Gathering Strength

Whoa, that was fast.  The lung specialist called us tonight with the results.  It is as we thought because of the enlarged node:  The cancer has spread to the central lymphatic node between the lungs which stages him at at least 3.  We hope that is as far as it has spread.  In two weeks we will know what kind of therapy is best.

His leg is still swollen and it makes walking painful, but true to his name (Roland's dad told me that when he was named his parents were thinking of the legendary Roland who was known for fighting along with Charlemagne to save France from the marauding Brits) he is doing all he can to be cheerful and useful.  He is very grateful for what we can do to help him be comfortable. He expounded at dinner the opportunity we have to grow closer as a family when trials come.  We can become bitter and angry or we can rise up and learn from whatever comes our way. We are not strangers to trials and they have made us stronger.  We hope we are strong enough for this one because of the previous ones.

Sleep? Who Needs it?

What a long day yesterday was. In the morning as we were getting ready at 5 am Roland said that he hopes that 2013 will be a lucky year for us. He really liked it when the lung specialist told him he was in the "young" category so he didn't need to be off Lovenox very long before the procedure and could resume shots the next day.

That afternoon, the oncologist was amazed with how great Roland looked when he came for his appointment  after having a camera down his throat earlier in the day. The "Orc cough" came back but that is normal.   She encouraged him to take it easy and get lots of rest.  She thinks he is working too much.  Finally someone who agrees with me! She confirmed what the lung specialist said: There are no signs of cancer other than in the left lung and Monday we will know if it is in the lymph nodes in the center of his chest and then we will know the stage and can map out a treatment plan. She was very positive and told us that a good attitude in this situation is extremely helpful.  Roland, ever the card, asked if that included a good attitude about dying.  She reminded him that if it was his wife who was going through this, he might not have a great attitude about her dying.  I think he got it. He taught his two hour class right after that appointment.  Hmmmm.

He fell asleep right after dinner, but woke up as the kids were readying for bed.  He told me his left leg felt a little sore and stiff.  Upon examination, I immediately noticed it was a light shade of purple and quite swollen.  He agreed to go to the ER at around 11 pm because it seemed unusual.  Yay!  He was told that his clot was causing the "traffic jam" and was given Lovenox and an ultra sound which indicated the clot had grown and spread.  There was talk of putting in a filter in the morning after seeing his regular doctor and conferring with the oncologist. We finally got back to bed at about 2 am. After getting the kids off to school, I called the doctor and miraculously, we were able to secure an appointment this morning.  Roland went without food or water in case they could do the surgery today.  It was decided that the surgery would be too risky given his propensity to clot so quickly after being off Lovenox.  So we came home, ate breakfast and we are both long overdue for some sleep.  I told him that his sense of humor is not as good when I am tired, hungry and stressed out.  He told me that my sense of humor diminishes in those circumstances and that his is steady.  I think he is right.  I feel very tired, so I can't imagine how worn out Roland must be. Thank you for your love.  We are feeling it.  It is so important for us to stay in tune with what direction to take.

Bad News Good News

I love it when doctors tell us about what is happening and when Roland's knowledge of microscopic cells and tissue because of  his years of experience with illustrating medical histology textbooks comes into play.  The doctor raises an eyebrow and soon they are both using unfamiliar terms like "squamous".

Today we drove to St. George before daylight for the biopsy.  The bad news is that the lymph nodes had grown to over 3 centimeters.  It is very likely the cancer has spread to these nodes. The good news is that he got a good sample of the nodes and the CT scan from yesterday showed a clearing in his right lung so no biopsy was needed from that area.  Though this doctor is a lung specialist he looked at the other areas scanned (brain, abdomen and pelvis) and he thought they looked clear.  Yay! The doctor says his lungs are strong and he will recover quickly.  He is a little grouchy from the pain medicine and coughy from the procedure which came with a complimentary headache..  He hopes his recovery is quick because he has an appointment today with the oncologist and is teaching in the afternoon.  I am happy to be the chauffeur for these activities since he is still a little dizzy.

How Chill Can He Be?

Those of you who know Roland well, know that he has as even a disposition as one can have. Right? And while I have learned to be steadier than I came wired to be through many opportunities to "practice", I still have my fall-apart times. It is fortunate that they have come when Roland is pain free and able to care for his own needs. Doesn't this next scene just say so much about my man. Today I was in his recliner, weeping while he rubbed my feet. I don't know why I cry. It always makes my face puffy and gives me a headache.

He had his scans. While we were waiting and he was drinking the "contrast" like he was by the sea with a tropical refreshment complete with a colorful paper umbrella (this gave me the giggles), I got a call from the doctor who said his bronchoscopy appointment miraculously had been moved up from February 11 to January 30. Much of my crying earlier today was related to the long wait for that important biopsy information.

Some people get claustrophobic and need to take anti-anxiety medicine before getting in the tube-like MRI machine. He must have been very relaxed (see sentence one) because two scans needed to be retaken due to the relaxing of his jaw and the slight head vibrations made while he was SNORING!

Carpe Diem

We are waiting for the pre-authorization on the PET scan. While we are waiting, I found out a few things we can do. Tomorrow Roland will have an MRI on his brain and another CT scan on his chest, abdomen and pelvis. Today we met with a pulmonary specialist in St. George. He noticed things on the CT scan from 1/11 that the other doctors didn't--namely "something" in the lower right lung and enlarged lymph nodes in the center of his lungs. These nodes are normally about 1 cm in diameter, but Roland's scan showed nodes over 2 cm in diameter. *little cry* So he wants to do a bronchoscopy to biopsy both of these findings. All of this is for staging the cancer. The best news would be that cancer is only in the upper lobe of his left lung. (stage 1) If he finds cancer in the lymph nodes or the right lung then… I don’t want to think about that.

So I am back to one day at a time. I think I will focus on the message from Thorton Wilder’s Our Town: Appreciating people in the moment and really looking at them and loving them right now.

It feels Like We Are Stuck in a Swamp

Roland and Alex were talking about tennis tonight. Roland was asking about the latest racket brands and told Alex he used to play tennis every day at the American Club in Indonesia. Alex, looking for a practice partner offered, "Maybe we can play together sometime." Roland paused and then said, "Yeah, as soon as I get over this lung cancer..." We all laughed together.

Earlier tonight I was feeling frustrated because it feels like way too long that we have waited to get the further testing and come up with a plan to get rid of the cancer. He says his legs feel better than ever, but he can feel "something" where the cancer was found when he turns his back in a certain way. I don't like hearing that because it makes me think it is growing.

I was talking about doing something extreme just to see some progress, e.g. move to Salt Lake City or change doctors. Then Roland told me about a scene in the Lincoln movie. Thaddeus Stevens was trying to push for abolishing slavery with dichotomous thinking and Lincoln told him that it was like he was holding a compass pointing to the North and wanting to march North even if the terrain ahead included swamps. I needed to hear that because maybe changing doctors or moving would slow the process even more. I think I just want to do something that feels like it is helping the process move forward. I am hopeful that tomorrow there will be some directions for getting around the swamp. We should have an appointment for a PET scan next week.

It was great to see the Everetts and Skylar and Tori tonight. That was a big pick-us-up.

Working from Home

Roland still gets tired easily, but he is trying to be as productive as he can. Today we rearranged our living room to be an at home office for him. He wanted to be in a central location so he can be with the family as much as possible. He can keep his legs elevated and still access files in the lateral file to his left. The "secretary" desk on his right will store all his supplies. The drop down writing surface can close and lock when he is not using it. His scanner/printer is on the lower shelves to his right and his laptop can stay in his lap when he is using it or stored in the desk. Today he is preparing a quiz for his class.

Yesterday we had a great visit with Paul, Lisa and Christian. We are living in the moment and this moment is great.

Boot Camp

I few years ago Roland and I helped out at a "boot camp" themed youth activity. All the participants were issued dog tags with their names engraved on them. I have had them for over 13 years and today we decided to wear them as a symbol of our beginning of training in fighting cancer. 

We feel strong and happy. Roland has been off pain medicine since Friday at noon. Today the nurse at the hospital let me give one of Roland's injections. I don't like inflicting pain on him, but I try to see it as saving his life instead. I will start doing this for him regularly soon. I feel like the loving thoughts and gestures and prayers of so many dear friends and family are making the path more navigable. It feels like the many strands of a safety net are magically weaving beneath us. Our hearts are full of love and appreciation. This quote comes to mind often: "Everything will be all right in the end... if it's not all right then it's not yet the end." ~Indian Saying

We Are Not Afraid

Before we got the call, we hung a white board near our little breakfast table. I wrote "gratitude" on the top and made markers available. When anyone wants to write something great about the day, they can. It is now almost full of sentiments.

We knew before we talked to the nurse that Roland had lung cancer. We found out it is non-small cell lung cancer (NSCLC) which we learned is more treatable than small cell. We don't know what stage it is or whether it has spread to other places. So there are many more tests that need to be done before we can know which path to hike. Right now we are at the trailhead checking our equipment and packing list and tightening our laces. We don't have a road map yet. Roland feels at peace and ready for whatever is next. He was calmly doing a 1000 piece puzzle in the cancer center waiting room. I feel like my shoes are just never going to be comfortable enough for the hike, but I am going to have to hike in them anyway. I am hopeful that the view will be worth it. I couldn't even sit down in the waiting room. That being said, I am confident that I will be given the strength to take on the mountain before us. I remember a good friend and avid hiker, Scott, once taught me on a particulary difficult and steep hike that every step I take is an opportunity to rest the opposite leg and that if I focus on the leg that is resting instead of the leg that is straining, I will be able to press forward to the top. I made it to the top of that mountain and I will make it to the top of this one.

Adventure Road Map Needed

I am pretty sure that when they can't tell you on the phone, but instead invite you to come to the office to talk about it, it is not peanut butter. We are meeting just before his 1:00 fermata shot for the details and a road map. I think this adventure is going to need a good road map.

Why Isn't the Phone Ringing?

This wait has been making me crazy. I got to thinking that maybe I could take a look at the biopsy--just to hurry things along. Since there was no call this morning, I started calling beginning with the hospital. The lab worker told me she has the results but she is not "trained to read them." It seems like the doctor could write the results in an easy to read way such as "yes" or "no". I could even conduct the training sessions for reading the results. Then I called the doctor's office, but the one who reads results is in a room with a patient. "Don't worry," she says to me "Trish will call you back today." Today? That could be 5:00. Really? Next I tried the Oncology Clinic (We have a tenative appointment) to talk with the very nice nurse there. It feels like we have been great long time friends when I talk with her, but she was with a patient probably being long time friends to that person. When you are waiting for a phone call, the way to make the call come faster is to not be anywhere near the phone. Roland is feeling pretty rested and seeing me pacing prompted him to comfort me by saying in an almost embarrassed way, "I'm pretty sure what they saw in my lung is just a blob of peanut butter I inhaled."

"Good Morning!"

Today has been the best morning since pre-hospitalization. I think we have the medicine troubles worked out. He says the extra pain in his legs and when he yawns and coughs is worth the cheery disposition. He has a habit of sitting cross-legged or at the very least crossing his ankles, but this is not good for circulation, so we have to watch him and remind him. He is back to work today for 4 hours, then when he comes home, we will baby him. He is still short of breath after just walking across the room, but there is improvement. He might even be able to fulfill the jury duty he just received in the mail yesterday. We are hoping for the biopsy results today or tomorrow. It feels like it has been a month. I learned about something called Factor V (five) Leiden Mutation which is inherited. It could explain his clots and I am looking for reasons other than cancer just to ease my mind. We will test for this later.

Trusting

Ro didn't sleep well and is not so happy today. (Those narcotics are not compatible with his normally happy disposition, but they work well for pain.) It is good that he isn't working at all today. I won't dwell on that. Instead I will share that the first night home from the hospital Roland woke up quite medicated. He was very concerned that he was forgetting the names of all the people who drew blood or checked his vitals or refilled his water jug. He started saying the names he could remember, "I need to write all of them Thank You notes." I didn't want him to worry about that, so I told him we could do that later and that those people would want him to put his energies into getting better. It helps if he sees his taking care of himself as helpful to others. It also is effective if I give him a choice as to how I help him with things. Yesterday he worked two hours in the morning (teaching ESL advanced grammar), had his fermata shot and then taught two more hours in the afternoon. WOW! It was NOT my idea. The hardest part for him was walking in 10 degree coldness across campus to the different classrooms. (Instant coughing trigger) The hardest part for me was letting him go and not going with him. Because he only had heavy doses of Ibuprofen during the day, he was cheerful and fun. The Wankiers brought over his favorite game: Scrabble. We moved the recliner over to the table and he made a score sheet, "Alex, Stering, 'Coughy', Starr." He used the microwave glass turntable so the board could rotate (clever guy). I felt like he was in good hands, so I ventured out to the high school to watch the one act play that Reece wrote and directed. It was good to have that mind diversion. I recognize a few ways that I have been prepared for this situation besides generally with the previous trials I have been through. A few months ago, I was prompted to eliminate certain foods from my diet. (My favorite things: wheat, sugar,and dairy products) I didn't know exactly why I felt I needed to do this, but I have felt a closeness to the Spirit as I have exercised self control with what I choose to eat. Yesterday when I was feeling down and a little helpless not knowing what our future path will be I felt comfort in that at least I can have some control with what I eat. It may sound silly or simple, but it has been a blessing to me and a reminder that my Heavenly Father knows me and is aware of our situation. On my fridge are four words that have been there since June 2012: "TRUST no matter what."

The Morning Announcement :)

This morning Roland seemed surprisingly cheerful. He was still growling (less painful than coughing) He wanted to gather everyone for scripture study. When we were all together, he told us he had an announcement to make. He said, *growl-cough* "A miracle happened." I was wide-eyed with amazement since I didn't know what he was going to say. He announced, "Much to my surprise, *growl-cough* last night I suddenly found out something very important." Then he beamed, "I can speak Orc!" He translated a few of his subsequent growl-coughs. Everyone enjoyed that. The children went to church and I am staying with him. When he growl-coughs I try to guess the translation. He is listening to the Book of Mormon in Spanish and Doctrine and Covenants in Japanese. Obviously he is more upbeat when he doesn't take the pain medicine with narcotics. Since he is planning to resume working tomorrow, he wants to see how well he can function with the non-drowsy stuff. The downside is that it doesn't mask the pain as well. This afternoon we will go to the hospital for another round of blood thinning shots. They are making a rainbow on his belly that eventually will look like a fermata with his belly button for the dot. It isn't pleasant, but it is keeping him alive. We are all so grateful for our friends and family who have been loving us throughout this "adventure."

Three Smiles

It is a challenge to help him get comfortable. The "jack knife" seating position gives him the most lung capacity. Bob Goodman invited us to pick up a recliner he doesn't need, so Roland was somewhat social in that when Austin, Tikla, Skylar and Tori visited this weekend. It is excruciating to hiccough, yawn and cough, so he growls a lot instead. If he buries his head into his right shoulder he can endure the pain. I am keeping a chart of doses and times for medicines. It is a pleasure to serve him and he appreciates every little thing. As long as he is on blood thinners (this is two painful shots in the tummy every day), there will be no more new clots and little by little his body will absorb the existing clots. It is music to me to hear him breathing as he sleeps. I feel strong today. I need to remember to take care of me too. My mom left this morning and I miss her, but appreciate that she stayed to help strengthen me while Roland was in the hospital. Today Roland smiled three times and I treasured each of them.

Goodbye Room 107

He is going home! He will be in a lot of pain for at least 2 to 3 months. His right lung is dying, but it will slowly revive over the course of a year. He can expect shortness of breath, but he is encouraged to move about as he is able. I am now his nurse, but I couldn't ask for a better or more patient, patient.

The X-ray Results

The x-ray showed some opacity in the right lung, so he is not clear to go home yet. They are doing a CT scan at 2:30 today because of the changes they saw. Breathing is still difficult, but if he concentrates on relaxing and is in a semi-seated position, he can get almost comfortable. He learned how to give himself injections of Lovenox to thin his blood. It is likely he will be doing this every day for the rest of his life.

Waiting...

Last night he coughed up some blood, but apparently that is to be expected. His left lung which is where the suspect mass is, feels better than the right lung. The doctor says the right lung pain is likely due to the clots. He had another chest x-ray this morning. It was painful to stand and breathe (they asked him to take a deep breath) This experience made him nauseous. Now the good news... If all is well with the x-ray results, he will be able to go home today! He wanted me to start packing his things right away, but I think I will wait until we know for sure. :)

And done.

Roland had a needle biopsy because it was accessible on the left side which is a great blessing. His right calf is still very painful especially while standing. Fortunately he doesn't need to do that much. He sat in the wheel chair with one leg up (half cross-legged) to go to the procedure room and said, "Here goes the next adventure!" The mass is less than one inch in diameter. During the procedure, he wanted to cough, but needed to hold very still. That was difficult. He is struggling with taking deep breaths now. The goal for going home is on Saturday. He is hopeful.

Getting Ready

The biopsy is scheduled for 3:00 this afternoon. He will be taken off Heparin at 11:00 in preparation for that, so if his blood looks good for the procedure, then it's a go. At home the children are really pulling together and are looking for the good in all this. The other day Reece reminded everyone of a feeling on Christmas Roland shared with the family. He felt a fullness in his heart because of the harmony among the children and all who were in our home at Christmastime. Reece encouraged us to "keep that in our home, for Dad." It hasn't been perfect, but we have quickly adjusted when discord has arisen. Roland is resting comfortably and since rest is an important part of the recovery goals, he is not hoping for visitors right now.

Room 107

Tonight Roland was moved out of ICU, yay! He is even "just fine" with a smaller TV. (He doesn't watch it :)) I just remembered something he said when he was watching the monitor during an ultra sound on his heart. "Well, it looks like it's a boy!" The doctors discussed the possibility of putting filters on the clotted veins/arteries, but in the end they decided to put him back on Heparin and then take him off it for a shorter time before the biopsy. This decision will be less painful. He is still taking meds for pain in his legs. He likes making connections with the kind caretakers. A Philippina came into his room to straighten up. He asked her about Manny Pacquiao the boxer and they talked about him, then he thanked her in Tagalog for cleaning up. The doctors are pleasantly surprised that Roland's oxygen levels are so high because usually patients with his condition have a more restrictive lung capacity. They also remarked that his heart is not being forced to work harder to compensate. This is all good news. He has a picture of our family near his bed and he feels peaceful and has no fears. When I asked what I could do for him, he asked me to be with the children as much as I can when they are not in school so that their routines are not interrupted. It is a great blessing that my mom has been visiting us during this time. She has been a great help in keeping things in order. Roland appreciates all her help, but he wants the children to have me with them as much as I can. I really want to be with Roland all the time, but for him, I am staying at home when the children are home.

And in better news...

The doctor came in around dinner time and took Roland off the heparin to thicken his blood enough for the biopsy Thursday. This will make his clots bigger, but we will know whether he has cancer. This mass could just be an infection that looks like cancer. This is what we are hoping for. The results of the biopsy will be available around the 17th. Roland will have a PET scan to look for cancer growing cells on the 15th. They found protein in his blood which sometimes means heart attack, but in Roland's case the doctor thinks is related to the clots. The heart ultrasound shows no signs of heart irregularities or blockage. Furthermore, there is no risk of stroke. Any damage to his lungs happened as a result of the clots and no further damage is expected. By damage, I mean reduced lung capacity. And the best news is that if he is feeling good enough there is no danger if Roland would like to return to work on Monday. He will likely be on blood thinners for long term.

The ICU adventure

Roland went to the hospital on Friday January 5 for some blood tests. They indicated that there was something unusual cardiovascularly and he went to the hospital again on Jan 8 for more blood tests an EKG and an ultra sound on his legs. (He had been in pain for several weeks with what we thought was sever calf cramps) He had just begun a new teaching job at Southern Utah University part time, but no insurance benefits. The EKG was normal, but the ultra sound showed clots in both legs. He was immediately taken to ER. Now they wondered why a young healthy (and I might add handsome) man would have clots in his legs. Well, they wanted another EKG, but I handed the copy of the one he had just had and they had to have a chest x-ray to make sure those clots hadn't gone to his lungs as they are prone to do. We hoped they hadn't but, alas, they had. Now, they wanted a CT scan to see his lungs more clearly. This revealed a mass over 1 centimeter in diameter that looked like cancer. (They need to biopsy this mass to be certain, but the doctors are pretty sure it is cancer). He was put on Heparin (to thin his blood) and then taken to ICU. He is happy and thankful for a lot of things. 1) The clots because that made it so he could know about the cancer. 2) That he is in the right place for care 3) Warm fuzzy socks (His feet tend to be cold) 4) A nice room with a new TV 5) Cheerful and helpful caretakers. I think I am part of that group. 6) Prayerful friends and family We are waiting for the clots to absorb and then they can do the biopsy. He is at peace about this situation. Of course he is. :)