GIVING THANKS

 

Life is precious.  Life is finite.  No one knows this more than a cancer patient.  And while most of us have much to be thankful for on Thanksgiving, Kristina is thankful for being here on Thanksgiving.  That and oh so much more.   To have gone three rounds with one of the most aggressive cancers over 16 years and feeling pretty good on this Thanksgiving Day leaves her somewhat shy on words (which in and of itself is a rare event!).

On the news front, she met with her new doctor and team and she’ll have appointments every 2 weeks for the next 6 months.  Her current condition is good – very good – and improving with exercise and fresh air being on the daily schedule.

In a chat yesterday, Kristina wanted to express her thankfulness.  Her thankfulness cup runneth over for many reasons.  She picked the right year to have her 3^rd round of AML.  She picked the right place to have it.  She picked the right community and the right caregivers.

None of these things were her choice, and yet that’s the circumstance she finds herself in and thankful for.  After years of little progress, treatment for AML has come a long, long way in recent years.  And there’s no better place than Fred Hutch to get the very best care, leveraging great talent with the recent medical advances.

And the community and caregivers (and it’s at this point during the conversation during our chat when words melted into quiet happy sobs.  Words weren’t there.  Replaced by emotional thankfulness). Kristina knows how lucky she is but doesn’t know the ‘why’.  Why 2023?  Why near Fred Hutch?  Why the greatest tribe one could hope for and why so many faithful and helpful caregivers. 

Kristina wanted to say ‘thank you’ over and over and over again.   A couple of others in our community didn’t survive to see this Thanksgiving Day.  Others are in their own battle with this miserable disease.  But on this day, Kristina is deeply thankful.  We all should be.  Kristina knows she could not have done this alone.

 

Happy Thanksgiving

 

 

PIVOT - ON TO THE NEXT PHASE

It’s been a while since the last post.  We’re at day 93 since the transplant and Kristina’s condition is awesome.  If it were her first battle of AML, she’d be doing very, very good.  Given it’s her third battle, she’s doing spectacular. 

In the next few days she’ll hit another pivotal milestone, transitioning from the ‘Orange Team’ on the 6th floor to the ‘Cedar Team’ on the 4th floor.  What, exactly does that mean?  In short, good news.  The care team that she’s leaving is focused on the transplant (remember the transplant song?).  The Orange team, combined with Kristina’s fighting spirit got her to and through the transplant.  Three months later it’s time to shift gears to a care team focused on more of the chronic conditions that come well after the transplant. 

While the posts have been quiet, Kristina hasn’t.  Last week there was a photography session documenting her flexibility, skin conditions, pictures of nails, etc.  Photos used as a point in time to view later for improvement or areas of concern. 

One disappointing aspect of that was seeing some of her pictures from previous years and just how long it takes for full recovery.  

Next week she’ll have her ‘departure conference’ from the Orange team and be introduced to her new care team. 

Her skin GVHD (Graft vs Host Disease) is fully resolved, but it’s still manifesting in her eyes.  That’s being mitigated by medication but medications bring their own issues.   

Kristina is still on several medications, each one having its own side effects.  She won’t be fully weaned from them until early next year which came as a disappointment to Kristina. 

In the meantime there’s PT, and in keeping with Kristina’s spirit, she takes a liberal view of what PT means.  It goes beyond the image we have in our head of ‘physical therapy’ and extends to walks in the woods and anticipation of the first snow.  Moving the body and gaining strength are the key goals of PT, but getting outside on varied terrain takes it to the next level. 

The journey continues.  Volatile ups and downs are (hopefully) a thing of the past.  The sustained gritty work of recovery, the work that in many ways never ends, continues. 

HAPPY BIRTHDAY! And progress!

 

Today is Kristina’s BIRTHDAY, it’s day 55 for her transplant timeline and the 1^st day of agency care after having 6 different care givers rotating in and out over the last 2 months. The care giving ends on day 100, so she’s over halfway there to the end of care giving.

She’s in FULL REMISSION with NO SIGNS OF DISEASE.

Let’s pause here for a moment.  Earlier this year, in April, it was entirely realistic that Kristina wouldn’t even see this birthday.  Not only is she here to celebrate it, the prognosis is for many, many more.  Modern medicine, skilled care, a fighting spirit and a supportive community and perhaps a bit more have come together to make this birthday something special.

She’s still a bit in the medicine induced ‘zombie mode’ (her description) which has her quieter than usual, not as outgoing, kind a ‘blah’ type of feeling.  She describes it as being ‘monotone’.  She stopped one med which has made things a bit better, but until she’s weaned off the meds, this will continue.  She’s still on Prednisone, but at a mid level dosage and hopes to be off that on October 9^th.

Her walking is better and she’s eating better – but still shaky and the fine motor skills aren’t working well – so her handwriting is awful. 

Graft vs Host Disease (GVHD) is attacking her eyes, but she’s taking 3 different eyedrops plus an ointment to counter it and that’s working fairly well.  Without the meds, it would be pretty debilitating – feels like sandpaper is in the eyes and it’s like looking through pool water.  But it’s tolerable with the meds and not entirely unexpected.

But she can’t wear her contacts so it’s back to glasses for a month.

Even with all the good news, the current daily routine is a bit of a grind.  Different meds are taken 5 times a day with eyedrops and the ointment just before bedtime.  While the eyebrows are coming back, hair recovery will be a long road.  Combine that with the shaky, zombie zone feeling plus the glasses, Kristina isn’t feeling herself at all.  Optimistic and thankful, but it’s like waking up on your birthday and feeling 20 years older than what your passport says.

Kristina’s care team thinks she’s doing fantastic and Kristina has her eyes on upping her physical therapy once the snow starts.  She’s looking forward to some cross country skiing later this year.  Physical therapy.  Kristina style.

EATING LIKE A BIRD

So what’s going on with Kristina this past week?  A couple of scares and a little bit of improvement. 

First the scares – One of the signs of GVHD is intestinal trouble.  But that’s been going on since the Mucositis set in after Chemo.  So when Kristina went in last Tuesday for her visit, the watery diarrhea was a concern.  Lingering from Mucositis?  First sign of GVHD?   Many issues with digestive tract distress but one of them is the ability to absorb oral medications.  Being able to take medications orally, keep them down, and properly absorb them (getting them ‘on board’ according to Kristina) is critical if one wants to stay out of the hospital.  Delivering those same meds is possible by IV, but in a hospital setting. 

So on Tuesday there was some deliberation whether she should go back to the hospital or not.  She was able to avoid being admitted and things are getting a little better. 

The second scare was a sudden spike in temperature.  Within just a few minutes, her temperature climbed.  98.4, 99.1, 99.4, 99.6, 100.1, then 100.4 – which is the tipping point to get to the hospital.  Infections can spike fast.  But then it stabilized and trended down.  Whew!  No sudden hospital trip. 

GVHD (see yesterday’s post) is confirmed on the skin.  Rashes on the arms, back of neck, up to the cheeks, but worst on the arms.  It’s treatable – Hydrocodone for the rashes from the collar bone up and another steroid cream for the arms, chest and torso.  And the creams are working, the rashes are getting a little better. 

Through all this Kristina is ‘eating like a bird’ (her words) eating small portions of food and getting slowly, incrementally better.  Saturday was the best food day yet.  The gun metal taste is still there, so food isn’t particularly enjoyable, but Kristina felt that her taste buds may slowly starting to come back.   

So now for the ‘ask’.  Care giving is a thing.  And up coming cost of professional care giving is more of a thing.  As much has she hates it, Kristina is not yet able to live independently and she’s weak.  Lizie will be leaving on Sept 16^th.  The calendar is in good shape with care team visits, but large financial obligations are looming.  Visiting the go fund me page is sincerely appreciated. 

GVHD: The Good, the bad, and the ugly .

 

So what is Graft vs Host Disease (GVHD) anyway.  Here’s a quick tutorial.

GVHD occurs when the donor stem cells attack the hosts body.  Kristina’s body in this case.   In about 60-80% of non related donor transplants, the stem cells recognize portions of the the host’s (Kristina’s) body as ‘foreign’ and attack.  This ‘attack’, in a mild form, is actually good.  When the stem cells say ‘let’s attack any blast (leukemia) cells we see’, it’s a great thing.  Stem cells doing what stem cells do.  Facilitating fresh blood cells of different types (see prior post on how magical stem cells are) and attacking the bad guys.

But when they attack other organs of the body it can either be bad, but treatable, or in severe cases damn ugly.

GVHD may manifest itself in many ways and can be either acute or chronic.   Symptoms may be mild or severe.  It may come shortly after the transplant or take years to develop. The uncertainty of if, when, and how it may develop that has its own special form of cruelty, coming after the treatment of AML, a life threatening condition.  You get through all the rounds of Chemo, the transplant, all that stuff and, oh yeah, you might, or might not develop GVHD.  And  it might or might not be severe.  And the symptoms are so wide spread, that initially they might be GVHD or a mild reaction to spicy food. 

Consider Kristina’s arc of this last round of AML.  It started in May, confirmed in early April, and her first thoughts were “it’s back, I need to get my affairs in order”.  Then hope was dangled.  To her initial astonishment, she was deemed to be viable for a transplant.  She hadn’t thought that possible.  Then the rounds of Chemo, delay, all the emotional and physical hardship associated with chemo and transplant.

And now GVHD – with its wildly uncertain trajectory.  But, as we said, a little bit is actually good.  Kind of like bitters in a cocktail.  A little bit is good.  But not too much.

Let’s break down GVHD.  The symptoms for the acute form include abdominal pain, nausea, vomiting and diarrhea.  Liver problems, like jaundice can occur.  Rashes, itching or redness on the skin.  And increased risk for infections.

Pause for a moment and consider that post transplant patients are already at increased risk for infection.  Which has its own socially isolating aspect to it.  We humans are and live it a pathogen infested environment.  We transmit all sorts of stuff between us and for most of us it’s benign.  Our immune systems do the battle quietly and we aren’t aware of most of the things they deal with.

What for us may be an infection that was negated before we even knew about it could be a life-threatening thing to someone who is immunocompromised.

The chronic form is more sinister and may result in vision changes, dry mouth, sensitivity to spicy foods, fatigue, chronic pain, skin rashes, lung damage, liver damage with reduced bile flow, damage to sweat glands, and inflammation to the membrane surrounding the heart causing chest pain.

The treatments include prednisone, a steroid, that can alter moods, disrupt sleeping, weight gain, other stomach problems, etc.

As GVHD can damage the liver, lungs, digestive track and other organs, it’s a serious thing.  Treatments can be successful or GVHD may result in a life changing chronic thing.

So in a nutshell, that’s GVHD.  In its most mild form it’s a good thing.  There are variants of mild, like a rash, that is treatable and really isn’t much of a thing.  It may be more severe and begome  a life changing chronic condition, or it may be truly ugly.  Patients have died from GVHD.   Given the choices, we’ll opt for the mild, good version.

HOME BUT NOT HOME

Home is many things.  Part place, part feeling.  A physical structure with an emotional bond.  A feeling of safety, warmth.  Ah, I’m home again.

Kristina is home, but not feeling herself.  A sensation that she’s had before, after previous transplants.  But forgot about.  So it’s ‘normal’ in the scheme of things, but abnormal.  Nothing is ‘wrong’ but still not ‘right’ yet. 

Home, but not home.

When Kristina left the hospital, her care team remarked that she’s on the fewest meds that they can recall a transplant patient needing upon discharge.   Good news.  But as I quipped to her, she’s had practice (sometimes I should keep my dark humor to myself).  She did laugh. 

Her care team is extraordinarily pleased with the progress and the current state of things.  Kristina feels she’s still very shaky, weak, can’t stand for very long and can only walk short distances.  She wants to be better.  The Mucositis is still a thing, with the nausea, but the vomiting has subsided.  Thank goodness for small wins.

Food still tastes like crap, and Chemo has not improved Kristina’s legendary lack of culinary skills.  So it’s getting nutrients into the body to build strength that’s the current challenge.  Between the Chemo induced gun metal taste of everything, weakness, nausea, and the preexisting genetic aversion to cooking, well you get the picture.

Kristina is frustrated by the long gradually lessoning, lingering effects of Chemo.  Yes it’s getting better but oh, so damn slowly.   Progress, but seemingly glacial in speed.  During her visit to the hospital yesterday they hydrated her through an IV and there was an event that did brighten things.

Sometimes we have pity parties that despite our best intentions take root.  Just as the feelings of ‘I just want to get better’ start to grow, there was a single guy one bed over that had gone through a transplant but was fighting Host vs Graft disease.  This ‘first time transplanter’ hadn’t managed himself particularly well and was in pretty bad shape.  Kristina’s negative thoughts about herself shifted to empathic thoughts about this fellow who was suffering.  And gratitude that she was doing as well as she is.

So she’s home, but not ‘there’ yet.  It’ll be a long road.

No signs of  Graft vs Host disease yet, although some rashes are starting to develop – but it’s too early to read much into that. 

Her high school friend Lizie is with Kristina and said that for the first time in a couple of days Kristina got herself something to eat.  Recognition of hunger and having the motivation and energy to grab and eat food is something that we take for granted.  It was a major win for Kristina.

So that’s where things sit right now.  Home, not feeling herself, daily visits to the hospital, watching for any signs of graft vs host disease (if that does occur in any material way, we’ll devote a post to that syndrome) and a first gear, slow grind back to health.

Jailbreak

 The day has finally arrived.  Kristina is feeling a bit weak, but anxious to escape the confines of the hospital.  Her high school friend, Lizie, got in at 1am last night after a series of flight delays.

With Neutrophils well above 1000, she's ready to go home and play out the rest of her recovery.

We'll prepare a post on what the next few weeks look like, but for now it's all about getting out of the hospital and setting up a new routine at home.

As of about an hour ago she was waiting for her final hydration IV, the pharmacy consultation and a visit from her medical team.  Then, if all goes well, she's 'outta there'.