Chemo Journey Part 2...Patience, Learning, Enduring, Patience...

Colored folders are bills, binder is everything I didn't want to know.

The first chemo treatment was an overnight stay.  It wasn’t so bad, but the next day a constant stream of nurses came in for “caregiver training”.  Talk about overwhelm city!  First they bring in this big blue binder…full of stuff I needed to know to take care of Jake and info about the drugs they would be using on him and about Rhabdomyosarcoma.  Can you say…Information Overload!  Perhaps in hindsight I should have had Dave there with me…at least for support.

Dave would come to the hospital any time I asked him to.  He would always come and sit with Jake after work.  He would have been there more if I had asked him to.  Handling the hospital stays and care by myself was my own doing.   I had the most medical training between the two of us, so I felt I was best suited for the job.  However, I wasn’t prepared for how alone I felt at times and the pressure to do it all…not to mention how scary it was to get bad news and have no one there but your angels to hold you.  I tried hard not to cry in front of Jake.  He felt sick enough with his illness, I didn’t want him to feel bad that it made me cry…often.  I was recently told that it was ok to let him see me cry because it was ok for him to see that I was human.  I’m a leaky human!

Primary Children’s Hospital was great to make Jake feel comfortable and help him pass the time with games and stuff.  They gave him pretty much whatever he wanted to eat.  I believe week 10 was when it grew old.  I remember Jake and I both saying…”How much longer do we have to do this?!”  It wasn’t long after, that the smells of the hospital started to make him nauseous.  The smell of the hospital food, the cafeteria, alcohol swabs, hand sanitizer, even just looking at a syringe made him throw up…poor guy!  There came a point where he just didn’t want the treatments anymore.  He wouldn’t go to the hospital when he had fevers the last 3-4 months of treatment.  The doctors were very accommodating when Jake started hating the overnight stays.  They arranged for him to get his chemo all day long at clinic and to get hydrated at home.  This meant I would be his home care nurse in the wee hours of the night and morning.

I can’t tell you how many times I would apologize to Jake for the shots I had to give him (very painful).  Not because I was bad at it, but the shot would burn when it went in and for some times after.  There was nothing I could do to make it better.  We were both very grateful that we found an alternative shot that, although it hurt just as much, I only had to give it to him once after the “long” chemo. 

One of our struggles, Jake being 19, was how much say Jake had in his treatment and how much say I had.  There were times that, although “mother knew best”, he was so sick of the treatment, he didn’t want to do what was best, just what was easiest.  If it wasn’t life threatening, I had to let him use his free agency.  Since we have no way of knowing what would cause the infections or the fevers, there may be a price to pay later…or perhaps it was a good gamble.  I guess we will wait and see.

Chemo: Week 45

Finally!  The last chemo treatment for Jake!  What a test of patience! 

The Aqua Chi treatments were helping to keep his platelet counts up, but not at the end.  I believe his body was just so worn out from trying to recover the first 42 weeks of chemo, it was just getting harder and harder for the cells to do their job!  Jake finally got in with a massage therapist that helped him learn to meditate on healing.  I believe this is what gave his body the final push it needed to be ready for that last chemo poison!

Can I tell you how it feels to not have to look forward to any more chemo?  Finally, he can heal!  How sad it was for me to see Jake start healing, only to have his energy and health zapped time and time again with the chemo. 

The people we met along the way...some had worse and longer treatments, some didn't have it so bad.  Some had to travel much further and rent an apartment in Salt Lake so they could stay near their sick children.  Others had babies they had to tote with them and nurse while they were caring for their hospitalized child.  I think God made sure I met these poor souls so that when I started getting on that pity train, I would know that it could be so much more worse than it is!

Many of you ask how I could deal with the challenges I have been given...having twins, having 5 ADD/ADHD boys, son with cancer...the list goes on.  The fact is, most of the time, you don't have a choice of whether you deal with challenges or not.  The choice you have... is the attitude you have about your challenges.  It is a constant challenge to hold on to the good attitude.  As I mentioned, it's so easy to buy into the "pity party" and often the challenge is to get off the train quickly.  I believe you have to acknowledge that what you are going through is hard (sad, challenging, hurts, etc.), but don't live there!

Where should you live?  Live in Hope and Faith.  There is one more key that saves me from getting stuck in depression...service.  Serving others is a sure cure for self involvement and self pity. 

It's important to cry and grieve and feel the feelings of disappointment and sorrow that you have.  It's part of the process.  No one is saying you have to be happy 24/7.  It's not realistic and it's not healthy to bury or deny your feelings that do not bring you joy.  It's also critical that you remember that the joy comes, the heart ache goes away...eventually, healing will happen...when you let it. 

So many times we have to go through stuff that we have no control over.  There is nothing we can do to fix it or change it.  It is those times we are blessed to use the atonement of Jesus Christ to heal us.  There are many times I have to just give my pain or challenge or broken heart to Him.  I have to remember that God knows the outcome, He knows what's best and everything happens for a reason.

The most important part of the journey is to look for the good stuff!  There is so much!  Sometimes it's one lone bloom in your flower bed that peeks out through the snow.  It might be a plate of goodies or a warm loaf of bread from a caring friend or neighbor.  It could be that all the lights are green on the way to the hospital when you are stressed to get there on time.  Sometimes it's as simple as being able to make it to the bathroom before someone made a mess!  The more complicated blessings are the ones you don't see or the ones that have been in the works for a long time...like how your doctor studied about the exact symptoms you have, or came across an article or a new research that would cure your ailment.  Or how you "accidentally" meet someone who has been blessed with a gift to specifically help you through your challenges that day.  Often, what makes you feel better is not someone helping you, but you helping some one else.  Did you realize that when you lift the hands that hang down, you are lifting your own hands?

Update

Platelets were only up to 40...so no chemo...still.  We asked if he could receive platelets to make counts, but apparently, it's not allowed.  So we wait...

Cancer Journey with Jake - part I

Jake still hasn't had his last chemo.  We are waiting for is platelet counts to be above 65.  A little frustrating, I'll admit, but my feeling is that it's better to wait for Jake's body to be ready for this last poison to be put into his body, so he can start the recovery process.

Today, he is running a fever again.  Tomorrow he will have his blood drawn to see if he will be receiving chemo on Tuesday or not.  We pray that he can finish this so we can get on to the next phase of his treatment...healing! 

I was told that I'm holding my feelings in and that I should write them down or share them so they don't get stuck inside and lost...so I have decided to share this journey that we are taking...and perhaps some of you out in the blogging world are going through some of the same stuff...in some way or another, whether it's cancer or some other life challenge.  

My hope is that you will come to understand that God knows who you are, He is mindful of your needs, He knows the outcome of all challenges and it is best to put your trust in Him, because He loves you so much!

Read on... 

Cancer Journey with Jake

            June 15, 2010, was the day that changed the course of our lives.  Jake had had some swelling that was making it very uncomfortable for him to walk.  Being 19, I sent him to the doctor a few weeks prior, by himself.  He was put on antibiotics for the swelling, but that didn’t change anything.  I accompanied Jake when they sent him up to the Urology Department, the first time.  They just put him on the same antibiotics.  Subsequently, they took a CT scan to see why the swelling wasn’t going down.

            The morning started out like every Tuesday morning starts.  I made sure the two youngest got off to school, and then I was on my way to play racquetball with whoever showed up that day.  Apparently, Jake received a call from the doctor’s office telling him to come in as soon as possible and to bring his mother.  Jake called me while I was still driving to the gym and relayed the message.  I asked him if he wanted me to turn around right then and go with him to the hospital, but he wanted to eat breakfast and spend some time getting ready…so he told me to play my games and then come home.  

            You know, when the doctor tells you to come right away and bring your mom, it can’t be good news!  I lasted one game, and then I knew I had to get home right away.  My head definitely was not in the game.  I started crying (which greatly confused my racquetball partner!  Sorry Leon!) and I quickly left to be with Jake.   I distinctly remember driving up that long hill on 100 West in American Fork and the word “Cancer” popped in my head.  Then the thought, This is Jake’s “Alma the Younger” experience.  It will be hard, but you will like the outcome!

            I changed clothes, Jake was ready to go.  I called Dave because I didn’t really want this experience without him by my side.  OK, I didn’t want this experience, but I didn’t have any control over that part.

            We arrived and played the doctor’s office waiting game.  We were all a little nervous.  I didn’t share what word popped into my head earlier.  I think it was just for me…to prepare my heart.  The Urologist comes in and I believe that if they offer classes on tactful ways to give bad news to patients and their parents, he must have skipped out of that class.  He just said, “I’m really sorry, but your son has cancer.”  Then he proceeded to show us why he thought this was true.  We looked at the CT scan and all the bubbles that were his lymph nodes, swollen up.   Then he showed us a tumor that was near his bladder.  He went ahead and took a scope view to make sure it wasn’t inside the bladder, which it wasn’t. 

            So now the question was what kind of cancer was it and had it spread to other places in his body?  Did they catch it in time?  How fast was it spreading?  What were the other symptoms?  Was it treatable?  What would the treatment be and how good of outcome could we expect?  How would this affect Jake…short term and long term?

            I was holding on to hope that since this doctor was not a Oncologist or Hematologist, he didn’t know everything about cancer and he was just guessing…right?  He referred us to a lovely woman Hem/Onc docs (Heather) whom we have still, to this day, have never met.  She was our second tender mercy.  We first had to get a biopsy done of one of the lymph nodes to start doing “stains” that would determine the type of cancer we were dealing with.  That doctor said he didn’t schedule procedures on that day, but he made arrangements for the radiologist to take a ultrasound biopsy that day (so we wouldn’t have to wait) and the guy who does the tests was right there in Radiology waiting for the specimens and let them know if the samples were big enough.

            Heather Gilbert, M.D. was our Angel in Passing.  She kept us posted on the “stain” results, which was mostly…”We don’t know yet!”  They would take more slices and do more stains.  Her first test result call was, “He doesn’t have lymphoma, so I won’t be your doctor.  But I’ll stay with you until we know what it is and get you referred to the best doctor I know!”  She was definitely in the “Tact” class!  She would keep calling me or having me call her or her assistant Erin, to get the results, even if it was after her work hours.  She would keep calling the Pathologists for results and let me know as soon as she knew something.  Somehow, I wasn’t upset or distraught when it took longer, because I chose not to worry about what I didn’t know.  She was amazed at my attitude!  She remarked, “I can’t believe your patience and understanding!  I have a son about Jake’s age and I don’t know if I could have the same attitude.”  I asked, “If I were impatient or upset, would that make the outcome any faster or different?”  “No.”, she replied.  “Well, I choose not to worry about what I don’t know.  I know that you are doing everything you can to get the results to me as quickly as possible, and that is all that I can ask!”  “I wish more parents understood it the way you do!” she said.   At the end of our encounter I was calling her Heather, instead of Dr. Gilbert.  I told her she was more like a friend than our doctor. 

One of her last phone visits with me, she told me that slice after slice of biopsy material, test after test, stain after stain, they were on the last piece of lymph node.  They stained it for Rhabdomyosarcoma and it came back positive.  She related that they had to get another piece of lymph node to confirm absolutely that there was no question that was the cancer infecting Jake’s body.  At this point I was brave enough to ask the question I dared not ask.  “Is there no hope that Jake does not have cancer?”  “No.”  She replied, “There is no hope.”  She had to wait until I could gain my composure enough to speak audible words.  I could feel her desire to put her arm through the airwaves and around my shoulders for support of this devastating news…and that was understanding enough…for me.

I retired to my room and wept uncontrollably on my bed…just for a minute or two, until I felt angel arms of comfort envelop me and the Holy Spirit gently reminded me that He had told me it would be hard, but I would like the outcome.  He told me that my job was to help Jake through this.  I wiped my eyes, got off my bed, gird up my loins and went out to face whatever this Rhabdomyosarcoma was.

            At some point, early in the cancer treating regimen, Jake asked Dave to give him a blessing.  I was hanging on every word he said, waiting for those words of comfort, that everything would be ok.  He tried three times to say the words…but he couldn’t.  I had my answer, but I wanted more validation!  I wanted to know that this would be a breeze, the treatment would go fine, no setbacks, no ups and downs, no test…of faith.  Well…it’s good to have goals!  Right?

            The mommy part of me wanted to take the cancer away from Jake.  I wanted to take the hurt, the pain, the sickness and discomfort away and make it all better.  Yet…this was Jake’s experience, Jake’s growth time, Jake’s time to realize that he can do hard things and that he was meant for more than video games and meaningless entertainment.  We never looked at rhabdo as a punishment or a mistake, but an opportunity to grow and learn what we are really made of and who we really are.  I can't lie...none of this was any fun!  Some parts were easier than others.  Some parts were easier for Jake and some parts were easier for me...then there were the days that neither one of us wanted to go on with it. 

            Something I didn’t expect was how heartbreaking it would be to see and relate to the other children and families in the hospital who were experiencing their own trials with illness.  Rhabdo. is a childhood cancer, so Jake was treated at Primary Children’s Hospital for chemo and the Huntsman Cancer Center for radiation therapy.  My heart couldn’t bear to listen to very much of the sorrow and heart ache they had to deal with.  I don’t know why.  Perhaps because it was just too close to home for me.  I was grateful that Jake was not as bad off as some of the stories I heard, but I found it hard to not let my heart get sucked into to sadness.  I must learn to have compassion without putting my heart through the sadness wringer.  I don’t know how to do that yet.

New Cancer regimen...

So here's the latest and greatest for Jake's cancer therapy:  We are getting the second to last chemo today.  In three weeks we will get the last chemo...May 3rd!  At the end of May/first part of June, we will have an MRI done to check the progress of tumor shrinkage.  He will also have his port removed.  As soon as the wound heals, I will lift the ban of swimming pools for Jake.

After that, we will only have to come in for a check up every three months, then every 6 months, then once a year for the next five years.  If all goes well, they will say he is in remission or cancer free after 5 years of good scans/MRI's.  Best case senario, Jake starts feeling back to his regular self by the end of summer.  We will continue detoxing him until we are sure all of the chemo is out of his body.

We are so happy to be to this point.  It has been a long, long road for us!  Jake has to deal with all the physical aspects of the chemo, and I deal with all the worries, scheduling, education, care, emotions, heart break, sorrow, bills and transportation for chemo.  Seriously, this would be much easier for me if I had the cancer!  But that's not the way God works...not that He gave Jake this cancer, but He is helping us through this and we are stronger for it.

Jake has never been depressed about his challenges, but he does get tired of it all.  His body has a harder time recovering from chemo treatments and it is frustrating that he can't do the things he is used to doing, like walking up stairs, jumping on the tramp or being able to go out and do things with his friends.

We will get through this!

HOPE/FAITH:  It does a body good/!

Here we go!

Platelets were good today so we are going for long chemo tomorrow! It's to awesome to be so close to the end! Only one more chemo after this! Thanks for the prayers!

Chemo: Week 36

After blood and platelets last week, counts are looking a lot better!  Last short chemo today.  Long chemo next week, then if we can keep his counts up...Last chemo...May 3rd!

Maybe this is not the end of our cancer journey, but it will be the end of treatment...for now!  I hope no one thinks less of me for not bonding with the other cancer parents.  I just found it so heart breaking to listen to their stories.  Maybe it's a little easier when your not going through it with your own child.

This experience has opened up a Pandora's Box of emotions and feelings I never dreamed I would experience.  It has changed me.  All of the parents I have met agree that we have learned much more about cancer and medical terms than we ever imagined would be necessary.

I've learned that to make it through hard stuff, you can never dwell on it.  It's necessary to acknowledge it, but dwelling on it is very depressing.  That's why is hard to keep repeating how Jake's doing, over and over again.  It is a constant reminder that he is ill.  I know people just want to show they care, and that's the part that I appreciate.  I think I just have to tell them he's fine and let them look on the blog to see how he's really doing.

We often make ourselves more depressed because we think life is suppose to be easy and good all the time.  Well, life is hard and often it's not fun or easy!  But, if you trying your best, and living your life in partnership with God, even though it's sometimes hard, it can always be good!

Like I tell my boys...You don't have to like it, you just have to do it!