12th Infusion Complete!

Just a quick update here: The 12th infusion had a long delay at the start because of Aliza's port acting up. However, once she was in her seat and the IV connected, the infusion went smoothly - much better than last time and an answer to prayer!

We're now back home and Aliza is fighting nausea and the general symptoms she usually has immediately following chemo.

 As Aliza regains her strength, she'll be getting back to updating her blog (sparkmanescapades.blogspot.com).

Just a reminder, July 3rd is the PET scan - we'll be sure to share the results.

Final Infusion! And follow on details

Hi Everyone,

Aliza is doing well this week following from her 11th chemo infusion on May 22nd. The four days immediately following that infusion were really difficult for her emotionally / mentally and I am anticipating a similar reaction for her last infusion. The nurses also had to fight her port with difficulty getting blood return (essentially, they apply negative pressure to the line and expect to see blood coming out of her port - its a verification that things are working correctly). This made for a longer than expected visit and also was very tiring for Aliza. So, for her final infusion, please be keeping these two items in your thoughts and prayers for her.

On July 3rd, Aliza will go back to Simon CC for another PET scan and a consultation with the doctor - hopefully with details regarding the scan. This will confirm whether or not the last 6 months of chemo infusions have done their job. In the mean time, Aliza will be recovering and regaining strength.

As always, thanks for all of your support! It's hard to believe that it has already been 6 months... We couldn't have managed this without you all.

Thanks,

Rob

Off to Infusion 10

Aliza has one month of treatments left! Three more infusions, including today's, and God willing, she will not have to think about chemotherapy for a long time.

Infusion 9 gave us a chance to talk to Dr Azar and get some information regarding the CT Scan and Pulmonary Function Test (PFT) and the results were very encouraging... and for Aliza, a degree of disappointment. Firstly: the lymphnodes show a significant reduction in size. This means the chemotherapies are doing their job exactly as hoped. These remaining 2 cycles (starting two weeks ago) are intended to keep the pressure on any remnant cancerous cells because if even one single cell survives, then the cancer will return and further chemo treatments are not an option - Aliza would have to go to stem cell / bone marrow replacement treatments. So, the disappointment for Aliza came in the form that although the chemo is working, she has to continue to receive the infusions which results in some complicated mental battles. She's holding on and we'll carry on.

Next: her breathing test (PFT) had good results. Aliza is not experiencing excessive damage to her lungs caused by the bleomycin as was the concern. It has some interesting side effects during the actual infusion (think elephant sitting on your chest and the nurses wanting to run an EKG), so she always has to ignore that one.

So, Aliza is off to another treatment, number 10, and is eagerly anticipating receiving her final infusion on June 5th.

The past two weeks have actually been "good". Her recovery following the infusion was pretty smooth and not nearly as up and down as at the beginning stages (a further indication that she is beating the cancer), she was able to go out to dinner the Friday following the infusion, and she attended the women's conference at our church this past weekend (the timing of which really couldn't have been better, so we are thankful for that).

Thanks again for everyone's support. You all have made this journey much easier than first feared and I can't imagine the struggles people have who don't have a group of friends and family surrounding them. We certainly count ourselves as blessed.

Infusion 8 Update

It's been pretty busy around here; just that time of year.

Quick summary: We're on track. Next infusion is Monday and we'll get a formal update from the Doctor about how the CT scan looks and a more detailed answer regarding the PFT.

Aliza's biggest struggle this past week... and probably for the duration of the chemo treatments... is chemo brain. It's hard to describe and I have erased several descriptions that just don't seem quite right. Suffice it to say, Aliza has a significant build up of medicine in her body of varying potency all churning throughout her brain's chemistry, draping a veil around her reality. If you've experienced waking up from being in surgery, that might offer a hint. Right now, on top of the direct impact the meds have on Aliza, there is also a lot of emotional strain ranging from feelings of incompetence to loneliness to wanting to be alone to guilt at not being able to be a better mom.

There's more on the blog, and one post that goes through a daily update. http://sparkmanescapades.blogspot.com/

Another Infusion Complete; CT Scan and Testing

Aliza's recovery following her 7th infusion has been remarkably easier than other ones before. The day to day ups and downs were not nearly as severe. We're very thankful that the past week has been pretty good.

The biggest news is that tomorrow (today?), Aliza is going in for a breathing test (8:30 AM) and a CT scan (10AM). Following on from the previous Dr. visit, some of her fatigue has been caused by a shortness of breath and difficulty with physical exertion. For instance, climbing a flight of stairs requires a stop or two on the way up. One of the chemotherapy drugs she receives can cause lung damage, so she will start the day with a pulmonary function test.

Immediately after that is finished, she will hike (hopefully wheel!) across the hospital for a CT scan. This is an important check up to see how the lymph nodes are responding to the chemo treatment. Essentially, the doctor is looking to see whether the nodes have shrunk. The big fear is that they haven't, and worse, the disease has spread. This does happen about 5% of the time, so it isn't beyond the realm of reason. There are signs that the treatment is going to plan as her chronic cough seems to have ended and the other major lymph nodes (neck, arm pit) are still normal (to an external examination).

Please keep Aliza in your thoughts and prayers tomorrow as she will definitely be fighting some anxiety. I'll send out another update once the results are in!

Halfway Done!

Wow, it is great to think that from here on out, each visit to the hospital will mean that Aliza has completed more infusions than she has remaining.

All is going, more or less, to plan. The Chemo continues to take its toll on Aliza physically, but the halfway milestone is an encouragement. In another month, she will have a CT scan which will hopefully have some good news. And, God willing, in three month's time, a PET scan will reveal that the cancer is in remission.

Until then: 1 day at a time; 1 week at a time; 1 infusion at a time.

Aliza has posted an update or two on her blog, she might have some scheduled to automatically post in the next few days too...

sparkmanescapades.blogspot.com

We've expanded out the meal sign ups through the end of April. Please use the MyCancerCenter calendar to sign up as it can be very hard to juggle who is doing what without it. We intentionally space things out for every-other-day because we often have enough in a single meal for left overs.

Also, if you'd like to schedule something that doesn't exist on the calendar, please send me an email or text and I will be happy to add it. Between the kid's schedule, Aliza's doctor appointments and medicine schedule and refills, the demands of work, we REALLY have to be organized or else this whole journey becomes even more difficult.

Thanks for all your help and support.

The New Normal

It's really annoying to have to say that my wife's bi-weekly chemo infusions has become "normal". But... well, it has. The shock that comes with a sudden change in the flow of life has worn off. The typical fears, concerns, difficulties are just a fact of life now. This isn't to say all is well, but a routine has developed which makes things easier.

Through it all, and this is a way I have always viewed life, in planning for the worst and hoping for the best, we've seen some personal growth that is - dare I say - worth the trial. The small things are more significant now. Our kids are taking on new responsibilities. My relationship with my wife is better (she finally likes me! I jest, dearest ;), I know you still just put up with me!). This is an opportunity where we can clearly identify true things of value to our children... and ourselves too... such as spending time with one another, helping those in need, and living a life of gratefulness & thankfulness. When you wake up and take a deep breath and you have a moment free of pain... do you recognize what sort of gift that is?

My last post mentioned the difficult days. This one is to say that there are good days too. And during the bad days, there are good moments. And when everything seems horrible, there is always something to be thankful for.

We're thankful for friends and family who pray for and look after us.
We're grateful to have support from work.
We're relieved that our kids are really great.
We're refreshed when worshiping at church.
We're comforted by our God who is faithful.

5th Infusion; 42% Finished!

Good Evening =)

First, a bit of recap from the last infusion. The intervening days between chemo 4 and 5 were surprisingly difficult. Aliza had a lot of new pains, new challenges, added to the old ones. Finally, around Friday (Thursday had moments that were deceivingly good, but sudden onset of complete exhaustion) she started to feel more human with some stamina. We were both so very relieved for all the support we've had - and some of the side benefits of receiving meals (not having to plan what is for dinner, not having a huge mess to clean up, not having to race home from work to cook, having a SIMPLE grocery list) just became really apparent. So I just wanted make sure that we expressed how grateful we are.

Today Aliza received the 5th infusion and I'm going to claim at a huge milestone point because we are 42% complete (let me round up!). Why? Listen to, or read (watching isn't so good), Hitch Hiker's Guide to the Galaxy.

Dr. Azar confirmed that all of Aliza's new symptoms are expected... just sooner than expected. One of her known interactions with medication is a high sensitivity to whatever she takes, especially side effects. So, the mental affects from the nausea meds hit hard, and she has to take a half dose; Nyquil means Darth Vader is coming to visit. With Chemo, her hair started falling out one cycle early and pain in her hands and feet has shown up 2 cycles early. Unfortunately, there is no correlation to chemo working better (or worse) when this happens. We're now home and managed to eat another excellent meal, got Fixer Upper playing in the background, and hoping and praying that the Chemo crash this week is better than the last infusion.

As a final note, JeriAnn has filled out the meal dates through April and there plenty of opening available if you were waiting for the schedule to clear up. We made some slight tweaks to the days that will work best for us by adding a meal to help with infusion days (those days can be more unpredictable, for instance, the next few infusions will start after 2 PM vs 10 AM) and the weekend meal is a heat & serve meal since church or other weekend activities can be unpredictable.

I hope this mostly catches everyone up, at least generically, with what has been going on since the last update. Sorry for the long delay!

Thanks for all your support,

Rob

Right is Wrong and Up is Down

Supporting someone battling an unseen foe is difficult. For one, how do you see any progress? How do you know whether the effort is making any difference? Each day is different and there is no predictability. My wife's struggle against her disease has drained her physically to the point of a strange exhaustion and the chemo adds another twist to the battle with an emotional component where she must cope with the way it is forcing her body to change and demanding a change in lifestyle.

For those who know my wife, you are familiar with some of her ways. Her desire for everything to have a correct and proper place; for nothing to be left un-done; for things to be planned and anticipated; for a certain level of cleanliness; for the home that she presents to guests to be one where they feel welcomed and comfortable, where they aren't intruding. You also know that she has very strong emotions that can flare up in... unexpected... ways even in the best of times.

Now, take away her ability to stay on task, take away her strength, take away any semblance that a plan will be kept. Add in continual nausea, a battle to keep the contents of her last meal down (she HATES to vomit) or to go in the right direction, headaches, a state of confusion and a foggy memory (caused by the meds that keep her "comfortable"), continual pain whether her head as her hair falls out in rapid succession or from some strange bruise caused by a misplaced step, and so on and so forth.

I'm really proud of the way she is keeping it together. I can't overstate that. So very proud the way she is fighting this battle. Staying brave for our kids so that they aren't afraid. Trying her best to show a good face to those who come near, especially those who she isn't very comfortable with because they are new or are strangers or just people that we're not close to, but who care. This all adds yet another dimension to the struggle... to people how to look towards God and trust Him in these difficult times and to find the good in the midst of it all... I'm so very proud of her.

But, as with all things, that isn't the reality 24/7. Her fear gets voiced when we're alone and everything gets turned inside out.

My struggle is staying calm and to be comforting to her when those walls shatter. To help her regain that ever flagging mental control. When her strength fails and rationality is at an end. When the fog overwhelms and up is down and good is bad and nothing makes sense. When the reality of cancer is most pressing and she just wants to give in and give up.

Pray for us to make it through those times, for us to look up.

Third Infusion

Firstly: A huge thanks to all the people who are helping out with meals and those sending words of encouragement to Aliza. The meals, for instance, really help us to stay on track with the routine of getting Cooper and Lillian in bed at a reasonable time without having to give up time with homework or reading a story and the notes, a flower bouquet, a small gift, are all a great surprise and pleasant reminder to Aliza of all those who care and are praying for her.

A quick update following the third Chemo infusion.

Aliza's blood work showed that she has no new white blood cells being produced. Her regular white blood cell count is also very low and well below the "safe" range. So, she is at significant risk for any infection, cut, or cold and as such we have to be extremely cautious with what she is exposed to and even what she does.

The infusion itself went well and Aliza is, thus far, recovering better than either of the two prior infusions. She is still very tired and nauseous, but the immediate drop off in ability to function following the infusion has not been as drastic.

I will leave most of the other "news" to Aliza to share as she feels up to it. My main intention is really to say thanks to everyone for caring.

Chemo: Racing Death

A Chemotherapy Drug

Cancer sucks. What is debatable is whether Chemo sucks more. All cancers will kill you, some faster than others, but the outcome is inevitable. Right now, the best cancer killer, the various drugs that are classified as chemotherapy, if taken long enough, will also kill you.

That's a disturbing thought.

Modern cancer "treatment" is really a race: will the Chemo kill the cancer before it kills you. Doctors place a limit on how many chemo infusions you can receive before your body is no longer able to safely recover from the treatments. Even then, Chemo can kill you before treatments end. If you finish, there are long term side effects that can be expected, provided Chemo has destroyed the cancer.

My wife has Hodgkin's Lymphoma and began a 24 week treatment program where she is given 4 different Chemotherapy drugs every other week. She's on week 3 and already the physical impacts on her health are readily apparent.

Watching the sudden deterioration of her health is painful. That's what is most difficult about this journey. We are all given an allotted period of time to live on Earth. Each day steadily ticks off one of our 26,000 days that we can expect to experience... and normally, we don't really notice it's passage until too late.

Cancer though... I'm watching my wife and the change from day 12,409 to 12,410 was tangible. That shouldn't happen... and this was before Chemo began.

She is currently living day 12,465 (roughly) and the pain she experiences, pain that I can't fix, pain that is only going to get worse, amplified with pain that comes from the emotional distress caused by the sudden physical deterioration being experienced... it's heart breaking.

Doxorubicin is one of the "Class A, Hazardous" drugs my wife receives and the one responsible for her eventual hair loss. It can only be administered by hand, with a close eye on how her body reacts. If it touches the skin, it can cause severe damage if not promptly washed away. 

This is the race she is running: will her body stay alive long enough for the cancer to be eradicated before the chemo kills her.

I will choose joy today because: we have friends and family praying for her survival and our family's ability to carry on during this journey; we are not alone; I am able to provide her some comfort; the pain caused is allowing us to grow closer; we will get to live day 12,466 together; death is not the end.

Second Infusion

Hi Everyone,

This is the best method I have to let everyone know the most recent update...

Aliza had her second chemo infusion today and she has responded better than the first one. Her big goal was to be able to walk out of the hospital today which she was able to achieve.

Her plan is to provide more details tomorrow on the blog, but we wanted to provide a quick update on the progress.

10 more infusions to go!

Thanks for your support,

Rob

Beyond Control

We live in a deluded world.

It is a curse that comes from the belief that we are in control of our environment, our situation, our job, our lives. That we, in some way, can successfully manipulate and thread our existence over the course of 100 years. We are then further deluded into the belief that some arbitrary definition of success will result in happiness.

Why is this, the most technologically advanced, mobile, connected, and comfortable living society in history equally the most depressed?

If you have seen some recent videos on Facebook, the reasoning for this situation is because this generation believes they are special, they have been given a silver spoon, have never been challenged, etc. While I agree all of this is part of the problem, it is not the root cause. Instead, it is our guaranteed failure in controlling our destiny.

I wrote about this before; the idea that humanity essentially believes that we are gods. It has been perverted to all sorts of areas of life from sexuality to trying to control the climate of our planet.

Inevitably something happens. Something happens that proves the fragility of this existence. That despite all of our planning, our desires, our caution, our denial of the temporal confines of our world, everything can be taken away in an instant. This can come in the form of a car accident, a violent attack, a bad day on the stock market, an attack from a foreign power, or nature itself.

What do you respond when your fragility is fully exposed?

For those who believed that life is managed only by their strength, then the result can be crushing when reality hits. For some, suicide. Others lash out and create a miniature bubble of power and control. Sometimes people who are driven can shake off this realization, and will just try again. Some live with bitter anger. Many seem to find some addiction as an escape. Ultimately, everyone will come face to face with their humanity and the illusion of control will be stripped away.

I've been asked lately if I'm doing okay following the news of my wife's cancer. The reality is, I have no choice, no control, over the outcome of her disease and I am well aware of this position. Only God knows the plan for every life on the face of this Earth and I long ago bowed to this reality. Thus, the exposure of my helplessness is not debilitating or causing me to question life. I can only choose between the options we as a family have been presented, be saddened or encouraged by the potential outcomes that may result, and carry on.

I place my faith in a man who claims to have power over life and death who also demonstrated the ultimate proof that this present existence is broken and inequitable. I take comfort in knowing this existence is not all there is to life.

The next few months are going to be hard. Life isn't going to feel good. But, I never expected it to always be filled with rainbows. More than anything, I am simply saddened at my helpless to take away the pain that my wife must endure each day of this journey.

So, I encourage each of you to stop trying to control life; to accept the world around you as it is. It is freeing to end the pursuit of "controlling" this world, or attempting to establish a little bubble of perfection. Instead focus on the little things in life - family, being warm and dry, friendship. Show others the joy that comes from helping one another. The ultimate freedom, however, comes in believing that God is in ultimate control and has a plan. When you live in that reality, the ups and downs of this world lose their significance and you can look forward to what lies beyond the horizon despite the struggles of today.

How to Help

I'm slowly learning of all of the various tasks Aliza just "magically" handled as she is being forced to take a break from her routines. I don't know how practical it is to create calendar events for each item that may arise, but I will try to detail some things for people to consider. Most of these are routine activities that Aliza tracked and managed. Jan and Lee are helping with a lot of this, but if they can't or I am traveling, then extra hands would help.

- Madison is involved in a robotics club that will meet regularly after school. In most cases transportation should be handled because our neighbors are also in the same club, but there may be a day when help would be needed. Robotics is 5:30-8:00 M,T,Th,F & Sa for the next 7 weeks. The actual meetings where Madi will be required may differ.

- Madison also has youth group at Trader's Point (near Whitestown) Sunday evenings from 6:30 - 8:30.

- Our kids can use help with homework. For instance, Lillian is starting a project that is beyond her abilities on her own and Cooper is getting his first taste of homework. If you want to plan to come over one afternoon a week when they get off the bus to supervise homework, let's work something out. Wednesday's are particularly challenging as the kids also have Awana that evening.

- Packing the kid's lunches or getting a meal ready. Even freezer meals need some preparation. If there is a night when it is just Aliza and the kids at home, she could use a hand. Right now there is no immediate need, but it could become necessary as my work schedule evolves.

- Watching the kids for an afternoon or over the weekend.

- Sitting with Aliza and keeping her company during the day. This one is simple but valuable and will become more important in the coming weeks.

- Cleaning is largely sorted out as one of Aliza's previous teaching friends connected us with someone. Before Aliza started treatments, the two of them went through the house and came up with a plan for taking on the items that the kids aren't quite skilled enough to handled. The cleaning lady comes every other week for a couple hours. But as any parent knows, there is always chores that need attention.

- Pick up and unpack a click-list shopping order from Kroger.

- Books and movies that you have enjoyed and would like to share, lend, or suggest would also be helpful. Days stretch out and become boring when all you can do is sit during the recovery days after an infusion. Please, no need to buy anything as borrowing is more fun and gets the job done just as well. You could even just come and watch the movie with her.

I'll amend this list as suggestions are given.