The Mother of all Updates

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...

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!!!

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

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

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

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

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!

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

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

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

more

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.

1. Do nothing


2. 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.


3. 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...