH a sensitive area was really nauseating (despite the anti-nausea medication!)

Once they have the needle where it needs to be, they need to remove fluid from the spinal column to test for the presence of the lymphoma. Then they injected chemo into the spinal column. Sounds easy as cake, right?

HOLY HELL I CRIED FOR MY MOMMA! (Who was sitting there, holding my hands!).

Finally, after what felt like an eternity of poking and prodding (but which Mom says was only 15 minutes!), they found the sweet spot and accomplished their mission and allowed me to rest (bastards).

A bit later My Partner brought our son in for a short visit which helped my spirits so much!

And finally, my first round of chemotherapy were completed. First the nurse give me an injection into my IV line which was pretty darn which (which the rest of it was NOT!). Then she hooked up a bag of florescent orange liquid and let that drip out. And last but not least a bag of something clear an unremarkable which took 2 hours.

I was so happy to see the last few drips of that clear bag make it’s way into my line. I had officially made it through my first day of chemo!

Bring. It. On.

All the tests have been taken, all the results are in (although I personally haven’t heard what all the results are!), and the doctors have confirmed that I have Burkitt’s Lymphoma.

Tomorrow I begin chemotherapy.

Because Burkitt’s Lymphoma is so aggressive (I went from being basically symptom-free to a member of the Walking Dead in about 3 weeks!), it takes a very aggressive treatment.

This is what they think will be my schedule for the duration of chemo (sorry, I tried putting it into a table, but WordPress isn’t playing nicely):

Regimen A
Days 1-3: Chemo given by IV and by IT (intrathecal or spinal tap/lumbar puncture), in hospital
Days 4-7: Recover at home
Day 8: Chemo given by IV, outpatient
Days 9-14: Recover at home
Days 15-17: Chemo by IV
Day 18: Administer white blood cell growth factor
Days 19-21/28: Recover until blood levels are satisfactory

Regimen B (begins 21 or 28 days after Regimen A began depending on blood levels.
Days 1-5: Chemo given by IV and by IT, in hospital
Days 6-21/28: Recover until blood levels are satisfactory

Then this cycle is repeated so that each regimen has been administered twice.

I don’t really know what to expect during the actual administration of the chemo, so I’ll post as the spirit moves me.

Thanks so much for your comments and support thus far my blog-family. Reading your comments (usually in a pain-killer-induced haze on my iPhone!) is one of the high points of my day!

Update

It’s really difficult to be witty and creative when you’re hopped up on dilaudid and fighting the second 103+ fever of the day, so I’m going to cut to the skinny.

Yesterday I went for the last two tests they were needed to find out what kind and how extensive the lymphoma is in my system. The first was a PET/CT scan that required I be transfered to the UCLA Main Campus. It was a relatively quick procedure that began with me being injected with a radioactive glucose followed by a 45-minute waiting period for the glucose to distribute into my system. Then the body is scanned from head to toe to determine the locations of the lymphomas.

The second was a biopsy of the lymph node under my right arm. This was interesting because they used an ultrasound machine to guide a tiny guillotine under my arm until it got close enough to the lymph node and the guillotine would be sprung, basically taking a small sample of the surrounding material. That was rather fast and mostly painless!

Then once back to my room, I found out I was being moved to the oncology ward of the hospital. This is a much newer ward and the rooms are set-up to allow overnight guests. Very comfortable for my mom who has been with me every night since she got here!

Today has really been a waiting game. We’re hoping to hear back from my doctors about the results of these last two tests but as of right now no such luck.

And, as I referred to in the opening, I’ve been getting lots and lots of high-grade fevers. Yesterday, within a 12-hour span I had had two fevers, both over 103 (one at 104.1!). Today I’m on the second high fever of the day.

Yesterday afternoon my doctor ordered a “cooling blanket” to assist with my fevers. It’s basically looks like an air conditioning unit that cools down water that is then circulated into rubber “blanket” with channels in it. Let me tell ya, it gets cool! But it’s also effective against my fevers and so far hasn’t “exploded” into my bed because someone didn’t put the top on correctly!!

What I Know

This could end up being a very short post if I stick to the theme of the title!

Just kidding, I am actually referring to the next steps in this journey of mine.  Speaking of which, it is so strange, EVERY morning (and this is now after 10 mornings!  Quick to catch on?  Not!) I wake up totally disoriented and now having a clue where I am or why I am there.  I guess it’s good that the last few days I have woken from a deep slumber with few night-time awakenings.  When I was first admitted to the hospital, I would wake every 15-20 minutes because I was so disoriented to my surroundings.  I supposed it is progress that I’m mostly sleeping through the night (except for 5am when the aide comes, says, “Good Morning,” takes my vitals, and then says, “Good Night.”).

Today is Sunday, June 8, three days after I was diagnosed with lymphoma.  There are not tests scheduled to happen today, just lots of visiting of friends and family (My mom arrives today!  You know, the one with the gams!)  Much like yesterday, I anticipate today to be filled with chic-chat, laugher, a few tears, and an otherwise go-get-em attitude.

Tomorrow, Monday, I am supposed to be getting a biopsy on my lymph node underneath my right arm pit.  This is one of the lymph nodes where the doctors believe there to be a significant collection of lymphoma, based upon it’s 2cmx4cm size (I guess that’s large in comparison to what it should be!).

So tomorrow is a biopsy to get at least three samples of these little guy, the product of which will hopefully be a near 100% identification of the type of lymphoma I have visiting my system.  As of right now, all I’ve been told is I have “Diffuse Large Cell Lymphoma” which is a “non-Hodgkin’s lymphoma.”

Also tomorrow, I will have a PET/CT scan from head to toe to determine how much of the lymphoma I have in my system.   As of right now, the doctor’s have found the lymphoma in my hips through the bone marrow biopsy that was done earlier in the week.  Another piece of imagining is also informing them that my lymph node under my right shoulder contains quite a bit of the lymphoma due it’s swollen nature.

So by the end of the tomorrow, they should be well on their way to knowing the type and extent of the lymphoma in my stem.  And with this information in hand, we can begin to determine a treatment plan.  Several of my doctors are hoping I get into a special study at UCLA that is working with the R-CHOP protocol, the most relied upon treatment for non-Hodgkin’s Lymphomas.  If I am accepted into the study group (and this will depend entirely the type of lymphoma I end up having, not how tight the corners are on my hospital sheets), I would start as soon as the end of the week.

If I am not do not qualify for the group, I would be provided with standard (and yet somehow much less satisfying!) treatment of standard chemotherapy with a typical cycle being three or four treatments a week. (We haven’t talked that much about this option because my doctor thinks I’ll qualify for the former.)

The good news is that once I’ve had my first chemotherapy, I can go home!  Apparently that first exposure to chemotherapy will disable the squatter enough that it will be more or less harmless in my system and I should not have any symptoms such as fever, headaches, etc.

So I can go home!  To be with my son and my family!

Bring it on!

A Letter To A Squatter

Dear Occupant,

(I am using the word “occupant” because I am not sure what term to be using. You don’t pay rent (at least not to me, so you are not “renter”. The property to be discussed is in no way, implied or otherwise, a possession of your own, so you’re not “owner”. Perhaps “squatter” is a better term!)

I am writing to officially let you know that you are put on notice. You are currently using a facility, my body, that does not belong to you and for which access was never granted, neither specifically nor implied.

As such, be forewarned, Mr./Ms. Lymphoma, that my associates and I will do whatever we need to do to expel you and yours from the premises in as timely a manner as possible.

As I type this, my associates continue to research background information regarding you and your ilk in hopes of obtaining the most effective manner with which to eject you from the premises while doing as little damage to the facilities as possible.

Likely within a week, perhaps slightly over, we will begin with a 6-month course of chemotherapy.

Although we are under no false pretenses that this will be painless, please know that I am a Taurus and I am also descended from German and French lineage. So when I get ready for a fight, I fight!

Also know that my motivation for ensuring the continued health and safety of these premises is simple, beautiful, and almost poetic. It is something I have fought my whole life to achieve and I will not allow you or anyone to take it from me.

So bring it on!

Modern Medicine

For the most part, the last five days of my travels on the UCLA & Santa Monica/UCLA medical interstate have been mostly smooth and efficient. (That is of course overlooking that fact that UCLA ER put patients in THE HALLWAYS! as if they were shooting a scene in some developing nation-world war epic set 50 years ago. Except that it’s in Los Angeles. And it’s about as contemporary as one can get.)

So gurney’s in the hallways aside, UCLA ER did an effective job given the space and resources. (Speaking of resources, during one of my short stints in one of the actual patient rooms (as compared to the hallway) I was able to see two people, clearly not medical staff, with their little hand inventory guns strapped on, apparently updating either the order or taking inventory of the items on hand. In my room. At one point, while my nurse was putting in an IV, one of the inventory-takers tried to squeeze past my nurse and the wall, thereby bumping him, and poking me. It was then that she coughed. And finally said, “Excuse Me.”

Neither of us were sure whether the “excuse me” was for the bump or the cough.

My nurse tried his best to keep me comfortable despite me being moved every time he came out to check on me. (Apparently the spots in the hallway have priorities!)

Finally, in order to get the spinal tap, which by the way they have so eloquently renamed lumbar puncture so you forget that they’re TAPPING YOUR SPINE.

Shortly thereafter I was taking Mr. Toad’s Wild Ride (AKA Ambu Serve) from the UCLA main campus to Santa Monica UCLA but Mr. Toad didn’t wanna listen to his copilot’s advice to take the 10 West to Santa Monica and instead took the 10 East to Los Angeles, which added much more mileage and hence excitement onto the trip.

But once we reached Mecca Santa Monica UCLA Medical it had been all worthwhile. Since being admitted on Thursday at midnight (so Friday morning) I have (mostly) received the most timely and supportive care possible. The nurses outdo themselves to ensure my comfort (well, except for the construction of a new medical center that’s happening right outside my window, but we can’t really hold that against them, now can we?!)

But I can seem to find a story even in the most mundane and dull interactions. And yesterday (Monday) was no difference.

See, after seeing the excellent care I was receiving all weekend, I began to wonder: what is their weekday staff going to be like? In my mind, the more experienced nurses (and I guess I’ll continue the judgment and say, “better nurses”) prolly gobble up the weekly, day-time shifts, leaving the nights and weekend shifts for the newbies (expanded judgment: worse nurses).

So imagine my surprise when I got Nurse Nickel yesterday for my day nurse on a Monday. She seemed to look like a good nurse. She had a stethoscope and there weren’t any blood stains on her clothing or hands.

The more I interacted with her (which actually wasn’t much as I like my privacy) the more I began to realize that I took care of her more when she was in my room than she took care of me.

At one point she was trying to feed my IV into the machine that pushes it out (I’m guessing) and couldn’t figure it out and kind of smacked it. I just said, “Calm down, I’m sure you’ll get it” and she opened it right up.

Then after she saw my partner and son leave the room she asked who she was and I told her who they were and (I swear on my iPhone!) she started to cry and babbling about how unfair it was that I was in the hospital and how much he needed me and I should be there taking care of him and… I slowly laid down and covered up and wished I was sleeping.

And the piece-de-resistance: last night she came in to give me my 4pm meds via IV. At 5:15. Whatever, I’ll cut her some slack, maybe she wasn’t have a bad day.

But prior to then I had been noticing problems with my IV but I also knew I didn’t feel comfortable to have her be the one to change it. So I didn’t say anything.

Well, she’s more observant than I gave her credit for as she saw it too and said she’d need to do a new IV line (or whatever the medical term is for it). And she went to gather her supplies.

She came back with her Charge Ram Charge Nurse and it was clear from the moment they were both in the room that there were issues. I should have packaged it up and sold it back to Southern California Edison!

So after watching Nurse Nickel putz around for a good 5 minutes, the Charge Ram said, “You may want to use a tourniquet.”

Anxiety isn’t something I feel often, but I started feeling it then because I could just tell the Charge Ram wasn’t there to support Nurse Nickel but to ridicule her. And I was going to be the stick pin it was going to happen on.

So, in my infinite wisdom, I said, “I’ve been told I have tricky veins.” To which Charge Ram said, “A tricky vein for one is an easy vein for someone else.” To which Nurse Nickel said, “All three of mine have been difficult.”

I’m not sure how I allowed it, but I did let her try her foolishness on one of my poor veins. But when the Charge Ram started saying something about how Nurse Nickel needed to be careful about the vein “spraying out” and threw her a shower towel, I put my foot down. Geesh.

Even Perfect Ms. Charge Ram couldn’t get one in after two tries, she said, “You have very tricky veins?”

The night went downhill from there. I got a visit from my Infectious Disease doctor who told me all the MRI, CTscans, blood tests, etc had come back negative with the exception of the MRI they had just taken that day on my left hip.

Apparently they saw some small “lesions” on the pelvic bone and needed to find out what those were. The two ideas I had been given were that they were from a viral infection in my bones (How does that happen? I thought everything was nice and sterile in there?!) or a form of lymphoma.

That word blew the wind out of my sails as it wasn’t anything I had been expecting. I haven’t had the nerve to go online and look around out of fear.

Sometime this morning the techs were supposed to come to do a bone marrow biopsy of my pelvic areas. Then I was supposed to have a bone scan of my skeletal system to determine if there are other areas in my body like this.

I’m not sure how to end after laying that out there, other than to say thanks for your well-wished and kind words. I’m trying not to freak out by looking all the absurd information on the internet, so please don’t post any of it in the responses. Your hugs, and thoughts, and attempts and making me laugh are far more valuable and meaningful to me right now.

Oh, and my partner and my son have been super supportive through all this. So if you know them and how to contact them, send them a good word, would ya. I wouldn’t be in nearly as good shape without them.

xo
Frank

We Interrupt The Previously Scheduled Blog…

With a whole heck of a lot of pain in my neck and head and correspondingly high levels of dilodid.

It all started last Tuesday (May 20) when I went to bed thinking i had the flu). When I woke up in the morning, my lower lip, from cheek to cheek was numb. As if aliens had whisked me off in the night and done some top-secret dental experiments on me.

Later that week I went to my dentist who, after x-rays and a thorough exam concluded it wasn’t anything that he could see (but he did infer something about a wicked bug that could be in my system doing it.).

Long weekend (Memorial Day) was spent laying low, mostly because I didn’t have much energy to do anything.

I worked on Tuesday and Wednesday and took Thursday off to meet with Oliver’s social worker to prepare for the Termination of Parent Rights Hearing on Tuesday, June 3.

I get home and hand Oliver off to L who takes care of him for the rest of the night while I lay in bed with a fever that vacillates between 100 and 103, depending on how long ago I’d take Advil.

L leaves for work and we arrange it so he’s going to clear his very busy calendar to take car of our son since clearly, I can’t be held responsible to take care of myself.

During the two hours that I’m waiting, I begin chatting with Joansy who points out to me that the symptoms I have also correspond to MENINGITIS.

I freak out and do what any parent in his/her right mind would do: toss my kid on the floor so he won’t get infected (after A WEEK of being around me!).

To make a long story shorter, we went to UCLA ER where I spent from about 9:30am until just before midnight on a gurney IN THE HALLWAY! (So much for controlling contagion!).

While there they did a chest x-ray, a CAT scan, and a spinal tap lumbar puncture (I’m not sure how you feel, but the pretty new words don’t make it any less painful or gory just like Domestic Engineer does little for spiffing up that age-old title!).

Fast forward to midnight on Thursday morning and I was being rolled into a private room at Santa Monica UCLA hospital (SO thankful for that one as this hospital ROCKS!).

Since I’ve been here they’ve done an MRI and an EKG (and a small anxiety attack last night).

I’ve had a doctor in my room 4 times over the last 48 hours. None of them know what’s going on. They all say it looks like Meningitis but my spinal fluid is clear. One doctor said they also ruled out West Nile Virus.

Strangely calming that.

So now I must leave you to your own devices. Play nicely and imagine all the things that WE are missing Oliver learn how to do!

And look at the shitty photo of some beautiful flowers that my dear friend Joansy sent me! Thank you Joansy!

Dude! We’re In Trouble!

(Yes, I still say Dude. I’m a product of the 80s!)

(Apparently the sound isn’t working due to something to do with QuickTime. Insert lots of excited noises from Oliver and a bit of gushing and cheering on my part!)

(Em reminded me: He’s not even 6 months old!)