Moving Forward -- One Step at a Time, One Day at a Time

Steve ended up spending another night in the hospital for a total of 5 days. As much as we wanted Steve on the I.V. antibiotics for another day, his I.V. had a different plan. After surgery for his port on Monday afternoon, Steve's I.V. failed him and a new one needed to be put in. Sallieu (Sal' - loo) was Steve's daytime nurse. He was a handsome, muscular, newly engaged, and very congenial nurse from West Africa -- obviously very health conscious. We also found out that Sallieu was a graduate of WSU. With our son being a fellow Coug, that made our bond with Sallieu even stronger. Being of a like mind, Steve enjoyed talking to Sallieu about weight lifting and exercise routines. Sallieu carefully put in a new I.V. after surgery and by 8:00 pm it too failed and wouldn't even allow for a flush.

Another unfamiliar nurse came in and inserted a third I.V. into Steve's arm, using a different vein than the original one. We thought that one would take, but unfortunately, it too failed. Apparently at 1:30 am, Steve had to endure the torture of 4 more I.V.'s being put into the veins of both of his arms. One after another they all failed. When Dr. Kim came to see Steve in the morning, he made the decision to discharge Steve. Five days of I.V. antibiotics coupled with the installation of Steve's JP drain seemed to do him a world of good. Lack of sleep and failing I.V.'s were not serving Steve well. It would be best to send him home with oral antibiotics and let him rest in peace, without being interrupted every few hours for to take meds, vitals, and change his I.V. bags.

The new and improved Good Samaritan Hospital

Overall we had a great experience at Good Samaritan Hospital. It was kind of like being in a hotel with an unlimited food expense account. Steve was able to order anything on a very elaborate menu and the food tasted pretty good. He would often order extra food just so that I could eat with him, saving us the cost and hardship of feeding me. Steve gained over 5 pounds during his hospital stay!

Enjoying a movie together after surgery

Steve actually borrowed a wheelchair from a couple from church and returned to work the very next day. Although he was extremely exhausted at the end of the day on Wednesday, he was glad to be back in the saddle again. All of this time in the hospital and doctor's offices has taken a real toll on both of our work lives. We are so fortunate to have supportive and understanding supervisors, but since Steve has only been at his company for 6 months, he has no sick leave and will not be able to make up all of the hours he has missed. Every day and hour he is gone amounts to a loss of pay. Although he tries to remain positive, he is concerned about the cost of this cancer. Each day he can work is a day with pay. With months of chemotherapy looming in the near future, he needs to work every day is physically able.

On Thursday Steve had a consultation with an Endocrinologist. He showed us the ultrasound images where two masses were found in Steve's thyroid gland. Each mass measured about 1 centimeter and although the doctor could not be certain, he said the features looked benign, but he could not be certain. The decision was made to have a needle biopsy, which is scheduled for next Thursday, October 27th at 2:30 pm. At this point, we don't even want to entertain what would happen if the nodules were malignant, so we will wait to cross that bridge when we come to it. What we are learning to do is to take one day at at time. Each day truly has enough trouble of it's own!

Today Steve had a follow up with Dr. Kim, his surgeon. He took out Steve's staples, examined the JP Drain, and looked at the port-a-cath in his chest. He was pleased that Steve's lymph fluid drainage was slowly beginning to decrease. When he was in the hospital it was draining at the rate of about 150 milliliters every 2-3 hours. Presently it is draining at the rate of 15-20 milliters every 3-4 hours. Dr. Kim said that once the drainage gets down to 10 milliliters a day he will remove the drain. He doesn't believe that Steve has Lymphedema and is hopeful that the lymph fluid will ultimately find a new path in his body.

Based on the good report from Dr. Kim, the decision was made that Steve would be strong enough and healthy enough to begin chemotherapy next Friday, October 28th.

We have been overwhelmed with love, support and care that we have been shown over the past month. People have sent cards, flowers, prepared meals, and one person even gave us a gift card to Applebees! It is absolutely humbling to receive these gifts and sentiments -- we count our blessings each and every day. An army of prayer warriors have been assembled and are contending for Steve's ultimate healing. We appreciate every kind word, gesture, and act of love. Thank you all. You mean more to us than you can possibly imagine! We continue to press on, one step at a time, one day at a time.

Please continue to pray that:

• The lymph fluid finds a new path in Steve's body and that the drainage would stop.
• Dr. Kim and Dr. Liao would have wisdom and understanding in determining the best treatment for Steve.
• The cancer would be cured and would not spread in Steve's body.
• Steve would not have any harmful or difficult side effects from the chemotherapy.

Our Newest Enemy's Name is not Cancer

Today was day four in the hospital.  Steve has been getting an intravenous antibiotic called Zosyn every 6 hours on the clock.  He has responded nicely -- his outward signs of infection are gone and he has been feeling more and more like his old self again. 

After checking Steve out this morning, Dr. Kim made the decision to go ahead with the surgery to place his port-a-cath.  He had the surgery at around 1 pm this afternoon.  Dr. Kim said he nailed it! Perfect placement of the port and no complications.  Although he could have arranged to go home after the surgery, Steve decided to return to his room to recover.  He had been struggling with a headache, neck ache and nausea. 

We debated whether to stay another day or go home and switch to oral antibiotics.  After much thought, prayer, and consultation with our doctors we decided it would be best to stay another day so that Steve had 5 days of the IV antibiotics before heading home.  At that time he would switch to 7 more days of Augmentin just to be sure we have nipped this infection in the bud.

Steve and Dr. Kim after surgery today

Steve woke up today and was encouraged by the fact that his swelling in his leg is down and the amount of lymph fluid in his JP (Jackson-Pratt drain bulb) was greatly reduced.  Unfortunately he went to be last night thinking that he was in a free fall, spiraling out of control.  You see, I did some research online yesterday and found out some disturbing information.  If the lymph fluid does not stop draining, Steve could end up suffering from a chronic condition called Lymphedema.  Dr. Liao told us to day that if Steve did end up with Lymphedema, it could turn out to be more of a problem then the Lymphoma!  Steve's Lymphoma stands a good chance of being cured, but Lymphedema does not have a cure.  Patients with Lymphedema suffer with inflammation in the extremities that often lead to Cellulitus -- an infection of the skin most often due to Staph or Strep bacteria.  Elephantitus is an extreme form of Lymphedema.  His surgeon, Dr. Kim, is encouraged by the reduction in lymph fluid and does not feel that Steve has that condition or will develop that condition.  We remain hopeful that Steve's tissues will grow back together and that his Lymph fluid will find a new route through his body instead of pooling in his leg.

This is a good example of Steve's JP Drain.

Steve holding his JP Drain -- You can see the Lymph Fluid in the Bulb

Dr. Liao also told us that Steve will not begin his Chemo this Friday.  He wants to wait some time to be sure the infection is completely gone.  Starting Chemo with an active infection can kill a person.  Dr. Liao does not want to take any chances and we appreciate his cautious approach greatly.   Steve has his boxing gloves on and is ready to fight this cancer with all his might.  However, standing outside the boxing ring is a new opponent. This new enemy's name is not cancer; his name is Lymphedema.  We pray that this opponent would not even get a chance to enter into the ring but would be put to death now.  Please join us in unleashing the wrath of God upon this mortal enemy by joining us in prayer!

Please pray that:

• The lymph fluid finds a new path in Steve's body and that the drainage would stop. 
• His tissue on his leg, where the fluid had formally been collecting, would fuse back together. 
• Steve's infection would be completely gone and would not recur.
• Dr. Kim and Dr. Liao would have wisdom and understanding in determining the best treatment for Steve.
• The cancer would be cured and would not spread in Steve's body.

       





Our Little Scare -- Part II

It is 3:30 pm on Friday. I have just returned home from the hospital where I left Steve alone to sleep for a while. We had a very long night last night and another eventful day today.

Steve never made it in for his port surgery today. Last night Steve's fever returned and so did the body aches, head aches, and chills. I took his temperature around 4:00 am, only to find that it was climbing to nearly 101 degrees. Dr. Liao's instructions were to call if his fever got above 100.5 so at 4:30 am, I picked up my phone and texted him a message. Below is a copy of our dialog:

Me: Steve's temperature is back up to 100.8. He is not shaking but is feeling sick. We are going to the hospital but are concerned about surgery when the infection is not under control. Please advise.

Dr. Liao: Yes, go back to ER. He needs to be in the hospital for antibiotics. Make sure the ER doctor gives me a call.

Me: Should we go to admitting or the ER? We have a 5:30 appointment for surgery. Should we just go to admitting?

Dr. Liao: Go to admitting and then Dr. Kim will be able to see him and make a decision on surgery and antibiotics, drainage, etc.

Me: OK. Thank you. Sorry if I woke you!

Dr Liao: Don't worry. Take care.

Can you believe that? A doctor who not only answers your phone calls in the evenings, but texts you in the wee hours of the morning? Unbelievable! This man is a gift from God sent to us to minister healing to my husband. I cannot tell you how much he has meant to Steve and I in a short period of time. I know that Steve is receiving the very best care possible.

Anyway, what happened next? Well, we went to the hospital and checked into admitting. We were brought into pre-op and told the nurses the story. They did not know whether to admit him or to prep him for surgery. One of the nurses paged Dr. Kim and in a short time, he showed up in the room. Dr. Kim took one look at Steve's leg and he too shook his head. "Hmmm....." he said. "I really don't know how I feel about doing surgery for your port with your leg looking like this." It didn't take long before he arrived at his decision. He would change the surgery from installing a port to putting in a drain. Now instead of conscious sedation, we would need an anesthesiologist. Steve was going to be put to sleep for this one.

They prepped him for surgery in no time. Prior to Dr. Kim leaving the room, I asked him if he would pray with us. A friend of ours, Paige, who has been fighting Ovarian Cancer for 5 years, is also a patient of Dr. Kim's and Dr. Liao's. She told us that Dr. Kim is a Christian and would pray with you if you asked. So I asked. He gladly agreed, layed his hands on Steve, and bowed his head in prayer. He prayed for God to guide him and give him the wisdom to make the right decisions in surgery. He asked God for his healing and to be with us during this difficult time. When he finished, I was doing all I could to hold back the tears, unsuccessfully I might add. I did not want Steve to see me get all emotional. I needed to be strong for him. But I am telling you, this has been one of the hardest trials we have been through in the 24 years of our marriage. The threat of death and dying is real and that thought of losing my husband is unbearable. I was not afraid of the surgery; I was stopping long enough in thought to reflect on all that had been transpiring in a few short weeks. Seeing my husband lay there in the bed, hooked up to IV's, his doctor praying for him and his well being choked me up. I realized that have never loved him more than I did at that very moment. I leaned over and kissed his forehead. "See you soon, sweetheart. I love you." And with that, he was whisked away.

The surgery went well. Dr. Kim told me that Steve will need to stay at the hospital for the weekend. If possible, he may be able to have surgery on Monday before he is released. If he does not respond to the antibiotics or if his surgery schedule will not allow, he will be released to go home on Sunday and we will return later next week for the port installation. After surgery Steve ended up sweating through all of his blankets. His fever broke and has now returned to a normal range.

Below is a picture of the drain that Dr. Kim installed on his leg. I have decided not to post a picture of what his leg looked like before the drain. Steve and I both agreed that it may bother some folks to see it because it is a bit gruesome. His leg looks so much better now that all of the fluid is out of there and the drain is installed! The tape and bandages are concealing the location of his seroma.

I am finally releasing a sigh of relief and feeling a good nap coming on! It has been a long and difficult few days and Steve and I are both ready for a relaxing weekend! I got Steve a few DVD's and books on tape, so hopefully he will stay entertained while he is at the hospital. I encourage you to email him at sfox@conradmfg.com or call him if you have his number.

Thanks again for your continued prayers. Through God's grace and his power, we will overcome!

Our Little Scare

Wednesday morning Steve had an ultrasound of his thyroid to confirm the presence of various nodules that showed up in his PET scan.  The technician could not say much, but did confirm the existence of several nodules in the center of Steve's throat.  She explained the thyroid to be like a saddle that goes directly across your throat.  In the center is the  saddle and on the left and right are the saddle bags. Steve has some nodules in the saddle, the center of his thyroid.  She took measurements so that we know the current size of the nodules.  At this point, we are simply praying and believing that Steve's cancer has not spread to his neck.  Dr. Liao has ordered a biopsy of Steve's thyroid, so we should get that scheduled for next week.

After work on Wednesday, Steve came home feeling quite ill.  He apparently became sick to his stomach after eating lunch.  From there, he went downhill.  I got home around 6:30 from work only to find him in bed, under several layers of blankets shivering, feverish, and uncommonly sick.  He showed me the seroma that had been growing on his leg and was now the size of his fist. Something had changed.  The skin around his seroma had gotten quite red and was really warm to the touch.  I took his temperature and it measured 99.9 degrees.  I called Dr. Liao and he said it was probably infected and that he would call in a prescription of antibiotics to the pharmacy.  It wasn't but a few minutes after our phone call that Steve started to shake uncontrollably.  No amount of blankets or heat would stop this reaction. I called the doctor back and he advised us to go to the emergency room.  He said Steve would need to be put on IV antibiotics and his seroma should be drained.  I called our surgeon's answering service (Dr. Kim) and left a message for the surgeon on call.  Dr. Petty returned my call, agreed with Dr. Liao and said he would meet us at the hospital.

We got into the emergency room quickly and the nurse on duty took one look at Steve's seroma and said we would probably be admitted.  He started an IV and drew a couple vials of blood to be tested.  The ER doctor came in a bit later and said that he would need to be started on IV antibiotics.  The ER doctor called Dr. Petty, who came to meet us a while later.

Dr. Petty took one look at the seroma and agreed it needed to be drained.  He also agreed with the administration of antibiotics.  A while later the white blood count came back.  It was normal.  It did not appear Steve had an infection, but based on everything we were seeing, that really didn't make much sense.  After draining about 12 ounces from the seroma, we were discharged and sent home.  The doctor did not see much sense in staying overnight.  After all, what could they do for Steve that would be better than being at home where I could take care of him?  Below is a picture of Steve in the ER.  After pumping him with some good narcotic drugs, he was able to conjure up a smile and thumbs up for the camera!

This morning Steve work up, still feeling pretty bad, but thank the Lord, the shaking and shivering had stopped.  He slept until almost noon, feeling exhausted and achy.  I called Dr. Liao to give him an update.  He said he wanted Steve to come in for another round of IV antibiotics. 

When we arrived at Partner Oncology, we were brought back to a room in the back that housed 12 reclining leather chairs, called Chemo chairs.  There were IV poles and nice flat screen televisions.  This is the room where Steve will go for his Chemotherapy.  A friendly nurse put in his IV and started his bag of antibiotics.  When he was about 2/3 of the way through the IV bag, another nurse came to get us for our Chemo Teaching.  She brought us into a patient room and proceeded to tell us all about the side effects of receiving Chemotherapy. 

It took about an hour for the nurse to tell us all about the side effects of chemo.  How could a person walk away from that without experiencing some anxiety and duress?  The list of side effects was daunting:  vomiting, nausea, decrease in appetite, hair loss, diarrhea, low red blood cell counts, fatigue, shortness of breath, anemia, low white blood cell counts (neutropenia), mouth sores, and numbness/tingling of the extremities (peripheral neuropathy) to name a few.

After we finished our Chemo Teaching, Dr. Liao came in to see Steve.  He took one look at his leg, shook his head, and said, "No, that is definitely infected."  He knew right away this was not good.  He told Steve to go ahead with his Port Installation surgery tomorrow morning with Dr. Kim but has decided to wait until the infection clears up before starting chemotherapy.  The risk of waiting to start chemo is definitely real, but the risk of dying from infection is greater.  The chemotherapy would lower his white blood cell count and if someone has an infection, he could end up getting MRSA and dying from the infection.  Dr. Liao gave Steve a prescription for 2000 mg/day of Cephalexin and said that he will recheck him next Thursday to see if he could possibly be ready for chemotherapy next Friday. 

Thanks again for all you are doing to support us in this difficult time. Four o'clock a.m will come quickly! I better get to bed!

Prayer requests for Steve: 

• that his infection would clear up quickly
• that the lymph fluid would find a new path and not build up any longer
• that his port installation would go well (it would be placed properly in his vein) tomorrow
• that he would have no further infections
• and of course, that he would be completely and 100% cancer free! 

Facing our Enemy

I arrived home from work yesterday, anxious to sit down and write Steve's blog.  I couldn't wait to share our good news.  Earlier in the day Dr. Liao had called with some very encouraging news.  He told us that the preliminary results of the FISH cancer test had conclusively shown that Steve's lymphoma had NOT transformed from a lower grade.  This meant that we could rule out the 3rd outcome I spoke of in my last blog.  This meant that Steve would not be facing stem cell transplantation and high doses of chemotherapy.  Dr. Liao's suspicions were confirmed.  There was now a very high probability that his cancer was STRICTLY the Diffuse Large B Cell Lymphoma.  If you recall, this is the one we were hoping for -- the one that has a 90% cure rate when discovered in Stage 1.  We were making plans to celebrate that evening and had made many phone calls to close family and friends to share the good news.

I wasn't two sentences into writing the blog when the phone rang.  It was Dr. Farah from the Seattle Cancer Care Alliance (SCCA).  Steve answered the phone and began to tell Dr. Farah the good news from the FISH test.  Dr. Farah then interrupted Steve mid-sentence and told him to hang on.  Sensing that the doctor had some important news to share, Steve yelled for me to come to the phone.  Dr. Farah asked me if I had my notepad handy, because I would inevitably need to take notes on what he was about to share.

He began by reminding us of our visit with him; the day he told us about Diffuse Large B Cell Lymphoma and transformed Follicular Lymphoma. He apologized that the results from the pathology that was done by SCCA had taken so long, but explained that it took a team of pathologists, who specialized in lymphomas, to agree on the findings and sign off on the report.

And then he dropped the bomb.  The pathology was suggestive of small cell Follicular Lymphoma. He said that the pathologists had to do many stains and that Steve's lymphoma cells were not diffused large B cells. Dr. Farah said that the cells were definitely small cells without follicles.  He told us that the size of the cells is important because this indicates that Steve has an indolent, slow growing small cell lymphoma, for which presently there is no cure.

Dr. Farah had contacted Dr. Liao earlier in the day.  The two doctors exchanged findings --Dr. Liao shared the results of the FISH test and Dr. Farah shared the pathology report.  I can imagine there was a lot of head scratching and puzzled looks during this conversation.  You see, the findings of the FISH test along with all of the PET scan, CT scan and bone marrow biopsy and the pathology from SCCA were completely contradictory.  The pathology report was pointing to small cell variety but the lymphoma was the cancer was behaving just like the aggressive, large cell variety.  Dr. Farah explained the 90% of all patients with Follicular Lymphomas have translocation in their cells.  As I mentioned, Steve's FISH test confirmed that his cells had not translocated (or transformed).

Now, I know you must be completely and utterly confused, because this news left us completely deflated, alarmed, and perplexed.  What could all of this mean?  What was Dr. Farah implying?  He was implying that Steve was in a very small population of patients with lymphoma.  Only 10% of all folks diagnosed with Follicular Lymphoma have diffused cells. 

Again, the good news here is that Steve was diagnosed in the early stages.  Dr. Farah said that 80% of folks with Follicular Lymphomas are in Stage 4 when diagnosed.  Because Steve was diagnosed in Stage 1, Dr. Farah said that he has a 60 to 80% cure rate.  Although this is not the 90% we were celebrating, it is still some fairly good odds.  He said that the best treatment would be to do three rounds of R-CHOP chemotherapy followed by radiation to the groin. 

After getting off the phone with Dr. Farah, we called Dr. Liao to get his take on the results.  Although Dr. Liao did not refute the pathology report, he had a more positive outlook on Steve's prognosis.  Dr. Liao believes, based on looking at all of Steve's test results (not just the subjective results of a pathology report) that, in his mind's eye, there is less than a 2% chance that Steve has a true Follicular Lymphoma.  You see, Steve's lymph nodes grew very quickly and presented themselves to be just like a Diffuse Large B Cell Lymphoma. The only difference in his pathology is that his malignant cells are small and not large.  He agreed with Dr. Farah about treatment.  Steve will have three rounds of R-CHOP chemotherapy followed by radiation to his groin region.  Dr. Liao and Dr. Farah both agreed that it would be a good idea to seek a third opinion on the diagnosis.  Dr. Liao plans to send Steve's lymph node tissue off to some of the leading lymphoma pathologists to review.  Dr. Farah suggested getting a third opinion from the National Institute of Health, the worldwide authorities in lymphoma.

After taking time to pray, grieve, cry, and attempt to wrap our brains around all of this complicated mass of information, Steve is now preparing to face his enemy and is getting ready for the fight of his life. Steve has stepped into the ring with both  his gloves and game face on. He is in great shape for this fight.  The fact that he has trained a lifetime, both physically and spiritually, makes him favored to win this match.

The bell signaling the start of round one has rung.  Steve looks up to see his opponent, wearing a black robe with a hood that conceals his face. Who it is behind that shroud is still a mystery.  What we know is that his enemy is aggressive and has shown just how lethal his blows can be.  However, Steve is not facing this enemy alone.  In Steve's corner is a legion of fierce angelic beings, all clothed in white and armed for battle.  Steve is also accompanied by the prayers of a multitude of believers.  They will be partners in this fight, duking it out blow after blow until this mortal enemy is slain and Steve stands, his hands raised, and pointing to heaven, giving God all the glory for the victory.

2 Corinthians 12:9
But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

Psalm 91:11
For he will command his angels concerning you to guard you in all your ways.

Deuteronomy 20:4
For the LORD your God is the one who goes with you to fight for you against your enemies to give you victory.


Prayer requests:

• Steve still has a massive collection of fluid (called a seroma) in his leg.  The doctor does not want to drain it again for risk of infection.  Please pray that the fluid will stop leaking out, it will not become infected, and it will go away on its own.  This could pose a problem with chemotherapy and Dr. Liao is hoping it will be resolved before Steve starts chemo this Friday.
• Steve will have his port installed this Friday, October 13th, at 7:00 am at Good Samaritan Hospital.  Pray for Dr. Kim, his surgeon, and that the port will be installed without any complications.
• Steve's chemotherapy will begin directly after the port is installed Friday morning.  The first round of chemo will take at least 8 hours.  This will be a very long day for Steve, as he will have his surgery followed by the chemo.  Pray for strength and pray that he does not have ill side effects from the chemo.  I will be with Steve the entire day and will try to blog to keep you all updated.

Thank you all for your faith and continued prayers.  We are so incredibly grateful.
All our love, Steve and Michelle

The Good News and the Not So Good News

Our meeting with Dr. Liao, our oncologist, was delayed by a half hour this morning.  We found out the PET scan results were not completed and we needed to wait while a preliminary report was typed up and emailed to his office.   Dr. Liao greeted us and began to share us the results from the scans and testing.

The good news:

• The CT scan, PET scan and the Bone Marrow Biopsy all confirmed one fact -- the Lymphoma had NOT spread to any other part of his body or lymph nodes. 
• Because Steve's Lymphoma was only detected in one lymph node group, his groin, it is still considered to be a STAGE 1 cancer.   (I guess I was wrong about this earlier.) 

This was tremendous news!  It immediately quieted all of our fears that the cancer may have spread through out Steve's body.  We immediately began to thank God for his goodness and knew He was answering all of the countless prayers that were flooding heaven on Steve's behalf.

Then he shared some of the other findings:

• The PET scan revealed irregularities in his Thyroid gland, mostly on the right side. Dr. Liao said he will order an ultrasound but in most cases, this turns out to be benign nodules.
• The PET scan also revealed a thickening of his bowel wall but once again, he said it was not cancer.

There are three possible outcomes that we now face:

Since there is some question as to the type of Lymphoma that Steve has, we are going to wait to have his port installed and begin Chemotherapy until next Friday, October 14th.  We are going to wait until we get a second pathology report from Seattle Cancer Care Alliance and wait until we get the results from the FISH test done.  Once we have that, we can decide whether or not a third opinion may be needed to confirm his prognosis and the best course of treatment.  Dr. Liao said he would even send the specimen off to the very best Lymphoma pathologists in the nation to be sure of the results.

Steve and I want to thank you all for your continued prayers.  He wants you to know that he can actually feel them and he is energized by them.  He also welcomes phone calls or notes.  You can email him at sfox@conradmfg.com.  We will continue to update the blog as we find out more. 

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.