Hospice Patient and Its Misconceptions

For those of you out there who I haven't been able to reach out to recently, things have been pretty hectic in the Love/Olafson household due to my health.  A series of infections led me to become one of the latest in a long line of cancer patients to become a hospice patient. If you are like me, you may not even know what in the world hospice means exactly so here is a dictionary definition:

a. a health care facility for the terminally ill that emphasizes pain control and emotional support for the patient and family typically refraining from taking extraordinary measures to prolong life.

b. a similar program of care and support for the terminally ill at home.

I fall into category b of that definition.  There are many misconceptions though that come with the word hospice and the largest is probably that people instantly think of death.  I am not dying yet.  Just had a pretty tough week that led MaryEllen and I to re-think some of our options.  One of those options was taking a break from the rigors of chemotherapy and start taking advantage of the benefits of hospice.

(Garrett says he is too lazy to finish this post so this is MaryEllen picking up where he left off!)

We headed into the hospital in the first place because Garrett was feeling weaker and having hard time breathing.  After ten days receiving multiple blood transfusions and antibiotics for pneumonia and staph infections, Garrett is feeling better, but still has some shortness of breath.  We made our escape last Monday after learning about all the services hospice could offer and making a plan with their team to keep G safe and comfortable at home.  Waiting for us at home on our planned return day was an oxygen system, hospital bed and scheduled visits from hospice nurse to support me, Garrett and our families.  Hospice does not provide curative treatments, but they manage symptoms and are available to counsel us at all hours of every day.  Some people with terminal illnesses do get stronger and live longer that expected with the great care of hospice and can return to cancer treatments when they choose, this is what Garrett hopes to do.

We are very happy to be home and to know that we don't have to go back to the hospital because we have such great resources here!   

Chemo #4 + Platelets and sudden deafness! oy!

Last week Garrett had his 4th dose of gemcitabine and platlets fell again so we boosted them last Friday with a platelet transfusion and got more Neumega shots over the weekend.  This week we get off from chemo (yay!)  but we were so put off by the stand in doctor last week that we didn't get to talk about the new and perplexing symptoms bothering Garrett.  So we will go in this week to see his usual oncologist to catch him up and get on with finding answers. 

Over a week ago Garrett woke up from a nap with no hearing in his right ear... no pain or other symptoms.  The on-call doc during his blood transfusion the next day looked at it and referred him to an ear specialist who we went to see last Wednesday.  They tested his hearing and saw no physical signs of trouble from the outside, but found very little usable hearing in the right ear. If it is not related to his cancer or cancer treatments the hearing could recover over the next few months aided by steroids Garrett already takes for radiation damage  (when not related to any other ailment one-eared deafness like this is known as sudden hearing loss). We scheduled a head MRI scan for next week to check on the physical condition around the inner ear and nerves.  If all looks well there we can only wait and hope that the hearing returns on its own over time.

In the last few weeks Garrett also noticed a chip in one of his teeth.  Some of the cancer treatments (especially Zometa) have the potential to weaken teeth so we'll go soon to get this tooth smoothed out and see what options they might have for strengthening the rest of his teeth.  We'll aslo consider stopping Zometa for good since his teeth are pretty important for getting food down and keeping his weight up!  Late night muffins and Starbucks ice cream have been contributing to his weight creeping back up and holding steady.

We've got lots of new challenges to take on these days, hopefully more answers and less questions ahead!

Chemo #3 + Transfusion time

Garrett had low-ish red blood cells and platelets making him feel tired this week even though he is feeling recovered from the infections and eating enough to gain some weight.  They went ahead with a dose of chemo, bone strengthening drug and neumega shot yesterday, but he has to check in to the hospital early tomorrow morning to get a transfusion to boost those red cells and platelets.  It will be another long one because outpatient infusion is fully booked this week (more patients sent to the hospital possibly due to new lower Medicaid reimbursement rates) so the hospital has to admit him as an inpatient.  :(  Just the process of checking in and out adds several hours to the transfusion time!  Hopefully Garrett will be able to sleep at the hospital while all the paper work gets done and I will head in to work for the day while he is there.

We were glad to have last week doctor free though and spent most of the time relaxing around the house and eating good food!

Chemo #2 + very low platelet counts

Although Garrett has been feeling better every day since the first dose of gemcitabine as his antibiotics take hold, he developed a rash this week that had no symptoms other than small purple pinpoint bruises on his arm and abdomen.  They are in fact tiny bruises that show up when your platelet counts (blood cells that help clotting) are low, called thrombocytopenia.  Platelets have occasionally dropped from chemo before, but this last chemo dose got him unusually low while the other blood counts (red and white) were strong!  For whatever reason gemcitabine seems to be extra hard on platelets so we started today an injection called Neumega to boost the bone marrow's production, but it can take three weeks to raise counts so we'll call the hospital tomorrow to see when they can fit us in for an outpatient platelet transfusion (takes a fraction of the time it takes to get red blood cell transfusion!). Then we stop by our doctor's office the next three days for the same Neumega shot.  Next week we have off from chemo, but we'll have to keep an eye on blood counts and take it easy enjoying the sun we have planned here! 

Here's some recent relaxation in good weather (not from this cloudy week!) hopefully we'll be doing more of this over the weekend!

Chemo #1 Gemcitabine + inpatient transfusion

Over the last few weeks Garrett’s energy was diminishing, his appetite along with it. A sore throat led him to believe it was a virus, but when he started feeling winded walking to the kitchen we figured his blood counts were down. We got in last Friday to see a doc and have blood drawn and sure enough his red blood cells and platelets were low enough to need a blood transfusion. Although we’d had good blood counts the previous week, it seemed like the cold just brought him down faster than we expected. After trying to get an outpatient transfusion appointment with no luck, Garrett agreed to check-in to the hospital that night and get it over with. We went straight over at 5pm and didn’t get done with the transfusion until 5am!  It was a very long night with several quirky night nurses and no sleep.

After being pumped up with new blood, Garrett still had a sore throat which kept him from enjoying drinks and food again this week, argh!  Today our oncologist selected a new chemotherapy that our insurance had already approved, so we went ahead with the first treatment of gemcitabine and a bag of fluid to combat dehydration. He will get a low dose once a week for two weeks, then have one week off. Most of the side effects listed for gemcitabine (aka gemzar) happen when you are getting a higher dose; Garrett should only feel some of them mildly, if any. It is supposed to be as easy or easier on his body compared to adria!

Echocardiogram results were not in, but that should be a good sign because any irregularities would have been immediately relayed to our doctor.

Chemo #13 + Echocardiogram

Last week Garrett had another great blood count result, gained weight (!), got a dose of adria and zometta (bone strengthener) and scheduled the echocardiogram. The echo is also called cardiac ultrasound. It will check on the strength of Garrett's heart to be sure he is healthy enough for another dose or two of adria. I am looking forward to the echo because I get to sit off to the side watching the images and hear the swoosh of Garrett's heart pumping blood, very cool stuff to me!

While Garrett was finishing up his chemo last week I took a little walk around the medical park and their super green retention pond. The weather here has been keeping up with summer and we deserve it after such a cold and rainy spring!

Chemo #12 and concluding hyperbaric for now

This past Wednesday Garrett had impressive blood counts, hemoglobin up at 9.0 and shockingly high white blood cells, which is a continued sign of chemo affecting the bone marrow cancer and a boost from his blood transfusion a few weeks ago. Since the numbers were so strong he went ahead with another chemo dose marking the third to last appointment where adriamycin will be used to fight his cancer. Our usual oncologist was out of the office this week, but we hope next time we will start talking about the next drug up. Garrett has been eating often the last week or so, but was only mildly rewarded for his efforts by maintaining weight this time. We hope for gain in upcoming weeks.

After two weeks of making the daily commute to Tacoma for hyperbaric oxygen therapy Garrett decided he was at his limit. We’ve put further sessions on hold until he feels mentally and physically ready to tolerate more. The daily routine was wearing him down day by day, but since deciding to suspend he has had much energy to work on eating multiple times a day and adding activity as he is comfortable to do like our recumbent bicycle with full back support. Putting more effort into these behaviors will no doubt help him feel well and tolerate continued chemotherapy!  He has already been feeling better making these changes to his routine.

We’re finally feeling summer time heat here in the pacific northwest, but Garrett is lucky to have air conditioning at home and in the new travel van! His body doesn’t regulate temperature well so having a/c available at all times makes the change in weather bearable. Olive on the other hand is basking in the sun, loving every minute! We drove the van down to Centralia on Thursday, taking all the pretty country back roads to get there, for the grand opening of the Centralia Deli & BBQ a new sister to the Chehalis Deli!!! We had a great dinner with Garrett’s parents and hope the Deli family and staff had a good practice run for their public opening night tomorrow!  Good luck!

Chemo #11 - wrapping up adriamycin

Late last year when we took a trip to Scottsdale, Arizona research doctors at Tgen (Translational Genomics Research Institute) took a sample of bone marrow from Garrett’s hip bone and looked at the cells for genetic markers which can indicate which chemo drugs might work best against Garrett’s cancer. Tgen has matched some genetic mutations to some chemo drugs giving cancer patients a better chance at getting the right drug the first time instead of just looking at treatment success from other people with the same type of cancer. This is especially helpful information for Garrett’s oncology team because his neuroendocrine carcinoma diagnosis is vague and no other case is exactly like Garrett’s.  In reality, all cancer patients are unique and the same type of cancer can respond to the same drugs differently in each person's body.  The ability to look at each person as an individual and customize treatment is a great step forward in cancer treatments that are shorter, easier and more effective.

Adriamycin, the chemotherapy Garrett currently gets, was one of the drugs identified by Tgen and has been helpful in decreasing cancer in his bone marrow thus escalating his body’s ability to make healthy blood cells. But it is a tough drug that is hard on the heart, so limits are set for the total amount of adria that is safe to take. After three more doses of adria (up to #14) Garrett will have had the cumulative dose our doctor feels is safe for his heart. Because Garrett still has probably some living cancer cells in his body we will need to start a new chemo drug at the conclusion of this one to keep suppressing new growth. We do not know yet what that next chemo drug will be. Our oncologist will be returning to the report made by Tgen to look at other drugs matching Garrett’s genetic markers and then recommend to us which one to try next. Having the report is also a good argument for petitioning insurance coverage for drugs not normally used for his type of cancer. As soon as we know more about the next drug up, we will share the info!

One week of hyperbaric oxygen therapy is now complete with no significant changes in the way Garrett feels or how his skin tumor is healing (we expect to see/feel changes after 2-3 weeks of treatment, with total sessions up to 4-8 weeks). Other than boring Garrett to tears for two hours, it’s not a terrible drive to Tacoma on days other than Friday. We just purchased a beautiful 15 year old conversion van in good shape with a sofa-bed, comfy captains chairs, tv and dvd player and a few other handy amenities for road trips! Our regular cars aren’t very kind to Garrett’s spine so the commute is made much less painful with this acquisition and it gives me a great spot to hang out in while he is in the treatment tube! We were very lucky to find this van in time to drive it to these every afternoon appointments and we’re looking forward to taking it on a few fun trips this summer too.

Here is my co-pilot waiting for Garrett to get out of the hyperbaric tube!

Chemo #10 + weight gain

Thanks to everyone who fed Garrett over the last two weeks, he gained 3 pounds!!! That's a big deal. Since his weight has been falling steadily for many months, every positive number is a relief. All his blood counts looked fine today and he got another dose of chemotherapy.

Chemo #9

Last Tuesday Garrett finished his 9th dose of Adriamycin chemotherapy. With blood counts on the rise we have good reason to believe this chemo is acting on the cancer in Garrett’s bone marrow and hopefully the tumors in the rest of his body. Even with rising blood counts, he needed a blood transfusion last Friday. Upon seeing Garrett’s lab results at the chemo appointment four days later, Tuesday, his doctor shouted “yahoo!” in the hallway before coming in the exam room to give Garrett the news… highest blood counts in months! The transfusion did its job well!

When we get back from vacation we’re planning to start the hyperbaric oxygen therapy that we had a consult on back in early April. The chemo alone does not seem to be helping his skin tumor to shrink or heal, so this is our next best idea to improve that condition and we hope the extra oxygen his entire body will acquire during the treatment will help him to feel good in general.

We're focusing on relaxation and calorie intake this week :)

Chemo #7 + week review

The latest chain of doctor’s appointments in themselves have been tiring Garrett out, but we found out a few good things and all of Garrett’s symptoms have been holding steady or improving the last few weeks. Here is a summary of the last week or so:

- Images of Garrett’s eyes did not confirm that vision problems are from radiation damage alone, they only confirmed there is pressure on the optic nerve from an unknown source. A head CT scan last week thankfully showed no large/new growth in the skull, but we still do not have a clear reason for his vision disturbances.

- A follow up eye exam showed bleeding at the back of both eyes (seen at the first eye doctor appointment) has decreased! Garrett has not perceived any change in his vision so far, it seems to be staying about the same with some good days and some bad days. We’ll do another exam again in two weeks just to monitor changes.

- We checked back in with our radiation oncologist who is publishing Garrett’s hyperthermia treatments and took another photo of his skin tumor. He also weighed in on hyperbaric oxygen therapy (recommends it) and the vision problems (radiation damage and tumor created bone changes could be the cause).

- Hyperbaric treatments are still on the table to treat his skin tumor and maybe help his eyes heal, but Garrett has not committed to a start date for the treatment yet. It is a big time commitment, so he is not taking it lightly.

- At our chemo appointment yesterday Garrett had impressive blood counts, almost at normal levels! This is the third chemo round where his blood counts have shown some recovery and it continues to be a sign that the cancer is responding to the Adria chemotherapy.

- No appointments so far next week, which is probably just what we need… a week off!

Chemo #6 + many more events and appointments

Whew, we had an exciting busy week/weekend spending time with good friends and going to a beautiful wedding. But we also finished another dose of chemo, met with a doctor at the hyperbaric medicine department, had another blood transfusion and made the transition to a new insurance plan!

At our chemo appointment we saw Garrett's weight still holding up and some recovery in white blood cell and platelet counts. This may be a sign that the chemo is starting to kill cancer cells in his bone marrow and make room for some healthy bone marrow cells. We will probably keep on this chemo for many more months (maybe six, or more?) as long as Garrett is tolerating it and we keep seeing progress, albeit in small increments, such as this!

Although we had a consultation with the hyperbaric doctor last week, we still have questions to get answered. We have a follow up with our radiation oncologist this week who will likely have insight that will help us make an informed decision. Our main question is if the time intensive hyperbaric oxygen therapy helps heal the skin tumor/radiation damage, will it be a lasting solution or only a temporary one? This is hard to know for sure, but the chances of lasting healing may determine if the four hour travel/treatment every week day is worth it to Garrett.

I had a restful day today to recover from all the fun we had this weekend, but we get back to our normal-busy schedule tomorrow. Eye doctor and radiation oncologist follow ups this week. Hope the transfusion can keep his energy up and his appetite can keep him maintaining/gaining weight!

Chemo #5 up and up

At Garrett's chemo appointment this week we got several pieces of good news. One, Garrett’s blood counts were up. It hasn’t been long since his last blood transfusion, but some weeks he’s already feeling low, not this time. Two, he gained 3 lbs over the last two weeks! Adding some extra calories everyday seems to be sticking for the first time in many months. Three, our oncology team referred Garrett to the Hyperbaric Medicine department at St. Joseph’s in Tacoma to consult on the potential for a hyperbaric chamber to promote healing at the skin tumor which has not improved visibly since the end of hyperthermia treatments. We look forward to learning more about hyperbaric medicine and I’ll post more information on it after I do some research this weekend. In two weeks we will also get images of his eyes taken to better determine the source of vision troubles. New treatment options are always welcome, we hope for more good news on the horizon!

Here is Garrett hooked up in the chemo room at the end of this round of treatment.  It was a quiet day in the doctor's office and everything went smoothly.

Chemo #4

Another successful dose of chemo today. Garrett’s blood counts were low (he’s been feeling the usual low symptoms) but we went forward with chemo and scheduled a transfusion for this Thursday. Since things aren’t getting better with his vision, we got a recommendation for a local ophthalmologist who is a UW grad so he must be brilliant and cool, go dawgs. We will make an appointment with him next week and hope that he has some ideas for the cause and solution of Garrett’s blurry/light sensitive vision.

The week off... almost

Yesterday we had a follow up with our radiation oncologist. He wanted to see Garrett a few weeks after finishing hyperthermia and go over any symptoms lingering from radiation that we did to the skull a few months ago. Garrett has had ongoing issues with vision and headaches, then just this weekend I noticed two spots of hair loss each a few inches wide on the back of his head (in the exit path of the radiation beams). The hair loss is a clear radiation side effect, but with others we can never be exactly sure what is causing them since anemia, iron toxicity, chemo and the concussion could all be contributing factors.

Since what we assume are radiation symptoms have not been getting worse our doctor was not concerned by them and good news was the strangest of all the symptoms has been decreasing in frequency. That symptom is random short term tongue swelling/control that slurs speech, controlled by an area of the brain near to the skull tumor we radiated. Since its occurrence is decreasing our doctor thought the radiation probably did its job on the tumor and swelling around the treatment area is likely diminishing so that the speech trouble would eventually stop completely. The vision issue he was less sure about, if it is a side effect of radiation at all or if it will ever go away. Instead of sending Garrett for more uncomfortable head scans, he said to keep track of symptoms and come back if any one is increasing or becomes too bothersome. We appreciate his reasonable approach to every thing.

They took more photos of Garrett’s skin tumor to document the hyperthermia treatment progress, but we can’t see a big difference on the surface yet. We hope that bleeding is a part of the healthy tissue’s return because that has been an occasional problem over the last few weeks and we are so looking forward to the healing process. No chemo this week, but next week should be dose #4 and we hope that it too is doing a number on the cancer in all areas of his body. The low dose does seem to be catching up with Garrett a little, but maybe he is also getting closer to needing another blood transfusion.

The rest of this week, appointment free, is a little breather but will no doubt fly by as all good breaks in life do.

Where it all happens

I wanted to take a photo of Garrett while he was getting chemo yesterday, but it was so busy that I didn't want others in the room to feel like I was taking their picture too. But today Garrett had to stop in for another blood boosting shot, so he got a picture of the chemo room. The recliner chairs are pretty comfortable and two large televisions are ceiling mounted (but usually have The Tyra Show on, ugggh) Garrett usually brings some music, sleeps or goes online on his phone while the infusion takes 1-2 hours.

Chemo dose #2 + iron toxicity

Second dose of Adria down. Garrett had decent blood counts this week, with little red and white cell decline since last Monday and increased platelet counts from transfusing them last week. It is a bit early to conclude, but our oncologist is hopeful that this is a sign of bone marrow recovery. It is a delicate balance, but we may bump up the chemo schedule in a few weeks since his marrow seems to be tolerating it so well. Any sign of response is a great thing to sustain our hope.

In addition to blood transfusions, we have a few other tools to combat chemo induced anemia (low red blood cells) and leukopenia/neutropenia (low white blood cells). After Garrett’s chemo infusion today he got two shots; one drug to stimulate red blood cell production called Procrit and one to prevent low white blood cells call Neupogen. These shots seem to help when Garrett’s bone marrow is already responding to chemo. At the time we tested his bone marrow and found it mostly replaced with cancer, these drugs were not strong enough to overcome the cancer. And at that point Garrett’s insurance company decided to stop paying for the (judged ineffective) shots.

With a few promising chemo treatments under our belt, our doctor was able to petition the insurance company to re-gain coverage for these drugs. Combined with an effective chemo the shots do seem to help to reduce or delay Garrett’s need for blood transfusions. This is especially important because with every red blood cell transfusion the body acquires iron. As I understand, in normal blood production the body is helped by and uses up iron, but when you are not making your own blood the extra iron just builds up after each transfusion and cannot be disposed of by the body. Overload of iron (transfusional hemosiderosis) can happen after 10 – 20 transfusions and results in fatigue and eventually organ damage. There is one expensive drug to help your body eliminate iron, but it caused Garrett to puke each time he took it! So we went back to trying to get his marrow working with chemo and delaying transfusions whenever possible. And fewer transfusions make Garrett a happy man!

Spring fever

We have lots of good news to share this week. Hyperthermia finished up this Friday. We continue with chemo on Monday and follow up in two weeks to review the success of hyperthermia (or consider additional treatments) and take a few more photos for publication. As we expected, the minimal discomfort and low risks were worth trying this treatment and we hope that it, combined with an effective chemo, will heal at least the skin tumor. It is also gratifying to share information about a lesser known treatment to other skin cancer patients who may benefit from it in the future!

Amidst every-other-day appointments the last few weeks, Garrett had some unusually good days. He has been eating well and maintaining his weight which has become one of our biggest challenges over the last 9-12 months. Symptoms from his cancer, treatments and/or medications eliminate appetite, slow digestion, produce mouth sores and heartburn that all add up to moderate steady weight loss. We added other medications including medical marijuana to counteract each of these problems, but none were alone able to curb weight loss. While we are not sure exactly how, recently he managed to find the right combo of meds and diet to at least hold his current weight and feel okay when eating a regular sized meal! This is a major accomplishment and makes daily life much more tolerable. Biggest challenge now is to keep it up and work on gaining back some weight.

One thing or another goes awry even on the best days, but they have been far closer to our ideal. It is good to see the sun again in our area, spring is on its way, and we are looking forward to having fun while Garrett is feeling this good. A few of our good friends are planning weddings this spring and no doubt fun will be had! In the course of chemo we can expect him to feel worse after each treatment cycle, but last night we had dinner out and watched a movie at home to celebrate the end of hyperthermia – so we are taking advantage of the times he feels good.

Monday, monday, it just turns out that way

Marathon Monday started with hyperthermia in the morning, blood drawn at our regular doctor’s office in the afternoon and then heading to the hospital for a platelet transfusion. Garrett was feeling so good today that we figured he might have decent blood counts – the red cells and white cells were good, but the platelet count concerning. Platelets primary function is to clot blood and with extreme low counts you risk bleeding uncontrollably or developing life threatening complications. Although it is not how Garrett wanted to spend the afternoon – when he was feeling so well – we drove down the street to the hospital’s outpatient infusion floor where all our transfusions are done. It took much less time than when red blood cells are needed, only about an hour. We plan on the next dose of chemo a week from today where we will check all his blood counts again and see if another transfusion is needed. Hope this week is another of not feeling too bad, finishing hyperthermia and eating well to put back on a few pounds before another dose of chemo.

Another day + chemo schedule

Garrett had a queasy evening yesterday. He felt good most of the day, even when I got home from work, but then it snuck up on him. Chemo drugs typically affect the good digestive bacteria so eating can be unpleasant (nausea, indigestion, heartburn, constipation, etc.) so much that sometimes just the smell of food makes him feel nauseous. But today was not too bad and he said he is looking forward to some IHOP tomorrow if he feels good after hyperthermia treatment!

We plan to rest at home this weekend and check his blood counts on Monday. It will be getting near to the nadir period where blood counts can drop very low. Since Garrett’s bone marrow is already depressed, we can plan on with some certainty a blood transfusion next week or shortly after. Our chemo schedule going forward is to get one dose of Adria every other week, our doctor would like to give it once a week, but we have to get Garrett’s bone marrow making healthy blood cells for that interval to be tolerable. So we will probably alternate chemo and blood transfusions for a few months. When we can see the cancer responding, we might adjust the chemo schedule. As always, we play it by ear and adjust the schedule whenever Garrett is feeling too bad or wanting some time off. We’ve delayed treatments before to take vacations or have an extra weekend at home, so we still live as best we can!