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.