Saturday, January 31, 2009

Day Twelve

Yesterday, around 4 pm, Rob had his chest tubes removed. It was pretty cool to watch. He wasn't very interested in watching or even hearing his nurse's running commentary. I took some pictures, but decided not to post them. I KNOW that Rob wouldn't appreciate me posting him looking like he was in pain.

The plan was to start with oral meds at 6 am (today) and put a cap on his epidural (not remove it until the pain was under control). After that, he would go home after several hours of being on oral medicine to control his pain.

His pain scale today started out at a three (with epidural) and is currently at a 6.5. Dr. Collins came in earlier and said that since his pain is not being controlled, he would see him tomorrow. So much for going home today. He is disgustingly cheerful, for someone in that much pain. Seriously.

They have just increased his meds again - he has been in pain for the majority of the day. Apparently, Percocet just isn't a good enough drug for Rob.

The chest tube site seems to be healing nicely. Glad to see that his body is cooperating.

Thank you Steven for sitting with Rob all day (I had Arbonne business to attend to - I needed a little bit of normalcy for the day). I am sure that it was exhausting watching your son writhe in pain.

Friday, January 30, 2009

Day Eleven

Last time Rob had the surgery, he went home on Day Ten. Hopefully, he will be coming home tomorrow.

Yesterday, his chest tube was clamped shut to see how he would do with no suction or drainage. There was no pain associated with shutting it off this time (YAY!). They took an x-ray to see how his pneumothorax was healing. He did really well until later in the day - it was hard for him to cough; he felt as though he couldn't catch his breath. They unclamped his chest tube and he felt better.

Dr. Adams came in this morning and re-clamped it and told him that he would receive an x-ray in about four to five hours to see the progress. His doctors would really like to send him home without his chest tubes, so for now, we just wait.

Thursday, January 29, 2009

Day Ten

Before I begin, I have had a request to post the name of Rob's cancer. The name is Adenocarcinoma. His stage is IB (so much better than stage IV or terminal!!!).

Good Morning! This is such a fun roller coaster! Up and down, up and down! Today, my emotions are up. Rob is in little pain and his nausea is close to nothing. YAY!!!

This morning, I stopped in to see Rob before I came into work. Dr. Danielle Adams (the surgical resident) said that Rob is looking well. Every time his doctors see him, they ask him to couch. They look at his chest tube container and watch for the bubbles to form during the cough. The more bubbles, the greater the leak; fewer is better.

This is the chest tube container.


Another view.

There are a few things that are going to happen today: they are going to unhook the vacuum again this morning and later today, Rob will receive an x-ray to see how his pneumothorax is healing.

If it is getting better, then they will remove the chest tubes out tomorrow and he will go home Saturday after making sure the dosage of his oral meds is correct.

If it does not get better, then they will send him home with a cute little portable drainage thingy that we will need to empty three times a day. If he does go home with that, then we will go to see Dr. Collins (surgeon) about a week later. I was worried that we would have to go to Collins' office everyday, so that is a relief.


This is the cute little drainage thingy...

We will not know anything until later this evening. I will update as soon as I know anything!

Wednesday, January 28, 2009

Day Nine

Chest tubes are still attached to Rob's personage. Vacuum is still sucking. He is still draining. Once that stops happening, he may be able to have some MacGyver'd contraption to allow him to go home until they remove them.

His pneumothorax is still there (that's why they hooked him back up to the vacuum). It takes some time for those to heal.

We are unclear as to how going home will work, since we were told earlier that as long as he has his chest tubes, he will have an epidural to control the pain.

Rob is in great spirits. He seems as happy as a clam (who wouldn't with the amount of drugs - what pain? hehehe). He is ready to get out of here and go home to be with his family. (We would love him to be at home with us, as well.)

The kids came with Elaine after school today to visit Rob. Tarali and the kids raided the 'nutrution room' and found some ice cream. They came back to the room and ate their 'plunder' with their Dad.

Tuesday, January 27, 2009

Day Eight

Well, I guess we were too excited for the vacuum to be gone. Rob had to be hooked back up to the vacuum pump for his chest tubes. It turns out that his pneumothorax was getting worse. (At least he can fall asleep to the relaxing sounds of water bubbling. - That is the sound the vacuum pump makes.)

Rob has spent his day sitting in the chair in his room, enjoying a different perpective. He has an amazing view of the Wasatch Mountains (and Costco's parking lot). He is in good spirits and has a little pain (good thing for drugs, right?). He still has his nausea, however, the drugs for that aren't working too well.

Monday, January 26, 2009

Day Seven

I had to work all day (actually all week) so Steven, Elaine, and Tarali took turns to check in on Rob. He had a good day. Apart from some nausea that started last night Rob had a great day. (Someone was smoking cigarettes in the hall way close to Rob's room - all the nurses were racing everywhere to catch the culprit to no avail.)

I picked up my kids and sister from the airport tonight at six and we went straight to the hospital to see Rob. He looked good - even the kids thought that he looked much better than he did on Friday before they left town.

He still has his chest tubes in, but is no longer hooked up to a vacuum (wow, that sounds pretty gross). He will have an x-ray tomorrow to determine what will happen next.

The end is in sight (the end of the hospital stint, that is).

Sunday, January 25, 2009

Day Six

After I signed off yesterday, Rob's pain level shot up rather quickly. His pain level early in the day was a pleasant 1.5. Around 5 pm, it rose to a five. Then, his nurse came in and changed out the container that holds the waste from his chest tube. When she was moving the tubes around (not the ones that are inserted into his body), he just about jumped off the bed in pain. His pain level increased to an eight in a matter of seconds.

Rob and I are convinced that his body went into some sort of shock-mode. He was pale, cold to the touch, and very wet. He couldn't even speak. It was a little upsetting to see him move from one extreme to another so quickly.

Needless to say, today has been a much better day with his pain level at a three.

Our kids are enjoying themselves in the Arizona heat. (It is 70 degrees - makes me want to be there, too. You KNOW how much I like being cold.)

I am exhausted (do you see a trend forming?). I am being force-fed and made to take naps. I feel like a three year-old. Nice, huh? Just when I thought that I was an adult.

Saturday, January 24, 2009

Treadmill

The pain scale for the day has been at 1.5. He hasn't even had to push the button that gives him an extra shot of drugs to boost his epidural since last night. Can you believe it? Rob has felt so good. His pupils are not the size of pin pricks anymore.

He has walked laps around the floor and on the treadmill. He is feeling great. I am exhausted. I am ready for bed.

'Night.

Friday, January 23, 2009

Temples, Tucson, and Pathology Reports

Well, all I can say is that this has been an eventful day. Rob had a rough morning due to another change in his pain medicine. The pain nurse was in and out of the room several times trying to get things under control. Rob is trying to get a little sleep right now. He is exhausted from the pain. On a scale of one to ten, he was an eight.

The kids skipped school today to go to the open house of the LDS Draper Temple with Steven & Elaine. They thought that it was neat and glad that they went. There are beautiful paintings everywhere and they liked the baptizimal font. The railings around the font were brass colored, and Jacob wanted to know if they were gold. Jacob wanted to know why the tour only went through the men's dressing rooms and not the women's. Noah liked the crystals hanging from the chandaliers. Gabrielle liked the bride's room, especially the beautiul carpet. She reported to me that the door is double wide so the bride could fit through. (Her dress, not her body.) They were excited when their Grandma told them that their Dad helped Karl Quilter with the Angel Moroni that sits atop the temple.

My sister, Megan, who is here from Tucson helping me with the kids, decided this morning to take Sabrina, her daughter, back home to get her back to her regular schedule of dancing queen! She performed her Teddy Bear Picnic dance with such precision - look out! Megan thought that it would be a nice diversion for my kids to go with her for the weekend. So after deciding on the departure time, I ran around the house like a mad-woman packing all the things that they would need for the weekend trip (and forgetting many items - calling Megan five more times to put more things in the suitcase).

I drove them out to the airport and the kids were extremely excited. Jacob told me, "I feel like an adult!" He could hardly contain his excitement. He just called me and told me that he was on the plane. They will come back Monday night (yes, they will miss school on Monday - their teachers have been awesome to give homework that they can do while away - plus I am making them read books at Megan's).

Dr. Collins just came in. He said that the tumor in his lung was confined - the margins were negative (which means that there was no cancer around the outer edges of the removed lobe). The old margins (the area where Dr. Collins removed the bottom lobe last time) had a tumor in it - this is the area by his heart we were concerned about (the one that was attached to the chest wall and looked clean the other day - THIS is why you wait for the pathology report), but the area around it looked clean. The tumor had metasticized from the first cancer three years ago. The cancer cells were just too small to see last time.

The bronchial tube were cancer free. Dr. Collins said that the important thing is that his lymph nodes were clean as well. We asked Dr. Collins about the funky breathing he had (the breathing that he has had for nearly a year now and the whole reason we found out about the cancer). We were convinced that after Dr. Collins told us about the 'freak of nature' that Rob is (the bronchial tube adhering to the chest wall), that, that was the reason for the cellophane-sounding breathing. Well, Dr. Collins proved our theory wrong. He said he thought that it was due to the tumor choking the airways in the middle lobe. Hmmm. Something to think about. (If you start breathing like you have cellophane in your lungs, you might want to get that checked out.)

Thursday, January 22, 2009

ICU - Day LAST!!!!

I am so happy to tell you that Rob is being transferred to the 4th floor as I write.

Last night was a really bad night - his epidural stopped working. After a few times of fine tuning, he is much better and his pain is under control.

I can hardly contain my excitement! Last time, he was three days in the ICU. Practice makes perfect, right? (hehehe)

For now, it feels good. We have jumped through two hurdles - 1. surgery, 2. ICU. We have a few more to go, but I am pleased with the care he has received and how well he is recovering. He is such an amazing man. (No wonder I married him.)

I am grateful for the calls, notes, dinners, e-mails, and comments on this blog. We are surround by angels.

xoxo

Wednesday, January 21, 2009

ICU - Day One, Continued

Rob is doing fantastic!

He looks so much better than last time. He is off of his blood pressure medicine. the nurse thinks that he will be out of the ICU tomorrow!!! YAY!!!

While I was there today he had a few firsts:

First steps (awww so cute!) - I really wished I had my camera to take his picture. Francis Clark, Tarali, and I were walking behind him, just waiting for his gown to flip open. It didn't though. Darnit!

First Solid Foods (he fed himself, though) - He had corn, rice, buttermilk chicken (well, two bites of it), and Black Forest cake (few bites of that, too).

First Bath - well, this is the second bath there. He has bathed many times before today - in case you were wondering. (That is why he smells so sweet!)

Last time, he was in the ICU for three days. He seems bound and determined to leave there earlier this time (and to leave the hospital altogether).

The kids will be happy to have him home again. They have been able to talk to him on the phone a few times and it is the highlight of their day.

ICU - Day One

Rob is doing well. Last night his blood pressure dropped pretty low. They had to give him some medicine to keep it above 70 (keep in mind that the "normal/average" is 120 (systolic - the upper one). I asked the nurse why his blood pressure would drop so low. She thought that it had to do with the fact that he is young and normally has low blood pressure (115/60) or it was from the narcotics. She didn't think it was because of the amount of blood loss during the surgery.

This morning he is itchy from his pain meds so they cut back on part of the cocktail and gave him some anti-itch medicine. He had the same reaction after his first surgery.

Rob's Mom, Elaine, has been sitting at the hospital this morning - going in to visit him every hour (we can only stay for about 15 minutes at a time so as not to tire him). She says he looks good.

Rob's sister and Dad will go later and then I will follow after that.

Our children are doing OK. Jacob (12) and Gabrielle (10) seem to be handling it better than Noah. He was convinced last night that Rob was not coming home. He was beside himself. It was just sad. He asked me if he "was alive when Daddy had cancer last time." Poor little guy doesn't remember any of this since he was just barely four. (Or should I say lucky???)

Tuesday, January 20, 2009

Dessert

Dr. Collins just came in at 4:45 pm. Because of the radiation and past surgery scaring it was a very hard surgery. He sat down and looked exhausted. He wanted to know how we were (I think that we looked exhausted!). I asked him how he was - he looked worse than us. He kind of freaked us out, actually.

The first thing out of his mouth was, "It was a difficult case and he lost a lot of blood."

One of the fears was that the spot by the heart was cancer. Dr. Collins found that it was not. He said that Mother Nature gave him a scare. The bronchial tube had adhered to his chest wall (from the scaring, maybe?). So the good news is, what we thought was cancer in that spot, is not.

He took a bunch of nodules out that looked benign and sent them to pathology - they look atypical likely due to the radiation (thanks a lot, Tarali!).

The middle lobe was removed along with the nasty cancer (which looks contained). Last time, it was it was protruding out out of his lower lobe.

He took a sampling of the upper bronchial tree and at first look, it looks cancer free. YAY!!!

Rob and I had a difficult time deciding whether to have the surgery at LDS Hospital or here at Intermountain Medical Center. Dr. Collins said that it really was a good thing that it was done here. He had to use some instrumentation that is not available at LDSH. In fact, he had to pull some tools from his cardiac kit during the operation.

We tried to ask Dr. Collins about how long he would be in the ICU. He said that we are not allowed to ask questions that begin with "how long or what if." That was just the bit of comic relief that we needed.

We will receive a full path report in two to three days to confirm everything.

All I can say is that I am so grateful for modern medicine and prayers (miracles do happen). This is what we were praying for.

Noah (six) has been very worried that I would have to find him a new Daddy. Good thing that I don't have to do that yet. Tarali still wants me to find a new uncle (for him). : )

There are still a lot of unanswered questions. (Keep praying, please!)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

They called us about 15 minutes ago to let us go back and see him.

Ironically, when we walked in, the television was on. The program was "House." Tarali asked Rob, "You didn't get enough of the operating room, you have to watch it here?"

My Mom followed with: "That's in case they got the diagnosis wrong." You know how smart that Dr. House is (the drug addict doctor!)!

He looks so good. (Last time, he was gray and really out of it.) He was pink and responsive and in no pain! He was able to talk and answer questions. Our family will be taking turns over the next few days to visit him during his 'vacation' in the ICU.

Third Course

Another call.

The nurse just called. She said that they were just closing up - it would be another 30 to 45 minutes. Phew! I am sure that Rob is relieved. I know that I am.

She mentioned that Dr. Collins would come out and talk to us when he is done.

Seriously, I am on pins and needles waiting!

Did I mention to you that yesterday I was doing a "Chief Inspector Dreyfuss" with my face? It was hilarious to Rob. Not so much to me. Rob and I were playing Phase 10 (I was winning, as usual) - totally minding my own business when my left cheek started making with the tick. Soooo annoying. I think that it was my body's response to all this UNWANTED!!! stress.

CLOUSEAU!

(OK, for all of you who don't understand my aforementioned reference: This is from the Pink Panther movies. Rob and I had a Pink Panther marathon when we were dating. During one of the movies, we held hands for the first time. Rob's sister, Angie, walked in and noticed the hand-holding and with an embarrased face, turned right around and exited the room. We thought that it was funny.)

Elaine tells me that it is awful that I have to explain my references - I have been reading the blog entries to Steve, Elaine, Gloria, and Megan to make sure that I am making sense - you should have seen the blank stares as I was reading this one - thus the explanation.

Second Course

Got another call.

He is doing well. They removed the scar tissue. They haven't removed the lobe yet.

Dr. Michael Collins (his surgeon) took some samples of the tissue from his chest wall. The sample is not from his lobe or the mediastinum. I was told that this is precautionary, because Dr. Collins likes to take samples from the surrounding areas just to be thorough.

Today's Special

After a night of semisleep, Rob awoke at 4 am, I followed suit at 4:30. (YUCK!!!) We were able to fall back asleep just to receive the wake up call from the nurse at 5:50 am. Wahoo! The day has started! Rob can hardly contain his excitement. (hehehe)

He had to shower with the "special cleanser" and then we waited the two hours for someone to get Rob for his 8:30 am date with the knife.

They just called to let us know that he is doing well. The surgery started about an hour ago (about 9:45 am). They will give us a call in a few hours to update.

Steve, Elaine (Rob's parents), Gloria (my Mom), and Megan (my sister) are here with me to keep me company.

Will post again when the next course is served (hehehehe). Poor Rob, he doesn't know how much fun I am having without him. ; )



The family last night - the kids wanted to say good night to their Daddy.


This picture is from this morning during the wait for the free ride to surgery! I really wanted to post the picture of Rob's half shaved upper body. He threatened me that if I did, he would post pictures of me (no, not what you are thinking - childbirth - I think that we have come to an agreement).

What you are reading is gallows humor. Trying to make light of an awful situation. (In case you think I am a) crazy, b) insensitive, or c) lame - I just wanted to let you know where I am coming from...)

Thursday, January 15, 2009

Getting Ready

Alrighty. The surgery is now set officially for Tuesday at Intermountian Medical Center. We will need to be at the hospital before noon on Monday so Rob can get prepped for the big day.

We are busy cramming in as much family-time as possible since Rob will be incapacitated for six to eight weeks healing from his surgery.

We are keeping things as normal as we can for the kids. They are still going to school and keeping occupied with normal activities.

Rob is super-excited for Tuesday. It is all he can think and talk about. (I think that I would need to use water torture to get anything out of him regarding the surgery. He just told me that he is blocking it out of his mind. "Why would I want to think about it?")

I will add another post on Tuesday - surgery day.

Until then. xoxox

Wednesday, January 14, 2009

Surgery Consult

We met with Dr. Michael Collins today. He will be the cardiothoracic surgeon that will remove Rob's right middle lobe.

He looked at the scans and biopsy results and came in to talk to us. He told us that Rob should do well with the surgery. Because Rob already had one lobe removed, his left lung is "primed" or is compensating for the loss. Now that he will be down to 1 1/3 lungs (hehehe) he should be ok with the surgery and recovery - it will not be as huge a shock as before to his body.

He is planning on removing the scar tissue from the last surgery and then he will remove the offending lobe. Additionally, after he removes the lobe, he will juggle everything that is left in Rob's cavity to take out the node (medical speak for the thingy that may or may not be cancer) in his mediastinum (the place by his heart). The doctor didn't seem worried about getting to the spot; it will be difficult, but it can be done. We asked him if he was concerned about the other node (the one not in his lung) and he said that he was, but he will remove it. A pathologist will be there at that point in the surgery to take a look at the two nodes to see if 1) the margins are clean (did they get it all??) and 2) whether the node in the mediastinum is cancer.

The surgery is scheduled for Tuesday, next week - we don't know which hospital yet. It will either be at IMED or LDSH. We will find out tomorrow.

Maybe I should have called this blog "lobeless in salt lake" instead of "hairless." Hmmmm. I recalled his last experience with the whole losing all his hair thing when creating the name of the blog.
We will not know until after his surgery and the Tumor Review Board looks at his case to see whether they (a group of docs) think his treatment should be.

Tuesday, January 13, 2009

PET Scan

All I can say is that this PET Scan experience was sooooo much better than the one three years ago.

There was no leaking IV, no bladder exploding. YAY!!! We got in at 7 am and we left about 9 am. Nice and easy. Ahhhh, the joys of radioactive isotopes!

We spoke with Dr. Pearl earlier than expected to learn the results of the PET Scan. His cancer seems to be only in his lung (sigh of relief). There is a 'hot spot' near his heart that is suspicious. We are not sure when we will find out whether it is cancer-related or an infection (as they present the same way on scans).

Tomorrow, we meet with Dr. Michael Collins. He is the cardiothoracic surgeon that performed the thoracotomy with lobectomy three and one-half years ago on Rob (opened him up and removed his right lower lobe).

The kids are doing their best to hang in there. They are having a rough time. Rob and I are plugging along as well. This seems surreal. I am sure that everything will work out for the best.

I am grateful to you; we have had an outpouring of love and support from so many people. Thank you, thank you, thank you.

Until tomorrow...


Monday, January 12, 2009

The Beginning

For the past year, Rob has been breathing kind of weird - it sounds as though he has cellophane in his lungs.

In the beginning of December he met with his pulmonologist, Dr. Jim Pearl (extraordinare) - the doc wanted Rob to have a bronchoscopy to see what what was going on. On the 12th, he had it. The procedure showed that nothing was wrong. Dr. Pearl told Rob that he wanted him to come back and have a CT in January.

Wednesday (January 7), Rob had a CT and met with Dr. Pearl again. It was an interesting visit. First he came in:

"Hi! How are you? How are you feeling? You look great! Didn't you get a CT today?"

"Yes, we brought it in. It is on your desk."

"Oh! That is why I couldn't see it - I will be back in a few minutes." (His desk is pretty messy.)

Ten minutes later he comes back in.

(note: tone is definitely different...)

"So, how are you feeling? Do you have any pain? Are you coughing up blood?"

"No, I really don't feel any different."

"Well, it looks as though the spot that showed up in September [we were told that it was probably due to the after effects of radiation] is double the size."

Many other questions asked. Blah, blah, blah...

"We can do one of three things:
1. wait and see what happens - I don't recommend this option.
2. Get a CT-guided biopsy, or
3. Get a bronchoscopy with a biopsy."

He then told us the pros and cons of the last two. We chose another bronch. We had the biopsy done on Friday. Dr. Pearl took 31 samples and personally walked them up to pathology.

Today, we had the follow-up appointment with Dr. Pearl to learn of the results.

It turns out that Rob's cancer is back.

Today, Rob had a lung capacity test done to see whether his lungs could take another lobectomy and then he had some blood work done to see his liver function.

Tomorrow at 7 am, Rob will get a PET scan to see where the cancer is (well, we know it is in his right middle lobe, but this is to see whether it has metastisized - spread throughout his body).

We will meet with Dr. Pearl on Wednesday to find out what the prognosis and plan of treatment will be (as far as surgery).

Three and one-half years ago, when Rob was first diagnosed, I developed an ulcer in my throat from talking so much. So rather than repeating myself over and over, I thought that I would update information in one place and let people learn about Rob's health this way. Of course, we still want to talk to all of you but rather than repeat all of the news about his cancer to each of you, we can save our phone/e-mail conversations for just the everyday talk that we usually do with our friends and family that love and care about us (and we, you).