Hairless in Salt Lake

January 2012

2012-01-22T07:35:00.007-07:00

This last month has been semi-eventful..

SCAN: Rob had his final scan (I asked special permission from our health plan). Do you recall in a previous post how I mentioned that I like numbers? The doctor who read the scan said this: "Numerous nodules are identified throughout the right upper lobe as well as the residual aspect of the right lower lung. The nodules are too numerous to count. Findings are concerning for lymphangitic tumor spread." {really?} No numbers. Rob was poked five times (in both arms) trying to find a vein (his veins seem to hide at the mere thought of being poked). Poor guy. Anyway. I was hoping to have some final numbers, but it was not to be. Bottom line: cancer growing.

CHRISTMAS: We were able to spend Christmas with Rob's sister, Angie, and her beautiful family. We packed clothing for the kids and surprised them the morning we left. It was a lot colder in Texas than we thought it would be (the humidity sure makes 40 degree weather feel A LOT colder than 40 here). Regardless of the temperature, it was a fantastic trip and many memories were made. We appreciated the hospitality of Angie and Chad and their willingness to share Christmas with us.

HEALTH UPDATE: Rob is doing well. He looks good. Because he is on steroids he has an appetite (he cannot stop eating). The food he likes to eat most is Pink Lady apples. Now, when he eats any other apple they are flavorless to him. The steroids also give him energy. One of the side effects of the steroids is that it gives him acne. Poor boy. He looks like he is 15 again. He is taking some antibiotics to help clear it up a bit. It seems to help.

Rob's pain meds have been changed again. When he started the hospice journey, he was only taking some long acting pain meds. Last week, they added some short acting pills as well. He hasn't been sleeping (and thus keeping me awake). I had been sick for three weeks with laryngitis and bronchitis. I was starting to fall apart from not sleeping. Monday last week, I called Barb and told her that Rob wasn't sleeping. I thought that he had anxiety. She came to the house and listened to Rob's lungs and talked with him. His left lung is sounding worse. After talking with Rob, Barb said that what is happening is he is not breathing as well. His brain and his lungs are not talking to each other. Subconsciously, he knows something is not right - that is why he cannot sleep. She added some pain medicine drops that work within ten minutes. These will help with him sleeping. We are almost one week out from the start of the drops. I can attest that it is helping. He sleeps now. {So do I.} It will take some time before his body adjusts to the change in the pain medicine. Right now, I have a husband that looks stoned most of the time. It is funny to see him. Last night right after the took his medicine he started talking to me. I couldn't understand him at all. It was hilarious. One of these days, I need to record him and post it here.

One thing that I have noticed is that the gurgling is picking up. It is not all the time. Sometimes, it wakes me up in the middle of the night. He is still coughing. Another medicine has been added. Rob was on an inhaler to help him breathe a little better. Camille (Rob's other hospice nurse) added a nebulizer. This is to make the albuteral get to his system a little slower and more evenly spaced.

ME & INFORMATION: As I mentioned before, I am a numbers gal. I love information. The more information I have, the better I cope. Through all this, I have asked Greg (oncologist) and Jane (palliative care) many questions. I expect straight-forward answers. In talking with them, they have explained that many patients (and their family members) ask for the same frankness; however, when it comes down to it they really do not want the frank answers. This whole cancer bit has become second hand to me now. We just marked our 6.5 year mark. I know how I operate. I have educated our hospice nurses to let them know my modus operandi.

Because I am at work, I am not at home to be a part of the hospice nurse visits. For the last 6.5 years, I have attended all of Rob's doctor's visits. As I already mentioned, I fare much better with more information. Wednesday, Rob showed me a chart he made. It helps him organize the 8+ medicines he needs to take. I noticed that they had added the short-acting pain medicine. I didn't even know that they added that a week ago. Wow. I feel like I have no control of this situation (I have never deluded myself into thinking that I did have control). At least in going to the doctor's appointments with Rob and asking questions, I knew that I had some semblance of control (at least in my mind). I suppose in a way, asking questions and getting answers dictates some sort of control: I am controlling the amount of information I am receiving.

Long story short: I am going to have Rob call me when Barb or Camille (Rob's other hospice nurse) come to the house. He can put the call on speaker and then I can 'be a part' of the appointment. I think this will help with me feeling helpless.

Incidentally, I have already told Rob under no circumstances is he to die in the winter. I refuse to wear a skirt and freeze off my heiny standing in the cold. He told me that he would do what he could. Hahaha.

KIDS: Our kids are doing well. We have a hospice volunteer coming to the house helping the kids to talk about 'feelings.' At this point, they are annoyed and don't like it. I think that at some point it really will help them. They are such good kids. They are amazing. Throughout all of this, they are still exceptional students. They seem happy. (We have told them that their school work is not to lapse - this whole cancer business is not an excuse to earn sub-standard grades.)

I think that I will be posting a little more frequently from this point forward.

Again, we are grateful for the love and support we constantly receive from family, friends, and even strangers. We are grateful for the miracle of the last 6.5 years. Our kids know their dad. We have created many memories. Life is good. God is good.

The Mother of all Updates

2011-12-07T17:23:00.007-07:00

As you have ascertained, I have not updated this blog in SIX MONTHS! Yes, I know. There are reasons, none of which I will get into right now. Suffice it to say, it has been a bumpy road the last six months.

Chemotherapy has been awful. It seemed that the longer Rob was having chemo, the worse he felt. In August, we drove to California to visit my dad. Rob was supposed to get a chemo treatment the day before we left; however, after a conversation with his oncologist, we decided to wait until we arrived home. This was a nice five-week break (generally there are three weeks between treatments).

August: When we returned from California, we had a treatment. Soon after, Rob’s dizziness and nausea increased. Bruce, the nurse practitioner, had Rob walk down the hall like he was walking a tightrope. Needless to say, he failed miserably. {It was quite humorous to watch, actually.} Because he was having nausea with the dizziness, a brain MRI was scheduled. Bruce was worried about the cancer metastasizing to his brain.

It hadn’t. Phew. Another bullet dodged?

September: We ended up calling Intermountain Healthcare’s Balance Center. We found that (in addition to nasty chemo side effects) Rob has BPPV (Benign Paroxysmal Positional Vertigo) – otherwise known as ear crystals. This is why he had been walking around like a drunken sailor.

We had a CT scan at the end of September. It was hilarious. The radiologist wrote the report with minimal information regarding the growth of the tumors. {Wouldn’t you think that if the diagnosis was cancer one would give detailed information about the growth, rather than “slight progression of metastatic disease” as the best detail? Come on! We make treatment decisions based on these reports!} Anyway, I digress.

We went into the appointment with no better understanding of what the last scan showed than before we had the scan. Bruce was just as confused as we were. Hahah! So glad that it wasn’t just us that felt like the report was lacking. He sent a request to the radiologist to get detailed measurements. We went ahead and had chemo, because we weren’t sure about the scan report.

October: One week later we received a call from Bruce with the addendum report: there are several more tumors, most are growing, the largest tumor nearly tripled (now 9 cm x 4.5 cm) and the second largest nearly doubled (now 7 cm x 3.6 cm). Minimal changes? Really? Well, with that bit of information we decided to cease the chemotherapy treatment. Nine months of chemo was enough.

Another bit of fun information is that the scan showed that Rob had a kidney stone. Apparently, if one is drugged up enough, one doesn't feel a kidney stone. His brother and sister both had one this year and they were in so much pain. Rob said that they were wimps. He had an ultrasound two weeks later and apparently he passed the stone (again with no pain). Wow. He is Superman!

Mid-October: We spoke with the oncology doctor about other chemotherapy treatments. With one of the treatments, he would have nausea, hair loss (which screams cancer patient), fatigue, and joint & muscle pain. The other treatment would be all the side effects as in the first option, with the exception of hair loss. Since the chemo drugs he just finished made him sick, he would definitely become sick with the other treatments. The chance of the chemo working is cut in half and it we could expect that it would work half as long as before. Since the last drug lasted roughly nine months, then the new would work roughly four and one half months. As Dr. Litton was telling us all this he said that he was talking himself out of the chemo treatments as well. {Honestly, we had, had enough. The thought of treatment made Rob sick – and still does.}

November: Rob enjoyed thoroughly NOT having chemo treatments. We had family pictures done on his birthday.

December: We are supposed to just watch for the cancer side effects now. Increased fatigue, short of breath, losing weight.

Speaking of losing weight…Rob has lost 26 pounds since January. Most of that weight loss started in the middle of August. He weighs less than when we were married 18 years ago. Interestingly enough, did you know that cancer puts out hormones that make it impossible for your body to absorb calories? One could eat 4000 calories in a day and still lose weight. That is why people with cancer lose weight. I always thought that the calories were going to the cancer cells. Huh. See Rob's weight loss line chart below:

Thursday, December 1, after meeting with Jane (our palliative care doctor) we decided to be proactive in Rob’s care. We have started hospice. Before I go on, I would like to provide some education about hospice. The following definition of palliative care & hospice from NQF (National Quality Forum):

Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.
Hospice care is a service delivery system that provides palliative care for patients who have a limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears. Hospice care further addresses the bereavement needs of the family following the death of the patient.
Of particular importance, palliative care services are indicated across the entire trajectory of a patient’s illness and its provision should not be restricted to the end-of-life phase.

There have been studies that prove that when one is involved with hospice, they live longer and have a better quality of life versus receiving treatment until the bitter end. We are "choosing hospice to live, not to die" (the words of Jane). If you are interested in learning a little more about hospice and why someone would choose hospice, here is an article written by Atul Gawande, MD, titled “Letting Go.” This is not a short article (about 25 pages); however, it is well written and gives examples about hospice versus treatment. I would recommend this for anyone interesting in finding out more about hospice.

This is what I have learned so far with our interviews with the hospice people: Hospice consists of an interdisciplinary team. This group of people provide treatment at the patient’s house. The disciplines are: a nurse (for physical needs), a chaplain (for spiritual needs), and a social worker (for emotional needs). Additionally, volunteers come to the home to help out with respite care (for me), run errands (if needed), and help clean (wahoo!). So far, the folks at CNS are amazing. They are a well-oiled machine. Monday morning I received three phone calls to make appointments for the various professionals to come to our home for the initial assessments.

As time progresses, I hope to provide better communication in a more timely manner. I have been a bit overwhelmed the last six months. {Does anyone even read this anymore?}

Present day: As far as how Rob is feeling: his fatigue is picking up a bit. He still has energy; however, I can see it slowly evaporating from him like rain hitting the pavement on a hot summer day. He is coughing more. We both noticed it last week and it seems to be progressively getting worse. Soon, he will sound like a smoker. Haha. The thing I love most is when he is sleeping next to me and I hear him breathing. Sometimes, it is rattle-y. Well, at least he is breathing. His pain is well managed right now. {I need to mention that he is not dying right now. Rob is concerned that I am making it sound like he is withering away. He is much better than he was this time last year (remember the oxygen?); however, I watch him like a hawk and I see that he is a little more fatigued than last month. It is only a flesh wound.}

As you may have already figured out, Rob isn't working anymore. He is enjoying his 'early retirement'. He spends his time painting, drawing, reading, walking, doing yoga, taking the kids to school, cooking dinner {wow. I have a housewife!}, working at transferring our home videos to DVDs, and updating his personal history.

Before I sign off, I would be remiss if I did not mention a few notes of gratitude.

The folks at Otto Bock Healthcare (Rob’s employer) have been completely AMAZING. You know what you have done. I cannot even begin to relay the gratitude Rob and I feel for you and what a blessing you have been in our lives. We appreciate all the love and support you have given him and our family over the last (almost) ten years (6.5 of that has been life-with-cancer). It is unheard of these days for an employer to stick by an employee to the degree you have. We are eternally grateful.

Everyone at Utah Cancer Specialists – our entire cancer experience has been so positive. We appreciate the fantastic care you have given Rob. It has been such a pleasure seeing you every three weeks for so long!

Thank you to our families – for standing by, helping, loving, and supporting us. We know that you will continue to do so. We are so blessed to have such amazing families.

Thanks to our ward family for the words of support and encouragement. We appreciate you asking after Rob and commenting how much you enjoy seeing him at church. Yes, he does look fantastic (he is like a college boy again - he is 13 pounds heavier than Jacob and can wear Jake's pants now - from a size 34 waist to a 29).

Thanks to my work family. Working full-time would be awful if it weren’t for you. I am so blessed to have such good friends. Thank you for your support.

Thank you, my Arbonne family. You are so supportive and kind. I appreciate you.

We would like to thank God for the peace, love, and support we feel from Him. Without Him, I cannot imagine how much more difficult this journey would have been.

More updates to come!

With much love and gratitude,

Jessica

Update...

2011-07-04T13:16:00.003-06:00

Rob just had a scan: no change from the previous in April. That is fabulous. Wahoo!

This scan was a little different than all others he has received. It was an angio CT. He had been having some pains in his lungs (different and more than usual) and some swelling in his legs. His palliative doc thought that he might be having a pulmonary embolism (blood clot in his lungs). She wanted to make sure that, that wasn't the case.

All clear on the clot front. Another bullet dodged?

He is still continuing with chemo every three weeks. He gets poisoned next week, in fact. When people see Rob, they say, "Wow, he looks great! He looks normal." He really does. He has lost ten pounds in just under two months. He doesn't eat near as much. In fact, looking at his plate yesterday and mine, I was really embarrassed how much food was on mine. I felt like Miss Piggy in all her glory. Oink...

People who have not experienced chemo first-hand, think of chemo like what is seen in the movies. Since real-life is not always like the movie, I thought I would share what this particular chemo does to Rob. The name of the drug is called Alimta.

It does not make his hair fall out. I think that people are surprised that he is having chemo, since he still has hair.

He mostly feels crummy for one week after. Someone asked me how quickly he can feel the effects of the chemo. The whole process takes about 1.5 hours. When we are driving home, he is feeling it.

The day of chemo his face turns a funky yellowish-greenish color.

The day after chemo, his face turns bright red and swells a little; think dodge ball. It is like he is burnt - he actually has a bunch of freckles from this chemo - it is called hyperpigmentation. His appetite is somewhat there. He eats, but not much (hence the weight loss).

After the first week, he starts to feel a little better. Tired still, but not as the first week. A little nausea, but nothing that a bunch of pills won't help.

He is exhausted, but cannot sleep. Too much on his brain? Not sure...

The week right before, he starts to feel a little sick again. Nausea sets in again and he is very tired.

He can function and do the things he needs to. He can help me around the house, play with the kids, drive himself to work for a few hours a day a couple days a week (not the chemo week, though). He just has to pace himself. He will take a nap for a few minutes or several hours, depending on how much he has done that day or week. He is not sitting in his cancer chair all day long.

I have tried to take a picture of him during the 'face of many colors' but he is pretty adamant that I don't. I guess he doesn't want that chronicled. Hmmm. Next week, we meet with Dr. Litton's PA, the palliative care doc, and get chemo. Cannot wait!

Hallelujah!!!

2011-04-08T10:06:00.007-06:00

Wahoo! Rob had a scan on Monday. We saw the doctor yesterday.

I suppose this wacky chemo has been doing something! (Well, we knew it was because Rob is not on oxygen and he can breathe and he doesn't look like he is on Death's door anymore.) I guess, feeling nauseated 90% of the time and wanting to sleep all the time is worth a little poison.

Dr. Litton came in to the exam room smiling. He said that it is really nice delivering good news. (I guess in the cancer field, good news is a rare commodity. Imagine that?) Dr. Litton gave us these pictures of these scans he printed. (I thought that was very nice of him. Now, we have our very own show-and-tell!)

Take a look at the scan on top. (Jacob said that his lungs look like a steak.) Take a look at the "steak" on the top right. All the white splotches in the black area is cancer. The image on the top was taken in January. Do you remember January? We thought he was going to die that month. It was indeed a bleak month in so many ways!

OK. Now, take a look at the "steak" at the bottom right. The white stuff is smaller, not as pronounced. You can see the cancer on the left side of the picture has decreased a little as well.

Rob's brother, Gregg, had a great question: If the cancer is smaller, what happens to the space where it once occupied?

The answer: The cancer was growing into the aveoli (lung's air sacs), now instead of containing cancer, it is filled with air. This means that more air is getting into his lungs: he is breathing better.

We have a plan after viewing the scan and report:

Go in for the chemo drug Alimta every three weeks (rather than doing the Carboplatin & Alimta as we thought before).
He will not need to go in for nader visits 10 days after chemo (this is where they take a look at his blood levels to make sure that he is not too sick and can continue with chemo).
His side effects are not supposed to be as severe as they have been with only the Alimta.
He will continue with the Alimta until it no longer shows its effectiveness.
He will continue to have CTs every three months.

Rob hasn't worked full time since the middle of January. His short-term disability is now coming to a close. His long-term disability will start toward the end of April. He is only able to get in few hours of work here and there. This has been difficult for him not to work full time. He misses his association with his co-workers, he loves his job, and what he does.

Thanks, Sarah & Nate, for your understanding! Thanks to the rest of the awesome Engineering team at Otto Bock for picking up the pieces and helping with Rob's projects while he has been 'away.' Rob appreciates all of you and the support you have given him! He is hopeful that he will gain a little more energy with this new regime (we will find out in the next few weeks...he has chemo next Thursday). He is looking forward to seeing everyone again!

I love and appreciate that we have people coming out of the woodwork to give notes of encouragement and love, phone calls, and so many other gifts. Thank you so much. It sure makes this awesome roller coaster much more enjoyable (is that the right word??).

We love you!

Round Four

2011-03-26T13:05:00.003-06:00

Again. I am so resistant to updating. I figure if I don't post an update, then we are all cancer free. [does that work?]

I will start from last week's doctor appointment with Rob's palliative care doc (Jane McPherson)...

3/16/2011 ~ Doctor Visit
Rob gained two pounds. His oxygen and everything else is normal. Blood levels are a little low, but within chemo parameters. Wahoo! His pain levels are much better (thanks to the doc's tweaking of his meds).

We talked to her about how much better he is breathing and how he seems to be coughing less than before. We wondered whether there was a connection between the chemo and his feeling better.

Jane told us that tumors trap infection and this constricts the airway. Chemo often times helps shrink the tumors which in turn reduces the inflammation and makes the oxygen work better in the lungs. (Phew!) Does this make sense?

Rob is still feeling a bit of pain from the chemo site from six weeks ago. Apparently, the chemo is a poison (really?) and it is causing some irritation in his veins. We talked about a PICT line and a PORT, but decided that to help combat this pain and to make it so it is better in the future, his nurses will dilute the chemo solution a bit more and he will need to apply moist heat on the site. It is less invasive this way and where we don't know how much more chemo he will be having, it doesn't make sense to hook him up and make him a Borg at this stage.

One thing we did - that everyone should think about doing - is we filled out a form called a "Pulse Form." This is a document that one carries with them at all times (glove box, wallet, at home, etc.). It tells any emergency worker/caregiver/hospital/etc. what one's wishes are in the event of a car crash, etc. It was a fantastic conversation to have with Rob and Jane. There were interesting questions: some that I wouldn't have thought to ask.

3/24/2011 ~ Chemo Day
Rob lost two pounds. (Are we seeing some sort of trend yet?) Blood levels were OK enough to get the chemo.

Chemo went well. It was long. The last few days have been good. Fatigue. Nausea. Hiccups. Nothing new.

xoxox

Round Three

2011-03-04T07:47:00.003-07:00

I checked out for a little while. I think that I needed a non-cancer break. Forgive my lack-of-information...

It is interesting: the last few weeks have actually been good. Rob has been able to go to work for a few hours each day. He is completely exhausted when he gets back home, but he feels more like a human being than he has in a long while.

Yesterday was chemo day. It is funny how that works. One starts to feel a bit better and then it is chemo time again and it knocks one down on one's rear. We started the chemo prior to the appointment with the doctor as he was running two hours behind. (Thank goodness we had the chemo set up, right?) He is never that late - a fluke.

At any rate, it was a good appointment day. We talked with his doctor about what is next. We decided since Rob looks so much better than he did in December/January that the chemo must be doing something. He isn't coughing like he was, he is on oxygen only whilst sleeping, and his pain is being managed much better (thanks to Dr. Macpherson).

We have opted for one more round of chemotherapy and then we will have the scan a little over a week after that. Originally, we only agreed to three rounds of chemo. However, as far as we can tell (without a scan), it seems to be helping a bit, so it seemed prudent to get one more round in. Additionally, all of his scans have been three months apart. They also have generally shown an increase of 60%. If we were to get a scan after two months, it would be difficult to compare with older scans. Based on his clinical improvement (and the scan results), he can continue for one or two more rounds of his current drugs. If he shows response (meaning: growing as fast as it has) after that the additional rounds of chemo, then we would get rid of the carboplatin drug and keep on the alimpta drug as a type of maintenance.

Next chemotherapy: three weeks
Next scan: first week of April

Again, we are so grateful for the love and support we have received from so many countless people.

Chemo Shmeemo

2011-02-12T18:14:00.006-07:00

Thursday was a big day. We met with Rob's oncologist, a palliative care physician, and had chemo.

Rob's oxygen saturation levels were extraordinary! 97% on two liters of oxygen. Wahoo....!!!

He has lost another pound since February 3. Not alarming, but he is down seven pounds since December.

We told his oncologist how awful his first chemo week was, what with all the puking, feeling like puking, and sleeping. His oncologist told us that he was going to add an IV drug called Amend prior to the chemo to help with the nausea. He also added a few more prescription drugs to help with the post-chemo nausea.

We started the chemo and whilst waiting for the blood work to come back, Rob and I decided to run an experiment. He took off his oxygen and then we retested his levels after 25 minutes. His levels were at 93%. So, after talking to the nurse, we decided to only use his oxygen when he is exercising or sleeping. He is so happy about that. I am still waiting for the pulse oximeter I ordered forever ago to arrive to double check and make sure he is getting enough.

The palliative doctor was fantastic. She went over all Rob's medicine and told us how he should better utilize the medicine he is taking. Up until this point, he was taking so many at random times for this or for that.

Last chemo go-round he was soooooooo sick the day after. This time around he has been really good. There is some nausea and fatigue, but not near as bad as it was last time. Funny thing, though. He has the worst hiccups. (If you remember, which you probably don't, last treatment in 2005, he had terrible hiccups and required a prescription drug to take care of it - it didn't help the fact that he was still healing from his lung surgery.) We are trying a few different things right now: Maalox Advanced, GasX (I know, right? Who would have thought?), and a prescription drug for his nausea that may help with the hiccups. We will see.

We took a small walk today. It was nice to get him outside, but he was exhausted when we were done. (It was uphill, to his credit.)

Thank you for all the kind words, thoughts, and deeds on our behalf! We are very, very grateful.

Eat, Drink, & Be Merry

2011-02-03T17:04:00.005-07:00

Ahhh. The last few days (compared to the two weeks prior) have been good. Rob has eaten almost like normal. Wahoo! He is still tired, but really, the last few days have been good. He was even making jokes. This is a huge thing, since last week, I think that he would have just assumed crawling into a six-foot hole. His nausea is just about gone (thus the eating).

We visited his oncology office to get some blood work done. His levels are pretty low (duh - he just had chemo), but not alarmingly so. He is highly susceptible to catching any kind of illness, so we try to keep people at bay. If someone comes to our home, we spray them down with sanitizer.

His oxygen levels were FANTASTIC! They were 98% on four liters of oxygen. They lowered it to two and tested him ten minutes later. It was 96%. They decided that we could leave it at two. I purchased a pulse oximeter so we could test his blood oxygen levels at home. No more guessing - or assuming that he is getting enough (or not) oxygen.

He is on day nine after his last dose of Levaquin (antibiotic). He is already noticing a difference how he feels; he is coughing more and he has more pain. Thank goodness for drugs to help ease the pain. Hopefully, this vicious cycle of pneumonia on and off again will end.

One week from today, he will have another round of chemotherapy. We are looking forward (with much trepidation) to the days following. We are preparing for much vomit and sleeping (hopefully not at the same time).

What a Week!

2011-01-23T13:27:00.004-07:00

What a week this has been. I left, very reluctantly, to go to my Arbonne convention in Las Vegas. I was so worried that Rob would get worse as the week wore on.

All during the week, he didn't feel well at all. I am grateful for friends and family to get the kids to where they needed to go as well as all of their meals so they wouldn't starve.

I am so incredibly grateful that despite my worries of leaving Rob, I was able to go to Las Vegas and enjoy my conference and be with my amazing Arbonne sisters. It was a week of incredible training, surrounded by positive men and woman, and being uplifted! It was nice to have the technology to text my family and have constant communication to know that everyone was well off.

When I returned home on Friday (late - my airplane had electrical issues and we had to de-plane, board another, and were in the air an hour later), Rob's dad drove us straight to Rob's oncologist for his first round of chemo.

We saw a physician's assistant before starting his chemo. His blood pressure & weight looked good (despite not eating more than a meal's worth of food during an entire week). His oxygen levels, however, were dismal. Remember how they were 84% when we were at the ER five days earlier? Well, on two liters of oxygen, they were at 83%. Yeah, they moved pretty quickly to increase it to four. Huh. Not sure how we can know this in the future. I am planning on contacting the home health agency to have them come out to our home periodically to check it - don't want it slowly slipping and have no idea.

Saturday (yesterday), he felt absolutely terrible. He received scripts for three, yes three more (he already had one) anti-nausea medicine. Not working so well. Between being sick and feeling sick, it was a very busy day. Holy moley.

We decided that we are going to find one thing each day for which to be grateful. I won't tell you what Friday's gratitude entry was - pitiful, really, but Saturday, it was: "I was finally able to sleep during the day." That is spectacular!

Generally, sleep is the one thing we can look forward to when unwell, but that has alluded Rob for the past week. He vacillates between our bed (which is now on an angle - I say it is 45 degrees, but Rob assures me that it is not) and his cancer chair (remember the Lazy Boy?).

Today, he was awake for about three hours total. Yes, he has gotten back into his newborn sleeping habits again.

Wild and Wacky Weekend

2011-01-16T19:33:00.003-07:00

Friday, Rob had an appointment to receive his B-12 shots in preparation for the chemo the following week. The doctor wanted to see him as well since he is feeling crummy again. Rob left work early so he could get to the appointment on time. When he got home, he wasn't feeling well at all. He took his temperature and it was 101.7. He rested for a little while.

Our kids were out of school on Friday. We thought it might be good for them to come and see where Rob's chemo will take place - make it less scary for them. Jacob ended up going to a friend's home to work on his science fair project. So it was only Gabrielle and Noah that accompanied us.

When we got to his appointment, Rob was looking a little (well a lot) awful. The nurse recorded his vitals. He had lost 3.5 pounds since last week, his oxygen levels were 95 (if I remember correctly), and his blood pressure was good. However, his temperature was 103. I didn't think that was too high - after all we don't get too concerned with children's being that high. The nurse let me know that a fever that high is never a good thing in adults.

They whisked him into the chemotherapy area and inserted an IV and doused him full of IV fluids and retrieved some blood to run some tests. We explained that his pneumonia really hasn't gone away since the beginning of December.

Rob's cycle of antibiotics:

After the second day of antibiotics, he starts feeling better.
Then about ten days after the last dose of antibiotics he starts feeling crummy again.

This is the third time with this particular cycle.

Anywhooo. The physician's assistant that saw Rob told us that something else is going and he was going to admit him. They would get some IV antibiotics and possibly start his chemotherapy early.

Meanwhile, Gabrielle and Noah are getting a little worried. It was close to the time when Rob's sister, Tarali, was leaving work (she works one floor below in the radiation therapy department). She took them home for us since we weren't sure how long things would take. She had to talk to them a bit as they were feeling distressed.

When I got back from the hand-off, the PA said, "Well, it looks like his white blood count isn't really any different than last week and the blood culture won't be back for a few days. We are going to give you some different antibiotics to see if these work better. We aren't going to admit you now, but if your fever doesn't go away, if you feel worse, or you have trouble breathing, you need to go to the emergency room immediately." We promised and went home.

Friday evening: coughing, fever
Saturday: coughing (surprised?), fever, up all night, fever, coughing
Sunday: exhausted from no sleeping and abdomen sore from all the coughing, looking pretty much terrible.

Rob stayed at home today instead of going to church. During the meeting, Noah was having a difficult time being still. He is very worried about Rob's state of health. I asked him if I were to text him, would that ease his mind. (Yes, I know that I shouldn't be using my phone to text in the middle of church, but, I think that this is a very good reason to do so.)

Noah was able to communicate with his dad and I was able to find out whether we needed to go the the ER or wait until tomorrow to see his oncologist. It was decided to go to the ER.

We got there and his heart rate was 130 and his oxygen level was 84 (levels 90 and lower is in the danger zone). The triage nurse quickly got some oxygen and a wheelchair and put his chart in the 'orange' zone (yellow=people can wait, orange=get 'em in quick, red=they are dying right now).

Long story short (or five hours later) - Rob had IV antibiotics, anti-nausea meds, an oral dose of antibiotics, an X-ray, a blood panel, and another blood culture. He is now on oxygen. We are not certain whether this will be a permanent fixture around the house, work, etc., but he sure looks cute, what with the clear tubing up his nose, around his ears, and around his neck like beautiful jewelry.

It was a little scary seeing the oxygen level so low. Generally, his is generally between 94-96.

Honestly, I know that both Rob & I are looking forward to sleep tonight (that is if his coughing will let up enough to do so).

A New Year

2011-01-10T16:40:00.006-07:00

As much as I enjoyed the holidays with the family, I am really glad that December is over. No, it is not because of all the hustle and bustle of the season. Rob really had a rough month.

As you read in the previous post, he had pneumonia at the beginning of the month. He sort of got better, but not really. The coughing (which is ever present anyway) seemed to lessen a bit after being on his antibiotic, but then about 13 days after his last dose, he started right back up again. The cracked/broken rib didn't help much. The pain was pretty intolerable.

The 27th, I called his oncologist and explained what was going on. More antibiotics, cough medicine, and pain medicine was called in. It took several days before he felt better.

So: to sum up December...

Coughing

Pain

Coughing

Pain

and

Coughing.

Monday, January 3, Rob had another scan. We met with Dr. Litton on Thursday last week.

Cancer: growing (surprised, right?) - the largest tumor (according to the report) is 9 cm long by 4.5 cm wide - wahoo! So cute. The little tyke just trying to grow up.

Anyway, I digress.

Basically, he said that at this point in time, if we are going to do something, we really need to it now. He gave us three options.

Do nothing

Start chemotherapy - the kind that he would have Rob take is Carboplatin/Alimpta. Supposedly, he will not lose his hair (what hair anyway?), but there will be some side effects like fatigue, possible neuropathy (where your extremities hurt and tingle like someone is poking you with pins, and every step hurts), and we read about some other possible side effects like nausea and weight loss.

Join a Phase One Study (that means that they just finished testing on animals and are ready for the human guinea pigs) at Huntsman at the University of Utah. We don't know any of the side effects or whether he would be a candidate.

He said that if we go with the chemotherapy route, we needed to start within the month. The reasoning behind this, is that, they need some sort of baseline (his January scan) to see how the tumors react with the chemo. If we wait too long, it will be difficult to see what effects, if any, the chemo makes.

Sunday, we had the whole family fasting and praying on our behalf. Poor Noah (he is eight). He thought that he was going to pass out from not eating. It was a big deal for him.

I feel like this whole week has been like I am sitting on a giant pendulum. At first, I was indifferent to the chemo option. Next, I worry how it will effect Rob and whether it is going to decrease his quality of life. We know that this will not cure him. Then, I think, well, it may just assist in making those pesky tumors stop growing. ARGH!

Rob has decided to try the chemo route once more. I think that it is safe to say that the study is out of the picture at this point.

This Friday, he will go in to visit the lovely nurses at Utah Cancer Specialists, and get a script for folic acid and receive a B-12 shot (both of which are to help stave off neuropathy).

The following Friday, January 21, we will go and get the poison pumped into his body, in hopes that it will make the cancer not grow as quickly. After two to three treatments (each three weeks apart) we will re-evaluate. He will have another scan and we will decide whether to continue with the chemotheraphy.

With this breaking news, I will probably be updating the blog a bit more - to keep you apprised of his health. I know you are all waiting with bated breath...

Pa Monney Ahhhh

2010-12-05T18:26:00.003-07:00

Rob has been coughing and hacking like a veteran smoker. This is more than his usual lung-cancer-coughing-fits.

Friday afternoon and evening, Rob could hardly breathe, his left ribs hurt so much. Every breath he took was painful. After many hours of this, we asked his Dad and our neighbor, Forrest to come and give Rob a priesthood blessing. He was able to get a little sleep (in the family room on the cancer chair).

Saturday, we went to the doctor. The doctor gave him a good work-up and ordered an x-ray. About an hour later, the doctor told us that Rob has pneumonia and a cracked rib (presumably from said hacking).

We left there with three prescriptions: heavy-duty antibiotics, steroids, and an inhaler to help open his airway.

Today, Sunday, the steroids seem to be working. He can cough without being in excruciating pain (just a lot of it). He is exhausted from lack of sleep and very worn out from lungs working overtime, but hopefully, will be well soon.

We will be making an appointment to see his oncologist (per the family doctor's request) to make sure that the medicine she gave to Rob is correct for his 'situation'.

October's Scan and an Incredible Man

2010-11-14T17:07:00.005-07:00

Yes, I am aware that it is November. I am uncertain as to why I haven't updated Rob's blog to post an update on his latest scan. Maybe I am just tired. Hmmm.

Before I proceed, my sister-in-law's father, Phil, was diagnosed with the same cancer as Rob back in February of this year. He was unable to have surgery because of the stage the cancer was in. He, instead, chose chemotherapy. For a little while, he was doing well. In just seven months, he started declining. He died in October. We drove to his funeral with heavy hearts. I didn't know him well, at all, but to many, he was amazing: husband, father, grandfather, County Sheriff, Utah Highway Patrol Officer, neighbor, and friend.

The funeral was incredible. There was such an outpouring of love for this man. There were so many uniformed officers, we thought that if there was a time to wreak havoc in a small town, that would have been the day, since all the police force seemed to be at his funeral. At the grave site, a 21 gun salute was heard, bagpipes were played, a police helicopter flew overhead and then nearly landed, and then there was a last call. A woman's voice was heard on the walkie talkies (not sure if that is what they call them) to salute Phil.

It was heart-wrenching to see the sorrow from Phil's family. He was so incredibly loved by so many people.

Maybe that is why I haven't written. Too many emotions. Needed time to process...

So, Rob had a scan the first week of October. Essentially, the cancer is growing. Not doubling, but thirding (is that even a measurement???). So that is terrific news! Growing, yes. Doubling, no.

Most things in life you want to grow...your garden, your children, your bank account. Cancer? Not so much.

One thing that is interesting about his last scan is that several of the cancer blobs are starting to join together. Siamese twins? Perhaps they are lonely and just feel the need to touch one another. I don't know. Wacky...

For the last four weeks, Rob has had a fantastic headache. Just one that is annoying enough to notice that it is there. Like a mosquito buzzing around your head, but every time you turn to swat it, it flies beyond your field of vision.

A week ago, we were going to run to the grocery store and Rob got out of his 'cancer chair.'

(for those of you who don't know, that is a Lazy Boy recliner that Rob's brother, Gregg gave him right after his first surgery - so he could lie in a semi-horizontal position at night and breathe)

As he got up, he held onto our big curio cabinet and then proceeded to faint. After he fainted, he passed out.

Let me tell you. That was very, very exciting. It scared me to death! (No pun intended.) As he was falling, apparently, he caught his little toe on something and managed to dislocate it. (It is bruised still!) At any rate, after my heart rate slowed a bit, we were able to access any damage. Other than the toe, he was fine.

I rang his oncologist's office on Monday. They wanted him to go in for a scan of his brain. (Lung cancer often metastasizes to the brain and/or bones.) We checked the report later that day. Luckily, there is nothing special about his brain (and I mean that in the nicest way).

Again, this just solidifies my opinion of the man. He is A. B. Normal. There is nothing wrong with him, but he faints. Maybe too much excitement at the prospect of going grocery shopping.

As a side note: he hasn't fainted before that incident nor has he fainted since. No worries, he will not faint during staff meeting. He is NOT a ticking time bomb.

By the way, two weeks ago, we celebrated his 40th birthday! We are so incredibly grateful for the 5.5 extra years we have been given with him. We are so blessed!

Do You Know What Today Is???

2010-07-26T20:20:00.005-06:00

It was five years ago today that we received the news that Rob had cancer. What a monumental day.

All I can say is that it has been a glorious and beautiful and fantastic five years. (A little scary at times, to be truthful.)

We have been given a HUGE miracle. Most lung cancer patients rarely live past two years. Even fewer live to five years.

I know that I am incredibly grateful for Rob and his life and example - I think that there might be a few others as well. May he live another five (or so) more years.

Slowness in Updating

2010-07-19T20:08:00.004-06:00

I am a little slow in the uptake. Rob had his scan two weeks ago. I know. I haven't fallen off the face of the earth - I have just been abnormally tired. I am sure that you have been waiting with bated breath....

As you are well aware (or not), every scan Rob has had over the last year - his tumors have doubled in size as well as new tumors developing.

You may not know that Rob and I ran a little experiment during the three-month hiatus. We swore off refined sugar. No, this was not something that the doctor recommended. I was doing a little thinking about those pesky tumors. When he would go in for his PET scans, Rob had to drink glucose prior to the scan. The glucose would then head straight to the tumors - they love it. So, it made sense to me that tumors like sugar.

It was not sensible to exclude all types of sugar, so we just kept it to refined.

We got the scan results back from Rob's doctor. The cancer grew, but didn't double - it was more like 60% instead of 100% (that is good, right?). Additionally, there were no new growths. He still has all the previously grown tumors, but nothing new (that is good, right?).

So, since nothing earth-shattering happened with the cancer growth (or lack thereof), Rob decided he wanted to go back on the sugar wagon. He has been dying (no pun intended) for a chocolate bar for some time now. Needless to say, we have been getting a few sugar-related headaches. I think that I felt better when there was no refined sugar in my body. It is not fun to come back down from a sugar-high.

We are thinking about the possibility of chemo in the future. However, we have to think about the statistical possibility of it doing nothing and weigh it against the side-effects. (It will not cure him, but it could slow things down.) We have a whole-lot-of-thinking to do in the next while. If you have any extra Thinking Caps, send them our way! : )

Amazing Friends

2010-05-05T13:52:00.001-06:00

Yesterday was a lovely day. My friend, Ann, took me and our friend, Penny out to lunch. We walked over to the Lion House and had a terrific lunch. Afterward, Ann said that she wanted to show me something in her office. We walked into it and she said to me that she and Penny had something for me. Of course, I started crying the second I saw what it was. Click on the picture to get a closer look...

Penny had asked me for some pictures of my family about six months ago. She told me not to ask questions. Honestly, I forgot about it. This is why she wanted them. Ann purchased the material and Penny pieced and quilted this AMAZING quilt together! The colors are PERFECT! They are bright and cheery. Orange is Rob's favorite color, so not only the pictures be a great reminder of him, but the colors will be, too!

Words cannot even express how much I appreciate this amazing gift. This is something that our family will cherish forever! I am blessed to have such thoughtful friends. Ann and Penny - you rock!

April 2010 Update

2010-04-07T21:41:00.006-06:00

Cancer is lame. It is no respecter of persons. It doesn't care whom it attacks. It doesn't differentiate between hair, skin, or teeth color (hehehe).

It can be all-consuming, if one allows it to be such. One can focus all of one's energy on this nasty disease and make it the center of one's life. Conversely, one can choose to not allow the cancer to spread through every facet of one's life and only take days at a time to mourn the reality of what it means.

The latter is what we really try to do at the Finlinson household. I really do have my days (really). Rob has his days. Our beautiful children have their days. However, the best thing that we do is pick ourselves up and try to not focus on this hiccup we are having (you know, the cancer).

Some of those days rotate very strongly around when Rob has his scans. Well, let's be honest here. About three weeks prior, I get very anxious. A few days before the scan, I am even more anxious (is there even such a thing?). He gets the scan, we look at the results (thanks Intermountain), we wait a few days, we see the doctor, we schedule more appointments for another three months down the road. We then relax for a time. Then the whole process starts up again. Wheeeee! Isn't this fun?

There is a great song by Tim McGraw (no, in case you are wondering, I am not a fan of country music, but someone told me about this song) called "Live Like You Were Dying." The basic message of the song is that we don't know when this life will end, but we need to take it by the reigns and make the most of it. Enjoy our moments whilst we have them; don't look back on our lives with regret. This is what we have been attempting the last 4.5 years.

Something I tell my kids (much to their annoyance): "make your own magic." (Well, mostly, I tell them this when they tell me they are bored, but it works for this illustration.) We are making our own magic. We are spending time together, limiting our outside distractions to only what we want, playing a lot of games, talking, reading scriptures, praying, snorkeling, cross country skiing (well, Rob and the kids and their aunt Tarali - I have been too cold lately to go). We are making the magic that will be remembered (hopefully) by our children as happy times. We are living like we are dying.

We have had such an incredible blessing. This cancer has been a blessing. Can we even say that out loud? It is has been hard, don't get me wrong. Heart-wrenching hard. We have been given a gift of seeing our mortality and choosing how we want to spend our time. Our family has grown so close. Our family, our extended families, friends, church family, co-workers, and strangers have been touched by this cancer. Relationships have been strengthened. We have seen people band together in solidarity to pray for us, to make us meals, to pat our backs, hand us tissues, give hugs, and just listen. We are not the only people benefiting from this - those that are serving us are benefiting as well. I see the strength that comes to those that are trying to give us strength. The love, the caring, the empathy. We are blessed. They are blessed. You are blessed.

Our kids are all reacting to Rob's cancer differently. Jacob (13) is a bit angry. He is at a difficult age anyway and thinking about losing his dad is unthinkable. Gabrielle (11) just says, "This is life, there is nothing to do about it, so I am not going to think about it." Noah (8) holds on to Rob like he is going to be whisked away at any moment. The hugs he gives Rob would just break your heart. For the most part, cancer and their dad go hand in hand (in their mind). Jacob was Noah's age when Rob was first diagnosed. Gabrielle was six and Noah was three. Luckily, Rob has looked good for most of it. Not sickly...

Are you wondering whether I am going to update you on his scan?

All three remaining lobes still have cancer in them: (check)
Tumors doubled in size from December: (check)
New spots showing up: (check)
Scan in three months: (check)

Well, it seems as though it is business as usual (well, business with a bit of stress from a lot of people, NOT including myself and Rob). Nothing new - same as last time. Doubling, more/new, three months. (Just think, you could have skipped to this paragraph and found out all you wanted to know rather than wade through the rest!)

If there is any new information between now and July (like pneumonia or someone yelling "Bring out yer dead" in front of our house), I will update the blog. Are you on pins and needles?

Have a fantastic three months - minus any stress and anxiety!

With love, gratitude, and appreciation,

j

December Scan Results

2009-12-18T10:15:00.003-07:00

Hey everyone. Did you think that we fell off of the face of the earth?

Rather than posting "He is still breathing" over and over again, I thought that I would just update when there are changes (i.e. when he has scans or when he stops breathing).

Monday, Rob had his 3 month PET scan. Yesterday, we met with Dr. Greg Litton (oncologist) to discuss the scan.

The scan showed some increasing of the scary masses I posted about in September. Additionally, there are more of said scary.

In essence, he said that Rob is not dying right now. Phew! (I guess the fact that the only thing is, is that he is tired, but still breathing is a good indicator...) He is not curable, but we are looking at different treatments further down the road to slow the growth of the growthssss (heehehe).

Rob will have another scan in four months.

Phew??

2009-09-17T11:27:00.003-06:00

Well. Yesterday we met with Rob's oncologist.

The nasty that was on the right lobe is almost gone - what the?? I know! Amazing. We are going to celebrate that and not think about it (well, for at least another three months).

There is a bit of nasty on the left lung now. The doc is concerned about it, but the three of us decided not to think any more about it - until his next scan in December. At that time he will have a more detailed CT to help identify what exactly is showing in his left lung.

Right now, we are just counting our blessings and are sooooo grateful for the many prayers that have been said in Rob's behalf.

We are enjoying each other's company and are making many memories - regardless of what will happen. We don't want to take the time we have for granted.

PET Scan tomorrow

2009-09-13T15:12:00.003-06:00

Tomorrow, Rob will be going to IMED for his PET scan. He needs to be there bright and early.

He is taking a nap now. Today, he had a full day: got up at 7:30, ate breakfast, went to church (3 hours), and ate lunch. Just like most people, he is taking a Sunday afternoon nap.

I think that some of his tiredness is rubbing off on me. I am exhausted. I am ready for a month-long vacation with nothing to do, but sit on a beach somewhere.

Rob's family will be in town over the next week and one-half. One-third of his siblings live in Florida, so it will be fantastic to see them. Hopefully, Rob can keep up with the festivities and not sleep mid-sentence (in case you are wondering, he is not that bad, yet - but he has an uncanny ability to fall asleep during an action-packed-nail-biting movie).

Anyway...We will be meeting with his oncologist on Wednesday. I will update then.

X-ray Vision

2009-08-12T11:40:00.003-06:00

As you know (or don't), Rob had an X-ray and met with his oncologist this week.

As Rob and I thought, there really wasn't any reason to get our knickers in a twist regarding the X-ray. In June, the spots that had magically appeared on his PET scan were relatively small - didn't really see much on the X-ray. I think that the X-ray was more like a security blanket for all parties involved.

So, my thinking is that since X-rays are not as sensitive as say, for instance, PET scans, they will not show as much. (My friend Ann told me that an X-ray is how lung cancer used to be diagnosed - aren't we glad that we have much better tools nowadays?)

The plan for the next little while is to get another PET scan in September and see what is going on in that itty-bitty thing we call Rob's right lung.

P.S. He is still breathing. He's ALIVE!

I'm Not Dead Yet

2009-07-05T15:27:00.004-06:00

On the way home from church today, Rob said to me, "I think that people think that I am close to dying. They seem surprised to see me walking around. They think that I should be on death's bed because the cancer is back."

I was talking to Elaine about it and she got the same feeling while talking to others. I was concerned that I said something in the blog, that he has one foot in the grave and the other is hanging perilously close to the edge. She assured me that I have not.

I know that recurrent cancer is not always a good thing, but seriously, he is not dead yet.

Dead men don't hike to Lake Katherine (or is it Catherine???) (three-hour round trip hike - uphill both ways! hehehe). We did this on Friday. He did, however, take a nice nap when we returned - but he did hike well.

To illustrate this, please read the the following quote from the immortal movie "Monty Python's Holy Grail:"

"The Dead Collector: Bring out yer dead. [a man puts a body on the cart]
Large Man with Dead Body: Here's one.
The Dead Collector: That'll be ninepence.
The Dead Body That Claims It Isn't (Rob): I'm not dead.
The Dead Collector: What?
Large Man with Dead Body: Nothing. There's your ninepence.
The Dead Body That Claims It Isn't: I'm not dead.
The Dead Collector: 'Ere, he says he's not dead.
Large Man with Dead Body: Yes he is.
The Dead Body That Claims It Isn't: I'm not.
The Dead Collector: He isn't.
Large Man with Dead Body: Well, he will be soon, he's very ill.
The Dead Body That Claims It Isn't: I'm getting better.
Large Man with Dead Body: No you're not, you'll be stone dead in a moment.
The Dead Collector: Well, I can't take him like that. It's against regulations.
The Dead Body That Claims It Isn't: I don't want to go on the cart.
Large Man with Dead Body: Oh, don't be such a baby.
The Dead Collector: I can't take him.
The Dead Body That Claims It Isn't: I feel fine.
Large Man with Dead Body: Oh, do me a favor.
The Dead Collector: I can't.
Large Man with Dead Body: Well, can you hang around for a couple of minutes? He won't be long.
The Dead Collector: I promised I'd be at the Robinsons'. They've lost nine today.
Large Man with Dead Body: Well, when's your next round?
The Dead Collector: Thursday.
The Dead Body That Claims It Isn't: I think I'll go for a walk.
Large Man with Dead Body: You're not fooling anyone, you know. Isn't there anything you could do?
The Dead Body That Claims It Isn't: I feel happy. I feel happy. [the Dead Collector glances up and down the street furtively, then silences the Body with his a whack of his club] (Rob has since banned all clubs in our home.)
Large Man with Dead Body: Ah, thank you very much.
The Dead Collector: Not at all. See you on Thursday.
Large Man with Dead Body: Right."

Surgery, again?

2009-07-01T20:20:00.004-06:00

We met with Michael Collins (surgeon) tonight.

Unless he is convinced that surgery will add longevity to Rob's life or cure him, he will not do it. He feels as though there is no reason to put Rob through the surgery again.

When Dr. Collins performed surgery in January, he made sure that the margins were clean (the known cancer and its surrounding area was surgically removed).

He did give us some hope: he is not convinced that one of the spots is cancer - it could be some healing from the parietal lining that was removed in January. We like hearing good news.

The plan right now is to wait until the beginning of August for the X-ray and in September get a PET scan again. Hopefully, things won't have grown.

He suggested that we talk to Dr. Litton (oncologist) and see about the possibility of Tarceva (remember the post about the nasty rashes because of this targeted drug???). He thought that even though Rob's cancer did not show the markers needed to utilize this drug, ten percent of the time it will work.

Based on the kind of odds that Rob has shown during the last four years, he would have to be included in the ten percent. Doncha think?

The Meet

2009-06-25T18:56:00.004-06:00

Rob and I met with Dr. Litton today.

He doesn't think that surgery will be of any benefit, but he would like us to meet with Dr. Collins to get his opinion. I plan on making the appointment tomorrow. (The 'spots' are in hard-to-reach places [one next to his heart], so he would have to perform a thoracotomy to get to them.)
Rob will have an x-ray done and meet with Dr. Litton in six weeks.
Rob will have another PET scan in three months.

That is all for now. I am really exhausted.

SUVs: No, We Are Not Getting a New Car

2009-06-20T08:21:00.007-06:00

I am not going to wax poetical. I am copying and pasting the 'findings' and 'impression' from the PET scan results.

FINDINGS: There is hypermetabolic activity noted at the site of multiple surgical clips along the medial aspect of the right lower lobe [the doctor is referring to his lone lobe - since the other two were removed, in case you are getting confused] where soft-tissue prominence is evident. This has a maximum SUV of 8.4 and is quite concerning for recurrent tumor. Additionally, contiguous with this site of abnormal activity islobulation of the posterior pleural margin on the right with associated hypermetabolic activity identified on the PET/CT scan with a maximum SUV of 6.2. One additional site of hypermetabolic activity is noted anteriorly along the pleural margin (image 107) where additional pleural-based lobulation is noted.
This has amaximum SUV of 5.2.

IMPRESSION: Hypermetabolic activity associated along the right lung base at the site of surgical clips and with the lobulated pleural thickening, predominantly observed posteriorly although a focus is also noted anteriorly. The appearance is quite concerning for recurrent/metastatic lung cancer.

Looks like we are going to get a biopsy or two.

Rob's comment was, "Looks like we've got a bunch of SUVs and it is not cars."

(SUVs are the level of uptake from the radiation - the higher it is, the greater chance of cancer. Last time, he had two sites with SUVs of: 5.5 and 3.7 [which, incidentally, they said that the 3.7 score was too low to be cancer, HA! Rob proved them wrong, didn't he?] and this time: 8.4, 6.5, and 5.2).

Hurry Up and Wait

2009-06-19T19:50:00.003-06:00

Can I tell you how difficult it is to 'hurry up and wait'?

With all of Rob's previous scans, the report was posted quickly and I was able to contact his doctor's office the next day to hear the findings.

His doctor's office called me today at and told me that the report has not posted because the nuclear medicine radiologist hasn't looked at the scan.

So. We wait. Hopefully, he will know that there are a bunch of people waiting on pins an needles for him to read, dictate, and post his findings.

Dog, Snake, and Rat

2009-06-16T10:01:00.005-06:00

You are asking me, "What is with the title of this blog?"

Oh, oh, oh! Let me tell you. A dog, snake, and rat have something in common. They are all pets. Yes. Rob will be getting his PET scan on Thursday this week.

In my rush to get the information posted last night, I didn't really answer the burning questions that I posed to the doctor's office.

We don't know whether his cancer is back. "It is never a good thing when something that size shows up in a scan. It would be a good idea to get a PET scan to see what kind of uptake the nodule shows," said the PA to the worried wife.
Yes, the chances are pretty high that he has a broken rib. Remember the pneumonia he had in May? Well, with all of the coughing and hacking he did, I'm surprised that he didn't break more of them. Poor guy had to hold onto his side for dear life during every cough, for fear his remaining lobe would shoot out through his healed incision.
Liver? Don't know. Hopefully, there is no cancer in that organ. The PET scan will let us know how much metabolic activity is happening there.

I had asked the oncologist PA whether we should plan on a biopsy. She said that it really depends on what the PET scan shows, but it probably would be a good idea to just plan on it - if it doesn't happen, great!

So, thank goodness for pets. They tend to calm us when we are stressed. (Or is it the other way around?)

Deja vu?

2009-06-15T19:59:00.004-06:00

"Ahhhhh!"

No, that is not me breathing a sigh of relief.

So. As you may remember from the last blog entry, Rob had his three-month CT this morning. Luckily, we were able to read the report online. Unluckily, we don't speak 'doctor.'

Let me relate to you some of the phrases that were in the report:

There is a nodular feature at the periphery of the right upper lobe best seen on image #34 and this measures 5 mm in diameter. There are a few associated linear densities. This was not definitely visualized on the prior exam from 01/07/09. There is some volume loss and a few coarse linear changes in the right base and there is a tiny effusion at the right base. The left lung is clear and no left effusion. So, he has more cancer?

On the prior exam there has been resection of a portion of the posterolateral aspect of the right 7th rib. The remaining ribs had appeared intact. On the current exam again noted is resection of the right 7th rib but there now is a fracture with some displacement in the 8th rib posterolaterally and then a nondisplaced fracture through the medial most aspect of the left 9th rib with some callus formation in that region. So, he has a broken rib?

A portion of the upper abdomen was included, and there appears to be an enhancing lesion in the lateral segment of the left lobe of the liver best seen on image #55. This was not appreciated on the exam from January 2007 which was a noncontrast exam. There is a questionable subtle low attenuating lesion in that region on the prior exam. On the contrast enhanced exam from 09/02/08 this was not seen. There is an old contrast enhanced CT of the abdomen from 12/30/05 and there is a subtle lesion in this region on that exam. Suspect this is a hemangioma though is not as well seen on that prior exam. (History: he did have a spot on his liver 3.5 years ago, but they thought it was just fine - so, is this getting bigger? Is it really cancer?)

Bottom line: what the, huh? Rob's oncologists office called me at 4:30 tonight to answer questions. (I called the office this morning upset, I guess six hours is a decent amount of time to call someone back when they are falling apart.)

Rob will be getting another PET scan (remember the drinking of nasty Kool-aid-type drink and then getting a super-duper powerful shot of radioactive isotope to see what kind of paranormal activity he has roaming around in his body?). We should find out soon when he will get his PET scan.

More information to follow.

Does this feel like deja vu to you?

Seriously.

The Weekend Countdown

2009-06-11T13:31:00.002-06:00

Today, Rob is going to give blood. This is something that he has to do prior to his CT scans to make sure that his liver is still functioning. (Heaven forbid something else breaks down, right? We already know that he is a defective model and since we forgot to purchase the extended warranty on him, we are out of luck. hehehe)

Just in case you were wondering what we are going to do the next week, I thought I would lay it out for you...

Thursday: 4 pm - give blood
Friday: all day - think about the scan
Saturday: all day - think about the scan
Sunday: all day - take a break from thinking about the scan - since it is a day of rest
Monday: 8:15 am - get the scan
Monday: all day - think about the scan
Tuesday: 9 am - Jessica to call oncology office to find out the results of the scan
Tuesday: until 5 pm - wait until the doctor calls back

Tuesday: 12 noon-ish - go online to myhealth.com (Intermountain's super-cool website that allows their patients to go and look up their some of their medical information, including, but not limited to, x-rays, scans, blood work, did I mention scans?) -- This will only work, if the radiologist gets it in the system ASAP, otherwise, see the above step.
Wednesday - July 31: all day/night - breath a sigh of relief, since everything will be just fine.

(He did go 3.5, well, 3.2 years without it coming back - so I am thinking that it would be abnormal if it came back this soon - RIGHT??? It has only been five months since his surgery.)

So, what I am trying to say is this: if you pray, please do so. If you don't, think about doing so.

What is even better than this? Doing it again in September! YAYAYAYAYAY! (I can hardly wait.)

There and Back Again

2009-05-29T13:39:00.003-06:00

Rob went to Germany had productive meetings and had a delightful time. The best part of the whole trip is that I went with him! We didn't decide until four days before his departure that I was going to accompany him.

The flight was less that it would cost to go from Salt Lake City to New York - so how could we pass it up?

It was time well spent and I feel very much needed - for both of us.

By the time it was seven most nights, Rob was exhausted from walking all over (cobblestones, need I say more?) - but we had a fantastic time being with each other.

Two Months Later

2009-05-12T08:36:00.004-06:00

Well, in case you are all wondering, Rob is still breathing. The last two months have been a little rough what with all his coughing and hacking. He had pneumonia. He ended up being on antibiotics two different times. He is almost done with this last course and is feeling better.

He is still tired (you should see the naps that man can take and then still go to sleep at night - it is amazing!), but he is working and doing things around the yard (planting a garden so we can enjoy the fruits of his labor in the summer).

Rob is going to Germany on Saturday for a super-fast trip for his work. I think that he will be in the plane longer than he will be in the Vaterland (Fatherland). I told him that I want him to bring me home a dirndl (see picture below). This one only costs $269! What a bargain!

No need to worry about whether he will get sufficient naps on the plane. I am sure that he will.....zzzzzzzzzzzzzzzzzz

Back to Work?

2009-03-31T20:59:00.004-06:00

Well. Last week Rob worked half-days. He says that he is doing well. So, when he falls asleep at 8 pm - I tend not to believe him.

Yesterday and today he worked a full day. We shall see how early he passes out at the end of the week.

Does anyone want to take any bets?

Someone gave me a great idea to change the blog name (thanks, Rustin!), since Rob is not going to receive chemo. His idea was:

breathlessinsaltlake.blogspot.com

Another idea is:

lobelessinsaltlake.blogspot.com

Does anyone want to put in their two pieces?

Good News & Markers

2009-03-16T20:18:00.007-06:00

We've got some good news and some good news...

Rob's CT came back clean! See! No sense in worrying, right??? (We shall see how well I am doing before the next scan in June.) The report was hilarious: "There is evidence for prior right lower lobe and right middle lobe resection." Really? What gave that away?

The other good news (or bad?): Rob does NOT have the EGFR marker in his tumor. By the way, if you are interested, the tumor was sent to the University of Colorado Health Sciences Center. The actual wording was: "This tumor expresses EGFR weakly by immunohistochemistry and is FISH negative. No predictive mutations are identified. This tumor would appear to be unlikely to respond to EGFR blockade." EGFR blockade is the Tarceva (not having to take that is the good news, or if you are thinking the other way, not having to take that is the bad news).

If you are wondering what FISH is, it is not an underwater thingy that has gills and swims constantly. It is "fluroescence in situ hybridization" which means it is a process which looks at the internal structure of the cell.

So, we have made the decision to not have adjuvant chemotherapy or radiation. At this point, Rob will have CTs every three months, CTs with a PET scan every eight months. The PET scan picked up Rob's second tumor whereas the regular CT did not. However, PET scans often have false positives - no need for the added stress of thinking there is a tumor when there really isn't. Regular CTs have a finer resolution.

Are you thinking, "Well, if the regular CT has a finer resolution, why didn't it show the second tumor?" Yeah, that was my thinking as well. Apparently, the tumor was too small to see on a regular CT, but it showed up with 'hypermetabolic activity' (after Rob was pumped full of radioactive isotopes). I guess anything will show up if one has enough radioactive materials in their body.

Rob hopes to start work soon, if his boss and co-workers will have him back : ). (Call me if you don't, just in case, so we can let him down lightly...) hehehe.

He would love to get back into school as well - provided he can make it through an eight-hour work day and an additional seven hours of school/study time. Can you believe the schedule he was keeping? Yeah, neither can I. It has been fantastic having him home and around (even when he was taking many, many naps).

We are so grateful for the many, many prayers, thoughts, cards, meals, and calls on our behalf. We love you and feel so blessed to have so many wonderful people in our life!

We are not safe yet, but we are glad that the surgery part is over and that there is no chemo or radiation in the near future. YAY!!!!

Blood Draws & Scans

2009-03-12T11:18:00.002-06:00

Yesterday Rob had some blood drawn because of his upcoming CT tomorrow. He has to get his levels checked out to see if he has any elevated levels (cancer, radation damage to his kidneys - from his constant CTs).

Tomorrow morning he will go have a CT to see if there is any cancer present. Funny thing, I am not even concerned about it. I figure that there is no way that any cancer could show this early on. Right?????

Before, I would have SO much anxiety two weeks prior to the scan and I would call the doctor's office first thing the next morning to find out the results, feeling much better afterward.

Rob's work called and invited him to a lunch meeting (a man has come into town to discuss the current projects). He sounded excited to have something to look forward to and to get out of the house. He left not long ago - yes, he drove himself! It will be great for him - thanks, Sarah!

It's Not A Tumor - say it with an Austrian accent (think 'Kindergarten Cop')

2009-03-04T22:09:00.008-07:00

Rob is continuing to gain strength. He still gets tired very easily, but tries his hardest to be fully functional while around the kids and me. That sounds really bad, doesn't it? Let me rephrase. He is very tired. If he doesn't take a nap, he wears out easily. He is generally ready to go to bed around 8:30 pm. I guess it will be easier for him to retire at a decent hour next week with the arrival of Daylight Saving Time.

Today he played "Phase 10" with Gabrielle - he told her that she was just like her Mom (that's me). She said, "Thank you!" Yes, she beat him at the game, just like I do. That was the highlight of my day!

My boss, Brent, heard back from his colleague at MD Anderson. Brent had outlined Rob's history, surgical, and pathology reports and other necessary information. This was the colleague's response:

No additional advice internally. It is as I suspected. No additional benefit from adjuvant chemotherapy.

Brent pointed out that the key phrase is "No additional benefit from adjuvant chemotherapy." He assured me that just because they are saying 'no additional benefit...' does not equate a death sentence. Well. That's good. Not quite ready for that juncture in life. He also said that doctors will often throw everything in the book at you to get you better - because they can - not because it is best for you.

At some point, we have to decide whether the treatment outweighs any possible benefit.

I have these nagging thoughts in the back of my mind, (I wonder how many people would feel this way, if they had to make this decision) that if we do nothing, it implies we are giving up, giving in to the cancer. Analytically, I know that by just being seen and having scans it does not mean that we are giving up. I just know how nasty the treatment is and what statistics are for another recurrence, etc.

We still have to wait for the tumor to come back from Denver (or at least the report - do you think that they will stick the tumor in an envelope and mail it back to Salt Lake? Hmmm, think on that. FRAGILE - do not bend, do not squish.).

I know, from watching Rob, that chemotherapy is an ugly beast, just waiting to take hold and consume its prey. It is awful. I think that he is tired now. Right. Chemotherapy exhaustion is just as bad, if not worse. Not to mention the side effects.

So, what does that mean? Basically, MD Anderson doctors are giving us the same information that the Cancer Review Board at Intermountain gave us. They just don't have enough data, enough science, to really make an informed decision to pass on to us.

So, we wait for the tumor.

While waiting, you could read the following story: Rob could have a worm in his lung instead of a tumor...THAT would be funny!

Slacker

2009-02-26T10:06:00.002-07:00

It has been pointed out to me that I have been negligent in updating my blog.

Other than saying "Rob is doing well, he continues to eat, sleep, and poop." I don't know what else to say. Hehehehe (again, like a baby). Well, that's not entirely true.

He is having lovely walks up Millcreek Canyon with his Dad every day to get his lung (and legs) working again. This morning, I spoke with Elaine (Rob's Mom) about the walk Steven (Rob's Dad) and Rob had yesterday. She had a conversation with Steven and asked if Rob had to stop at all during the 'walk' (more like hike) and he responded, "No, but I wanted him to." That is so like Rob - nonstop working until the task is done. He is a work-horse.

Good work, Rob! I don't think that his lung capacity will be what it used to, but I think that he will try his hardest to get it as high as he can. Breathe Deep!

Belated Update or No New Information

2009-02-20T21:46:00.007-07:00

DISCLAIMER: I started this entry late on Friday. I had to go to bed before finishing. I was going to complete it on Saturday and then again on Sunday, but since today is Monday, you can see that I didn't get around to it - hopefully, my mind will cooperate and I will sound somewhat intelligible. This entry is long: BEWARE...

It was a very long day today. We started off the day with a nice long meeting with a geneticist, Janet Williams, whom so graciously agreed to meet with us. After giving the medical history of Rob's family, it was determined that there really isn't a familial correlation with the cancer. They cannot rule out our children being high risk, but they also cannot rule out them having no risk. (How is that for an answer?)

At this time, there are no studies (that she could find) in which Rob can enroll. However, there is one study in which he could qualify if he has at least two other members of his immediate family with the same cancer. I may be completely off base, but I am guessing that none of his siblings or parents want to volunteer. (Let me know if you start having back pain, weird breathing, or other known lung cancer symptoms such as coughing up blood. We know an amazing pulmonologist.)

After the informative meeting, we met with Rob's radiation oncologist, John Thomson. Thursday evening, he held a meeting with other radiation oncologists from Logan to St. George (the northern to southern regions of Utah - in case you are not familiar with our geography). After presenting Rob's case, there was some discussion as to what these doctors would do, if Rob was their patient. They voted six to one in favor of NOT administering radiation again - at this time. That is to say, they are not ruling it out for the future.

I suppose that, that is good news??? When administering radiation, they are very careful to only use a 'safe' (I use that term loosely) levels for treatment. Last cancer go-round, Rob's heart received a quarter of that safe amount and his spinal column received half of the amount. Since, more than likely, they would radiate the same area, it would be a little risky (this is me talking, not the doctors).

To top off the day, we met with Rob's oncologist, Greg Litton. We got a little more information on the tumor that was sent to Denver. 'They' are looking to see if the tumor has certain EGFR markers:

EGFR

The protein found on the surface of some cells and to which epidermal growth factor binds, causing the cells to divide. It is found at abnormally high levels on the surface of many types of cancer cells, so these cells may divide excessively in the presence of epidermal growth factor. Also called epidermal growth factor receptor, ErbB1, and HER1. http://www.cancer.gov/templates/db_alpha.aspx?CdrID=44397

If Rob's tumor has these markers, there may be a targeted medicine that he can take. It is called Tarceva - targeted means that the drug is meant for the tumor only; whereas, chemotherapy targets fast dividing cells (hair, tumor, hair, other organs, hair). One of the side effects is that he will have a face, chest, and back like a teenager, though (severe rash that looks a lot like acne).

Basically, we have a few options at this point:

1. Follow (if there are no markers)
2. Chemo (if there are no markers and/or if there are markers)
3. Tarceva (if there are markers)

So, needless to say, Rob and I have a lot to think about in the next few weeks. He still has another four weeks before he is completely healed and is able to tolerate any kind of treatment. His oncologist wanted him to keep the March CT and appointment (we scheduled these in September) and perhaps we may have the results for the EGFR mutation by then.

On another note, my boss, Brent James, has contacted his colleagues at MD Anderson (the highest rated cancer center in the United States) to see what their first thoughts are. At first glance, they have no data to suggest anything. (This sounds vaguely familiar...).

I said to Brent, "Wow. Not surprising, right?" His response was that it isn't, but it is. MD Anderson sees so many more cancer patients than us (they are located in Texas) - he was hoping that they might have some more data than Utah. He has asked them to look at Rob's case more closely and to see if there are any trials for which he might qualify. He will forward the response to me.

Below are a few links to find out more about the drug Tarceva, if you are interested.

EGFR Gene and Lung Cancer Drug Tarceva

Biomarkers Found That Predict Lung Cancer Patient Response To Therapy

Tarceva Side Effects

All Tired on the Western Front

2009-02-16T19:10:00.003-07:00

Rob is like a newborn baby. He is awake for a few hours and then sleeps for a few hours. Ahhh, it is so cute.

This is where the similarity ends, though (in case you are wondering).

He is enjoying his time off work. Nice vacation, right? (Too bad we aren't really somewhere WARMER!!!) Actually, I think that he would much rather be going to work and school now.

Not much to report now, other than the sleeping and the healing and the sleeping.

We hope to have appointments very soon with the oncologist & radiation oncologist.

Abby Normal

2009-02-12T19:48:00.002-07:00

Let's start with a joke:

What do you get when you have a room full of specialty doctors discussing Rob's case?

Answer: stumped

HAHAHAHA! Funny, huh? I still cannot stop laughing.

OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...

* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now

So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.

(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)

Long enough wait?

2009-02-09T19:26:00.003-07:00

I apologize profusely for the lag between the last post and this. It has been the longest week EVER.

On a pain scale of one to ten, Rob's pain was an 18. Needless to say, he was OK with the dying option last week. It was really just awful watching him have so much pain and not really be able to do anything for him.

He has cut back on his pain meds (seriously? I think that he is a masochist). See justification below:

OK. After a trip to the ER (six blissful hours) last week, Rob was sent home with three prescriptions. One being the medicine that docs prescribe when they are preparing patients for a colonoscopy. His high dosage of narcotics for two weeks basically rendered his bowels useless. (Is this more information than you wanted to hear? I know that EVERYONE that is reading this, loves Rob, so in essence, you DO want to hear, right???) He had severe nausea and he looked a lot like Homer Simpson (think: HUGE stomach).

Well, yesterday was a great day! His pain level was at a tolerable level - he says that he refuses to rate it anymore. Things are moving again (hehehe). All systems, go. He is feeling like a human being once again. (Thank goodness!)

Tomorrow the Tumor Review Board meets (we assume once again). We will see Dr. Collins on Thursday this week to find out the verdict. Ahhh! The suspense is killing us!

Here is a funny story that will make you laugh: Noah was rummaging through Rob's closet where he keeps his CamelPak (a backpack that has a container for water with a long clear tube that connects to an apparatus that you drink from while hiking). He pulls out the long clear tube and says, "Hey! Here's Daddy's chest tubes!" He then placed the clear tube next to his side and made a face that looked like he was sick and included his tongue hanging out. Rob and I thought it was pretty funny.

Down the hall and to the right

2009-02-03T20:32:00.003-07:00

Rob is adjusting nicely to his new home. He doesn't seem confused when we tell him where the bathroom is located. (hehehehe)

Apparently, the Tumor Review Board was NOT held today as orginially thought. It will be held next week (unless of course it isn't). Regardless, we will have to wait until our follow-up with Dr. Collins.

Even though Rob will have to be fully recovered (six to eight weeks) before receiving treatment, it is driving me crazy with the waiting. Funny how one little piece of information is so powerful.

Home Again

2009-02-01T20:16:00.002-07:00

Finally. About 2 pm, Dr. Collins came in. After a discussion as to whether Rob should stay another day while figuring out his pain medicine or go home with an increase in his pain meds and hope for the best, we decided that Rob should come home.

After figuring out everything (apparently, getting high-profile narcotics is difficult), getting Rob dressed, out to the car and picking up other meds at another pharmacy (IMED didn't have everything) we were able to have a little family reunion around 4:30 tonight.

The kids were so excited to see Rob. The dog just came and sat by Rob's feet (this is something she doesn't do - she likes to run around too much). It was fantastic. It has been great having him home.

The Tumor Review Board meets on Tuesday, but we don't see Dr. Collins for two weeks. We may not have any information as to what Rob's treatment will be until then (unless of course, we do).

I am grateful to have our family under one roof again.

Day Twelve

2009-01-31T18:12:00.002-07:00

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.

Day Eleven

2009-01-30T08:27:00.002-07:00

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.

Day Ten

2009-01-29T10:35:00.005-07:00

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!

Day Nine

2009-01-28T18:29:00.003-07:00

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.

Day Eight

2009-01-27T13:23:00.003-07:00

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.

Day Seven

2009-01-26T20:38:00.002-07:00

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).

Day Six

2009-01-25T15:12:00.003-07:00

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.

Treadmill

2009-01-24T15:49:00.004-07:00

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.

Temples, Tucson, and Pathology Reports

2009-01-23T14:40:00.004-07:00

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.)

ICU - Day LAST!!!!

2009-01-22T13:32:00.003-07:00

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

ICU - Day One, Continued

2009-01-21T20:22:00.004-07:00

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

2009-01-21T11:43:00.005-07:00

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???)

Dessert

2009-01-20T16:55:00.004-07:00

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

2009-01-20T15:33:00.003-07:00

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

2009-01-20T13:57:00.003-07:00

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

2009-01-20T10:41:00.008-07:00

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...)

Getting Ready

2009-01-15T21:33:00.002-07:00

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

Surgery Consult

2009-01-14T19:36:00.009-07:00

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.

PET Scan

2009-01-13T18:44:00.003-07:00

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...

The Beginning

2009-01-12T18:26:00.001-07:00

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).