Deported

My port is gone, which is wonderful since I am a stomach sleeper and my port made that quite inconvenient.  Getting it taken out got a little interesting.  Readers of this blog know that interesting equals painful.   When my port was put in, I was under general anesthesia.   That means I was asleep-ish, and don’t remember anything about it.   I blacked out in one room, and awoke in another.   I imagine that a trip to Tijauna is much the same way.   When I had my port removed, however, I was under a local anesthesia.   It was in the doctor’s office, and I was awake and talking to him the whole time.   He gave me the local anesthesia by way of a syringe, and started to prep the area.   He made the first incision, and I then realized that I had not gotten enough of the local anesthesia.  Ouch.    He gave me another shot or two, and waited a few minutes for the medicine to work.   He was very apologetic.  Honestly, the shot hurt worse than the incision, but I was quite concerned for the rest of the procedure.  He pulled, sliced, twisted, and cut the port out, cauterized a vein, and sewed me up.  I celebrated by having a Mexican lunch with Malena and a friend.   It was good.

I have taken 14 of my 18 radiation treatments.   I get these every weekday, and I am in the hospital for about 30 minutes each time.  Usually the treatments are in the afternoon, but sometimes I get rescheduled for the morning.   The third treatment was a morning treatment, and took advantage of that by scheduling my port removal immediately after.   Two hospitals in one day.   If that is some sort of record, I don’t want it. 

The radiation is going fairly well,  but I started to come down with some side effects last week.   Six days of the following fun things:

1.  Sore throat

2.  Constant feeling that food is caught in the back of my throat.

3.  Dry mouth.   Like the Sahara in August.

4.  I cannot taste food.

These side effects will persist for weeks after my last treatment, which is Monday.   The worst one is not being able to taste food.   I like food.   I like it so much that I try to eat it several times a day.    But these are the problems of the living.   So I will take them and deal with them. 

I am in the home stretch of my treatment.   I think I have this thing beaten, but it is ‘wait and see’ from here on out.   I will have a PET scan in a couple of months, and quarterly visits to my oncologist.   If nothing shows up after 5 years, I think they will call me cured.  

Take that, cancer!

Another hospital visit

I was not feeling well Tuesday around lunchtime, so I decided to take a nap.   I felt much better afterwards, but decided to take my temperature anyway.  102.6.   Great.    I called Malena at work and told her the news.   She came home and took me to the ER.      When we got to the examination room, my temperature was normal.   The nurse took some blood, and a chest x-ray was taken to make sure my pneumonia was under control.    After hours and hours of waiting, I started to feel warm, so Malena took my temperature again.   102.1.   Right on cue, the doctor comes into to examination room and tells us that we are free to go, nothing is wrong.   Malena convinces him to take my temperature again, and I end up admitted to the hospital, back to the oncology floor, two doors down from my last visit.   All the nurses were glad to see me back, and had a needle party where I think every one of them jabbed me with something, either taking blood or adding chemicals.   At one point my oxygen level got low, so I had to wear the oxygen nose tube/torture device.   Fortunately, I was able to prove that my oxygen levels were fine a few hours later, so I did not have to continue being tortured.   My Oncologist kept me for two nights trying to determine if the antibiotics that I was taking for the pneumonia were causing the fever.   I don’t think that she ever really determined that, but decided that she could not be sure that my chemo did not cause the pneumonia in the first place.   The cytoxan (the C in R-CHOP) has been known to cause pneumonia in rare cases, and she decided that since I was hospitalized twice in two weeks that she was not willing to take the risk of damaging my lungs.   So my last chemo is cancelled.   This will decrease my chances of being cured, but by how much is unknown.   Since I was Stage I,  and the bad lymph node was cut out, I think that I will be OK.  It is out of my hands anyway, so no sense worrying about it.   Radiation simulation is back on for May 19.  

I’m feeling better every day, and I haven’t felt this strong in quite some time.   I’ll be glad when I get to do some things around the house again like cut grass, and whack down some huge weeds that have grown.  I will ask my Oncologist on Thursday when I will be cleared to do these things again.  

I’m looking forward to whacking some weeds.   On to the next phase of the battle.

Waiting to Inhale

Today should be the day after my last chemo treatment.  But it is not.   It is a shame too, since I had some Cinco de Chemo jokes ready to go, but they will be lost forever now - never there to make you laugh.   I will start my tale at the beginning, where most tales start…

Tuesday, April 26th found Malena and me at the Radiation Oncologist’s office where we got some good news.  Instead of 6-8 weeks of daily radiation, I only need 18 treatments!  That is 3 weeks and 3 days!   There was some other news as well.  It is possible that the radiation will destroy a spit gland.  Also, I will not grow any whiskers in the area of radiation.  That’s a shame too, since I wanted to grow mutton chops, like this former president:

We will find out about killing the spit gland when we do the marking and simulation.    Marking and simulation was scheduled for May 19th…

When we left the doctor’s office, I started to feel run down a bit, so I went home and climbed into bed for a few hours.   I awoke and went to the living room where Malena was sitting, and grabbed the temporal scan thermometer to check my temperature.   I did not feel bad, I just did it on a whim.   101.6.   Wow.  Since I was feeling fairly well, I thought that my time in bed under the covers had raised my temperature, and that I would cool off soon.    But the panic flag had already been raised, and arrangements made to keep the kids.   Almost ready to go to the emergency room, my temperature had dropped back to normal after fluctuating most of the previous hour.   We lowered the panic flag and went to bed.

Wednesday, I noticed that if I took a deep breath, I would have an odd sensation in the back of my throat, and would cough.  I placed a call to my Oncologist’s office, and a prescription was called into my pharmacy for a 3 day treatment.

Thursday evening, day 2 of the treatment, my cough got a little worse.

Friday, day 3 of the treatment, I was not improving.  Another call to the Oncologist’s office, another prescription.  

Saturday.   This is where the real fun begins.   I am having difficulty breathing by the afternoon.  I am able to breathe easier if I am on my back, but not upright or on my side.   When I am upright, I can breathe only enough to get a couple of words out at at time.    Malena makes arrangements for the kids, and off to the emergency room we go.   It is packed.   It took 30 minutes just to see the triage nurse!    Being a chemo patient with difficulty breathing does have some priority, and we were in a treatment room within another 20 minutes.   Not bad considering how busy they were.   First into the treatment room was not a nurse,  but the ER doctor.   I guess he thought I needed priority as well.   One CAT scan later, and I was admitted.  It took some time to get the CAT scan, to have someone read it, and to get a room ready on the oncology floor.   We got to my room at 3am Sunday.

Sunday was full of fun.   I had a constant IV drip going into the back of my left hand, electrodes all over my chest, oxygen shooting into my nose, and an  x-ray.  The on-call Oncologist (on-callogist?) came to visit and and told us that he was concerned because pneumonia patients can breathe upright, but not laying down, which is the opposite of my symptoms.  Great.  

Monday I got to see my Oncologist, and she told us differently about the symptoms.   Pneumonia can have my symptoms if it is in the lower part of the lungs.   Another x-ray, antibiotics, constant IV drip, breathing treatments, and oxygen. 

Tuesdays’ x-ray concerned my Oncologist enough to get a pulmonary specialist involved.   His concern was the one of my chemo medications may be causing the pneumonia.   If that is the case, I am done with chemo.  My Oncologist said if I don’t get the fourth treatment, it would lessen my chances of being cured.  

Wednesday was much like the previous days.  Confined to my cell, with time off to walk the halls for exercise.

Thursday had me checking out of the hospital and finally going home.   I have 4 bottles of oxygen here, a concentrator (it takes the air in the house and filters it, and shoot oxygen out through a hose into my nose), a nebulizer for the breathing treatments, and a couple of new prescriptions.

I have an appointment next week with the pulmonary specialist to see if I am improving.   I am, since I can breathe now.  I have learned a valuable lesson in all of this:  Do not go to a hospital and expect to get any rest.   I had people in and out of my room every hour or so checking blood pressure, oxygen levels, the electrodes on my chest, or giving me handfuls of pills.   So I didn’t get much rest.   Neither did Malena – she stayed with me every night but one, when my father stayed so Malena could get my oldest son ready for a band competition. 

My final chemo treatment is  tentatively scheduled for May 19th, which means I will need to reschedule the appointment with the Radiation Oncologist.

Stay tuned…

Fear

You have good days, and bad days during chemotherapy.   My bad days come about two days after stopping the steroids, and these low points get lower and lower.   Generally, this is something that I can handle, but there was something that happened Thursday that really had me down.    I was researching chemo-brain.    It is a real condition, although according to an article on foxnews.com, it wasn’t given any credibility until 2004.    That was enough to set me off, but I will save that tirade for another day.

Chemo-brain affects your cognitive abilities.   Some people report that it is as if they are in a fog the whole time, or that they lose items, have some memory loss, and can’t focus.    For me, there is a focus issue, in that focusing my attention for long periods on a particular item is difficult, but the largest issue is my inability to multitask.   Since I am in the computer field, this is a big deal.    I normally administer several disparate computer systems, and must do this simultaneously.   Right now, I can’t.  

As I was researching chemo-brain, I wanted to know when it would go away, when I would have my faculties back.    Answers varied from months to years.  And then fatigue and low emotional state took over and whispered into my brain:  ‘It may never come back.’    That thought had me the most frightened of the entire ordeal.    My wife, God bless her, recognized what was happening and suggested I take an Ativan.    This is prescribed for anti-nausea, but it is also an anti-anxiety drug with sleep aid benefits.   I am better now, but it was a frightening few hours.    We’ll be better prepared for the low point after my final round of chemo, which is May 5.   I won’t get that low again.   And if my abilities don’t come back, I’ll just add that to the list of things I have to deal with.  

As for the rest of the time, I took one anti-nausea pill for nausea, and my taste went bland for 4-5 days.    So in that regard, it has been easier.  However, I am far more tired through this round than I was the previous treatments.    This is expected, but I don’t think I could have prepared my self for it.   

Better late than never

I know it has been quite some time since my last post, but there really hasn’t been much to report.   And that is a very good thing.    I took anti-nausea medication for 3 days.   I lost my sense of taste for 4 or 5 days.   The biggest issue, and the one that kept me from updating the blog, was fatigue.   Around 2 or 3 o’clock every afternoon I started to feel drained.   By dinner time, my communicative skills devolved into grunts and pointing like some kind of bald neanderthal.  

Speaking of bald, I haven’t quite lost all of the hair on my head.   Only 98% of it.   And now I need a haircut.   It is a very odd sight.   That 2% Marine Corps hair is hanging in there, and will not let go without a fight.   I am very proud of it.  I have some pictures of me before and after the hair loss so you can see how it has changed me.

Before:

 

And after:

I don’t think the change is too bad, and when I wear a hat it is barely noticeable. 

I am posting now from the chemo chair at the Bruno Cancer Center,  taking round 3 of 4 chemo treatments.   I hope that this treatment goes as well as the last, and I will try to do a better job of keeping you informed, even if there is nothing to report.   Be warned though, if I am as tired after this treatment as I was after the last, you will get a post that will read as if The Hulk wrote it:  Hulk tired.   Hulk eat.   Hulk need sleep!

I can’t say enough good things about the folks here at the Bruno Cancer Center.   They are top notch.   God bless every one of them for what they do.

Cue

Saturday, March 19, after doing some light yardwork after sunset, I decided to take a shower.  I washed my hair last, because that is just the way it is done, and looked down at the drain.   A handful of my hair lay upon the drain.  Malena  told me that my new nickname will be ‘Cue’.   I hope that she means Cueball, and not cuecard, or q-tip.   That would be awkward.
This is no big deal to me, just an annoyance in my battle.   My hair loss may be frightening to others though, as I just do not have a head made for baldness.   To compare, I have some of the greatest bald heads in movie history:
Yul Brynner, image from The King and I (why is your head higher than mine?):

Telly Savalas of Kojak fame (Who loves ya, baby!):

Patrick Stewart of Star Trek The Next Generation (Make it so!):

Unfortunately, my noggin is more closely shaped to Worf:

Although our hue is different, the skull structure is quite similar.
Seriously though, this is not a big deal for me.   It is a HUGE deal for others that go through this, especially women.    Fortunately, there is something you may be able to do to help, and it is painless to you and your bank account.    Get a haircut.   If you can do without at least 7 or 8 inches of hair, you can donate it to be made into wigs for chemo patients (PS – your hair will grow back!).
Here are a few places where you can look into these programs:
Locks of Love
Wigs for Kids
Pantene
and a google search:
Google

Yesterday, I did my second of four rounds of chemo.    I was able to take the medicines as fast as they could administer them, which is very good.  There were two nurses in the room, wearing their blue nitrile gloves and attending to the patients.   So there they were, two by two, hands of blue, administering life saving medications.   They are wonderful people.   I noticed when I left that I was substantially more tired than after the first treatment.   It may be due to the lack of good sleep over the past few days, but it is something that we will watch.    I didn’t sleep at all last night, even with the help of Atavan, so Malena and I decided that we would work from home.   I really didn’t trust myself to drive.    I did go over to the Bruno Cancer Center at 1:00 to get my follow up shot of Neulasta, but it was a quick trip and I felt a bit more together.  
This is a race, and I am in the lead.   Cancer will lose.

Timing

 

Tuesday started off great.   I felt better than I had since my first chemo treatment, and I was ready to face a beautiful day.  By the end of the day, things had gotten interesting.   And if you have been reading my blog, you know that interesting means painful.   At 5:00 pm, my abdomen started to feel uncomfortable.   I went on a three mile walk with my wife at 6:00 pm, and by the end of the walk I was in pain.   I tried to eat, and I tried to suck it up and endure, but could not.   At 1:30 am Wednesday, I knew that this agonizing pain was not a simple gastro-intestinal issue, but a problem with my appendix.  I was nauseated and had a fever.  Malena took me to the emergency room, which was thankfully not busy, and we were immediately taken to an examination room.   I was given a saline IV, and some dilaudid for the pain, and had a CAT scan scheduled.   The dilaudid only took the edge off of the pain – it went from agonizing to ‘this still hurts!’.  After my CAT scan, the pain started to intesify again, so I was given more dilaudid.   The doctor arrives in my examination room and tells Malena and me that my appendix is fine, that I am having cramps.   Cramps?  Really?  If cramps can hurt that bad, they need a new name, like hyperpain muscle flexion or something.   The doctor gave me a new prescription to add to my growing collection, and sent us home.   We stopped to get the prescription filled, and arrived home just before 7:00 am.   It was a long night to say the least.   We tried to sleep, but an endless parade of phone calls and people banging at the door prevented any type of meaningful rest.  At 2:30 pm Wednesday, the hospital calls back to tell us a second radiologist looked at the scan and determined that it may have been my appendix after all.  The really weird thing is that this scenario played out almost exactly as it had in 2008.   Big pain, emergency room, not your appendix, oops - yes it was.   Different hospitals, for those wondering.   I am not in pain now, just a bit tender in my abdomen from the ‘cramps’.   I called my oncologist’s office on Wednesday to fill them in, and so they could decide whether or not to schedule an appendectomy.   I haven’t heard back from them, so I am guessing that since I am not in pain, we will delay the appendectomy until after chemo.    If I have my appendix removed now, I will have to completely heal before I can resume chemo.   On the other hand, if my appendix ruptures while my immune system is compromised from the chemo, things could get exciting.  I think a ruptured appendix is unlikely, and that cancer is my most pressing problem since I am not currently in agonizing pain.   But, I will do whatever my oncologist wants me to do in regard to my appendix.  My second chemo treatment is scheduled for Thursday, March 24th.  Hopefully, my blood counts will be good and my appendix and I can proceed with the chemo.  

A Newtonian thank you

 

Sir Isaac Newton, the man who discovered gravity, co-discovered calculus and other things to torture high school students, once said “If I have seen further it is only by standing on the shoulders of giants.”   This quote strikes me as very relevant during my treatment.    I am going to beat this cancer.   I have no doubt of it.    I am going to beat it because of the giants who came before me - the millions of cancer survivors and victims who sacrificed so much so that countless medical professionals and scientists could learn how to fight this beast.    Millions upon millions of volunteers raising money to fund research so that I can survive.    It is hard to comprehend how much has been given and sacrificed.   But it has made a tremendous impact.   According to Cancer Research in the UK, since the 1970’s survival rates of Non-Hodgkin’s lymphoma have more than DOUBLED.   There is obviously still work to be done, but the sacrifice of those giants has reduced what I am going through from a death sentence to an excellent chance of survival.   To all of you, I feel that I owe my life.    There is no way that I can fully repay the debt.   Thank you.

Since coming off of the steroids on Wednesday,  I have had to deal with a few minor challenges.   Wednesday’s fatigue was combatted with a nap.   I did not feel like I needed a sleep aid that night, since there were no steroids to keep me awake.   The result was a sleepless night.   Thursday was spent lounging around the house, napping occasionally.   Thursday night I took the sleep aid, just to be sure.  The result was a sleepless night.   I went to work anyway, and actually accomplished something.  That felt good.   My sleep is back in order now, and I managed to do some minor yard work today.   And in the spirit of full disclosure and too much information, my internal plumbing has been off since chemo.   This has started to resolve itself today, and I feel much better than I have in several days.    I think that I have turned the corner on this cycle, and that I will continue to feel better daily.   My sense of taste has changed.   Most foods are bland to tasteless, except sweets which are still sweet.   This includes citrus fruits, and banana pudding that a dear friend dropped off at our house.   

Tomorrow will start a new work week, and I am looking forward to it.   My goal is to work the entire week.   It will be the first time in quite a while.

Time distortion

I am a fan of science fiction movies, and love the older ones.   In fact, my online handle, klaatu, comes from the 1951 science fiction classic The Day the Earth Stood Still starring Patricia Neal and Michael Rennie as the alien Klaatu, aka, Mr. Carpenter.    Here is Klaatu with his pet robot Gort and a stylish spaceship (from wikipedia.org):

What does my affinity for science fiction have to do with my cancer?    I have noticed something about the way time passes since my diagnosis that I have only seen in science fiction movies and TV.    My days all seem to pass at normal intervals.   24 hours as they should be.   But the weeks somehow have had months inserted!   Many times I have tried to tell of an event during my journey, indicating  that the event happened days ago, or perhaps last week, only to be told that it happened the day before!   This scenario has been repeated several times.   I think that this could mean that I am losing my sanity, which should be documented, or that this is a phenomenon which others experience during such times.   If you are one of the patients of cancer and have found my little blog, and you have the same feeling of time distortion, you are not alone.   Or I am nuts.   It could go either way honestly.

I have been on prednisone for 5 days since my R-CHOP chemo treatment.  That ends today.   No steroids tomorrow.  I was warned and am fully expecting some sort of crash but have no idea how it will affect me.   We will find out together.   I know that I have been very tired the past couple of days, as if recovering from a cold.   Just washed out.   Nothing to worry about though, I have been through much worse than a ‘washed out’ feeling and came out OK.  We are still winning, and will continue to do so.

We have the TOOLS, we have the TALENT.

This is a line from my all time favorite comedy, Ghostbusters.   I thought it to be a fitting title to the post, as I want to talk about the tools that have gotten me through this far in my ordeal.   Faith, Family, and Friends.
Faith.   I am a Christian, although not a very good one at times, but I try to improve.  I know that God has a plan, and if that includes cancer taking me, then so be it.  I am totally at peace with that.   I know that Heaven is a better place than here, so the thought of being there someday makes me happy.   It is this peace that allowed me to comfort my family during the early days when my death seemed more imminent than it does now.  I have personally seen God’s hand in my life, and in life all around me.   Non-believers have somehow blinded themselves to these miracles, or rationalized them in some way.   I’ve been on that side too, and eyes open is a much happier way to live life.  
Family.   I have had phone calls, emails, texts, and visits.   Family traveling from across the country to see me and help.    So many offers to help that there is no way to use them all in two lifetimes, much less one.   But it builds me up.  And makes me stronger.   Then there is the family Malena and I created.   The kids writing ‘get well soon cards’ with the school and Sunday school classes.   All of their friends and teachers praying on my behalf.   All of it is emotionally overwhelming.  
One night, as I lay in bed at peace with whatever decision God has made, Malena came to bed and started to cry.   The thought of losing me was unbearable to her.    You see, in 1979 she lost her father to a heart attack.    In 2000, she lost her oldest brother.   One year prior to the day of my lymph node removal, she lost her mother to pancreatic cancer.    She has suffered enough.   During her crying, she planted a little seed in my mind which she would cause to bloom later.   I started saying prayers for her and the kids, so that they would be taken care of, and be strong and comforted.  All of this helped to build me up.   The seed germinates…
Friends.   I have the best friends in the world.   Bar none.   There are phone calls, emails, postings, instant messages, and personal encounters offering support.   Some of these are with people who I have never met, but are now my friends.   I have people in countries all over the world, and from many different religious beliefs, praying for me.   A group of co-workers got together and made me a chemo-blanket (chemo can make you cold), and support bracelets to show their solidarity with me.    Never throughout this experience have I ever thought that I was alone.   And on the way to the Bruno Cancer Center yesterday,   I received many messages and emails giving me support.   I told Malena that I was not sure that I deserved all of this.    Here comes the bloom:   She said, “Of course you do. You have touched many, many lives”.   I sat there and took it in.  It was very Capra-esque.  And I was built up even more.

Before the chemo started yesterday, Malena and I met with my oncologist.    She had the PET scan results.   Because of God’s grace, all of the support I have received, Marine Corps altered DNA, and I am a man that is usually only read about in Greek mythology,   my stage came back as Stage I.   This is very uncommon, actually ‘rare’ is the word she used.    Cells travel quickly through the lymphatic system, but were only found in the node that the surgeon removed.   She said that some of the other nodes in my neck were reactive, which means that they could be fighting a bacteria, virus, or even the lymphoma.   But there was no cancer.
The treatment is:   4 R-CHOP chemo treatments (1 down, 3 to go!)
                                6-8 weeks of daily radiation on my neck.

This is truly the best news we have received in months.   So good, it made my mother and wife cry.    I may have welled up a bit myself.

Round 1

I had my first round of chemo today.  Everything went well, and I had no adverse reactions to the medications being pumped into me.   We were there most of the day, some of that time was spent  pre-medicating and waiting on chemo medicines to be mixed.   The actual chemo took about 6 1/2 hours.   I am exhausted, but wanted to let you know that I am OK and will post a more detailed report tomorrow, including some good news.

The Ultra-Scan report

 

Monday’s trip to the Bruno Cancer Center was largely uneventful, i.e., not painful.   However, while waiting for my echo cardiogram (an ultrasound for my heart), we were treated to the woeful cries of a woman, who was obviously having something near and dear to her violently removed without even as much as an aspirin for the pain.  “Lord, please hep me!   Hep me Lordy!  Ohhh!”.   This went on for several minutes/hours/days, I’m not really sure.  I was having serious concerns at this point about what I perceived to be a simple procedure.   Maybe they had to crack open my sternum in order to perform the echo cardiogram.   Or maybe the ultrasound scanner wand had to be inserted into uncomfortable places in order to get a good reading.    I was not in my happy place.  I was eventually called back toward the torture chamber,  and could not bring Malena with me.  I supposed that they did not want any witnesses.  But my trepidation was all for naught.   I only had to take off my shirt this time.  I laid down on my side, the technician waved her wand and took the magic readings.   Took about 15 minutes, and most of that was because the machine started to act a bit wonky.  You know how magic is sometimes.

Next up was the PET scan.   This was in a different location by way of 5 floors,  4 hallways, 3 automatic doors, 2 buildings, and a parking lot without a pear tree.   They were expecting me when I checked in and handed me some paperwork to complete.   Minor stuff.   I was called back quickly, and the technician explained the process to me and my wife.   He was going to inject me with radioactive sugar (at least I think it was radioactive – I haven’t gained any superpowers so I am not sure), and let it circulate through my bloodstream for an hour, all the while I was to sit in a recliner.   This was no ordinary recliner, mind you.   This was what I will call the Montalban model, with rich Corinthian leather.   It was a very comfortable chair.   So I sat there, chillaxing with my nook (Memoirs of Sherlock Holmes, thank you very much), waiting for the hour to pass.   After my 60 minutes of total chilling, I was led to the scanner gizmo.   I laid down on the table, and had my arms wrapped up so they could not move.   I am not claustrophobic (I love Santa!), nor am I afraid of tight spaces.  The table started to move into the gizmo, so I did what any sane person would do – I took a nap.   The technician woke me up about 25 minutes later, and told me that my oncologist would have the results the next day.  Wow!  She told me it would take a week.   Maybe she needs to interpret the results.   Anyway, I am hopeful that I can get the results on Thursday when I go in for my first chemo treatment.   It would be nice to know what stage my cancer is in to know what we are really dealing with, so keep your fingers crossed!

On Thursday, cancer, you start to go down.

The port

I had my port put in yesterday.   It is a larger device than I thought it would be, and there is a lump on the left side of my chest.   The procedure wasn't bad, but I was a bit sore coming out of the hospital.    The biggest problem with it so far is that I could not get into a comfortable position last night, so I haven't slept.   Hopefully the Lortabs will at least allow me to catch a nap today.

Why I write

 

I write these little bits not only for my own peace of mind, but also in the hopes that someday, someone who is researching cancer or diffuse large b-cell lymphoma may stumble upon these words and know that it is OK to laugh, and to cry (not that you have much choice in the latter).  I also hope that the researcher may establish a bond of sorts with me and my support,  even if only in spirit.   Some posts will be almost technical, where I am just trying to pass along information, some posts will be humorous, as I try to make light of most situations, but there is just no humor in some posts.   This will be one of those, as I relate the nights where we broke the news to our children.   

We had decided not to tell our children right away, as there was nothing really to tell.   Another factor was that Malena’s mother had passed away from pancreatic cancer 1 year to the day of my lymph node removal.  

Friday, our oldest son, 13, came home with an attitude.   He didn’t want to do homework, was upset that we had grounded him from the Xbox 360 because of his grades, and was just generally in a foul mood.   Malena decided that it was time to rock his world.   She took him out, under the guise of needing help picking up something to eat, and drove to the local library where she told him that I had cancer.   I cannot really comment on the conversation, since I wasn’t there, but he came home about an hour later in a much different mood.   He was very subdued and serious.  He asked to speak with me in private,  and we retreated to his bedroom.   He turned around, gave me a big hug, and started to cry.   That started me as well, and I told him it was going to be alright, I was going to beat it with his help.   Mind you, we only knew that I had lymphoma at this time, not the type.   

The following Tuesday, we found out which type of cancer I had, and decided to tell our youngest son 11, and daughter, 8.   We all sat together in the living room, Malena and the kids facing me.   I started to explain cancer in general to them, and that cancer didn’t always take a person’s life, like it did their Nana.   At this point our daughter looked at me and said, “please don’t tell me this is about you”.   I told her that it was about me, and that I had a type of cancer that was treatable, and that I was going to fight it and beat it.   She stood up, found her Nana’s jacket and wrapped up in it.  She then crawled on top of her mother’s lap and started to cry.   Our youngest son tends to clam up under pressure.   He sat there, sad, and didn’t want to discuss the matter.   I sat beside Malena and hugged my youngest son.   My oldest son sat beside us in silence.  Malena asked our daughter if she wanted to give me a hug, but she told her she was afraid she may catch cancer.   After assuring her that you cannot get cancer that way, she sat in my lap and hugged me.   We sat together like that, in silence but for the sobs, for quite some time.  All of the kids are doing fine now, and we plan on having them visit a counselor just to be sure.

The day after we told our children, our daughter organized a ‘get well soon’ letter writing campaign in her 3rd grade class.   While most of the cards were from her, some were from her classmates, and one was signed by the entire class.

 

I’ll keep those cards forever.

20/20 vision

The scheduling picture has become clear, at least for the next two weeks.
Thursday, February 24 9:30 am - my port is to be...installed?   Added?   Upgraded?   I don't know.
Monday,  February 28 9:00 am - echo cardiogram
Monday, February 28 11:00 am - PET scan
Thursday, March 3 8:45 am - first round of chemo.  Thank goodness!    I'm ready to get started.

It is amazing what stress can do to a person.   This morning, I just lost it.   I figure I get a pass, but still.  I need to work on my larger blog entries for therapy.   There are stresses involved here that I will try to document for posterity.
Sorry for the short post, I'm a bit out of sorts today.

Don't worry though, we are still very optimistic and positive.   We will beat this together.

Some clarity

The schedule is coming into focus.   We know that my port will definitely be installed next week.   Maybe.   I may know on Monday exactly when this is to take place.  I'll let you know.   I think they are waiting on parts or cables or something.  The ultrasound of my heart, or echo cardiogram, is scheduled for Monday, February 28th at 9.   The PET scan is scheduled for Monday February 28th at 11.   If the port gets installed next week, then it is possible that my first chemo treatment will be March 2.  Should be a fun time.

I'm looking at the patient instructions for the PET scan, and a diet is listed with the following warning:

PLEASE ADHERE TO THIS DIET

Bold and underlined.   It must be important.  If I do not adhere to the diet, Very Bad Things(tm) may happen, I suppose.   But looking at the diet, what do I see?   You guessed it.  Broccoli. 

Don't be afraid to post comments, I appreciate any words of support.   Also, if there is something about my journey you would like me to comment on, please let me know.   I have a post in the works on how faith, family, and friends play a major part in all of this, so stay tuned!

Unintended consequences

I've gotten some feedback on my bone marrow biopsy post, and I need to come clean.   Some of you read it, and were horrified about what happened.   So, I need to give you the straight scoop:   I hate broccoli.   What does that have to do with it? 
Last year, a friend of mine had a bone marrow biopsy.   I knew what to expect.   I had seen my own son get one when he was 2 years old.   I knew it was going to be unpleasant.   But, when we were talking to the oncologist, my wife asked if I needed to change my diet to include more fresh vegetables, like broccoli.   I was far more concerned about the prospect of a life full of broccoli every meal than I was of the bone marrow biopsy. 
Have no doubt here, the biopsy hurt.   It was an intense 5 minutes.   Only 5 minutes.   It took me longer to write about it than to actually go through it.   I've had far worse pain in my life than that.   I had my appendix flare up a couple of years ago that caused intense agonizing pain for hours.   The emergency room gave me TWO shots of dilaudid (which is very powerful pain medicine), and I could still feel it.   The biopsy was a walk in the park compared to that.
I think that it was funnier to write than it was to read because there was no context.   I met Malena in the examination room after the procedure all smiles.   We took a 3 mile walk in the afternoon.   I was fine.  I always try to go for a laugh, and find the humor in things.   Sometimes I miss.

In the future, I will try to be more sensitive when I write on matters involving my pain.   I did not mean for anyone to be afraid for me.   I am sorry if I caused anyone to be overly concerned or horrified.   I need you to laugh with me through this.

Now back to the fight!

Sightseeing at the oncologist's office...

We went to see my oncologist today.   We were very encouraged by some of the things she said.   The word 'curable' was used a few times.    So was 'if'.    We are still guarded, and know that this will be a fight.   The doctor sat in the examination room and spoke with us for at least 30 minutes.   That surprised me.   She had to move into a larger area because she has so many patients, yet took that amount of time just to chat with us.   It wasn't all history gathering stuff - she answered all of our questions, gave advice, and made us feel really good about our situation.   That is so much different from seeing a general practioner, where they try to move people through as quickly as possible.  It was very nice.

To some of the finer points of the visit:  certain procedures are being scheduled.   We should hear from my oncologist's office tomorrow with details and will let you know, but I have to have a PET scan.   Surprisingly, it has nothing to do with my dogs.   A PET scan is where they pump you up with a special formula (it takes an hour to do so, I believe), and send you through an MRI looking gizmo.   The liquid hunts down cancer cells and pools there, and will show up in the gizmo, as long as the growth is at least 1 centimeter.   That sounds fairly painless.  

Next is an ultrasound for my heart.   One of the medicines in the chemo treatment, R-CHOP, is kind of tough on the ticker.   An ultrasound will make sure that my heart can take the treatment.   Another painless treatment.

Then, I need to have a port installed.   A port will allow the chemo to be more easily administered, and will allow me to download pictures faster.  This will be installed in my chest, and  I'll have to go under the knife again for this.   More stitches.

These things should happen early next week, with the ultrasound and the PET scan happening on the same day.  

Staging.   This is where the doctors determine how widespread the cancer is.    We are all hopeful that we caught this early since I have no other symptoms than the knot that was on my neck.   But the PET scan and bone marrow biopsy will let us know for sure.

I know what you are thinking.   He didn't mention a bone marrow biopsy.   Sure I did.   Look 4 sentences back and you'll see it right there.   Before my oncologist walked out of the examination room, she mentioned that I needed a bone marrow biopsy.   Today.   Now.   I had heard others speak of it, but there is nothing like going through it yourself.   The nurse took me to another room, which was good because I didn't want my wife to see me go through it.   I saw my second son have something very similar to this when he was 2 and had a bout with ITP (google it.   It can be nasty, but he is ok now) and I knew it would not be pleasant.  Spoilers are ahead, so if you don't want to know, its best to skip forward. 
I had to pull my pants down enough to expose my hip bone, and lie stomach down on a hospital bed.    The doctor then administered a local anesthetic.   This is the first point of the procedure that needs to be clarified.  The greek anesthesia means “want of feeling,” and the local would indicate that nerves in the localized area would "want of feeling," or be asleep.   That is what I expected.   However, I think the hospital staff used a different anesthesia, perhaps from a german root, which means "amplification of pain," and the local would indicate everywhere within the same zip code.  She shot the anesthesia, or molten lava,  into my hip and I almost hit the ceiling.    Pain from the 'local' area spread down my right leg to my knee and persisted for what seemed an hour, but was only a couple of  minutes.  That pain stopped only when she inserted a needle into my hip bone.   Insert gives the impression of a smooth, even gliding application of the needle.   Nothing could be further from the truth.   I think she had to use a hammer to drive it into the bone.   Interesting point:  local anesthesia only affects nerves in the skin and muscle tissue.  NOT BONE.   So yes, that hurt.   Then she had to draw out the marrow.   Holy cow, I think that I felt my foot draw up from the suction.   I can still hear the sucking sound that was made drawing out the marrow, but, in all honesty, it could have just been me trying to get oxygen to deal with the pain.   Everything on me was clenched.   The nurses were asking me questions the whole time, presumably to take my mind off of the procedure.  I tried to answer, but I don't know if I was speaking any known language.   She removed the needle, which was mildly painful, like having a finger snatched off of your hand, and started to retrieve bone.   Actual bone.   I think she used a hole-saw for this, the kind you would use to cut a hole in a door to install a knob.   I experienced brand new levels of pain here, and continued to speak in my newly acquired tongue.   The sample was then place into some kind of sample tray, femur sized, and I was given a band aid.   A band aid.  Really?   For that?   I needed some kind of butt sling.   After the bleeding stopped, and I returned to my native language, I was taken back to the room with my wife.   The nurse came back almost immediately with scheduling instructions to give to the scheduling assistant.   The nurse must have had a sick sense of humor, because she briskly walked to the door down the hall to point us toward the assistant.   I was not at race speed.   I finally got to the door, and she finished her lunch, and we were on our way.   The assistant will call us tomorrow with the details of the procedures we have to do next.

It is possible that I will start chemo next week, but most likely it will be the week after.   I'm ready now.  Let's go.   Hear me, cancer?   It's on!

What's happening with Mike?

I know this question has been asked more than once lately.   The short answer is that I have cancer.  On January 21st, I was camping with our Boy Scout troop, and noticed a lump on the side of my neck.    I didn't have a real mirror, so I didn't get a good look at it until I got home on Sunday, January 23rd.   I made an appointment with my doctor, and saw her on January 28th.   She ran several blood tests, and a white count.   The tests, including mono, came back negative and my white count was normal.    This is when I knew something was up, and cancer was a real possibility.    My doctor prescribed  a one week course of antibiotics and scheduled my followup for February 4th.  There was no reduction in the size of the lump that week, and my doctor scheduled me on the spot to get a fine needle aspiration from a team of oncology surgeons at a hospital nearby.

A fine needle aspiration is medical terminology for repeated stabbings into the area of concern with a hypodermic needle.   For reasons I don't understand, cells cannot be drawn out with a syringe.   Multiple stabbings are necessary to fill the needle.   It was very Spanish Inquisition.  I was not expecting that.   My wife was watching the whole procedure on a computer screen that was connected to an ultrasound.   She determined that the lump was a boy.

The results of the biopsy came back on Tuesday, February 8th.   Lymphoma.    I was immediately scheduled for a right cervical lymph node removal on Thursday, February 10th.   I was concerned at this point, because I am a man, and don't have those parts.    Then I was told that cervical means 'neck'.   Oh.    The surgery went well, although the surgeon had to cut through muscle to get to the lymph node and he bumped a nerve.  The results of that were a very tender neck, and no feeling on the outer edge of, and directly behind, my right ear.   I don't go touching things with those parts anyway, so no big loss.   The surgeon took my lymph node to pathology, and told me he would get back with me on Tuesday, February 15 with the type of lymphoma I had. 

We (my wife and I) spoke with the surgeon on Tuesday.   For all of you who guessed diffuse large b-cell lymphoma, you win a prize.   I'll get it to you promptly in March, 2157.   Tomorrow is February 17, and we are scheduled to see an oncologist.   I hope that I know more about this cancer after speaking with her. 

As you can imagine, things have been quite stressful.   Lots of ups and downs, and more than a few tears.   I am encouraged by what little I do know about this cancer, in that I have a fighting chance.   A really good fighting chance at that.   When I was a kid, lymphoma was a death sentence.   But, with the exception of fine needle aspirations, medicine has improved tremendously.    I'm gonna beat this.