Florida and Distress

MORE TRAVEL: A few days after we returned from Texas, Rob said to me, "I think we should go to Florida." This meant: visit Rob's other out-of-state brother. Generally, as a rule, in the 18.5 years we have been married, if we go somewhere, ~90% of the time, it is me initiating said travel. Of course, this was a little surprising to me. I took him very seriously. (Also, I am not one to turn down traveling.)

Rob and I looked at dates we could travel without disrupting the kids' school too much. We decided to go over Spring Break in April. In the middle of January, I thought it prudent to have a conversation with Barb, Rob's hospice nurse, to find out what she thought about the dates we chose, before we locked in the dates. Barb told me that it would be better to travel sooner than later. He was feeling well enough then and you never know when things may change. Whenever a patient's medicine is changed whilst on hospice, that means things are progressing. Rob's medicine had been changed three times between December 1 and the middle of January, she thought that he might not be in a position to travel (i.e. too tired, too sick). She said that sometimes she is wrong. She loves it when she is wrong. However, she thought we should plan our trip earlier and that regardless of what happens in April, we would not have any regrets.

We decided to travel over President's Day weekend - the kids would miss two less days of school. When we told the kids that they would be taking a trip to see their cousins in Florida they were so excited! We let the kids' school teachers know and they responded favorably. Gabrielle's US History teacher called me and told me that if she keeps a daily journal of the things she does, what she liked, what she learned, and includes a few pictures that will be all she needs for his class to be caught up. Isn't that terrific? I love it when creativity is used.

We were fortunate to spend a week in February with Rich, Sharon, and their sweet children in Hollywood, Florida. It was so incredible. We went to the beach (one mile from their home) three or four times, we went canoeing in the mangroves, and visited an amazing Japanese garden. The best part was spending time with the Florida Finlinsons. The 80 degree weather was also a bonus. When we returned home it was 30 degrees. Blech.

HEALTH UPDATE: The last few nights we were there, I could hear Rob's breathing changing. He woke up several more times during the night with trouble breathing. We returned home on late Wednesday, February 22. Thursday morning he was clearly in distress. He couldn't catch his breath. His heart rate was 110 bpm resting. His oxygen levels were 85 and he had a fever. His hospice nurse came in and gave him a once-over and increased his meds. She said that if his fever got higher then we would start on an antibiotic. It was not a good day.

Friday, the 24th, he was worse. He couldn't walk five feet without being completely winded. He was panting, trying to get some air. His fever reached 102.1. I called the hospice nurse again. She arrived later that day and we had a good talk. Bottom line: more liquid drugs. No, he will not become a drug addict. When one cannot get enough air the body creates excess endorphins. Then, it is more difficult to breathe because of the anxiety created. The liquid magic helps to relax the muscles in the lungs, opens them to get air. Barb said the we need to stop trying to figure out WHAT is wrong (i.e. pneumonia) and focus on what we can DO to help him (i.e. liquid magic).

Sunday we went to church. Rob was able to stay for sacrament meeting. He was exhausted and I walked him out to the car so I could drive him home. He had to hold on to me for support. We walked at a glacial speed. It was like taking a stroll with a 90 year-old man. The best is when people say, "Wow, Rob! You look terrific!" Let me tell you. He did not look terrific. He looked awful. Why he thought he needed to go to church is beyond me; I would have stayed home.

Honestly, it was very frightening. I thought he was going to die last weekend. He looked terrible. He felt terrible. Distress is a word used by health care professionals when someone is in that state. That about sums it up: both he and I were in distress.

Thursday, March 1, was really the first day in a week that he felt a bit better. Yesterday we had a great visit with Jane, Rob's palliative care doctor. Turns out he had pneumonia. He still has it - it is lingering. He is still taking Levaquin (a heavy-duty antibiotic). He most likely picked something up in the plane to or from Florida. A plane is probably the worse place someone in an immuno compromised position could be - all that coughing, sneezing, blowing noses.

As always, we appreciate the love and support we receive from you.

xoxo

January 2012

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

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.