Saturday, December 24, 2011

A Sobering Reality

It was about 2:00 pm on Wednesday afternoon. Steve's voice was solemn and broken on the other end of the phone. "Mom's gone."

"What? What did you just say?"

"My mom died last night in her sleep". He was choking up as he told me the news. I knew he was serious. Apparently she was was having some problems with her heart and sometime in the night she lost her life -- most likely a heart attack.

Like Steve, I was in shock. How could this happen? We had just talked to her recently and she sounded fine. She never told us she was having health issues. True to her nature, she would never complained or indicated that she was having heart complications. Since Steve's diagnosis in September, she was only concerned with his health. She took the news of Steve's cancer really hard. She was having difficulty eating and even appeared to be somewhat depressed. Family members who were closest to her thought that it may have been because of Steve's diagnosis. Her son had cancer and she was thousands of miles away -- unable to be with him to comfort, care for, and spend time with him. It made sense. But perhaps her loss of appetite and mood changes were not all together due to Steve's cancer. I wonder if she was silently suffering with some sort of heart condition but was not wanting to draw attention to herself, so she didn't. Or maybe her rapid and irregular heart rhythms and loss of appetite were direct results of the pain she was suffering because of Steve's condition. I guess we will never know, but I cannot help to think that somehow, someway we could have done more to help keep her alive.

Today is Christmas Eve and we have been spending time shopping and preparing for Christmas celebrations. On Monday our family will be flying out to New Orleans for mom's funeral. Steve had a Neupogen injection on Thursday because his white blood cell count was 3.4. (Normal range is between 5 and 10.). He shouldn't need another injection before his next Chemo unless he develops an infection that would compromise his health. Ordinarily cancer patients are cautioned not to fly on airplanes because of the risk of contracting communicable diseases like colds or the flu. In this case, Dr. Liao wanted Steve to spend time with family and even encouraged us to extend our trip so we didn't have to come back right away. We will be staying until the New Year.

So now we are packing our bags and preparing for our pilgrimage to the South to say goodbye to a wonderful mother and grandma. We hope the airlines will allow Steve preferential seating. He will wear a surgical mask to help protect him from the germ-filled recirculated air. Since Dr. Liao's offices are closed on Monday, Steve's Chemo will be delayed several days. It is now scheduled for Tuesday, January 3rd.

Frances' sudden passing has reinforced the sober reality of life's fragility. Each and every embrace, smile, and kiss has the potential of being the last. I pray my presence will always bring life, hope and love to all those I encounter..for we never know when it will be our time to breathe our last breath.

This Christmas I pray you too will approach the season with a spirit of love, hope, and faith. May you enjoy each day and the blessing of all of the people God has placed in your lives.  Those closest to you:  may you hold them, cherish them, caress them, and never forget to tell them how much you love them.  Life is fragile and must be handled with care.  Merry Christmas everyone!

Sunday, December 18, 2011

The Chemo Cycle

Steve finished his third round of Chemotherapy last Friday. Since he is scheduled for 6 cycles of chemo, we are officially at the halfway point. Like a Wednesday afternoon, it feels good to be on the downside of things, knowing the finish line for phase one of his treatment is in sight. Once the chemo is completed, Steve will enter phase 2 of his treatment and receive two more years of Rituxin. Dr. Liao is debating whether to give Steve the Rituxin one dose every 2 months for two years or two doses every three months for 2 years. There is not a lot of research about the effectiveness of one treatment plan over the other; however, the latest and greatest medical recommendations point toward giving Rituxin every two months for optimum results.

Steve and I did some research into Rituxin. This is an amazing, relatively newer drug that is used to fight non-Hodgkin's Lymphomas, Leukemias, and even Rheumatoid Arthritis. It is called a monoclonal antibody and attacks the protein CD20, which is primarily found on the surface of B cells. Somehow, although scientists aren't exactly sure why, Rituxin is able to go after the bad B cells, target them for destruction, and wipe them out. Since Steve's cancer is in his B Cells, Rituxin is a HUGE part of his treatment.

Although many folks would argue otherwise, Rituxin is not chemotherapy; it is a targeted therapy but is administered through his port.  The Rituxin maintenance therapy should help keep any cancer in his body from advancing. At over $6400 per bag, Rituxin is not a cheap medication. We are fortunate that insurance covers this medication, otherwise we would be putting our house on the market and selling off our 401K plans!

Here is an informative video about Rituxin for those of you interested!

Steve has found a predictable pattern with the Chemo cycle. He basically has about five side effects that vary in intensity from day to day:
1) heartburn, indigestion, and nausea
2) sleeplessness
3) fatigue
4) weakness
5) hiccups

During first week after chemo, Steve experiences the greatest number of side effects.  After about the tenth day post-chemo, he is basically feeling back to his normal self and his strength is renewed.  He then has about a week and a half before the next dose and the cycle repeats itself.  I thought I could best illustrate this cycle using a line graph.  I asked Steve to rate each side effect on a scale from 1-10 with 10 being the worst.  Here's what it looks like:

Steve's 10 Day Chemo Cycle
As you can by the yellow line, his worst days are on days 6 and 7 (Wednesday and Thursday) following Chemo.  After that, the side effects begin to subside and his overall well being begins to improve greatly.  Knowing that the cycle has some level of predictability helps us to plan and schedule our time.  Steve typically gets Neupogen injections to help raise his white blood cell count on day 3, 5, 7 and 9. 

Last Saturday, the day after chemo, Steve had a little accident.  He was unhitching and moving a utility trailer off our our SUV when he slipped on some wet leaves and came crashing, head first, onto the spare tire bolt on tongue of the trailer.  I was upstairs putting on my pajamas when I heard him cry for help in the driveway.  I ran outside only to see him holding is head with his hands and yelling, "I am hurt, I am really hurt!"  He was covered with blood and it was dripping down his face.  It was a good thing he was wearing his stocking cap, because it helped absorb a lot of the blood.  I got him inside, gave him a clean towel, and had him apply pressure to the gaping wound.  After a minute or so, I told him to let me take a look to assess the damage.  One look and it was obvious...we were going to pay a visit to the emergency room.

I think we are almost on a first-name basis with those good folks at Good Samaritan Hospital Emergency in Puyallup.  I remembered our nurse, Todd, and the technician, Angel, from our previous visits.  Steve was even put back in emergency room number one.  Felt like dejevu.  Instead of stitches, they decided to use another procedure.  Angel cleaned Steve up real good and the doctor came in and super-glued his two wounds back together again.  The wound on the top of his head was about two inches long and about a quarter inch deep.  I was surprised that didn't choose to stitch or staple him back together!

Sometimes I think it is really true that we learn best from the school of hard knocks. Steve may have not given a second thought to moving a small utility trailer prior to chemotherapy, but anything that puts him at risk for injury or sickness should be avoided.  Hindsight is also twenty-twenty.  If I had known he was going to try to move the trailer himself, I would have gladly helped him.  I think he needs to reconsider what he does and does not do in order to preserve himself for these next few months.  Hopefully he will be more cautious.

With Christmas only a week away, we find ourselves approaching the holidays with a whole new perspective.  We look forward to time spent with friends and family, being together and enjoying each others' company.  We are filled with joy and hope; trusting and believing in our Savior to bring complete healing to Steve and grant him a long and healthy life. 

Steve and I wish you all a very merry Christmas and a new year filled with the same hope and joy that we profess.  May you find and experience love and the true meaning of Christmas this holiday season.  We are so thankful for our friends and family who continue to stand with us daily.

Please continue to pray for:
  • The Chemotherapy to completely kill every cancerous cell in Steve's body without damaging or compromising his health.
  • Protection from all sickness, disease, injury or trauma.
  • Strength for each day.

Monday, November 28, 2011

After Round 2 -- Rising to His Feet Again

Today marks ten days post chemo-therapy for Steve. He has experienced a relatively good recovery after the second dose of chemo last Friday. He has found out that the worst days for him, when the side-effects are the most difficult, are on days 5 and 6 post chemo. For some reason, it is on those two days he feels the weakest.

Yesterday was day 9 post chemo and Steve began to feel as if his energy level was beginning to increase once again. He tells me that on his lowest days he feels as if he just wants to lay around and feels as if he could sleep all day. Although he may feel that way, Steve has done anything but that. Except for taking the day of chemo off of work, he has worked every day since then. Having the chemo on Fridays seems to work well for Steve. He takes the Friday off for the chemo, then gets his fluids and hydration the following Sunday. He also begins to receive the Neupogen injections to help raise his white blood cell count.

Steve's white blood cell count was 3.3 on the day he received his chemotherapy. He received two Neupogen injections following the chemo; one on Sunday and another on Tuesday. He got a CVC on Wednesday and it was noted that his white blood count rose to 18.3. That level was way beyond the normal range of 4.5-10. The nurse that saw Steve on Wednesday decided that Steve should receive another dose of Neupogen on Thursday (Thanksgiving) as planned. She felt that the level may have been high simply because he received a Neupogen shot the day prior. She said it wouldn't hurt him to get another shot.

As Steve's medical advocate and deeply devoted wife, I have to question decisions that could affect Steve's health. There have been many occasions where my advocacy and questioning have changed the course of Steve's treatment or brought things to the surface that may have been overlooked, had I kept silent. The decision to give Steve an additional Neupogen injection when his white blood cell count was outside of normal range, even outside of an elevated range (13-14) just didn't sit well with me. So I took matters into my own hands and texted Dr. Liao on Wednesday evening. I really didn't want to disturb him on the eve of Thanksgiving, but I just couldn't see Steve's count continue to rise beyond where it was.

I was so thankful when I saw Dr. Liao return my text message within a couple minutes of me sending mine. I gave him the background, told him Steve's levels, and asked for his advice. His reply confirmed my suspicions. He advised us to hold off on Thursday's Neupogen dose and come in on Saturday to receive another lower dose to help maintain his levels. I really didn't want to step on the toes of the Nurse Practitioner, but I needed to be sure that Dr. Liao would have advised us as she did. In the end, I am glad I took the initiative to contact our doctor.

Neupogen is a fascinating drug. It is made using the bacteria e-Coli. Just thinking of that makes you a little cautious. Too much of it can be fatal, causing the spleen to rupture or giving one acute respiratory distress syndrome (ARDS). Too little of it can lower one's white blood cell count making the patient more susceptible to infection and illness, which also can lead to hospitalization and even death. Even the drug manufacturer said that it is important to discontinue use when one's blood count is outside of the therapeutic range.

Today Steve got his counts taken again and he was within a normal range -- 6.3. He is scheduled for another injection on Wednesday just to be sure his counts do not slip below 4. We are finding that managing his white blood cell count is a big part of his recovery.

We had a lot of family at our house over Thanksgiving. Everyone pitched in to help us cook, clean, and tend to the house. We were so grateful for the expressions of love that were evident everywhere we looked. It can be difficult to lower your pride, humble yourself and allow folks to help you in your hour of need, but I must say, it is such a welcome relief! In addition to all of the practical support from my family this weekend, we have been continuing to receive ongoing support from people at my workplace, our family, and friends. Meals, gifts, and random acts of kindness continue to bless us each and everyday. It would be so easy to say we are doing fine and don't need anything, but that is not the truth. Each act of kindness and generosity are received with humility, gratefulness, and love. As difficult as it is to admit we are in need; we will not turn away the many blessings that come from people who love us and are standing with us in this battle. We are so grateful for every act of love offered to Steve and I during this time: each prayer offered, word of encouragement spoken, every card or email sent, every meal made, the flowers and gifts. Each and every act of kindness means more to us than you would ever imagine. Thank you, thank you, thank you!

Steve's next round of chemo is scheduled for next Friday, December 9th. Please continue to pray for his strength to continue to increase, his blood counts to be in a normal range, and his cancer to be fully cured!

1 Timothy 1:17 Now to the King eternal, immortal, invisible, the only God, be honor and glory for ever and ever. Amen!

Friday, November 18, 2011

Two Years to Life

As I sit here in Dr. Liao’s office, I am reminded of some of the hikes I have been on in the past.  I am sure you can relate.  You find a good hike in the trail guide, it says it is “moderate” but when you set out on the trail you find it to be a whole different story.  After several miles of a nice, gentle incline you suddenly find yourself climbing up a steep grade, huffing and short of breath.  Who wrote that trail description?  This was obviously not what you had anticipated!  Today we definitely hit one of those steep inclines we had not anticipated!

Following a difficult initial week post-chemotherapy, Steve began to experience a renewed sense of energy and health.  With each passing day he felt better, stronger, and more “normal.”    We were so grateful for a bit of a reprieve from the tumultuous roller coaster ride we had first experienced.  This morning he lifted weights, pumped off 50 push-ups, and crunched 50 sit-ups in no time at all.  He is even getting on the elliptical machine.  His leg is getting stronger and has shown great promise after his surgery and hospitalization.  He amazes me with his will power and determination to get back on track.

It’s been three hours since we arrived at Partner Oncology this morning for Steve’s second round of chemotherapy.  Upon our arrival, we had an unexpected visit by Dr. Liao.  He had received the results of the third tumor pathology that was done by the National Institute of Health (N.I.H) in Bethesda, Maryland.  The N.I.H. is the world authority on lymphoma cancer.  This is the final word and we would need no further testing to determine the final diagnosis. The N.I.H. pathology report confirmed the results from the Seattle Cancer Care Alliance's report. 

Steve truly does have a rare form of low grade Follicular Lymphoma. It is low grade but not slow growing.  It is diffuse and not follicular.  It is small cell and not large cell.  So what does this mean?  Not much in terms of the phase 1 of his treatment.  He would still receive six cycles of Chemo, but unfortunately it’s not going to stop there.  If he had the faster growing intermediate grade large B cell Lymphoma, like originally thought and suspected, he would probably be completely cured after the chemotherapy.  But the low grade Follicular Lymphomas tend to recur.  Dr. Liao explained that after Steve receives the six cycles of chemotherapy, he will have to continue to receive the targeted therapy, Rituxan, every 3 months for two years.  Then he will be observed and tested every six months for the next twenty years or so.  With Follicular Lymphoma, they will have to keep a close eye on him because of the high rate of recurrence.  On the bright side of things, even though Steve has been diagnosed with Follicular Lymphoma, he still does have a chance 30-40% chance of being cured after treatment.  It may not be the 80-90% we were hoping for, but it gives us hope because there is a chance.  We will continue to pray and believe in God for a complete and total healing.

Now I must be honest, this news did not sit well with Steve and he is still recovering from the blow.  We both were hopeful that we could move on with our lives after the chemotherapy, but now we have to accept a new reality.  Things will be different for us for this point on. There will be more doctors’ appointments, more tests and more treatment.  We will need to be watchful, vigilant and be sure to do everything to promote a healthy lifestyle.  Ever since Steve’s initial cancer diagnosis we have found that our love for one another has grown to new levels. This new twist to his diagnosis will cause us to be even more purposeful in how we chose to live our lives.  I know it sounds crazy, but I now see how cancer really can be one of the biggest blessings of all.  It rocks your world and helps you to live and love with more passion and purpose.  Yes, I too am disappointed by this news, but it is not the end of the world, it is the beginning of a new way of loving and living. 

We have suddenly found ourselves facing the reality of a longer and more difficult road to recovery.  The trail ahead is steeper and longer than hoped, so we will have to adjust our pace and make sure we have all the provisions needed for the journey ahead. 

It is now four and a half hours into Steve’s chemotherapy and he is sleeping soundly in his comfortable black leather recliner.  His white blood count this morning was down to 3.3 but Dr. Liao felt he was healthy enough to go through with the chemo anyway.  Steve will get fluids and another Nupogen shot on Sunday, followed by several more injections next week. 

Please pray that Steve will be protected from any virus or bacteria that could compromise his health.  Pray that he will suffer no ill side-effects from the Chemotherapy and that he will recover quickly from this second cycle of meds. 

I will update the blog if anything changes.  Please know that “no news is good news!”  Do not hesitate to call or text Steve anytime.  He loves to receive all of the encouraging notes and messages! 
I shaved Steve's head this morning before Chemo.
His hair was coming out in clumps and he just wanted it gone!

Saturday, November 5, 2011

Ending the Week on a More Positive Note

Thursday Steve hit an all-time low, struggling with the swelling, leakage and fluid draining in his leg; feeling the effects of five days without much sleep; chest pain and flu-like symptoms from the Neupogen injections; sharp burning pains in his stomach; and a general loss of stamina and energy.  In this fragile condition he was also at an all-time emotional low. He was somehow able to make it through the work week, but each day was a real struggle and challenged his already compromised health.  The report from Dr. Liao about his dangerously low white blood cell count on Wednesday escalated our concerns about Steve's vulnerability to infection and illness.  How could we protect him from an unseen enemy that could unknowingly strike a low blow, landing him in the hospital someday from a simple cold or virus?  I hated the idea that he felt compelled to go into work in his weakened condition.  Each time I suggested that he stay home to rest, he would become upset and said that he couldn't add an additional financial stress on top of all he was already facing.  He has no sick leave, no vacation, and no opportunities for shared leave.  It just didn't seem right.  I would make it my new mission to find a way to replace his income so he would be free to take a leave of absence to fight the cancer. 

We both headed off to work again on Thursday.  At about eleven o'clock I received a call at work from Steve.  He was at the Emergency Room at Good Samaritan Hospital.  I was shocked to hear of this and asked him why he was there.  He said he wanted to get a new bulb for the drain in his leg.  The old bulb was not working properly and coming open all the time.  Steve thought he could drop by the hospital and simply get a new one.  He thought he would be back to work in an hour. 

Well, that quick trip to the hospital turned out to be a real fiasco.  With a simple request for a new bulb, he found himself in an emergency room with hospital staff questioning him about his health history and  recent surgeries.  I too was struggling emotionally and just hearing that he was alone in the hospital made me instantly want to drop everything I was doing to be with him, so I did. 

Hey, this place looks pretty familiar! 
Steve spent four hours in the ER waiting for a doctor to come in, clear the tubing and replace the bulb.  I drove into his work to grab his medication, computer and work files; I was not going to let him go back to work.  He desperately needed sleep, so I basically forced him to go home and rest before our appointment with Dr. Liao for another Neupogen injection.

Yesterday Steve saw Dr. Kim for his JP Drain.  Even with the new bulb, Steve's leg was not producing hardly any new fluid in the bulb.  Steve feared that it was still clogged, but the swelling was gone.  Dr. Kim thought it was time to get the drain out.  If it would fill with lymph fluid again, he would drain it as needed.  With one tug on the tubing, it came out with ease.  There is a small hole left that should close over time.  The wound looks like a small cigarette burn.  Steve was relieved to have that out of his leg and we were happy to close that chapter of his story.

After seeing Dr. Kim, we headed across the hall to Dr. Liao's office to get a check up.  The nurse drew blood out of his port and sent it off to be tested.  Dr. Liao was out of the office and Steve was seen by a different oncologist.  Realizing we had not heard the results of the thyroid biopsy, I called to get the report, which was faxed over right away.

The results were in and we had some good news!  Although one of the nodules in Steve's thyroid was not diagnostic, the other was.  The report said that it was benign and he was at a very low risk for cancer.  What a relief!  They would still keep a close eye on his thyroid, and Steve will need another ultrasound in three months. 

As we talked to the doctor, the results from the blood work came in.  More good news!  Steve's white blood count was up from 1.2 to 3.8.  It was just below normal!  Knowing how much Steve hated the injections, the new doctor was leaning toward letting Steve go without getting one, but I had a little problem with that.  If the normal range was between 5-10, wouldn't it be best if he had just one more shot to get him into the clear?  I knew that if Dr. Liao were here, he would suggest another injection.  So I objected and provided my rationale for giving Steve another injection.  The doctor agreed that another shot would not hurt, but would be helpful.  He ordered the shot and told Steve we would check his levels again on Monday.  He saw no reason why Steve wouldn't be able to get his second dose of Chemotherapy in two weeks. 

We have weathered a difficult week and Steve is back on the mend.  God's grace and mercy have seen us through.  We are praying that the next two weeks will pass without any new challenges and Steve will be strong for Chemo on November 18th. 

Team Fox -- Please continue to pray that: 
  • The lymph fluid will not collect any longer in his leg and that it will no longer be a threat.
  • That Steve's white blood count would stay in a normal range.
  • The Steve's strength will return and Steve will be strong for round 2 of Chemo on the 18th.
  • That we will be able to find financial support for Steve so he can to take a leave from work when needed and help pay for the rising medical bills.
  • That the chemo would do it's job to kill the cancer completely.

Wednesday, November 2, 2011

Pills, Pokes, and Side Effects

On Sunday, two days after Chemo, Steve found out that he had to take a shot called Leukine several times a week to help create new bone marrow and new white blood cells.  We didn't realize the side effects from taking the Leukine would be worse than the side effects from the Chemo alone.  It only took 35 minutes after the first Leukine injection before Steve was hunched over in a fetal position on the ground, writhing in pain from a tight chest, pounding heart, throbbing head and intense flu-like symptoms.  This medication, meant to help him, was reducing him to a feeble, weakened man, crying out for relief for over two hours straight. Seeing my husband like this is almost unbearable.  I was helpless to help him.  Nothing I could do would alleviate his pain or discomfort.  Dr. Liao told me that the side effects should get better with each injection, but when he got his second dose on Tuesday Steve experienced the same side effects again, struggling hard to weather the two hour storm until the symptoms subsided and he could get his bearings again.  He was fearful of more injections, not knowing how long he could endure this torture.

Steve has been unable to get a good night's sleep for the past three days.  It is hard to know whether the symptoms he is experiencing are a result of the Chemo, the injections, or a side effect of a medication he is taking to help ease the Chemo side effects.  Presently he is taking 4 different oral medications on a regular basis:  two medications for nausea (Ondansetron/Zopran and Prochlorperazine/Compazine), one medication for anxiety (Lorazepam/Adavan), and a newly prescribed sleep medication (Ambien). 

We saw Dr. Liao this afternoon to get his third injection of Leukine but were relieved to find out the Dr. Liao wanted to switch Steve to a different medication to build up his white blood cell count.  Steve was given a new drug today called Neupogen.  We waited in Dr. Liao's office to see if the side effects would be as troublesome as the Leukine and were grateful to find that the new drug was much more tolerable.  When I asked Steve to rate the discomfort on a scale of 1-10, he said that the Neupogen was a 3 whereas the Leukine was an 8.  He still experiences an increased heart rate, flu like symptoms and his head still pounds, but at least it is bearable.

Dr. Liao got the results of Steve's white blood cell count back and was very concerned.  He told us a normal count would be between 4-10, well today Steve was a 1.2.  Dr. Liao said this was dangerously low.  He said Steve would have to go back on antibiotics (Cephalexin) because Steve is obviously fighting something, it just might be beneath the surface and we cannot see it fully yet.  Steve was not happy to hear he would have to add 4 more pills to his daily regime, but at this point, he has no choice.  If this is an infection he is fighting and if the infection starts to grow, he would not have enough white blood cells to fight it and it would be "very bad."  Dr. Liao told us in a very somber voice, "This is serious." 

In addition to that, two days ago we noticed that Steve's leg was becoming red again in the skin around the incision and drain.  After receiving the bag of I.V. fluids on Sunday, Steve's leg began to swell again, measuring a full 3 centimeters bigger above his knee in his right leg than his left.  It appeared we had gone backwards again in the healing process.  Did the Chemotherapy compromise his healing?  Did the I.V. fluids flood his leg with more than the drain could hold?  Steve's surgeon, Dr. Kim, saw Steve yesterday and discovered that the JP drain tubing was plugged and he helped to clear out the jam.  This could have led to more swelling and have contributed to the increase in lymph fluid.  Presently Steve is up to about 40-50 milliliters/day of fluid compared to under 10 milliliters before the Chemo.  We have another appointment with Dr. Kim on Friday, but Dr. Liao does not want him to remove the drain just yet.  Doing that may mean that Steve's leg would continue to swell and we would be right back square one again.  Infection would delay chemotherapy again and that would not be good.  Steve's treatment is dependent on him being healthy and free from infection.

We already feel emotionally weakened and exhausted from our month long ordeal.  We have many more months ahead.  Please pray for Steve's white cell count to come back up, for any infection that might be present in his body to be gone, pray that Steve is protected from any illness or disease, and that he is able to get some sleep so he is strong. 

Outside my window it is dark and I can hear the rain pound against the glass window panes -- a good metaphor for our present situation.  I am reminded of Lamentations 3:22-23:  "Because of the Lord’s great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness."  God has been with us each step of the way.  He never fails us and he holds us tight, reminding us of his unending love and promises.  One day, the rain will stop and the dark clouds will pass. Until then, we trust in our Creator and Savior for strength, health, and life. He is our Source and we trust in him alone.

Saturday, October 29, 2011

The Bell Rings and Round One Commences

The week has been filled with more doctor visits, procedures, and a whole lot of anticipation. Steve and I went to see Dr. Liao because he discovered two more masses on his body -- one lump was found on the top of his right foot and the other one in his groin. The one on the top of his foot was about the size of a marble. We had never seen it before, and when someone has lymphoma and a new lump appears, one immediately thinks the cancer has spread.

The pen is pointing to the new growth in his foot.

The growth in his groin was more like the size of a golf ball. This was was more suspicious, as it was in the area where cancer was found.

Dr. Liao examined Steve on Monday and said that he did not think the mass on his foot was cancerous. He thought it was more likely to be a bursa. He did admit that lymph nodes are found in the foot, but he said that it did not have the characteristics of lymphoma. He wasn't too worried about it. Steve and I couldn't help wonder though. This lump just came out of nowhere, similar to the ones he found in his groin.

Although, Dr. Liao was concerned about the one in his groin. That one was not there after surgery and had grown recently, just in a few days' time. He said he thought it was lymphoma and wanted to order another CT scan to get a new baseline. The cancer could have spread in the past three weeks since diagnosis. Another scan would tell us where it spread and how large any new tumors were.

The CT Scan was scheduled for Wednesday. Steve had to gag down another two bottles of that terrible berry flavored Barium solution. He hates that stuff! I guess there is no other way to do the CT scan. He just has to chug it down and deal with it!

Following the CT scan, we had the Thyroid biopsy scheduled for Thursday. He was quite nervous for this procedure, as his throat has always been a sensitive part of his body.

Here's Steve getting ready for the biopsy.

My mom had a thyroid biopsy a few years ago and assured Steve it would be fine. I think that Steve had a different outcome because of the location of the nodules discovered in Steve's thyroid. His two nodules were right smack dab in the center of his throat, directly in front of his voice box. If you tilt your head back and feel your throat, you will notice that there is not much in front of your throat -- just skin. Needles going into this part of the thyroid do not have much to sink into!

Here is Dr. Kimmel doing an ultrasound to find the nodules prior to the biopsy.
Dr. Kimmel tried to numb Steve's throat, but the needles would not penetrate the skin. I saw Steve wince, squirm a bit and clench his hands together, his knuckles white from the tension. This obviously was a painful procedure. I tried to hold his hand, but he just pushed me away, trying hard not to speak a word and deal with the pain of the procedure in his own way. After a second attempt, the doctor was able to get a bit of pain medication in his throat, but did say that it may not help too much simply because of the location of the nodules.

They allowed me to watch the entire procedure. Under the guidance of ultrasound, the doctor inserted about six different needles into Steve's throat, each time Steve responded in obvious pain. He was not enjoying this experience at all! The doctor would pull back on the syringe, extracting a few cells from his throat. The nurse then squirted the samples onto slides and fixed them with a spray mist, preparing them for pathology. Dr. Kimmel said that he thought he got some good samples, but wouldn't be surprised if they were not diagnostic in nature. This was a tough place to do a needle biopsy and he may have only been able to get thyroid tissue instead of tissue from the nodules. After placing a band aid over Steve's throat, we were sent on our way. The results should be ready in about a week.

Finally Friday arrived! The day we were eagerly awaiting; Steve would receive his first dose of Chemotherapy. After showing up in Dr. Liao's office with our laptops, lunch, books and magazines, and other items to amuse us, the receptionist led us back to an exam room where we met the doctor and Steve had his vitals taken. A medical assistant helped with this process and then told Steve she would need to take a blood sample from him. This would be customary practice with each Chemo cycle. She said she would just need to access his port to draw the blood.

Now that would be a simple statement from a nurse, but Steve objected immediately and said that his port was a virgin and had never been "deflowered." In a half joking manner, he told her to be "gentle."

She sprayed his skin with a freezing solution and told him to tell her when to stop. Steve let her spray a little too long and suffered a bit from burning, stinging skin. He would learn to stop her sooner next time! She instructed Steve to breathe in, which he did, and then breathe out. She inserted the needle into his port, but Steve had held his breath, not releasing it when he was supposed to. This did not help the process, as he did feel the stick of the needle more this way. Next time he would remember to breathe!

After drawing blood, Dr. Liao came in and told us the good news. The CT Scan results were back and the lump in Steve's groin did not appear to be his lymph nodes. It was probably a hematoma or another seroma. This meant that the cancer had not spread! What a relief! He is still in Stage 1. We asked if the 3rd pathology report was back from the National Institute of Health in Maryland and he said that it was not. It would take quite a while to get those results back as they analyze samples all over the whole world.

He did tell us some other news that we had not heard before. After the Chemotherapy Steve would have to come back to receive I.V. fluids to fight against dehydration. He would also have to get injections to help raise his white blood cell count. These injections would be given subcutaneously in his stomach or back. If you have not figured this out already, Steve hates needles and shots. This news was not received too well, as Steve cringes with the thought of more pokes and medications. He would now have to go in and receive these injections every 2-3 days.

After our debrief with Dr. Liao, Steve was brought back to the Chemo room where he selected a corner leather recliner and set up "shop." He set up his laptop and day timer, made himself comfortable and waited for Shara, our nurse, to administer the pre-meds.

Steve, determined to get some work done, set up "shop" for the day.
The first bag of meds would include Benedryl, to block the histamines; Lorazapam, an anti-anxiety medication; and Zopran, an anti-nausea medication. After those meds were administered, she hooked him up to his first bag of chemo in the R-CHOP cocktail called "Rituxan." Rituxan is different from regular Chemotherapy because it is considered "targeted therapy." It specifically targets and goes after the lymphoma cells; it is an important one in our Chemo regime.

Drugs used in Steve's R-CHOP cocktail:
R - Rituximab - (Steve got brand name Rituxan)
C - Cyclophosphamide (Steve got brand name Cytoxan)
H - Doxorubicin Hydrochloride -- (Steve got brand name Adriamycin)
O - Vincristine Sulfate (Oncovin) - (Steve got brand name Vincasar)
P - = Prednisone (Steve takes this in pill form - 100 mg once a day)

Steve did fine at first and Shara increased the titration rate. It wasn't too long after that when I noticed that Steve's nose was as red as Rudolph's. His ears were also red and looking through his thinning hair, I could see his scalp was red too. When I mentioned this to Steve, he looked on the tops of his thighs and noticed that he was developing hives. He was having an allergic reaction to the Rituxan. Shara shut off the Rituxan, started him on another histamine blocker, and continued to give him Adriamycin, another one of the Chemo drugs.

Steve had no trouble with the Adriamycin, so Shara started him back on the Rituxan. Steve was able to finish the whole bag with no further reactions. With two drugs down, he only had two more to go. When I asked him how it felt, having these toxic drugs go into his body, he said that he could feel it circulate and his port would burn intermittently. He was not enjoying the procedure, but it was tolerable.

Steve: "This is all a bunch of B.S.!"
Michelle: "This B.S. just happens to be saving your life honey,
so stop complaining and take your medicine like a champ!"

Dr.Kim came over from his clinic across the hall to recheck Steve's drain. (How is that for 'house calls?") I brought in the most recent collection of lymph fluid to show him. Three days ago Steve collected 45 milliliters in one day, the next day it was down to 20 milliliters, and that day it was down to under 10 milliliters -- this is the amount we were hoping for! The lymph was finding another path in his body and the drain was working to close up the pocket that had formed from the seroma. Dr. Kim said his drain looked good and that if the amount of lymph fluid remained under 10 milliliters/day, he would take out the drain on Tuesday! He was satisfied with the way Steve was healing and glad to see that Steve was not developing Lymphema! We were too! We know that this is a testimony of God's healing and the fact that we have hundreds, if not thousands, of people praying on Steve's behalf specifically for this! Praise the Lord: the lymph has found a new path!

Here is a more recent picture of Steve's leg with the drain. As you can see, all of the swelling is gone. The lymph is that yellowish fluid in the bulb on the lower left of the picture.

The last two bags of chemo went in without a hitch. It wasn't too long before we were getting our meds from the convenient pharmacy in Dr. Liao's office and were being sent home just shortly after 4 pm. Steve went home with two different anti-nausea medications and his Prednisone.

Feeling generally well but with a bit of melancholy fogginess lingering in his brain, Steve requested that we go to the mall and try to "walk off the chemo drugs." He heard from another cancer survivor that walking helps to get the Chemo in and out of the system faster, so he took the advice and we walked the mall since it was raining outside.

I gave Steve his Prednisone at about 7 pm, not realizing that it is best taken once a day in the morning. He did have some trouble sleeping, but we moved his does to the morning so that it would have a chance to wear off some during the day and he may sleep better tonight. Dr. Liao called in some sleeping medication, so if he does have trouble sleeping from the Prednisone, the pills should help with that.

The treatment we are receiving from Dr. Liao's office is absolutely phenomenal. We feel we are in expert hands receiving the best possible, personalized care. God has been so good to care for us and has led us every step of this journey. We rejoice in His care and His goodness as he carries us through this difficult time. We trust Him completely to protect Steve and heal him from this terrible disease.

Steve was declared the winner in this first round of Chemo! So far he is strong, full of energy and ready for the next round. So one down, five to go! The next round will be in about three more weeks.

Thank you all for your prayers! They have been effective -- God is listening and answering each one! We rejoice that Steve's cancer has not spread, that the lymph has found a new path in his body, and that he is being healed completely of his cancer! God is good and his grace is sufficient for us each day!

Friday, October 21, 2011

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.

Monday, October 17, 2011

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.


Friday, October 14, 2011

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 or call him if you have his number.

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

Thursday, October 13, 2011

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! 

Saturday, October 8, 2011

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

Tuesday, October 4, 2011

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  We will continue to update the blog as we find out more. 

Friday, September 30, 2011

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!