Catching Up, Part 2

Shortly after C came home from the hospital, the hemoptysis (the coughing, bleeding fits) began again.  In short bursts, usually first thing in the morning, occasionally at night.  Maybe once a day or every other day.  We were fairly laid back about going to the ER, they weren't the same dramatic events that had shown up in November.  When we did go, his blood counts were usually fine, lab work came back normal, and chest X Rays didn't show anything of concern.

We started to wonder if it had to do with the sepsis, the treatment or the picc line.  He still didn't feel as though it was coming from his lungs and it was seemingly connected to some sinus issues he has been dealing with as well.  We became concerned that maybe they should do a bronchial scope, maybe there was something going on in his throat that they hadn't caught because they were focused on other things.  

This week, after getting the CT scan of the lungs that our doctor had ordered, we went to the ER once again.  C had had a pretty rough hemoptysis event the night before and had adopted a wheeze when he breathed.  He wasn't in pain, just an obvious change from the "normal" events.  We presented the disc from our scan to help the doctor get a quicker picture of what was going on.  He ordered all the normal tests and called the oncologist to go over them.  As we waited we got an unsettled feeling as the doctor popped in and out asking questions.  They cut us loose due to everything being "normal", but mentioned that it looked like the tumors in the lungs had grown and that we should follow up with our oncologist.

Today we had that appointment.

After reviewing the scans with us and doing an exam, he informed us that the cancer in his lungs was indeed growing despite treatment.  The tumors have become treatment resistant and that there are no further treatment options he can offer us.  He is encouraging us to go explore experimental treatment protocols, such as those we have been through with NIH.

After everything that has been thrown at us in the last month, I had hoped that there would be better news, another round of chemo, another treatment of some kind...... not nothing.

Catching Up, Part 1

The aftermath of finding the cancer in C's brain, for a short while, was remarkably uneventful.  I think it helped that when the doctors came in with the news there was already a plan in place, everything moved quickly and his headaches, double vision and dizziness soon dissipated.  Our friends and family have rallied around us helping with childcare and food delivery, making everything less stressful in so many ways.  Then halfway through radiation treatment, C spiked a high fever.

 We rushed once again to the ER and after a long series of tests found that C had sepsis, a blood infection.  He was admitted as they worked to figure out which bacteria they needed to treat for and where he source of infection was.  They never quite figured out the latter for sure, since there were no obvious infection points they made the assumption that his port was either the primary or secondary source of infection and needed to be removed.  So they removed it and installed a Picc Line to administer the antibiotic through, which could be done at home.  So finally after a week of having to stay at the hospital he was finally released, feeling stronger than he had since before the brain symptoms started.

The home nurse came on discharge day to teach us how to use the picc line and how to administer the antibiotic, which I'll spare details but it is very involved and time consuming.  The girls have become quite comfortable playing nurse and assisting Daddy with his treatments, we felt that this new hurdle was past us and have been slowly looking at planning some sort of getaway for us and the girls once the treatment is over.  Family time has been completely lacking lately and sorely needed as we navigate these new developments.

A Devastating Blow

Finding the right words to explain the events of the last few weeks is proving insanely difficult, not wanting to commit the words to paper is not helping the cause either.  I am sure this will be more disjointed than I intend.......

The Friday following Round 5 I had to rush C to the emergency room.  He was unable to keep any food/drink down, got dehydrated and disoriented.  They gave him fluids and kept him over night for observation.  After returning home, he seemed to feel better and we went on about our week.  C felt good enough to go to the office, and did so a few times on his last recovery week (which he gets 2 between each chemo round).  Then the following weekend hit and everything fell apart.

Friday afternoon, after working from home most of the morning, C had exhausted himself and didn't feel quite right.   He began to get some of the same symptoms from that past weekend.  We figured it was some rebound sickness and decided to forgo the ER and see if we could just do better with fluids this time.  He was sick a few times during the night, and started to complain of a pounding headache.  This is important to note because in all the time I have known him, C has never had a headache.  It was Saturday morning when I started to get that uneasy feeling but decided to take K (and the entourage) to her riding lesson to let C rest. Some members of our wonderful church family were coming over to help with yard work that C hadn't been able to start yet and I figured since people would be at the house I could leave him.  When I returned, I learned that the guys were concerned as when C went to greet them, he had to sit back down on the stoop and was sick to his stomach.  I decided then that we would go back to the ER.  While there they gave more fluids, and did a chest x-ray, and found that his RBC counts were a little low, but nothing else explained his symptoms.  He offered to do a brain scan since we mentioned the headaches, but sounded like it wasn't necessary and C opted not to have one.  In retrospect, that was a mistake.

Monday I took him to his doctor's appointment/ Round 6 chemo, the doctor shared my concern over the headaches and promptly ordered a brain scan which we were able to get scheduled for Tuesday afternoon.  I left there more upset that my fears were shared with his doctor, I was hoping I was over reacting.  Unfortunately the events of the next 48 hours would prove those fears valid and we would have to change course once again.  I went to pick him up from chemo and found him laying on the floor by the entrance, apparently by choice.  His headache was so bad he decided laying down would be the best way to wait for me to arrive.  But when he went to get up, his body wouldn't cooperate.  Eventually we got him to a chair and he was then able to lean on me to get him into the car.  I should have gone back in and told the nurse, I should have forced him back to the ER, but he said he was just tired and wanted to go home and rest.  So we did.  Unfortunately that night on his way to the bathroom he couldn't find his balance and once again his legs wouldn't cooperate.  I called an ambulance, but by the time they arrived, C was back in his chair and felt better.  They left since C refused transport.

Tuesday he seemed fine, back to normal, like the events of the day before hadn't happened.  We went in for his chemo and I was hopeful that I was over reacting and maybe it was just a sinus headache and maybe the chemo just hit him harder the day before.  I reported all the previous days events to his doctor and even though C was feeling better he wished the scan had been scheduled the day before so we could know what is going on.  We went on in and got the scan that afternoon, and everything seemed back to normal.

Wednesday morning I took him to his third day of chemo, as we walked down the hall to check in, C's legs gave out again.  Fortunately there was a man nearby who saw it happen and helped me guide C to a chair as I struggled.  They brought over a wheelchair and took us into the doctor's office, after taking his vitals the nurse went to tell the doctor what had happened.  After what seemed like forever, the doctor came in with the radiation oncologist..... the scan had found tumors in his brain.

About 10 spots, two of significant size.... one in the forehead area and one in the back near the brain stem.  Neither of the two sizeable ones needed to be removed immediately as they weren't to the point of major damage.  But since there were so many spots we needed to forgo chemo for the moment and focus on these new tumors.  The new course of treatment is 3 weeks of daily whole brain radiation and steroids to help reduce the swelling.

A Long, Quiet Ride Home

We left NIH yesterday, together.  C and I sat in some of the longest, uncomfortable quiet I think we have ever experienced as a couple.  Neither of us sure what to say, not wanting to send the other into uncontrollable tears, but wanting to say something.  This week was supposed to be round 4 of our 6 round chemo trial, but Monday's scans were not what we were hoping for.

Just three weeks before, the CT scans showed dramatic improvement in the tumors in C's lungs, a 28% reduction after just two cycles of chemo.  We were so relieved and excited to finally have good news to share with our family and friends who are riding this roller coaster with us.  However, among that good news, we were told that two of the tumors, one in the lungs and one in the pelvis, appeared to grow since the baseline scan in December.  The doctor seemed sure that this was due to growth that occurred prior to starting treatment, growth that hadn't reduced to below baseline standards.  We were told they wanted to repeat the scan prior to chemo round 4 to confirm their suspicions.  With that we checked him in and proudly announced to our friends and family the good news.

This Monday we went in just like the time prior and got the repeat scan.  It was actually almost eerie how smooth everything flowed, on time without issue or incident.  We spent the time between scans perusing menus of local restaurants that we thought we'd try to sneak out to before his treatment started that night.

Then the doctor came in.

It turns out that while the lungs were stable and looking much better in response to the treatment, the tumor in the pelvis was a different story.  While the growth had slowed, it was still continuing to grow in spite of the chemo.  Since the lungs are stable, this has become a more urgent issue, requiring radiation.  As this is outside of the scope of the protocol, we are now off the study.   Appointments are scheduled for this week with our oncologist and radiation oncologist to decide the next steps.

I am trying desperately to be thankful this is being caught so early, one of the benefits of the many scans we have recieved .  I want to be hopeful that by being so proactive, we can eradicate this renegade tumor.  I want to be a comfort to my husband who has to struggle with new doubt, frustration, and fear.  I want to be strong for our children, to not take out my fears and anxiety out on them but instead teach by example on how to weather the uncertain.  I want to have faith that He is in control despite what feels like endless setbacks.  I really, really want to.........

Overdue Update

Time has stood still and sped by all at the same time.  The biopsy from C's lungs came back malignant setting our travel plans for Thanksgiving awry, our holidays became uncertain, and once again we were faced with the unknown.  We returned to NIH where C had just joined a study and learned that chemo would definitely be the next step which then disqualified him from that study.  In our meeting with the doctors we learned that prostate cancer can mutate in this way, especially in younger men with the disease.  A difficult pill to swallow and a very disappointing setback, but we were told that they would forward his file to a few other teams and maybe here would be another study we could look at.  On the way out we visited with a friend of ours who is an oncology nurse there, she explained a couple of things that we weren't clear on and offered more love and support.  By the time we went to my parent's house to pick up the girls, not 10 minutes away, we received a call from her that C's file had been placed on her desk as a possible participant in one of her studies.

The new study that we considered, then signed up for, is a phase 1 study focusing on the cancer in his lungs.  Phase 1 means that there is no control or experimental groups like the last study.  This one is testing the amount of the medicine that patients can stand with the hope that the tolerable amount will increase the benefit of the current standard chemotherapy.  As C is one of the later patients to enter the study, they are reasonably sure of the beneficial amount.  This combination of chemo, the standard of care and the experimental medicine, is given in 21 day rounds.  For the first four days he stays at the hospital while the treatment is administered, He then gets the next two weeks to recover before starting again.  The goal is to receive six total rounds, tonight is the eve of the third round.

Tomorrow we will go in and get a CT scan to look to see if there is any movement with the tumors in his lungs.  If there are no adverse effects we will continue for four more rounds.  We have no reason to believe the cancer in C's lungs is not responding, so hopefully they will be able to give us good news, that maybe it has shrunk by some measurable amount.  There is a certain amount of fear that we won't, but we can't focus on that possibility. 

We have been blessed by so many friends and family who have been by our side through this rough time.  Friends who have helped us with a food train to take meal planning off of our shoulders, including one friend who didn't let a "little" ice storm prevent her from delivering a meal to us..... sacrificing her own safety and sanity.  Those who have sent texts and notes, encouraging us through prayers, generous offers of time and energy to help with whatever they can.  Others who have dragged me out either for adult time away or play dates when I can't leave the girls, offering an escape from my own thoughts and fears.  I know I'll never fully be able to verbalize the amount of gratitude we have that so many have been placed in our path that have helped hold us up, but from the bottom of my heart thank you all for everything.

An Unwanted Anniversary

Today marks one year since we received C's diagnosis of stage 4 prostate cancer.  We have been blessed by friends and family who have held us up, stood by us, and stepped in when we have needed help.  We have weathered the difficult side effects of the cancer and the treatments, confronted our fears, tried to find and hold on to hope where we see it.

With a year under our belt, there is a small sense of victory in that this time last year everything seemed helpless and dark.  C has been progressing and finding his stride in tempering his treatments with returning to our "normal" life.  Researching new treatments, diet, and finding a voice for the awareness of prostate cancer and the fact that it is no longer an "old man's" disease has given us encouragement to keep going.  C had returned to normal work, back to fully involved Daddyhood..... even finding time to be back to DIY everything around the house.  He was able to jump right in to Mr Mom gear when I had to have an emergency appendectomy and was hospitalized overnight.

We were set to travel to visit family and friends in TX who, through the beauty of the internet, have become strong supporters and prayer warriors.  We were looking forward to thanking everyone in person and spending time with family who we haven't been able to see in a long time.  C has felt pretty good overall, working with his doctors we have felt on more solid ground, and felt confident in our travel plans.

Then he coughed up a few small blood clots.  Naively we hoped that this was an ENT issue that would be quickly resolved and we would still be on our way.  The emotional roller coaster began again with the alarming discovery of nodules in C's lungs following a CT scan.  A biopsy has confirmed they are malignant.  And once again we are left wondering how, why, what, huh?  Once again, completely symptomless (no hacking cough, chest pain, or difficulty breathing as is typical with cancer in the lungs), we are facing a new uncertainty of what this cancer is and how the treatments will affect him and our family.

We have already seen how this is becoming difficult for the girls.  They had a rough time with the change of routine while Daddy spent a week in the hospital.  K is asking more questions than ever, ones that I wish I had answers for.  H is now waking in the middle of the night and wanting to climb into Mommy's bed for snuggles.  T is still our beacon of joy,  happily enjoying the bliss of ignorance to all that we struggle with.

It is a difficult blow that this is how we spend the anniversary of his diagnosis, once again waiting on biopsy results, praying they are wrong, and anxiously hoping the oncologist is able to start the right treatment right away.  We are relatively sure chemotherapy will start shortly after Thanksgiving, but whether we go through a new study at NIH or here in Frederick is still in the air. 

In a nutshell........

"They're admitting me for the night. Apparently I have mestases in my lungs and one is bleeding. There's no concern that my lungs will fill up, but they are going to talk to [oncologist] in the morning about possibly seeing a pulminologist."

This is the text that I received from C at 12:24am Tuesday morning.  We had debated then decided he should go to the ER Monday night following the "coughing up" of marble-sized blood clots.  Most would ask why there was a question in the first place, after all, that isn't normal. The reason was twofold, first it had happened a few weeks prior though shorter in duration then went away, and second, when we asked the doctor, they felt it was an ENT issue.  There wasn't any pain associated with it, it felt as though it was coming from his throat not his lungs.  However, that night they sent him for a CT Scan and discovered many "little marshmallow sized spots" peppering his lungs.  Being that C has metastatic prostate cancer, the immediate assumption is that the cancer had spread further into his lungs.

Following the initial diagnosis from Monday night, he has undergone further tests including a bronchial scope and biopsy to pin down what is going on.  Unfortunately, the results have been mixed.  The initial scan shows pneumonia, yet C has had no symptoms.  The scope didn't find any tumors, and was able to see that the bleeding had stopped..... yet still didn't find a reason for the initial bleeding. The biopsy will take awhile to come back.  Our next steps on the cancer front hinge on those results, and we'll deal with that when/if it comes.  Our frustration now is not knowing why these clots are coming up in the first place.  He continues to cough up clots, though they are infrequent and smaller in quantity.  They are still determining when they will feel comfortable letting him leave, we are hopeful for the weekend, the doctors can't seem to agree on what the criteria will be.  So we are in limbo.

This information feels like yet another sledge hammer hitting us in the gut.  C has had no new pains, in fact he has felt good enough to finally commit to traveling to TX for Thanksgiving, which we have had to postpone.  And even throughout his stay in the hospital, he hasn't had any pains aside from the typical ones he has had all along.   

Hopefully we will get answers soon and C home sooner.