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...