Seeking God Knows What

My evening was filled with:

A strep test

A flu test

A blood draw

A chest xray

and two breathing treatments.

3 hours later and all those tests later, I came home from the urgent care place with a diagnosis of a virus not influenza, a prescription for robitussin with codeine and instructions to follow-up with PH if I did not improve in the next couple of days.

Actually I haven’t been this sick in a long time. At first, I thought my symptoms had to do with the change in antidepressants but when I woke up with a throat sore enough that I have subsisted on popsicles, chicken broth/noodle soup, plain yogurt, ice chips and part of a milkshake because it hurt to swallow anything else and a cough that has had me in tears because my chest hurt so badly from it, I realized I was sick.  After 5 days, I decided perhaps I should call PH’s office but they had no appointments and the phone nurse recommended that I be seen. 

I fear for what this trip will cost me in deductibles and co-pays but I will say that the breathing treatments (and the 800 mg of ibuprofen they gave me) have helped me feel more comfortable.

I went alone, which in hind sight was probably not the best idea.  My blood pressure and pulse were really high, enough so they wouldn’t let me leave until it came down a little bit.   Feeling very sick with no “explanation”, a lot of tests, and a hospital setting triggered some panicky moments during the gaps where I was alone in the room.  I worked very hard at keeping myself calm, reassuring myself that they were NOT going to find anything seriously wrong.  The whole idea of having a chest x-ray just about did me in.  I haven’t had one in probably 10-12 years but they were a critical part of my follow-up treatment after Wilms’ to check for recurrence. 

And now I need to go to bed and sleep….

25 years ago, I became a cancer kid after I was diagnosed with Wilm’s Tumor.

25 years ago, words and phrases like radical left nephrectomy, pediatric oncology, chemotherapy, radiation therapy, clinic, ANC, rads, actinomycin-d, vincristine, treatment protocols, side effects, hair loss, ovarian failure, stage III, National Wilms’ Tumor Study Group became part of our family’s vocabulary.

25 years ago today, my parents sat in a waiting room at Mott’s Children’s Hospital in Ann Arbor while I underwent surgery to remove the tumor and my left kidney.

25 years ago, cancer became forever entwined with my life story but so did the word survivor. 

I am a cancer survivor. 

Today I celebrate life.

I have a few prayer requests today….

First is the family of Ellie, she lost her battle last night with neuroblastoma after a hard fight.  I’ve been reading Ellie’s blog feed for a while after someone posted her site on the Bethany forums asking for prayers.  Please pray for her family: Mom-Sarah, Dad-John and 5-year-old Ethan along with all those who have been touched by Ellie’s life.  I can only imagine how bittersweet Christmas will seem with the joy of Christ’s birth juxtaposed against their loss.

 Second is Judy, fellow adoptive mom blogger.  Judy just learned today that she has breast cancer, localized but advanced.  Please pray for her and her family (husband Frank and son Nate).  I am constantly amazed by her strength and support :) 

And last, is actually a family local to me as they go to our church (I only recently discovered they had a blog), Kristi.  Kristi has been battling ovarian cancer since January and went through surgery yesterday to reverse a colostomy.  She and her family are hoping she’ll be home for Christmas with their 3 children (Ashley, Nathan & Emily) but she is having some minor complications- elevated heart rate, low blood pressure and oxygen level. 

Why am I angry to discover that I was randomized into a group that received double the abdominal radiation than the other group during my treatment?

I mean it was 25 freaking years ago.

It can’t be changed.

The infertility can’t be undone.

But, you see, I just found out if I had gotten into the other group, my fertility odds may have been much better.

Why do I torment myself by looking over my treatment records and then looking up research to see just what might have been different??

I added a new button to my sidebar

Goodsearch is an online search engine powered by Yahoo! which donates money to a specified charity.  I have preset the link for the SAMFund  which is the non-profit group for survivors of childhood/young adult cancers that has given me a grant the last couple of years to help cover my prescription costs.  Every search you do using the Goodsearch site, you help donate money to the group.

Goodsearch also has created network of online retailers who will donate a percentage of purchases to charity.  So for those of you who are online shoppers, if you hit the Goodsearch site first and then click on their links to some of the many retailers (including major stores like Target, Amazon, Gap, Barnes & Noble, Macy’s, Old Navy, Apple, Circuit City), then you can “feel good” about your online purchases since you are donating to charity too

Cool, huh?

I’m facing an end. A good end, but an end all the same.

My appointment next week in Ann Arbor is most likely going to be my last one.  I received an e-mail from Marcia, my primary contact at the clinic earlier this week saying she would not be there for my appointment and then she said,”Most likely, we will not schedule another follow up, as you are now so many years from your treatment, and also, you have a good primary medical doctor.”

This has been part of my life, my medical care for the nearly 25 years (next February marks 25 years since I was diagnosed).  It has been my “safety net” in knowing that all the important things that need to be checked are being checked.  Yes, I do have a good primary medical doctor.  But he has hundreds of patients and this isn’t his thing, not even something he is remotely interested in.  At least by going to Ann Arbor, I have had the reassurance that if there was something serious regarding a late effect from my treatment, they would be aware of it because they follow up on the reports and studies that cross their desk with regard to childhood cancer survivorship.

I’ve already cried over this, in fact, just writing this has made my eyes tear up and my anxiety to kick in.  And yes, I have already had a session with #5 devoted to processing this and how to get some sense of closure about it.

But truth be told, I’m scared of letting go of these appointments.  I don’t think I realized how much of a support system this was for me.

And I will miss Marcia.  She has been there for this whole experience, beginning to end.

Before I launch into my post about this statement, I want to say that today T & I attended our friends’ church for their son’s baptism. This church is of the same denomination as our church, with a similar contemporary format. Afterwards, T & I said to each other how glad we were for our church and how going to this other church made us realize choosing to become members of our church was absolutely the right thing for us. The service wasn’t bad but it felt very superficial and while the pastor was very nice, he sounded a bit glib to me in how he preached and led the service. After attending the service, I kind of think that our friends only go to this church because her “substitute mother figure” attends this church and if she ever left, they would follow her or quit going. I even struggle with being sure of how genuine their faith is, but I don’t know since I’m not them For her, I see their church as more of a fit than for him. I actually think he would love our church. Maybe sometime I’ll be able to get them to check our church out.

Okay, back to the topic at hand….

During my appointment with #5 last Monday, we were talking about my upcoming appointment I have with the Long Term Follow Up Clinic at the University of Michigan. I told him that as soon as I got the reminder notice in the mail, I started thinking about it and I could feel my anxiety level ramping up. Usually I find myself getting gradually more and more anxious until right before the appointment when I start think I cannot go, they’ll find something wrong, I’m going to cancel. I always end up going and then breathe this giant sigh of relief when I pull out of the hospital parking ramp.

So we talked about why I was anxious and what other emotions I tend to feel when attending these appointments. He asked me what the most predominant emotion was and I said fear. Complete and utter fear that they will find cancer again or they will tell me about some late term effect with dire consequences from my treatment. He said well, that is perfectly normal and physically, my body remembers what happened all those years ago, kind of like a post-traumatic stress episode, in fact, it probably IS a post-traumatic stress situation for you. My reply? Oh, I’ve always thought that being afraid and worrying was a sign of weakness, of failure.

Then I said it was part of what pushed me away from God and church because of the feeling that if I had faith, I shouldn’t ever worry, that I would just be able to say “Okay God, have at this” and then be capable of handling anything without worry. Instead I was crumpled in this ball of depression, worry, fear, sadness, loneliness, so I thought I must not have faith. If I don’t have faith, then who needs God? Not me since He isn’t there anyway. Fortunately, I found my way back to faith and God, despite having this feeling lingering in the back of my mind.

#5 then asked me if I had seen the notice board of one of the churches down the street on my way in. I said no and he told me he had a patient come in really angry one day because the notice board said, “Worry ends when faith begins”. #5 said I told him that statement is a load of hooey. I have faith, I believe in God, I believe in Jesus, I believe that He died for my sins but I still wake up on occasion at night with worry. Worry and faith can coexist, you can’t let worry take over but having worries and fear are NOT a sign that you don’t have faith.

And boy was I ever glad to hear him say that!

I got a reminder in the mail today about my appointment at the University of Michigan’s Long Term Follow-Up Clinic. This is a clinic appointment for anyone who has gone through childhood or adolescent cancer and is five years or more off all treatments. Going to these appointments always feels very odd because they hold them in the same clinic as the pediatric hematology/oncology unit, so I sit there in the waiting area as an adult watching dozens of kids who are being diagnosed, being treated, being followed for the same reason I have been going to U of M for care over the last 24 years. It can be very overwhelming and the last time I went was very hard for me because we had Widget with us- she was 9 months old- and I thought what hell must these parents be going through watching their child deal with such incredibly intense medical treatments in order to live. I understood so much better what hearing my diagnosis must have seemed like for my parents. I’m sure most people thought we were there for Widget, not me, a 20+ year cancer survivor. I already know I’m leaving her home this time because an almost 3 year old during a long boring day of doctor’s appointments and lab tests plus 6 hours round trip in the car? Not my idea of fun or Widget’s! Last time I wanted to show her off to my nurse practitioner, who has been one of the team of caregivers since I was diagnosed. What was funny was she took her off to show some other people in the clinic and they were all so thrilled to see her as if we had adopted her just to show her to them

I have until October 5 to prepare myself for this visit. I always get very anxious that “something” is going to show up, either an unknown side effect from the chemo/radiation I had or an abnormality in the blood/urine tests they run. I know it is highly unlikely that they are going to find something wrong, particularly since I’m highly vigilant about my health and PH would probably discover it first. Plus I’m going to have to share the depression stuff & psychiatric stay- not something I’m looking forward to telling (there’s that stigma again- what will they think of me if they know I’ve had a psychiatric hospitalization?).

Good thing I’ve got some time and visits with #5 to sort through this….

Today in church, our pastor spoke about divine appointments and how God has puts people in our paths or us in other people’s paths to further his work. But he also pointed out that we need be what I will refer to as his 3 A’s: available, attentive and adventuresome or we just might miss those opportunities.

I have to admit I fall short on pretty much all three of those A’s. I’m often so busy, I’m selfish with my availability- only wanting to do whatever it is that I have planned. Interrupt my day and I end up feeling frustrated and annoyed. I will admit that I’ve been very challenged on this with the advent of Widget into our lives. Her track and my track? Very rarely the same! But I am learning a great deal of patience as we figure out life together.

Again the busyness of having a 2 1/2 year old plus a job plus a home to keep up make me feel as if I have no time to slow down and take in life. Days flow into weeks, weeks into months and months into years. I’ve been so absorbed in my own self and my past, particularly over the last couple of years, that I often just pay attention to things that need to be done to get through the day. #5 once said when we were discussing this aspect of my depression and self, “Think about life like driving. You won’t get very far by always looking in the rearview mirror. Looking back occasionally is fine, but you have to look forward through the windshield to get anywhere.” Widget has been good for me in this sense because sometimes I do have to stop for her sake and I certainly have to pay attention to the nudges in my mind/instinct regarding her, otherwise I would not be a very good mother.

But even if I had been more available and more attentive, adventuresome? So NOT me. It took me several years to be able to call a place of business to ask a question. I was terrified of driving, rarely drove and never drove on the highway until I got married and I had to. I don’t like rollercoasters, I am not a thrill seeker of any kind. I hate heights, I used to hate crossing bridges. I went to the Grand Canyon but stood far away from the edge. I used be afraid to answer a question in class, even if I knew the answer- I would often mutter the answer under my breath but raise my hand and speak out? Nope. I could barely make myself go to therapy because I knew it would force me out of my comfort zone, though I’m thankful I did/do go. Couple that with any sort of evangelizing? Heh. It used to be that I wouldn’t talk about God for any reason. I still lack a great deal of confidence in talking about my faith, even though I’m sure of it. Is it getting better? Yes. I think my sessions with #5 have helped me start to find myself and gain confidence my abilities but I have a long way to go.

However, I am thankful for the people in my life who have listened to God’s nudging and said, “OK, God, what is it you want from me on this one?” when they might not have wanted to. One of these people I saw for the first time in a couple of years yesterday when I went to a childhood friend’s wedding. He is an older gentleman (I thought he was old when I was little, I’d guess he is in his late 60s now) who attended our small Episcopal church and has faithfully (with his wife) attended our family’s big events over the years. We were seated at the same table and when T stepped away, he came around and sat next to me. I had my hand on the table and he covered it, just sitting there looking at me. I smiled and said I was really glad to see them again and wasn’t the wedding nice? He just kept looking at me and said, “All those years ago, when you went to Ann Arbor, you had all these people praying for you and your family. I am so thankful to see you sitting here because there were times when we thought these days might never come.” Of course, I promptly teared up, in fact, I just got teary-eyed again writing that but the witness of his faith and prayers was really overwhelming to me.

And of course, another person I’m extremely thankful for I’ve mentioned here several times. PH certainly did far more than he ever had to with regard to my spiritual welfare. Even in the worst of times these last few years, even when I wasn’t sure of how things stood between us, I always knew he was there praying for me and cared about my whole wellbeing.

Perhaps someday as I grow in my faith, I might be so lucky as to be like these two in someone else’s life.

University of Michigan Medical Transplant Team Plane Crash

How heartbroken all those directly touched by this tragedy must be.

To lose someone but then gain hope in saving the life of another through organ donation, only to have it dashed by the crash.

To the families, co-workers and friends of the team.

To the family and patient awaiting the transplant that won’t happen this time.

The people of U of M’s Health System hold a special place in my heart because of their hard work in my own treatment and survival.

My prayers are with you all.