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 #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.

Blue

Well, our world cup game didn't go as we'd like, Ghana’s slide tackles and two goals won them a place in the next round. I’m happy for Africa to still have a team in there to root for, but Garrett might be done with this World Cup completely. It was fun while it lasted, in the end unfortunately a downer this weekend.

Friday we had a long day starting at 7:30am checking in to the hospital outpatient infusion center for a blood transfusion. As much as his blood counts have been rising, it is still not enough to avoid transfusions all together, but spreading them 5-6 weeks apart instead of 2-3 weeks is much healthier. The hyperbaric oxygen therapy will make the red blood cells Garrett does have work harder too which usually helps anemic people further delay transfusions.

Washington had some blue skies and sunshine this weekend, but we were still feeling under the weather. Garrett’s been sore in the shoulders and back since starting the hyperbaric treatments and trying to eat and drink more to up calories, but finding it hard to get things down. And little Olive got a hitch in her getalong this morning and couldn’t get comfortable. If only half a low dose aspirin could perk Garrett up like it does for Olive. Hopefully next week will be less painful for all of us!

We did have some decent homemade seafood and vegetable tempura for dinner and we're stocked up on Garrett's favorite dessert... mochi ice cream!

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!

Refueled

Garrett's blood transfusion (2 red blood cell untis + platelets) went smoothly today, he's feeling tired tonight, but his energy might pick up this weekend.

Since I don't have anything else to post today, here is one of his crowd pleasing childhood photos :)

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.

What can we do?

As suspected, a blood transfusion (red blood cells) is in order this week. Some times the symptoms he feels from low blood counts go away right after the transfusion, other times he perks up a few days later. Either way, it is good to stay on top of his anemia and get transfusion before he gets too terribly low.

This is probably the first of many posts I will write on this topic, but it is a broad subject and a common question. The answer is different every week and for every one of you, but I will try to put a new post out there whenever things change for us. The question “is there anything we can do to help?” is so wonderful to be asked, but sometimes so hard to answer. Most of us have a hard time asking for help and just as hard a time accepting it when offered, Garrett and I are no different. But I will strive to ask for and accept help when we really need it because a lot of small things can really lift some of our burdens and hopefully empower all you givers out there too! Here are a few things to start out that you can do right now:

- Check yourself! Get annual exams including cancer screenings. Most cancers are very treatable (or preventable!) when they are caught early. The sooner you can face the issue, the less difficult the solution will be. If you do this one thing we (and the other people who love you) will not have to worry about you :) which is a great relief.

- Have health insurance and disability insurance. See below about contacting policy makers to improve affordability and access.

- Live a healthful life of moderation (easier said than done, I know!) be physically active most days, get outside in sunshine (without sun burns) or supplement vitamin D, eat fruits and vegetables everyday, weigh in a healthy range and find ways to be happy! No one food or life choice keeps us cancer free, but the sum of healthy habits seems to lower our risk of cancer.

-Contact policy makers about supporting comprehensive health care reform, cancer research funding and education/access to pain and palliative care services. Join the American Cancer Society Cancer Action Network and they will alert you about upcoming votes and facilitate communication to lawmakers.

- Donate money to your favorite health, cancer, or patient support nonprofit organization. Garrett’s friends organize a Relay for Life team every May to raise money for the American Cancer Society, my friends Tessa (and Becca and Kristine) raise and run for The Leukemia and Lymphoma Society and you probably know someone else who is involved and taking donations!

- Some organizations need your time and talents in addition to funds. The Pink Daisy Project arranges support like house cleaning, reduced cost childcare and grocery shopping and meal prep assistance for breast cancer patients, helping young mothers like our friend Ellen’s sister during tough treatments. Volunteer your skills, walk or run in a fundraising event yourself, call your senator… actions small and large will support our family and other families facing cancer.

That’s all for now, surely more to come! If you know other organizations doing good work, share them here and with everyone else you know!

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!

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!

Transfusion day

Today Garrett received a blood and platelet transfusion as an outpatient at our local hospital. Transfusions have been part of our life since beginning chemo because the chemo damages fast dividing bone marrow cells which normally produce healthy blood cells. Also radiation treatments that are done near or on bones can damage bone marrow. We have so far radiated his low spine, neck, left shoulder, right skull and just this month the left skull and repairs to bone happen very slowly, over even years, so these areas now contribute very little to his blood counts. So transfusions during cancer treatment are pretty normal for other people, as I understand. Usually for Garrett a few bags of blood take 4-6 hours to infuse, but today it was a 9 hour marathon due to the inefficiencies of hospital operations and one less than competent nurse.

Usually when a chemo series is complete (4-6 months for us) the bone marrow recovers and begins to produce new healthy blood cells again. Last year, a few months post-chemo, Garrett’s blood counts were not showing signs of recovery. In August (2009) our oncologist took a bone marrow biopsy from Garrett’s hip and had it sent for testing. The results were not what we were hoping; they showed cancer cells had majorly invaded his bone marrow. So his trouble producing blood is not only a side effect of treatment, but also a symptom of his disease.

Our focus must be on what we can do about it, but the questions about this new cancer for us can’t be denied. How? When? And why? We can’t answer any of these for sure, but there are a few possibilities. One is that his original skin cancer, which has spread to tumors only on bone tissue so far, spread further into bone marrow cells. Another is that the radiation and chemo we have previously done caused cell damage that predisposed him to a secondary cancer. Yet another possibility is that the bone marrow was compromised from the time of diagnosis, since we had not previously tested the marrow. It may have been controlled with previous treatments, but developed resistance and returned. No matter the way, we began to treat it with a new chemo then took an interesting trip in October to TGen, a research institute in Scottsdale, Arizona, to have a second bone marrow biopsy done.

The results of that biopsy were genetically profiled and resulted in a recommendation for several chemo drugs that might be more effective given Garrett’s cells specific gene mutations. This research and its implications are an interesting topic all to themselves and deserve their own post on another day! So we are just at the start of treatment with the chemo drug they recommended and until we have been on it a while and given the marrow a chance to recover, we have to plan on needing blood transfusion every 2-4 weeks. Hopefully we will see more of the nurses we like along with sensible hospital operations in the future!