It's Complicated

We've been enjoying our visits with Alex, and all of us have been readjusting to life with Alex out on his own. Clearly, going through his cancer treatment changed the landscape of everything, and so much of our time with Alex revolved around his treatment. It's an understatement to say that it's nice to just be able to have dinner with him or have him home for an uneventful weekend.

Fazoli's continues to be a favorite, so it is a frequent dinner destination when we have dinner together. I love looking at his face - seeing him look healthy and at ease.

Alex is doing so well right now, and I love to be able to tell people when they ask that he is feeling great. Yet, always on the tip of my tongue is the qualifier, "for now."


Remission = Happy, right?

Mostly, yes. It's not that I'm ungrateful or unappreciative of where we are at now; I am. It's just that when your hand has been slammed in that car door time after time, you wince a little every time you open it.

I understand it when people say that "no one knows what tomorrow will bring," and I agree with them. However, Alex has been given a bit more information than most about his future. A year ago a very well respected and knowledgeable specialist told us that Alex would be in treatment for his cancer for the rest of his life. We also didn't discontinue his immunotherapy because it stopped working, we didn't even discontinue it because it worked. We had to discontinue it because of the damage it was doing to his lungs.

And yet, here he is, cancer free for over eight months now. "Durable remission" is a term that has been used. The doctors just don't know how long this will last. There isn't enough data on his treatment to tell us what will happen. There are study patients who have been in remission from this drug for two years, but they continued to receive the drug the whole time. I don't know if there are even numbers on how long someone stayed in remission after stopping the drug. I purposely haven't tried to find out.

So when you ask me how Alex is, and my response is "He's doing great" but I add on that "for now," I'm not trying to be bleak, or difficult. I'm terrified. If I don't say, "for now" out loud, I'm still thinking it in my head. I'm forcing myself to make plans for the future - to think about life a year or five years from now. I'm allowing myself to imagine a life a year or five years from now with Alex in it. I'm pushing away the fear that such dreams are foolishly optimistic. Because I don't know what tomorrow will bring. I do know sadly, from experience, that we are capable of dropping everything and dealing with whatever we need to in the moment. I also know that dwelling on it now robs me of this time when he's well. I know I can't squander it. Knowing a thing and managing a thing are not exactly the same, though, are they?

Alex is doing great. He looks healthy. He has energy. He's active with his house. His anxiety is generally low, and his good days and bad days appear to revolve more around his regular rhythms than anything cancer related. He is feeling better than he has since before he had cancer. We're back in a routine of visits. He spent several days at home over Thanksgiving, and will be with us again at Christmas. This year, our Christmas will be fairly quiet, which is a welcome change from the past two years. No hospitals, no treatments, just family time, baking, and Christmas movies. I love, love, love Christmas and am very content for it to be a quiet one.

Yes, Alex is doing great, and so are we. Thanks for asking.

What Are You Waiting For?

How often do you find yourself thinking or saying, "....when my life settles down."

That has been my mantra for as long as I can remember. John, my sweet, patient husband, has spent more than 30 years trying to coax me to live in the moment. I've always considered my focus, planning, and goal setting to be assets, so it has been an uphill battle for him. As is true with many character traits, our assets can also be our undoing. For example, confidence can also be arrogance, perseverance can also be stubbornness. The key is when does the character trait serve you, or when are you serving the trait?

Is it planning, or wishing your life away?

As a young mom, busy with two active children, one with significant special needs, and also a full time teaching job, I often thought about when my life would "settle down." Experienced moms already know that my life never did settle down, the chaos of my life just morphed into something new and different.

Family stresses, work stresses, life stresses all ebb and flow.

Joy and excitement and new opportunities add to the mix, but don't decrease the "busy-ness" or chaos of everyday life.

Cancer has been working hard to teach me lessons about my life. I've been learning about strength and resilience and I have been learning to live in the moment. Despite this, I still find myself harboring that idea of "when life settles down."

This idea isn't serving me well. My mother, who passed away just a year ago, lived her whole life waiting for things to "settle down" and looking at the next thing. In many ways, it was a strength. It enabled her to overcome an often traumatic childhood, to raise five children, to complete a bachelor's and master's degree while working full time and raising those five children, to build a life of 47 years with my father, and to help him deal with Parkinson's and the cancer that eventually took his life. It also left my mother with a sense of discontent that she carried until the end of her life. She couldn't look back on her marriage without feeling the constant sting of widowhood. She railed against her aging mind and body, always wishing for something to be different. She was never content with what "was," always looking for what "should be."

That's a tough mirror to look into.

Even with everything I have learned in the past two and a half years that Alex has had cancer, one of my first thoughts when we learned of his latest remission in March, was that life was going to "settle down." I had visions of what that would mean for my summer break from teaching - all the plans I would make, now that we had a break from cancer.

Life has a funny way of filling the void. Alex is doing great, and we have done some wonderful things, but new obstacles have popped into the picture. John had back surgery the morning after we returned from our family trip to Disney. I broke my toe on July 4, and will have surgery July 19 that has a six week recovery period. I'll just be able to make it back to the start of the school year. I won't be on bed rest, but I will be limited in what I am able to do physically for the rest of my summer.

My dog, Tucker, taking care of my after I broke my big toe on the Fourth of July.

I'm disappointed, but am trying to stay positive. John's helping me with that. I recently made some comment about the two of us being "broken" this summer. He said, "we're taking time to heal."

We both appreciate that our medical problems are fixable, which is no small consideration. Once cancer enters your life, it helps you gain perspective on other medical issues.

I'll "miss" the rest of my summer, but I won't have to miss any of my school year.

I can think about the things I cannot do, or I can appreciate that I have a good reason to sleep in, read books, and let my husband wait on me. (I took my turn after his back surgery.)

Even though John's back needed surgery, he was able to go with us to Disney. He curtailed his physical activity, but he did what he could. He kept a positive attitude.

Alex still got his break from the doctors this summer. We have spent this time living in blissful ignorance about his cancer. He is in remission, and his next PET scan is coming up in a few weeks. We don't know what the scan will show, but for now, we're just pretending everything is fine. He feels well. He is active and busy at his group home, so our surgeries don't need to have a big impact on him.

There is no "when life settles down." Alex is getting a break from his cancer treatment. He is enjoying his remission, feeling well, and being active. John and I are busy dealing with our own health issues, thankful that we have the time to do so while Alex is not in treatment at the same time.

I realize that the time will come in the not to distant future that I will be buried deep in school work and will wonder bitterly why I was upset that I had to take it easy after my surgery.

One of the things I'll be working on during my recovery from surgery is to banish those words, "when life settles down," from my thoughts and words.

My life won't settle down, and I'm learning to be okay with that.

Watching Alex

It's taken awhile, but the unexpected news of Alex's remission is finally sinking in. Right after we got the news, I wrote about how the good news was actually difficult to accept in Cease Fire. Tomorrow it will be a month since the PET scan and I can't believe how long ago it seems.

The odd thing is that it all seems so distant, yet only six weeks ago he was in the hospital and we were fearing the worst. We were steeling ourselves for the next battle and so fearful that our options were gone.

Now, here we sit, with no idea how long this reprieve will last, but learning to enjoy it.

The most amazing part of all of this is Alex. Through all of it, we didn't know for sure what he understood, but felt strongly that he knew he was sick.  When he relapsed in October, then developed the awful rash to the clinical trial drug, his anxiety was at an all time high. We had assumed the steroids he had to take to treat the rash exacerbated the anxiety.

When he developed pneumonitis, he went back on steroids. This time, the dose was even higher and he's been on them longer. He's got about a week more to go and the dose is quite low at this point. The doctor has been gradually tapering him off. We're hoping that minimizes the rebound anxiety when he's done.

The weird thing is, there hasn't been any anxiety so far. That may not mean we're home free once he stops the prednisone completely - last time he had a sharp increase in anxiety for about four weeks after he finished the prednisone - but he is already acting drastically different than last time.

Once again I find myself desperately wishing he could tell me what he's thinking and feeling.

When the doctor told us the cancer was back and the treatment options weren't curative, Alex's anxiety increased dramatically. Then after the failed treatment, awful rash, and prednisone, it reached an all time high. (I also have to wonder how miserable the rash was given Alex's hypersensitive sensory system.)

Once we got the news that he was in remission, it was almost as if a switch was turned. I know that he's very sensitive to our moods and can reflect them back to us, and we were certainly upset and anxious when he relapsed, but this time he adjusted to the good news more quickly than the rest of us. The relief was apparent and immediate.

I know that he appreciates the reprieve from treatments and doctor visits. We've been seeing his local oncologist to monitor the prednisone taper and to monitor his lungs, and he is clearly not happy to be back at the cancer center. The appointments have been fairly short, which definitely helps.

He's feeling better than he has in a very long time - probably since before cancer. He has more energy and is napping less. His caregivers and the people at his part-time job all report what a great mood he's in. We're all watching him and marveling at how well he's doing - not just physically, but mentally and emotionally. Although I wish he could verbalize what he's feeling, I'd have to really not be paying attention to what he is saying through his attitude and actions.

When he was in remission last year, he was still recovering from his transplant so he was still not himself. He had a positive attitude, but not a lot of energy. He had issues with anxiety as well, more than he'd had since adolescence.

This time, it's completely different. It's like we're seeing the Alex we knew before cancer.

I'm not sure what the future holds, but all I need to do is take my cues from Alex. He is showing me how to live in the moment and appreciate this time right now and reminding me to be present and grateful. 

He's been teaching me lessons his whole life, why should now be any different?

Cease Fire

Things have been busy with Alex's cancer since we learned of his relapse in October. Since then he's tried and failed two different treatments, been hospitalized for pneumonitis, and gotten some very unexpected good news: Alex is in remission.

You'd think that with that unexpected good news, we'd be elated and feel an enormous sense of relief. If only it were that easy.

We know full well that we should be happy, and we are happy, but the relief just isn't quite there.

John came up with the analogy of a "cease fire."  The war hasn't been won, and we know it isn't over. The enemy has retreated, but we don't know for how long. That enemy is more than likely simply waiting in the wings, waiting to strike again. We just don't know when that day will come.

I've written many times that one of the things that I find most difficult about cancer is the uncertainty, and every time I seem to find a tiny bit of predictability the rug gets pulled out from under me.

We found out that Alex relapsed in October and were given treatment options that we were told were not curative, but that could keep the cancer at bay for a period of time, perhaps even years.

We embarked on a clinical trial that held few side effects, but required a tremendous amount of travel from our home to the trial hospital, 100 miles away. It meant being at the hospital days 1, 2, 3, 5, 8, and 15 of a 21 day cycle, then repeating. Side effects were non-existent until three days before cycle 3 was to begin. Alex developed a rash - a tiny redness in one eyelid that quickly spread to more than 75% of his body within 48 hours. The trial drug kicked his own immune system into high gear to fight the cancer, but it also kicked his integumentary system (skin, hair, nails) into high gear as well. The rash itched and was miserable. Two days into the rash and the day before treatment number 3 he had a scheduled PET scan. It showed a partial response to the trial drug, but due to the severity of the rash, he couldn't continue. The drug helped Alex's own immune system attack the cancer, but was toxic to his integumentary system. Three weeks of steroids and a week's wait were needed before we could being the next treatment.

In early January, he began the next promising immunotherapy: a relatively new treatment for lymphoma called Opdivo. He had four treatments; one every other week. We were told to watch for a cough because this treatment, while it has few side effects, can be seriously toxic to the lungs in a small percentage of patients. Things were going fine, he was feeling okay, and we developed a predictable routine. He had very few side effects.

Then we got a call on Saturday that he had a cough and seemed to have shortness of breath. It wasn't significant, so I waited to call the doctor until Monday morning. They had him come in, did a chest x-ray, and labs. It looked like some pneumonia in the lungs so they prescribed an antibiotic. He developed a fever on Tuesday, the doctor called us to bring him back in on Wednesday and they repeated the x-ray and labs. The pneumonia was spreading and there was a spot that was inconclusive for pneumonitis - an inflammation of the lungs caused by a drug reaction. They put him on steroids. About five hours later we were in the ER and his oxygen saturation was only 71%. They admitted him to the hospital and he spent almost a week on oxygen, had multiple x-rays, a CT scan, and a bronchoscopy. We needed to confirm that he had pneumonitis caused by the Opdivo before we could know how to proceed.

We knew to watch for a cough, but we had no idea that pneumonitis could spread so quickly. Within days, he developed lung inflammation over more than 75% of his lung tissue, which made it a grade 3 reaction. If he'd been on a ventilator instead of oxygen, it would have been grade 4. Grade 5 is dead. During this time they were giving high doses of steroids trying to get the inflammation under control and to improve his breathing. It was becoming obvious that the current treatment could not be continued, but we had not idea what would be next. When his specialist outlined treatment options in October, he had hoped Alex would get six months to a year on the trial drug, and another two years on Opdivo. We exhausted both in a few months. Those first few days in the hospital John and I truly thought that Alex might be out of options and he might never recover from this setback.

Alex, always a trouper, kept his positive attitude in the hospital. His nurses love him. John, Jessica, or I were with him throughout the stay - most of the time, more than one of us. John and I slept on the hospital cots.

After a week in the hospital, Alex came home for a week. I went back to work and John stayed home with Alex. Our doctor assured us that we were not out of options yet, but we didn't quite know what to expect.

Alex already had a PET scan scheduled. It was meant to be done after six Opdivo treatments to see if it was working. We kept the appointment so that we could assess the current state of his cancer and so the doctors could decide the next steps. When we get his PET scans, we travel to Froedtert for the scan, then see the lymphoma specialist the same day. He does a preliminary reading of the image. The following day, we were to meet with our local oncologist and begin the new treatment.

Alex had the scan and we met with his doctor. The doctor brought three images up on his monitor - October (relapse), December (after the trial drug), and current (after Opdivo.)

The scan was clear. No cancer.

We had not even allowed ourselves to anticipate the possibility. Honestly, I felt numb. I had worked so hard to steel myself for another disappointment and to be prepared for the next treatment. I didn't even know how to process the information. When we learned of Alex's relapse, we thought he would get treatment until nothing worked and he was out of options. We did not expect to get to this place of remission ever again.

We also had to process the fact that this drug worked tremendously against Alex's cancer, but were very toxic to his lungs. In the scan, his lungs looked like they were literally on fire. Due to the severity of the toxic reaction, he cannot continue with this drug.

I love Alex's doctor and his style and way of processing and sharing information works very well for us. He is honest, but has a very soft spoken and reassuring demeanor. He doesn't give false hope or placate you. Statistics tell us that the cancer is still lurking somewhere. It is almost certain to come back, but for now, we can enjoy this remission. It's a little hard to be joyful when you know that danger is just around the corner. It's hard to feel carefree when your experience tells you that cancer is much too complicated to allow you to be carefree.

So we really do think of this as a "cease fire." We have a break. More importantly, Alex has a break. His first real break in over two years.

The next PET will be in four months, unless his cancer symptoms return before then. In two months, we see his specialist to talk about other treatment options, including the possibility of a donor transplant. That is the only curative option, but one that is extremely risky. The chance of cure is 50%, but only 25% have a cure and a high quality of life without complications from the transplant. There is a 20% chance he would die from the transplant. There's a lot to consider.

We can forego the transplant and try other options to try to get him back in remission or slow the progression of disease once he relapses. He's not out of options yet. There's a chance that something new could come along while we're doing all of this. Another new drug was approved a few days ago.

We celebrated the good news by taking Alex to his favorite restaurant - Fazoli's. 

We are happy for the good news. and are looking forward to spending spring and summer enjoying this remission. We have a family vacation to Disney World planned for June. We won't squander this opportunity, but we are very cognizant of the specter that looms over our shoulders.

Line Up and Wait

John and I fly out of a towered airport. That means we need to contact the tower for permission to take off and land. Prior to take off, we follow an exacting checklist to make sure that both pilot and airplane are in a condition for safe flight. When the checklist is complete, the radio call sounds something like this:

Me: "Appleton ground, Cherokee 1599R is at the south T's ready to taxi for take-off, southbound, I have Lima (or whatever the appropriate call sign is for current weather).

ATC: "Cherokee 1599R, taxi to Runway 30 via November." (November is a taxi-way.)

The directions are precise and predicable. We follow prescribed procedures.

Once I get to the runway and do some more tests on the aircraft, I contact ATC again, this time on the tower frequency."

Me: "Appleton tower, 99R is ready to go on Runway 30."

Usually the response is:

ATC: "99R, Runway 30 is cleared for take-off, right turn to the south approved."

If the airport is busy, however, my instruction might instead be:

"99R, line up and wait."

That means I can get on the runway, but I have to wait for further clearance to take off. My engine is running, I'm ready to go, but I can't go just yet.

I feel like that describes my life right now.

Alex's cancer is like "line up and wait."

We've been told his cancer is "very refractory" and "resistant to treatment." We've been told the current treatment options are "not curable," but that they have kept other people's cancer at bay for "some time."

When we went through the clinical trial, there were a lot of appointments. To say we were disappointed when he developed a rash over more than 75% of his body three days before his third infusion would be a drastic understatement.

This week he goes for his third Opdivo infusion. He has tolerated it well so far, but starting yet another treatment has him understandably on edge. After a rise in his anxiety post-stem cell transplant, we made some medication adjustments that seemed to hold his anxiety in better check. Now with the latest new treatment, he's struggling a bit again. Who can blame him.

I hate that he can't ask us questions or tell us how he's feeling or processing this latest news. We've believed all along that he understands that he's sick, but we can't talk through anything with him.

I'm on edge as well.

This treatment schedule is easier on everyone. Alex is getting back to a somewhat normal routine at his group home. We go for treatment every other week for an afternoon. There are a few other appointments scattered here and there, but it is manageable.

This time, however, there is no end in sight. There isn't the count down of treatments we did with ABVD and ICE and Brentuximab. No, "six down, six to go."

I keep telling myself, and others, that I won't waste the time Alex has and I won't live from appointment to appointment and I try, but it's really, really difficult.

We're trying to live our lives as "normally" as possible, knowing that our normal has changed so much.

Alex is at his house, and he's comfortable. He didn't have good leisure skills to begin with, and cancer certainly hasn't helped that. He is tired a lot, and his anxiety compounds that. He naps daily, and spends a great deal of time in his room, in bed. He does get out with his housemates, rides along on errands, and goes on outings. I feel like his caregivers have a really good sense of when to push and when to let him be.

John and I are working, trying to keep with our normal routines as well. Sometimes it's hard, and sometimes it's a welcome distraction because when I'm in the classroom I'm able to focus completely on my students. There are bills to pay and responsibilities to meet, so there isn't an option to just retreat. I also know full well that retreating wouldn't be healthy for any of us.

Sometimes I'm exhausted putting a good face on all of this for others. I know people want to make us feel better, but I often feel like I'm making them feel better. "Yes, Alex is feeling okay." "His rash is gone." "Maybe we'll have time to find a new treatment."

Other times I feel guilty for "making such a big deal" out of all of this. Alex is feeling okay, right now. The doctors haven't given him an "expiration date" and I feel like that means we're measuring time in years, not months.

I also feel guilty that Alex is not at home with us all the time, yet I know it's better for all of us to continue his routine as long as possible. We can work because he has caregivers. We get a break from caregiving, and he gets a break from me hovering over him.

We do see him often - every few days - and make sure it is not just for medical appointments. Alex really isn't a "bucket list" kind of guy, but we're trying to make as many memories as a family as we can. I'm not sure exactly what he wants, but we're trying to do what we think gives him the most comfort and enjoyment.

Even though he feels okay now, I know his health is precarious and cancer is unpredictable and capricious.

All of which leads me to this place, this point of throwing up my feelings all over the page, trying to make sense of all of this. Trying to make sense of the fact that my son is slowly dying and that the best we can hope for is to delay the inevitable. Wondering if anyone at all will make it this far into my rambling post.

At the same time I'm trying to expose what's real and raw, I fell compelled to end by making you feel better. "We'll be okay." "Our family is strong."

I do appreciate the fact that I have time with him now, and I do appreciate that he is feeling pretty good. I am trying so hard to live in the moment and ignore the future. I just wish that holding it all together didn't take so much energy.

Alex Needs Your Help - Please!

I've been writing for two years about my son Alex's battle with cancer. I've shared the many ways that Alex's autism complicates his treatment and how he lives every day with cancer.

Today I write with a different purpose. I am writing about how the proposed changes to healthcare will impact Alex. I am hoping that this blog post will reach further than any other I've written. If you are reading this and you are concerned about the current state of healthcare and anxious to see changes, I desperately hope you will take the time to read this. Perhaps learning about Alex's story will help give a face to this issue. Alex, and thousands of other people, need our help.

The Trump administration plans to convert Medicaid into a block grant program, and it seems that they intend to do it quickly. It is highly likely that this change will result in reductions of benefits and access to healthcare. Alex's treatment is costly, and if he is denied coverage and cannot continue his treatments, he will die.

This isn't a game, or a discussion of political ideology, this is life or death.

I ask that you simply contact your representative and ask that they slow the process down to fully understand its impact. There is absolutely no reason to move on this change so quickly.

So you ask what you can do? You can help by protecting Alex's access to his critical medical care. Alex's life depends on you. Please!

We are writing to our representatives, as well as to Senator Ryan, the architect of the block grant legislation, and following up with personal phone calls.

This is the letter we are sending to our representatives:

Dear Senator Johnson,
Dear Senator Baldwin,
Dear Congressman Gallagher,
Dear Congressman Ryan, Speak of the House of Representatives,

I am writing to you on behalf of my son, Alex Forster. Alex is a 26 year old man with autism. Alex is nonverbal and requires constant supervision. He lives in a group home not far from us and has been thriving there, thanks to the government programs that provide for his care. He lives in a home with three other young men who also have developmental disabilities and they have around the clock caregivers. Alex has a part time job and is active in the community.

Two years ago, Alex was diagnosed with cancer. He has endured multiple treatments, including more than one chemotherapy and a stem cell transplant. After several months in remission, we learned recently that his cancer is back and the battle continues. He is receiving an immunotherapy treatment that we are hoping will extend his life. Right now, he feels pretty well and the side effects of his treatment are minimal.

Alex's healthcare is provided through Medicaid. He has received excellent care at Froedtert Hospital in Milwaukee and Fox Valley Hematology and Oncology in Appleton. Due to his current Medicaid coverage, Alex's doctors have been able to make decisions about his care based entirely on his medical needs. His doctors and his medical coverage have saved his life.

We understand that congress is looking at converting Medicaid to a block grant program, and that this change may happen quickly. We implore you to not rush to making changes without thoroughly exploring the consequences of these changes. We ask you to vote no on any immediate changes and take time to carefully explore options that will protect our most vulnerable citizens.

If the decisions about Alex's medical care are made by politicians with the emphasis being on cost saving measures, and these politicians refuse or cap Alex's medical care so that he cannot get the treatment he needs, Alex will die.

Let me be clear, if Alex is denied treatment due to changes in Medicaid funding, he will die.

This is America, and we ought to be able to protect our most vulnerable citizens. Alex, and many others like him, are counting on us.

Thank you for your time and consideration. We will be following this letter up with a phone call to your office.

Sincerely,

Caroline and John Forster

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