Needles, Scans, and Surgical Procedures

Today concluded a week of testing, poking, and prodding.  At last count, Steve counted nine needle sticks and IV's.  He is definitely feeling like a pin cushion!

Yesterday Steve went in for his Bone Marrow Biopsy at Good Samaritan Hospital.  We made the decision to have the procedure done under partial sedation at the hospital rather than having Dr. Liao do the procedure in his office with a local anesthetic.  Now, Steve is no wimp; but if you had an instrument similar to the size of an ice pick shoved into your pelvis bone, wouldn't you rather be out for it too?  Steve wants you all to know... if someone tells you it won't hurt the next day, they are lying.  He was told it would feel like a little bruise; he told me that it felt like someone had thrown him under the truck!

Debbie was Steve's nurse and she was a kick.  She laughed with us and we joked with her.  In the course of telling her the story, Steve told her about his swollen leg.  You see, Steve had accumulated a lot of fluid beneath the incision from his lymph node removal surgery.  Debbie called the surgeon's office and got one of the surgeons to stop by and take a look.  The surgeon agreed that it was a problem but concluded that it was not infected.  He recommended that he get it drained and wrapped.

Here is Steve and Debbie at Good Samaritan just before the biopsy:

Debbie told us that the instrument they use to do the Bone Marrow Biopsy is really more like a sharp straw than a needle.  Steve laid on his stomach as they pushed the instrument into his lower back, entering in his pelvis bone.  The sample looks like a one inch piece of spaghetti when it comes out.  When she described this to us it reminded me of taking a core sample from a tree to date it.  Poor Steve!  He now has a small puncture hole in back that is covered by a bandaid.  No showers for 48 hours to reduce the chance of infection. 

Steve began is day today having a PET Scan at 7:30 am at the Multicare Regional Cancer and Infusion Center here in Puyallup.  Steve had to fast all sugars, carbohydrates, and caffeine the day before the test.  (Not fun after having to fast for his Bone Marrow Biopsy too!)  To say the least, he was not a happy camper!  The reason why he had to refrain from these things was because he had to be injected (through an IV) with a sugar solution.  Having sugar in the body can throw off the results of the test.  Any cancerous tumors love the sugar in the solution and it will "light up" on the PET scan.  Doctors sometimes call these hot spots. 

Here is Steve and his technician, Nick.

Below is a picture of that classic "thumbs up." 

For those of you who may not have ever seen a PET scan, here is a little video of Steve going into the PET scan. 

After the PET Scan we went to see Dr. Kim and have him take a look at Steve's leg.  The doctor agreed that Steve had an extraordinary amount of swelling that was most probably due to a leak from the lymph node being removed.  He debated about what the best course of action was, but in the end, he decided to drain the fluid out of his leg and bandage it up. 

The doctor numbed up Steve's leg a bit and then inserted a large syringe into the site.  Dr. Kim drew out about 16 ounces of clear yellow fluid from his leg.  It looked just like a glass of beer; about the same color and consistency!  It did not appear to be infected.  Dr. Kim said that it would be best to see if Steve's body would close up the leak on it's own.  Going in surgically to repair the leak it an option, but that would have risks of it's own.  So right now we are going to wait and pray.  Dr. Kim can surgically repair it next Wednesday when Steve has his Port put in; we are hoping it heals itself.

Finally, we concluded the day having Steve's CT scan (with contrast) done.  He had to drink two large bottles of Barium Sulfide prior to the test.  The technician would not let me go with him into the room to take photos, so I do not have any to share.  The CT scan looks a lot like the PET scan shown above.  In fact, the PET scan machine shown above is also a CT scan.  It has two functions!

Steve said that the worst part of the CT scan was the feeling of the dye being injected into his body.  He said that it feels very strange and uncomfortable when you can feel the warm dye travel all around your body.  It happens so quickly!  

We will now wait until Tuesday to get all of the test results back from Dr. Liao.  We should know if or where any cancer exists in his body.  We should also get the results of the FISH test back that will tell us if Steve's Lymphoma transformed from a slower, small cell Lymphoma. I will do my best to post another blog on Tuesday evening, sharing the results with all of you.  Thank you all for all of your continued prayers! 

Recovering from the Blow

Steve and I have experienced a tremendous outpouring of support from our family and friends. When people ask how I am doing or how Steve is doing through everything, lately my answer has been this, "We are recovering from the blow." 

You know, the feeling you get when you have been punched in the stomach by some jerk without warning and the wind gets knocked right out of you.  For a moment, you can’t even catch your breath.  There is shock, pain, and breathlessness.  And then, with your head down and stomach in, you reach deep down inside, grit your teeth, and gasp for air.  It is difficult breathing at first, but eventually you catch your breath.  When you finally get your bearings, you face your enemy and get ready to not only defend yourself, but to demolish him.  You are not just angry, you’re furious!  Who does this creep think he is?  Who would have the audacity to sucker punch you without cause or provocation?  You bet you’re angry and rightly so! 

If you know Steve, you know that man keeps a tight reign on his tongue.  You don’t hear him shouting explicatives or using colorful language.  But lately, I have heard him say many times, “This is all bull shit!”  And when talking about his testing and treatment he will say, “I really don’t want to do any of this!” Yesterday he used the word “obstinate” to describe his state of mind.  But a few moments later he said, “I know, I know.  I’ll take my medicine.  I just won’t like it!” 

For me, it goes beyond anger.  I feel like Adrienne in the old classic, Rocky.  She watched her husband get attacked by his opponent, helpless to defend him.  I am not only angry; I am sad and scared too.  I know what could ultimately happen; the thoughts have crossed my mind.  I try not to think about them, but nonetheless they are real and present.  You see, Steve and I possess a deep and passionate love for one another.  I simply cannot imagine my life without him...

Shifting gears, how about I tell you a bit about today?

Today Steve had a MUGA (MUltiple Gated Acquisition scan) test done at Puyallup Nuclear Medicine.  This is a noninvasive test that produces a moving image of the heart. From this image, the health of the heart’s major pumping chamber (the left ventricle) can be assessed.  A MUGA scan is performed by attaching a radioactive substance, Technetium 99, to red blood cells, then injecting the red blood cells into the patient’s bloodstream. (The level of radiation to which a patient is exposed during this test is considered minimal.) The patient is then placed under a special camera (a gamma camera), and with some fancy computer manipulation, a “movie” of the beating heart is made. From this moving image, the MUGA scan gives an accurate and reproducible way to measure the ejection fraction (EF) of the left ventricle (http://heartdisease.about.com/).  Dr. Liao ordered the test as a baseline before Steve begins Chemotherapy next week. 

They first drew some of Steve's blood and then added a radioactive isotope marker to it.  Then the blood was reinjected into Steve's vein and allowed to circulate back into his heart.

Next, Steve went into the MUGA scan for about 15 minutes while the machine took pictures of Steve's heart. If you look close, you can see Steve inside the machine.  He is wearing a light blue shirt.

Then the camera is repositioned and the MUGA takes a few more pictures.

Finally, we got to see Steve's heart on the computer!  The technician said that any score above 50 is good.  Steve got a 61 (EF).  In other words, he has a strong heart! 

The technician said that if his MUGA score were to drop about 10 points, they would need to discontinue giving Steve the medication in his Chemotherapy regime that cause that weakens the heart.  This was the first of possibly many MUGA tests to come.

Tomorrow Steve has his Bone Marrow Biopsy at Good Samaritan Hospital in Puyallup.  We will see if the cancer has made its way to his stem cells.  Thank you for your continued prayers!

A New Twist to the Story

Today Steve and I went up to Seattle Cancer Care Alliance (SCCA) to meet with Dr. Farah, an oncologist who specializes in Lymphoma.  He spent a great deal of time discussing Steve's evaluation and treatment.  Dr. Farah did a great job explaining Lymphoma to us the going into details about the course of treatment. 

We also heard of a new twist to the story that could be a real game-changer.  There is still some question about whether Steve has strictly the diffuse Type B large cell, fast growing Lymphoma (Non-Hodgkin's Lymphoma) or whether he FIRST had the slow growing, small cell Follicular Lymphoma that transformed into the fast-growing, large cell diffuse Type B variety.  Apparently there was some indication in his pathology report that this may have been the case.  Seattle Cancer Care Alliance has ordered the slides and samples of Steve's tumors so they can provide us with a second opinion.  If I understood what Dr. Farah was saying, they will look for evidence of follicles in the lymphocytes (white blood cells).  

You might be asking why this is important.  Well, if he first had the slow growing Lymphoma that transformed into the fast growing Lymphoma, that would mean that he would most likely have to live with Lymphoma for the rest of his life -- that kind of Lymphoma is not curable.  It can go into full remission, but it always come back and when it does, it is much more aggressive.  If he simply has the fast-growing non-Hodgkins Lymphoma he has a high rate of cure after treatment.  They are currently performing a cytogenic study of his chromosones to determine if his Lymphoma cells transformed.  In both cases, he would still need to have the full course of Chemotherapy.  We are really hoping and praying that he simply has the diffuse type B large cell lymphoma because then he could go through the treatment and there is a greater than a 60% chance of him being completely cured.

The next two weeks will be filled with testing, scans, surgical procedures and Chemo.  The testing will help the doctors determine what stage of Lymphoma he has (I - IV) and what his prognosis is. 

Here are the 4 Stages of Lymphoma.

If they determine that Steve first had the slow growing Lymphoma, then he will be in Stage 4 because the slow growing Lymphoma affects the stem cells in the bone marrow.  The bone marrow study on Thursday will help us know how his stem cells are doing.

• Stage I: A single tumor which hasn't spread.
• Stage II: More than one tumor, but the tumors are all found in lymph nodes on the same side of the diaphragm (all above or all below). Stage II can also mean that a tumor has spread to another organ, but that it is close to the original lymph node tumor.
• Stage III: More than one tumor with the tumors found on different sides (above and below) of the diaphragm. There may be tumors in the spleen or more than one tumor in nearby organs.
• Stage IV: Many tumors spread throughout an organ such as the liver or stomach, as well as in the lymph nodes. Stage IV can also refer to a single tumor in another organ, plus tumors in distant lymph nodes. (http://www.cancer.org/)

We already know that Steve is at least in Stage II because he had two lymphnodes removed last Monday and both have been confirmed to be cancerous. 

I wanted to provide you with the dates of his tests, surgical procedures and chemo so that you can be abreast of what is going on and can pray specifically for Steve.  

9/26 Steve at  Seattle Cancer Care Alliance with Dr. Farah.	9/27	9/28 Steve having MUGA (Heart functioning test) at 8:30 – Puyallup Nuclear Medicine	9/29 Steve having a Bone Marrow Biopsy at Good Samaritan Hospital at 12:30 pm.	9/30 Steve has a PET Scan at 7:30 am at PET Scan Radiology and then has a CAT Scan at Diagnostic Imaging at 2:00 pm.
10/3	10/4 Steve has an appointment with Dr. Liao to discuss the results of the testing and determine staging and prognosis at 8:30 am.	10/5 Steve has his port surgically put in by Dr. Kim at 8:30 am.  We have a Chemo Teaching class in the afternoon with Dr. Lia0 at 2:30 pm.	10/6	10/7 Steve has his first Chemotherapy with Dr. Liao beginning at 9:00 am.

We are unable to project how things will go after the 7th because we do not know what stage of cancer Steve is in.  The stage and prognosis will affect his treatment.  Right now Dr. Liao has recommended chemo every 3rd Friday for 6 weeks.  We will find out more next week when we meet with Dr. Liao on 10/4/11.

Right now It feels as if we have been sucked into the eye of a hurricane.  Although there is much destruction and chaos going on all around us, inwardly we find great peace in knowing our God is with us in the center of this storm.  

How Did We Get Here?

It was early in the summer...the beginning June.  Steve came into our bedroom to bring me bring me a cup of coffee and wake me up for work. He knows how terrible I am at waking up in the morning! You see, we have a deal.  I make the coffee in the evening before bed and set the timer to 4:15 am.  Then he wakes up at 4:30 am, goes downstairs, pours himself a cup of java and heads into the den to read his Bible and pray.  Then he makes his way to the living room to exercise and stretch.  About ten minutes to six he arrives in our bedroom with a hot cup of coffee, forces me sit up, and administers to me my first coffee fix of the day.  He then turns on our television to the local news so I can be brought up to speed on the weather, traffic and news headlines for the day.  Steve is an amazing and wonderful creature of habit.  One of the most dedicated, disciplined, and loyal people that walk the face of this earth.  However, this particular morning was different.

As he approached our bed to awaken me from my slumber, he did not sit me up and give me a sip of coffee.  Instead, he woke me up by saying, "Michelle, feel this.  I have this strange lump in my groin." (I know what you are thinking...it wasn't that kind of lump!)  He guided my hand to a hard, pea-sized fleshly mass that was just about a couple inches from the top of his thigh.  He told me he discovered it when he was doing his daily leg stretches.  We talked about the strangeness of the lump and speculated on what it could be.  He then proceeded to hand me my coffee and went on with our morning routines.

The days and weeks went by, and he would occasionally comment that his little lump had not gone away.  He still wondered what it was.  It didn't hurt or bother him at all, but it was peculiar.

And then something odd began to happen.  The lump began to grow, daily increasing noticeably in size.  It seemed to go from the size of a pea to the size of a small egg in a matter of two weeks. Steve would come to me more frequently in the morning, placing my hand over his leg and showing me how much it had grown.  I told him he needed to get it checked out -- he agreed.  This was not normal.

He scheduled himself for a check-up at a urgent care facility the day of our 24th wedding anniversary, Monday, September 12th.  The physician's assistant that examined him said he needed to see a doctor of internal medicine and referred him to Dr. Nam.  Three days later, Steve saw Dr. Nam and was told some rather disturbing news.  Dr. Nam suspected that Steve had a swollen lymph node and discovered another mass that had mysteriously appeared close to the lump in his upper thigh.  This one was now the size of a marble and was near his right pelvic bone.

Dr. Nam told my husband that he would need to get a biopsy done right away.  He told him of his suspicions of cancer and said he probably had Lymphoma. He scheduled him for an emergency biopsy with Dr. Kim the very next day.  That was last Friday, September 16th. 

When Steve told me the news from Dr. Nam, I was shocked and horrified that the doctor would have the audacity to tell Steve he had cancer without a biopsy to confirm his prognosis.  I was not willing to accept anything this man had to say. 

Steve told me he did not want me to take time off of work to be with him for the biopsy.  He was able to rationalize this:  if it was cancer, we would need to save all of our sick days we could.  When Dr. Kim examined the large lump in his groin, he told Steve that he would not mess around with a biopsy.  He said the lump needed to come out right away.  He scheduled Steve for surgery the very next day.  That was last Monday, September 19th.

I was there for Steve's surgery; I wasn't going to let him go through the surgery alone.  He was in good spirits -- joking with the nurse about his swollen groin.  (Something along the lines of removing his third testicle I believe.)   He did well through the surgery and the surgeon was able to remove both masses without complication.  We now had to wait a grueling 3-5 days to get the biopsy results to be made known to us.

His recovery from surgery proved to be much more challenging than first thought.  He thought he would be able to return to work the very next day.  The reality has been much different.  He was very sore and swollen, causing him to become greatly concerned.  Thursday night he was in a lot of pain and Friday morning was no better.  The swelling was not going down, even with a vast quantity of ice.  He decided he needed to stay home.  I made the decision to stay home to take care of him. 

Steve got in to see Dr. Kim on Friday at 9:00 am.  Dr. Kim took a look at the incisions and the swelling.  He told us that it looked good and the swelling was normal.  We then asked him about the test results.  He checked Steve's file and glanced back at us with a solemn look on his face.  Yes, the biopsy results had come in.  He did not hesitate in telling us:  It was confirmed, Steve had diffuse type B large cell Lymphoma.  Apparently this is the non-Hodgkin's, fast growing variety.

BAM!!!  In an instant our lives had changed.  Our hopes, dreams and ambitions now put on hold while we were instantly plucked from a road to career development and retirement to a road we never asked or ever wanted to travel.  This road was marked with a sign that said, "Warning!  Road Contains Many Hazards that May Result in Injury, Even Death." 

What a shock to the system.  I grabbed Steve's hand a gave it a hard squeeze.  I saw him swallow deeply and begin a series of questions about what this diagnosis could possibly mean.  Dr. Kim was calm and patient, carefully addressing our questions and helping us to understand the what this new reality would mean to us.  He said we would need to schedule Steve for surgery to get a port put in for the Chemotherapy. He would be able to do that for us.  He told us that he works with a good oncologist who was just across the hall and they would schedule us in for an appointment later in the day.  After setting up the surgery to have his port installed on Wednesday, October 5th, he sent us down the hall to get blood drawn and do the pre-op work.  This all happened in an hour after hearing the news.

We were thrust into this crazy, new world like Alice in Wonderland, sliding down the rabbit hole. Where have we landed?  Is this the land of Oz?  Is there a yellow brick road or maybe some small jar labeled "drink me?"  So much has happened and we had little time to digest.

After getting Steve's blood drawn, we had some time before we would meet with Dr. X. Michael Liao, the oncologist and hematologist.  Steve immediately made his first phone call to a colleague at work, who shared with him that he had been diagnosed with the very same type of Lymphoma one year ago.  He encouraged Steve to consider getting treatment at Seattle Cancer Care Alliance, where he received inpatient treatment.  Once year later, he is now cancer free and doing quite well.

We arranged to have an appointment with Seattle Cancer Care Alliance on Monday and met with Dr. Liao (pronounced like "meow" with an L) at one that afternoon.  Dr. Liao spent a great deal of time with us talking about Steve's diagnosis and treatment options.  He explained the benefits to being treated locally, which included immediate care and access to him 24-7.  He even gave us his personal cell phone number, which he does to all of his patients, and said we could call him anytime.  He impressed us with his knowledge and experience -- said he was a doctor for Seattle Cancer Care Alliance for 4 years and then transferred to M.D. Anderson Cancer Center in Houston, Texas where he both practiced and taught as a member of the faculty.  He has been a leading cancer researcher, is well published, and speaks around the world.  How he landed in Puyallup, Washington...well, he said, "that's a long story for another time."  I just knew that after meeting him, he was a gift to us.  It wasn't coincidence or chance.  This was a Divine encounter -- arranged in advance by a God who loves Steve passionately and wants the very best for him.  I feel as if Dr. Liao is going be a guide along the new road we are now traveling.

God only knows why Steve must drink this cup he has been given.  He has been and remains to be one of the healthiest and fit 55 year old men I have ever met.  I believe there is a purpose in all of this that remains unseen.  Steve will be challenged and tested, and without a doubt will come out on top.  Steve was a state wrestling champion in high school; he is a born fighter.  But more than that, Steve is a faith-filled, God-fearing man who has a deep and passionate love for his Creator and Savior. At the end of the last round, his arm will be raised and he will be declared the champion.

Next week will be filled with lots of testing, scans, and even a bone marrow biopsy.  He will start his chemo after his port is installed.  Please keep Steve in your constant prayers as we cannot and will not travel this road alone.  We want you here with us -- we need you here with us -- encouraging us, praying for us, and standing with us as we take on and conquer this invisible enemy called cancer.