Monday, October 29, 2012

Sorry Ladies…He’s Mine!

If I could reverse the clock about ten months, and have a conversation about my husband and our marriage, I'm sure it would've been mostly positive. I would've listed all the great things Nate does for our kids, the good job he does at work, and how handy he is around the house. I probably would've even given in to the temptation to point out a few of his bad habits, because I wouldn't want to gloat about what a good guy he really is. The conversation might have felt a little rehearsed, and I bet I wouldn't have thought twice about having it.


Fast forward ten months, and one post later. Chances are that many of you read Nate's latest post before I even saw it. I'd gotten online to check my email, something I rarely do anymore, and was surprised to see a new post. As I read, my mind raced over the last several months' worth of shock, fear, and heartache we'd experienced. I don't think I can explain the emotion I felt as I read. All I could do was sit there and cry. When my kids found me sobbing in front of my laptop, all I could tell them was that they had the sweetest Dad ever. 

I've never been good at hiding my emotions, and for a while I even tried to embrace wearing them on my sleeve (it didn't go well). Since this all began, I've tried to be very careful about keeping a lid on my most intense emotions around Nate and our kids. We've tried to be honest with the kids about everything, but at the same time we don't want to instill even more fear or anxiety. I know that I need to be strong for them, even when I feel so very frail. It's been a heavy burden to carry, and I imagine that it won't ever be easy. I did have a few meltdowns in Massachusetts, but I didn't think Nate ever saw me...besides, he was on heavy narcotics so I didn't think he noticed much anyway! 

Now I know that I was wrong. My sweet husband has been way more observant than I ever knew. He's been listening and watching me, and has come to understand much of what I've been going through. I wouldn't say that he's ever been a man who doesn't listen, but with all he's dealing with, I knew he needed to place his focus on getting well, and not on me and my fears and emotions. I never wanted to burden him. I'm so very touched that even with all that he has to deal with, the intense pain, the "blahs", the nausea, loss of appetite, etc, etc, I see that he has most certainly processed my pain as well as his own. Through a few different experiences (many that don't even belong to us), his eyes have been opened to the life of a caregiver. 

After reading, and re-reading, his post, I had a lot of anxiety about writing a post of my own. I've said time and again that I don't know how I'll ever be able to express the overwhelming gratitude I have for all of the kindness that surrounds me and my family, and now I wonder how to even express that gratitude to Nate. I'm afraid I'll never be able to! He's gone above and beyond as a husband and father. He's teaching me what it is to feel brave. He's teaching me what hope is, and the difference between rational fear and anxiety. He holds me up when I should be supporting him. I will never again discount the wonderful man that I married, and I'll brag about him without shame! He's the bravest and most loving man that I know. Thank you Nate, for loving me.

Last Monday Nate started his fourth round of chemo. We were so happy to have his dear friend, Boyd, join us at the clinic. He had a long layover in Salt Lake City and came to sit with Nate. I could see a little more light in Nate's eyes than usual, and I appreciate Boyd so much. 

We were able to talk with our doctor, and he examined Nate. Everything seems to be healing well, and Nate is tolerating the chemo like the champ that he is. When Dr. Whisenant saw Nate, he immediately made a comment about his hair, and how he doesn't seem to be losing it. He said that at this point into the chemo he should have already started into major thinning, but that maybe Nate is among the 1/3 that won't lose it at all. I'm starting to think we need to spend some time down in Vegas, or at least start buying lottery tickets! Nate is proving that he knows how to beat the odds. Sometimes I even have this very irrational fear that his veins are made of steel and the chemo is just passing right through him. I know it's a little crazy, and I don't want Nate to have more symptoms than he already does, I just want those evil cancer cells obliterated!

Nate tolerated round four pretty well. He seems to be more wiped out with every round, but he's still trying to work as much as he can. He's become a napper, which was never really his thing. It will be so good to see him get some energy back!

His lab values all looked great! His red blood count is a little low, but his white count and platelets are actually back within normal range! We spoke with the doctor about the timing for Nate's sixth, and hopefully last surgery. He will finish his sixth round of chemo the day before Thanksgiving, and will then need to wait a few (3-4) weeks for his body to recover, so that puts us around the second or third week of December. The hospital stay is anticipated to be 4 or 5 days, so hopefully he will feel well enough to enjoy Christmas. If the timing all works out, we hope to spend New Year's Eve bidding a fond farewell to the year 2012, and looking forward to a better 2013.

Thanks again for standing by us on this crazy detour we've been taken on. We still can't believe this is our life, but we are ever grateful for our amazing friends and family who have chosen to come along with us. Love to all!

Thursday, October 11, 2012

My Caregiver

My sister-in-law, Lindsay set up this blog for our benefit once it was discovered that I had cancer.  The idea was to aggregate all our thoughts and updates in one place as to remove the burden from Natalie and myself of telling the same stories repeatedly.  A couple of days ago she transferred the Admin rights over to us.  Yesterday, I opened up the blog dashboard and looked at the viewing stats. I was amazed to see that this little blog has had over 25,000 page views in just over a few months.  Views were coming in all over the place.    When I told this to Nat she said, "You have a lot of friends...".   But I have seen the comments and heard the feedback, all enough to know that more than half are clearly Natalie's friends, interested in her welfare and such.   This got me thinking in depth last night in bed, about something I have been pondering about for some time, regarding Natalie as my "caregiver".

"Caregiver" is a formal term and one that I really learned in Massachusetts while living in the Hope Lodge.  Every cancer patient there must have a formal "Caregiver", usually a spouse, but sometimes an adult child of the patient or a parent or sibling, or even a friend.  A caregiver is someone that:
  • Takes care of someone who has a chronic illness or disease, in my case Cancer.
  • Manages medications or talk to doctors and nurses on someone’s behalf, because of my mental emotional state, I was unable.
  • Help bathe or dress someone who is frail or disabled.  I couldn't put on my socks and shoes and such.  
  • Takes care of household duties.  Nat has done a lot of heavy lifting the last several months.
Natalie was and is my full-time caregiver.  Our friend Tami from Layton who was in Massachusetts the same time as us, has had a number of caregivers working weekly shifts; her husband, her sisters, her daughters and friends.   I learned what a caregiver is by first-hand experience and by close observation of others in our similar circumstance.  Unless you have actually been cared for, or have been a caregiver yourself, it is highly unlikely, in my humble opinion, that you have any idea what they do or go through.  As I thought about this last night in bed, as Nat slept, I cried just thinking of all she has done for me and sacrificed personally.

As a patient, and myself as a cancer patient, I believe, we in many ways have it easier than the caregiver.  In my case, my diagnosis came as a shock, so much that I really didn't believe it.  I felt healthy and quite frankly, invincible.  To this day, despite my arduous journey, I have seldom had a thought that I was going to die or that my mortality was in jeopardy.  Clearly my life has changed and I am not foolish enough to think that my life may not come to an end sooner than later, but I have adapted my thinking and perspective on life.  For example, I am little less concerned about retirement planning, and more concerned about the relationships I have with my wife and children and others today.   At the the end of the day, my life is mathematically, "x".  On the other hand, for Natalie, her life is (x + y), where "y" is her life after I am gone.  "y" is such an uncertain, scary thing for Natalie to think about.  Does "y" begin next year, in 5 years, or 25 years.  We don't know.  I don't think about it like she would.  Is "y" a time when she cares for the kids alone, or see our daughters get married by herself.  In fact, as I recover and become able to carry out normal activities, like going to work and even leaving town on business, Natalie can sometimes see an "empty" house  and what it would be like if I was gone for good.  I may cry about possibly missing out on many experiences and life events, but it is a much scarier proposition to consider doing all of that alone.  So much for the dreams of growing old together....    I still have no doubt that we will grow old together, but cancer sucks and is a harsh reality that has a tendency to alter our outlook on life, whether realistic or not.  This fact alone is basis enough to know that caregivers have a difficult road, maybe not to the physical extent as the patient, but clearly the mental and emotional anguish is more difficult, at least in our case.  The thing that sucks about cancer is that it is always with you, whether you are "cured", it is in "remission" or if you have told there is "no evidence of disease",  it remains in the back of your mind and it is always a possibility that it will rear its ugly head at some uncertain time down the road.  No matter how positive one can be, once you have cancer, you always have cancer, and this is especially true to the mind of the caregiver.

Caregivers are special sort of people.  Unless you are a nurse or in the hospice industry, most caregivers are in the positions by no choice of there own, but by circumstance.  Generally, it is by these circumstances that the "cream rises to the top" and best in these people come out.  I think once in a while there is the cream of the cream.  In my case, I am only so lucky to have such a person in my life, in Natalie.  No words can express passionately enough what a truly wonderful caregiver I have in Natalie.

First off, let me back up and say that I thought I knew what love was all about.  I thought I loved Natalie.  You would think in 16 years of marriage and 4 children later, that we have been down about every road and challenge and knew the person with whom we are wedded..  She thought she loved me much in the same vein   But it is amazing what cancer can do to a relationship.  Cancer sucks, but if there is anything positive about cancer, it has to be how it has truly brought us together like nothing else we thought possible.  We look back at some of our arguments and disagreements and laugh at how petty and silly those differences were at the time.  It is amazing how cancer can put other trivial marital problems into perspective.  Nat and I love each other more today than we ever have in the past and it is sweet.   I really have a difficult time myself still, trying to comprehend how someone can love me like Natalie loves me.  I am sick and frail. I can't put on my own socks.  I can't keep my meds straight.  I sleep all the time.  I don't help out around the house like I used to be able to do.   Yet through it all, Natalie is singularly focused on caring for me, and I know it is because she loves me.  Wow.  I cant even type this without shedding tears.

I have been told and I have read that being a caregiver can be rewarding.  But it is undeniably stressful as well.  There is no doubt significant anxiety, stress, irritability and even levels of depression that accommodate this "un-chosen" job.  While we have had no shortage of good friends, neighbors, family, the kids teachers, and strangers providing immeasurable help and the continuing offerings of help, there is still "pride in ownership" and getting things done independently.  So you may hear "no, we are quite alright".  To a large extent, as I get better that is true especially concerning the physical matters.  But I think as it pertains to the emotional and mental matters, help and support is always needed, maybe more so now than ever.

If you know a caregiver and you think that a caregiver is probably getting all the help they need, or they are always on the phone getting a call of support or a quick visit, and you think, " I am probably just 'piling on'" if I want to help.  That is probably the time when that caregiver has no one calling, and no one visiting, and no one just saying "Hi, I am thinking about you".  If you are a person that has a friend that is a caregiver when things seem to be getting better and their patient is on the mend, I can guarantee that care-giving friend needs you now more than ever.  Not a meal.  Not a fancy card. Not a gift basket.   They need that true friend and friendship.   They need a listening ear and that shoulder to cry on, whenever that might be.  They need the friends that are willing to talk about the tough things, the deep things, the things that make people cry. The things that only true friends will talk about. It is easy to be a friend when times are good and easy.  To be there when things are hard and times are tough, is the best measure of  truly good friends.   Caregivers need the friends that are there regardless of the circumstance, especially  when all seems well, when it is the least obvious and the need is recognized.  Those are often times, the hardest times for the caregiver...when by all appearances things look hunky-dory.

So while the bulk of the blog has been about me and my journey with cancer, I want everyone to know it is as much about Natalie and her journey as well.   I am so thankful that her friends and family have recognized this and rallied behind her to support her this journey with me.   There is no way I would be here today without her.  There is no way I would want to be here without her.  She is a rock and I thank God every day she is the mother of my children.

If you ever think, "Is there anything I can do for Nate".  The answer is yes.   Continue to support and be the amazing friends, family and neighbors that you are to my wife, Natalie and my children.



Monday, October 8, 2012

Today Is A Good Day

It's a beautiful day here in Salt Lake City. This morning we had the pleasure of attending the Salt Lake City Temple with some dear friends. Dr. Lambert came to town to attend General Conference and to go through the temple. We were so excited when she invited us to go, and it was wonderful to see her again. We were also accompanied by Nate's sweet Mom, Nancy, our friends Tim and Tami (fellow HIPEC patient from Layton), and her sister Judy and her husband. We also had the pleasure of meeting a man and his wife who live in the Salt Lake Valley who also underwent the HIPEC procedure back in 2009. The friend of Dr. Lambert who introduced her to the church, along with his family, and the two missionaries who taught and baptized Dr. Lambert were also there! Dr. Lambert had quite the crowd! It just goes to show that she is a very special friend to many people.

It was also so great to be there with Nate. I love to see him feeling good, and able to do the things he enjoys. We went up to Bear Lake for Conference Weekend and had a very relaxing time. The kids had a great time hanging out with each other, taking Ranger rides, and playing games together. Can it get any better?

At the moment, we are sitting in the Infusion Clinic. This marks the beginning of Nate's third round of chemo. He's halfway done! The time seems to speed by so quickly in many ways, and drags on in others. I still feel like I'm in a time warp! Nate continues to get stronger with the passing weeks. He hasn't needed as many pain meds, and for the past week or so, only takes them as needed. That's a pretty big change for him, and I'm happy that he's had some breaks from the pain. Last week we went camping with our ward, and as part of the entertainment one of the youth was DJing a dance. Our family went out onto the dance floor to bust a move, and before I knew it, Nate picked Emma up and  flipped her around in one of his fancy line dancing moves! For about half a second I was kind of ticked (I've been a Nazi about him lifting anything heavier than a gallon of milk), but then I saw the smile plastered on his and Emma's faces. It's hard for me to believe, but it seems that he's slowly moving back to his 'old self'. I'm thankful to see some 'normal' creeping back into our lives.

Nate continues to work as much as he can, and his co-workers continue to be so supportive. Last week another friend from work donated more personal leave to Nate. Nate told me about it in a text, and when the tears cleared from my eyes, I asked him how we would ever be able to express the gratitude we both have for all the many ways our friends have blessed our lives. We both seem to be at a loss for words when it comes to the gratitude we feel for all the friends and family that have helped us in so many ways.

While Nate still doesn't have a lot of energy, he pushes through the 'blahs' and is getting on with life. We're so appreciative of the patience everyone has had. I know that Nate's absence at work causes extra work for those picking up the slack, but I've never heard anything but understanding and encouraging words from those most affected. I don't know if they will ever understand the burden they've lifted from our family.

This path of life is certainly not easy, and I know we aren't the only ones facing a hard trial. Our eyes have been opened to the adversity that so many of our family and friends deal with. I've said it before, but it's like being pregnant...when you're pregnant, you notice all the other pregnant women, and it seems like everyone is pregnant! Likewise, when you're in the middle of the muck, you notice the muck others deal with, and it seems that everyone has something going on.

My dear friend's dad passed away unexpectedly Saturday morning, and my heart broke for her when I heard the news. We're praying for our friend and her family, and hope we can provide some type of comfort to them. I don't think we can ever truly prepare ourselves for trials like this, but I'm so grateful for good people who can help us pick up the pieces and guide us back to a hopeful place.

Thanks again for all the love and support you send our way. Prayers are being answered, and we are getting moments of 'normal'. We are forever grateful.