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.