Instead, Wait

Waiting. It’s become the story of my life. Waiting and waiting some more. 

  • I waited for the doctor to tell me the diagnosis. 
  • I waited until after he said “cancer” to cry. 
  • I waited for a hospital bed. 
  • I waited for the nightly treatments. 
  • I waited to go back home to see my kids. 
  • I waited while my husband took care of me before we could go to an appointment. 
  • I waited for tests to come back clear.
  • I waited for my oncologist to open the scan results on his computer. 
  • I waited to hear “it’s back.” 
  • I waited for it to strike. 
  • I waited for the surgery day. 
  • I waited for the epidural. 
  • I waited to see my husband. 
  • I waited for the medications. 

You get the idea, right?!? My life used to be the same as everyone else’s. I used to get up in the morning and live my life; go to work, help the kids, cook, do laundry, etc. And, if we were lucky, I might be able to prepare for a family vacation. We’d carefully plan months ahead of time so that we weren’t being unfair to employers and co-workers, so that family could plan accordingly, and our family had something to look forward too! 

Cancer changes all of that. You can’t plan. You’re left hanging. Waiting to hear test results before you can decide if you can go on vacation. You wait to see how well/poorly the treatments go before you can decide if you’re well enough to go to work. You wait to see if you can pay the bills that month because the savings account has been cleared out paying medical bills and treatment costs. We’ve experienced so many disappointments in our lives since cancer. It’s become a family joke… don’t plan a family vacation cuz cancer is going to come back! It took away our highly anticipated 8-week sabbatical that we had been preparing for for well over a year. It took away a week long family reunion, it took away precious time I had with my children. It took away some very rare, carefree moments that I was so desperately looking forward to. 

As I sat in bed, wondering when the pain would subside, wondering if life would ever have those carefree moments again and if we would ever have the luxury of planning again, I came to the realization that I was waiting … yet again! But this time 

  • instead of waiting for my medications, I was waiting for my daughter to come home! 
  • Instead of waiting for my husband to care for me, I was waiting for him to return to the couch to sit beside me and hold my hand. 
  • Instead of waiting for the doctor’s office to call, I was waiting for a text from my sister. 
  • Instead of waiting for sleep to close my eyelids, I was waiting for my son to come home for a visit! 
  • Instead of waiting for the doctor to give me a dreaded treatment plan, I was waiting for him to tell me that surgery was successful. 
  • Instead of waiting for my kids had to leave again, I was waiting for when they’d come home next. 
  • Instead of waiting for the day when my husband had to leave for work, I waited for the day when he’d return. 

Life with cancer has been difficult during the best of times. Even when things look clear you’re waiting for it to rise up and strike again, and then you spend precious time trying to mend the emotions and get yourself back on track. It is hard on the family members; the stress of not knowing, the worry of knowing, the anxiety of the questions left unanswered. We can’t plan definitely for tomorrow; we can only temporarily think plans through. Only God holds the future. Instead, we can wait. 

Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD. -Psalms 27:14 

Our soul waiteth for the LORD: he is our help and our shield. -Psalms 33:20 

Rest in the LORD, and wait patiently for him… -Psalms 37:7

Learning a New Me

It’s been awhile! Today I sat down in my yellow chair, reflecting on my life since cancer. The treatments are over, my hair has grown back, I’m no longer in a wheelchair or bedridden, and my tests and appointments get a little further apart with time. However, with all of those acknowledgements, I find myself raw. It seems like a crazy spiral that I know (somewhere in my subconscious) isn’t real nor is it long term. Yet here I am, two years later, still wondering when I will be able to turn my life around?!

A normal gas engine for a regular vehicle can idle anywhere between 540 up to 1000 rpms. You know what “idle” means, right? It means “not active, not in use.” Your vehicle is just sitting there, waiting for instructions from you since you, the driver, are in control. When an engine is working harder, the rpms climb. When you drive up a steep grade your engine needs more power. Well, that’s me. My person is stuck in high gear. It doesn’t matter what I’m doing, thinking, or feeling; I’m in the “screamin’, all-in” mode. My anxiety levels are high regardless of the situation or circumstances. That’s bad. My emotions are at extremes. That’s bad! My anger is quick to boil over, the tears are constantly threatening to spill over for no apparent reason, the fear is always looming, never subsiding, the irritability seems to be set off by more insignificant things.

I feel like I’m on high alert all the time; will I say something offensive? Will my frustration show? Will I cry? If I start crying, will I be able to stop? Why am I crying in the first place? Whatever happened to the easy-going old me? How do I learn who the new me is?

My oncologist said that it’s not uncommon for cancer patients to suffer from ptsd. It’s a daily battle. My ptsd was brought on by cancer and major life changes have not helped my situation at all! But my heart aches for so many others out there that are hurting, facing similar battles with anxiety and ptsd that I am for different reasons – losing a loved one, life threatening diseases and traumatic treatments, etc. And well-meaning people (yes, even Christians) can oftentimes make it worse by throwing around terminology and phrases that don’t help. Here is a list of phrases I recommend avoiding telling someone who is struggling:

1. “You need to just put your past behind you.”
Well, I would if I could, but my past (cancer) is what defines me as who I am today. It’s what makes me who I am today. That can’t be ignored. I look in the mirror and I see a different me. God directed my family and I through our past and He gave us grace. It’s to be remembered. Not forgotten.

2. “God won’t give you more than you can handle!”
Au contraire! Yes, He will. With the sole purpose of drawing you closer to Him. Ptsd is a daily battle that all kinds of different people have to deal with who are from all walks of life and are various ages. There’s no one situation that fits for everyone.

3. “You just need to trust Him.”
Yes, I do. Do you really think I’ve been trying NOT to? In the same breath, so do you. Don’t give advice that you’re not willing to take. Are you trusting Him with your child(ren)? Are you trusting Him with your broken down vehicle? Are you trusting Him with your finances? Your job? Your marriage? Your friends and relationships? Your Christmas budget? So many people throw this phrase out there as a good ol’ fix-it for anything that ails you, but it rarely comes across as sincere simply because very rarely in life is everyone trusting Christ as completely and wholly as we ought to be. Oftentimes this phrase only comes across as caring if the other individual has been through the same ordeal as you have experienced. Don’t minimize their trauma and the battle. Work on your trust. Don’t worry about someone else’s.

4. Religious cliches… combining 2 and 3…
It is often easier to discourage someone by throwing these comments out there because these statements often make an individual feel inadequate or that they are not living as spiritually as they need to be. Quotes like this can be more discouraging and you don’t want to make the individual feel like God is judging them in any way because of a valley that they are struggling through.

5. “It’s because of the meds that you’re taking. You need to get off of them.”
No one can fully know or understand a person’s medical history and have no right to change, doubt, or create doubt about a person’s prescriptions. There are oftentimes legitimate physical needs for medications and since you’re not a doctor you cannot assume that any of the medications that someone is on is either “bad” or not working. Leave the medicine to the professionals.

It’s hard to try and figure out who the new you is. You used to enjoy certain things in life and now they no longer bring the same joy. It’s changed. Worries and anxiety seem to hang over your head when you used to be able to live life seemingly carefree beyond the normal stresses. It’s changed. People look at you funny or avoid you. Why? Did you lash out at them and don’t remember it? Do you act differently? It’s changed.

Struggling to understand who you are again is a task that no one prepared me for. No one prepared my family for. There are times where I cry in despair, feeling I have no control over my new path. There are times where I cry from fear, of what I might do or from the unknown. There are times where I cry from being overwhelmed; life changes, or the constant threat of “the cancer” returning. And there are times where I cry because of the known. I know I’m different now and sometimes grieve losing my old self. I cry because I lost a year and a half with my kids; my kids were getting older and high school graduation was coming that year for my oldest and the following year for my second child. I can see my time coming to an end with them under our roof. And then there’s the inevitable… I cry because I’m alive. I cry because I’m not the one in the hospital bed on IV lines. I cry because I feel guilty that I survived.

I know that I have issues that need to be worked on. But I’m far from alone. How many other housewives, or cancer survivors, or widows, or widowers, or adult men, etc., get up every morning psyching themselves up to fight the mental battle anew that morning? It’s a battle that so easily feels like you’re losing. It’s a battle that Christians don’t talk about, or if they do they impart their misplaced good intentions. It’s a battle that is way too often judged and the souls that are fighting it are often left alone on the battlefield to fend for themselves. So today, I encourage you to pray for those who struggle with mental and anxiety battles. Encourage them. Love them. Don’t judge, scrutinize, or try to give advice. Just listen for a change. Just be there for them. As James 1:19 states, “Wherefore, my beloved brethren, let every man be swift to hear, slow to speak…” Sometimes a sympathetic ear makes all the difference and is the small boost of help that they’ve been looking for. After all… God listens to us.

“Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you.” Jer 29:12

I haven’t posted in a while. Here’s an update; learning my “new normal!”

Refocusing.

I was diagnosed with cancer in Feb 2013. My treatments took a full year. Now, I’m still doing routine MRIs, CT scans, bone tests, blood work, port flushes, etc. Every time a test comes back clear I ask my oncologist, “Can I finally say ‘cancer free’?” His response? A very blunt, “No.” I get that there’s no guarantee; tomorrow is never promised to anyone. I get that this cancer has a high recurrence rate and its aggressive. I understand that there’s risk involved. So the question becomes not how do I obtain the goals that I desire, but how do I respond to realities of which I have no control?

I’m not going through chemo, my hair has grown back (except for my sketchy eyebrows!), I no longer need a wheelchair (but my body is ridiculously weak), I no longer have burns on my back and esophagus (there are scars), I don’t have a drain hanging from my side (but I tend to hunch over while walking, favoring my left side). My back isn’t in pain from the tumor but I have constant sharp, searing nerve pain in my ribs and the back muscles knot up and begin a war. I don’t fear the next treatment; I fear myself. I don’t fear the hallucinations; I fear my emotions.

You see, the battle with cancer during the treatments, as gut wrenching as they were, were something we took one day at a time … together. I had my oncologist encouraging me. The nurses would smile brightly and be as gentle as possible. I got electronic reminders that people were praying for me and notes in the mail. We got phonecalls, and a reassuring hand on the shoulder. It helped our entire family unit! We weren’t alone!

Now the treatments are over and all of a sudden the team that you had surrounding you are gone. There are still friends praying but it is assumed that you are picking up the pieces and carrying on with your life. Sounds normal, right? There’s nothing wrong with those expectations, right?! I thought it would take me a few months to get back on my feet and be my same ol’ self again. Why wouldn’t I? After all, I had survived chemo, radiation, surgery, and then more chemo; the oncologist told me in no uncertain terms, “Don’t go on the Internet; it will scare you to death” and followed up with, “The treatment for Ewing’s is the worst possible thing I could do to any of my patients.” Well now, my regular office work seemed so minuscule! I didn’t even see it as a mountain to climb! It was an open gate leading back to my old life. A few months after returning from work I failed at something in my office. I truly can’t remember what it was (it was something mundane), but I do remember joking and saying that I was going to blame my mistake on the chemo! The individual I was talking to responded with, “Well, how long are you going to blame chemo anyway!?? I mean, really?” Wow! That response kind of rocked me to my core; I certainly wasn’t trying to avoid taking responsibility for anything I might have done wrong. I was joking! On the other hand, there are times when it’s a legitimate excuse, for goodness sakes! (I figured I’d blame chemo for everything for the rest of my life…!) But now it was clear to me that people fully expected me to function on a totally normal basis; back up to full throttle. No excuses or you look like a wuss and you’re seen as the whiny-complainy one. I’ve never been a whiner so I pushed myself harder. I wanted to pull my own weight and then some. I wanted to be reliable and the backbone of the team. I wanted to be needed. And I’ve never referred to my cancer at work again… not in a working sense.

The harder I worked, the worse I got. I was so beaten down by the time I got home from work I was simply worthless. No cooking, no cleaning, no talking; I’d fall asleep wherever I landed. No laundry. No nothing. I’d drag myself out of bed in the morning, feeling sick to my stomach and off I’d go again. My weekends consisted of staying on the couch or in my bed, gaining enough rest and strength to get through Sunday and then my work week began again. It’s one of those “Well, my, you LOOK good!” scenarios where your legs are about to crumble beneath you, your heart is racing & you have beads of perspiration on your forehead while you secretly wonder if you’re going to faint. If you look good, then you’re fine, right?! There are so many diseases and illnesses where you might look fine but you’re stuck in a very dependent, sick mode. I also found myself struggling with a personality and emotional change; PTSD. This was completely foreign to me!

Now, to try and make things better I would have to cut back on my work hours and in response to that, my job responsibilities would change drastically. I felt like a failure at home AND at work even though I was the first one to admit that the extra rest was the best thing for me.

It comes back to the question we stated earlier…. how do you handle dealing with the curve balls that life throws your way?

1. Accept that there is a new “normal.” Your life is different after dealing with any kind of trauma, and disease is trauma. Find a friend that you can talk to and vent too. They don’t need to encourage you; you just need to let it out.

2. Make adjustments in your lifestyle. I had to change my work, cutting back on the hours I worked and finding a position that was less stressful. I can’t do all the housework and cooking myself but I’m much more able to help at this point than I was 6 months ago. And I’m enjoying it. I only regret not making this change right away after coming back from cancer. I regret pushing myself.

3. Find a hobby. I had to find something that would get me outside and keep me focused on something other than that weird pain in my leg (or a lump in your arm, or a chronic cough, or a pinched nerve in your back, or…, or…, or… A Ewing’s sarcoma diagnosis has a way of hovering over your head…for forever. Kind of like any cancer. It can always sneak back into your life and turn everything upside down again. A trusted friend could go to a Bible study with you, you could start painting or drawing, learn graphics on the computer, write a blog… something to occupy your time and your mind.

4. Try to exercise. I hate this. I’m so weak I struggle still with endurance and stamina but I know that exercise is healthy. Exercise creates endorphins and you actually feel better. Try a short walk to start with.

5. Get others to pray for you! The long duration of this disease is discouraging at best. It wears on your mental and emotional stability. I find myself dealing with anger more than I ever would have imagined! I was always the easy going one and now I found myself getting completely irritable over minute things like someone clicking their pen, banging on a table, saying hello, kids being unruly or misbehaving, etc. I actually “mourn the loss” of my old self, as crazy as that sounds. I just can’t think of a better way to say it. Some days I feel like I can step out of my body and judge my emotions or reactions as completely overboard, yet here I am doing it again. Are my reactions right? No! But it’s truly a daily battle to keep everything in check. You can’t overcome this without God’s help!

6. Find somebody else you can help or encourage…this one might take awhile! It’s important to note here that others aren’t always willing to receive your helpful tidbits and pointers that you’ve learned from your experience. Some people aren’t receptive of advice. Just keep on focusing on Him and find another soul that you can help until you find someone that needs your assistance or encouragement!

7. Figure out what calms you down; music, a pet, quiet and rest, etc. There’s usually some kind of trigger that will bring your anxiety levels down… maybe gardening, reading a book, looking through a magazine. Remember: people around you are clueless & don’t understand your anxiety or emotions.

8. Develop a thick skin. Sadly, there are always going to be a few people out there that are going to say the wrong thing, insinuate something rude, take advantage of you, put you down, or treat you as a lesser human being. In order to let these retorts bounce off of you, pray for them! As hard as it is… just start earnestly praying for them and you’ll find your heart softening before you ever say, ‘Amen.’image

Smelling a Memory

image.jpegThe other day I cleaned out a drawer where I discovered many of the head coverings that I wore during the year and a half where I was bald from cancer treatments. I struggled with them; finding something that was comfortable and wouldn’t slip off, something that matched my outfits and didn’t have inside seams that scratched my scalp, something that would keep me warm when I was cold and something that would keep me cool when I was melting down. Needless to say there was quite the variety of goodies in that drawer!

There was a part of me that was reminded how grateful I am that I no longer require the use of any of those items! On the other hand, it was like somebody stuck my finger in an electrical outlet; the shock jolted me right back to those many, many hospital rooms. Each hat or scarf reminded me of something different; none of them were good. The soft cream cap reminded me of those painful nights in the hospital, where I found myself crying, curling up in a ball, wondering if I could do this and how long I could last. Then wondering why the Lord wasn’t taking the severe pain away. The fuzzy purple cap reminded me that the strongest doses of chemo sent my body spiraling into menopause and the new struggles with temperature variations. All of a sudden I would be profusely sweating and claustrophobic and then next I was freezing cold. The bright yellow cap took me back to one of my earlier appointments where the oncologist predicted my hair would be gone within a week, while my husband and I stood there in complete shock, a kind nurse offered me a cap to take home with me so I was ready for when the inevitable happened and I hadn’t mustered up the courage to go shopping yet. I remember the black and white hat that I wore to keep the sun off my scalp and neck while my family pushed me around in a wheelchair. I was too weak to walk. I remember looking at everyone else walking normally down the sidewalk, through the hallways, wondering how I managed to be stuck in a wheelchair in my 40’s and the humiliation of my husband needing to care for my every need like brushing my teeth for me. I remember the lilac colored cap that I got frustrated with when my hair tried so desperately to grow during radiation and chemo but only managed a tiny sprig… which acted like Velcro next to a microfiber pillowcase or cap!! They stuck to my scalp! Talk about annoying…

So many scarves and hats or caps, and emotions to go with each one of them. But do you know what was more powerful than the memories? The smells!! With each hat came a memory of a room, a place, an emotion. And with each memory came a whole host of smells as if I were standing there today, this very minute.

I could smell the steamy, hot plastic food trays as they arrived, then the waft of various food odors that were never pleasant. I smelled the saline as it entered the bloodstream, the smell of the sterilized equipment as the nurses wore protective gear being careful not to let the chemo bags drip on anything or touch any skin. I smelled the mask; the paper medical masks that anyone coming near me or in my room had to wear. I remember struggling with the claustrophobia again when I wore one. I smelled the bathroom odors; strong, pungent chemicals that came from me, not from cleaning agents to keep the bathroom clean, and the coordinating “hazardous chemicals” sign posted in brilliant coloring on my door. I remember the smell of the industrial hospital linens; the linens on the bed were crisp and clean but far from inviting. The warming blankets had a separate odor as the nurses would carry one in from the warmer to put on my legs and feet to calm my shivering cold body. I remember the smells in the waiting room. The hospital waiting room was overcrowded and packed & had so many different odors it often made me sick: perfume, cologne, deodorant, body odor, body spray, smoke, food, musky, sweaty, and more. It made your mind swirl. I remember the smell of the pink plastic buckets that sat on my bed, standing ready for the inevitable stomach-turning episode the morning after chemo. I remember the smell of the paper cups that my meds were given out in, the smell of the packaged jello, the smell of the nurses as they worked so closely with my port, the smell of the soap that every dispenser in that complex contained, the smell of the pre-packaged non-skid socks that you were given at admittance. The list goes on and on. I can feel my heart trembling and my stomach churning as if I were walking onto the 9300 oncology unit right now.

Out of all of the smells that are seared into my memory, there are two very distinct odors that are more vivid than the rest. They aren’t odors that anyone would even think of either. When I smell either one of those two odors it is quite literally like I stepped into a time machine. You’ll probably think I’m crazy, but just wait…

I remember my body odor! Don’t laugh! Let me explain… During all of my treatments I struggled with hot flashes, menopause, intolerance to cold, etc., but I quit having any underarm perspiration. Crazy, isn’t it?! I just quit sweating there. I still sweat (obviously, since I had hot flashes, right?!?!), just not quite in the same way. And, my body odor was completely different. It took me a few weeks to figure it out too. I would lie in bed, suffer from temperature variations, hit panic and meltdown mode whenever I though I might have a fever (that was a very serious indication and we had strict instructions from my oncologist to head straight to their ER if that ever were to happen), and I associated those emotions with a very distinct, chemical odor. I would spray on perfume or body spray, and wear deodorant just like I’ve always done, but I could never smell those things. The chemicals in my system were being excreted through my pores. It wasn’t an offensive odor; not like you’ve been working outside in the hot sun with no deodorant or like you haven’t taken a shower in 3 weeks. I’m not sure if anyone else noticed that I smelled different. I never thought to ask! Those hats brought all of these smells and memories back.

I remember my head odor! Now you really think I’m crazy, don’t you?! Seriously, ask my husband if you want confirmation. When I lost my hair, my hair died. Everything was killed. We shaved my head but that only removes the hair from the scalp up. You have to remember that each hair has a root. You could see little black dots on my head from where the roots remained embedded in my scalp, but if you took your index fingers and lightly squeezed on either side of that root, it would just slide right on out (similarly to an ordinary pimple). There was just a lonely little hair follicle sitting in there, unable to grow, unable to fall out, unable to go anywhere. It was fried beyond recognition! Those little bits of dead hair stuck in my scalp also had a very peculiar odor and nothing that anyone noticed beyond my husband and myself. It’s a jarring memory. No one warns you about these crazy memories and odors when you go in for treatment.

My hats brought back memories; most of them are horribly terrifying where I want to run crying to my bedroom. On the other hand, I am also reminded of the many friends and family members that sent so many of those hats as gifts or sent money to purchase them. I know exactly the individual and their sweet faces that belong to each covering. I remember the well wishes and notes that were sent. And after all of the torment and scarring, God reminds me one more time of His gracious provision and mercy. Even though there are days where I struggle, and there are moments where the memories and flashbacks are overwhelming, I come back to the same conclusion… I wouldn’t change a thing.

December 2015

Dear Praying Friends and Family,

Merry Christmas from the Conway Family! There is so much to tell you about that we hardly know where to begin! This summer I was able to spend 7 weeks at Camp Grace in Wyoming helping them rebuild their facility that was destroyed by a forest fire a few years ago. They ran several weeks of summer camp and many decisions were made for Him. Camp Grace is also very excited to finally have their very first cabin that has a toilet and shower! Now those campers won’t have to use the Bathhouse! Woohoo! We had 115 volunteers help this summer for which we are very grateful. Nehemiah Corps was also able to help replace the dorms at Wolf Mountain earlier in the year, remodel a staff home at Ironwood, and work on a new meeting hall in Rivertown. In addition to the work with Nehemiah Corps I was also able to do IT for Ironwood; there were many nights at Camp Grace this summer where I was working on IT issues for Ironwood by the light of the moon in Wyoming. J iPads are a marvelous thing!

Robbi-Lynn is now a sophomore in college, enjoying taking Elementary Education, and working as many extra hours as she can get in the campus coffee shop, Common Grounds. We haven’t been able to help the kids with their college bills like we had anticipated so her extra shifts have been an answer to prayer. Dustin is a freshman, taking business and Bible courses, and works in the Distribution Center. He’s enjoying the classes but seriously misses the dirt and country life! Blaine is a freshman in high school, has been doing some yard work for a neighbor each week, as well as working on various projects around camp that the staff kids have been able to participate in. He’s growing every day and is literally eating us out of house and home… we’ll often find him in the kitchen concocting something to calm his constantly growling stomach!

Shelley still has regular follow-up appointments with her oncologist at Loma Linda. She also has routinely scheduled MRIs and CT scans with periodic bone scans, etc. Her doctor wants to keep a close eye on her. He won’t say “cancer-free” and he won’t take her port out (which we’ve been thankful for since the chemo ruined her veins.) Apparently, Ewing’s sarcoma has a fairly high percentage of recurrence within the first five years. The good news is that so far, her tests and scans have all come back clear and her bloodwork is exactly where it should be. The bad news is that we have concluded she can no longer maintain the working hours that she used to be able to work. Her stamina and strength haven’t returned like we had hoped and we find that work wears her out, leaving her unable to do anything at home or with the family. So, we have decided that it’s time for her to cut back on her hours a little bit, even if it means a little less pay each month. Our desire is for her to regain her strength and stamina, be able to do things with the family, bake and cook and get back to a couple of hobbies at home, and take some time to recover from cancer and from working too hard outside the home.

I am currently still in charge of the kitchen here at Ironwood in addition to taking care of all of the IT needs that come with 70+ computers that are on camp property. I also work part-time as the director of Nehemiah Corps. Recently, the Lord has been opening and closing doors for us that we weren’t really anticipating. Beginning September 2016, our family will begin working full-time with Nehemiah Corps (also a non-profit organization) that works with the Family of Camps. Right now the Family of Camps includes Wolf Mountain in Grass Valley, CA, Camp Grace in Wheatland, WY, Longview in Arcade, NY, and, of course, Ironwood here in Southernimage California. Nehemiah Corps is a helps ministry to these ministries, which means that through volunteers and missionary workers we provide the planning, knowledge, workforce, and tools to help with building projects, technology needs, and administrative assistance. This ministry’s desire is to help these camping ministries who could not otherwise afford a contractor, at the same time, keeping our focus on the eternal.

Nehemiah Corps will base out of Ironwood which means that our family will continue living at Ironwood, Blaine will continue going to school here, but in September we will no longer be considered “Ironwood staff members.” It is a lengthy transition as we work to help train other staff members to take our places. We will also continue to work as home missionaries, raising personal support to stay in the ministry and serve full-time. We want both ministries to succeed! In August 2016 I will complete 25 years of service in the Ironwood ministry.

Two summers ago I had the opportunity to speak for a junior camp at Camp Grace. There was one boy that struggled with the salvation decision. I prayed with him, talked with him, but he left camp not making that decision. I left camp knowing that the seed had been sown and still praying. Now, as I work with the different camping ministries, helping them build meeting halls and auditoriums, putting in cabins, bathrooms, septic lines, etc., I see buildings and facilities that help a camper spend quiet time with God and make life-changing decisions. This past summer as I visited churches in the Wyoming area a young man came up to me and introduced himself. He was the young boy that had left camp not making a salvation decision. He wanted me to know that this summer he received the saving grace of our Lord and Savior and joined the ranks of others who have accepted the gift of salvation! That’s what Nehemiah Corps is all about… using the temporal to affect eternity. We work at taking care of the behind-the-scenes work for camping ministries so that the Holy Spirit can work, unimpeded or hindered, making a difference in eternity.

As we look forward to the next year, it is not without fear and trepidation. We find ourselves stepping out by faith as Nehemiah Corps doesn’t have the monthly support needed to be able to cover basic fees that having employees brings. In addition to that, we have personally lost over $1000/month in support over the last year. It’s getting hard to make ends meet and we find ourselves trying to get back on the road for deputation as we will now incur more expenses that were once a benefit that Ironwood provided. We need to raise about $1800/month more in support for our family. The Nehemiah Corps organization also needs to raise monthly support. If you know of a church, business, or family that might be interested in either one of these ministries, please feel free to contact me at larry.nehemiahcorps@gmail.com. We are praying fervently for the Lord to meet these needs. Will you please pray with us? We are praying that those who currently support us will continue to do so, as well as the Lord providing new supporters.

We are sad to “leave” the Ironwood ministry. We are scared about the many unknowns in our future. We are excited about the vision of Nehemiah Corps and the extent to which it can be used. I can’t help but think back to one of our earlier years as staff members; we didn’t receive any support one month. Nothing. Zero. We still had bills to pay, couldn’t afford to drive into town to church, couldn’t buy food, etc. It was a stressful time. We came home late one night after serving a camp that was here, and struggled to find the light switch in the dark as we opened the front door. As we fumbled for the light switch, we tripped over something in the doorway. The light revealed that God takes care of His children… there sat two boxes full of supplies: toilet paper, canned goods, toiletries, bread, etc. He has always met our needs.

On a personal side note, we would dearly love to visit Shelley’s family this year for Christmas. It’s been 16 years since we’ve been able to go back for Christmas but our financial situation certainly doesn’t allow for an expense such as this. I’m anticipating that the trip will cost us anywhere from $850 – $1200 if we drive (depending on which vehicle is running!) but our truck is currently broke down (engine issues so it’s not a quick fix) and we’re dependent on weather conditions cooperating. Flying will cost approximately $2000 depending on when we can purchase tickets. We’ve already told the kids that there won’t be any Christmas presents this year as we’re all willing to sacrifice a gift if it means we can be with family. I know everyone struggles this time of year so I would just ask that you pray with us about these things. Please do not hesitate to contact me if you have any questions or concerns.

We covet your prayers as we make this transition. It’s a bit of an emotional time for us… after all, it has been 25 years of serving here at Ironwood.

Using the temporal to affect eternity,
Larry and Shelley Conway

Nehemiah 4:6 “So built we the wall; and all the wall was joined together unto the half thereof: for the people had a mind to work.”

Life Changed

Refereeing Myself

Hate. Anxiety. Fear. Trembling. Flashbacks. Worry. Terror.

They’re all words that describe me. It’s terrifying. It’s not me. It’s not how I used to be. I used to be laid back. Easy going. Fun. Expressive. Quiet. Thoughtful. Smart aleck. THAT’s how I am supposed to be.

I’ve lived through some horror. I remember curling up in the hospital bed, full of pain, praying that God would make it end… somehow. I was so thankful for the small things like a day at home with my family. I knew that if I lived through the treatments that I could handle anything. Everything else would pale by comparison. Yet I find myself sitting at the doctor’s office, asking him why i feel hate when I’ve never hated like this before. I inquire why I cry so easily when I don’t even want to cry. Life has to be miserable for my poor husband and co-workers. I can feel myself glaring and I haven’t got a clue why. Discouragement is an issue that I have to pray about every day. Depression seems to hover within reach, taunting me… it’s a black hole that’s only a matter of time before I fall into it. Life was supposed to be a breeze after the grueling treatments because I’m not sitting in a chair or lying in a bed hooked up to an IV, throwing up, or having needles jabbed into me everywhere imaginable. I should be ecstatic.

Why am I struggling so hard to find happiness? I can list hundreds of reasons why I should be happy. I can give you a thousand answers to prayer. And then my doctor said one thing that made the puzzle pieces sort of come together for me. One sentence. “Well, it’s not uncommon for cancer patients to suffer from PTSD; cancer is traumatic. It upsets life in every way.” PTSD?! I thought only soldiers coming back from war had to struggle with that! The more I read, the more questions I ask, the more I talk to other cancer patients, the more I realize that this emotional roller coaster is real. It is not a direct reflection of my ability to walk with my Lord either. It’s not a gauge for other’s to judge me on my spiritual life. Just because I feel hate doesn’t mean that the Lord has turned His back on me or that I have backslidden.

Every day I feel a slight twinge of pain somewhere like everybody experiences… maybe it’s an earache, a slight headache, or sore throat. My eyelid is twitching, I cough for no reason, I find a pimple on my arm, my toe tingles… the list can go on forever. Every little thing that you normally don’t think twice about… I think about in great detail. The dry cough turns into cancer coming back. The twitching eyelid could be cancer coming back. The slight headache might be a full-blown recurrence of Ewing’s sarcoma. My earache could lead to tests that lead to a diagnosis that rocks my world… again. It’s never a small thing ever again. The fear and terror lurk just around the corner waiting to pounce. Every MRI, every CT scan, every bone scan, every vial of blood… means hours or days of waiting. It means getting yourself ready to hear the worst. Preparing yourself to hear those words again. Preparing yourself to respond in an adult, Christlike way when your world is turned upside down and inside out.

That daily fear is your new normal. It becomes the foundation of your life and that’s what people don’t see. That fear gives you an almost inhuman way of stepping out of yourself to escape. It’s almost like a phenomenon. It’s surreal. It’s like something you would see in the movies. I can see myself reacting to situations or people, I can give myself advice, I can correct myself, encourage myself… as if there were two of me. I know all of the right answers. I know how I am supposed to be feeling and what I am supposed to be saying. Yet the emotions that I never struggled with before are there all the time. The hate. The disgust. The tears. The fear. They are within my reach and can easily overtake me… and they have. Constantly refereeing yourself takes a toll on your body and your mind… as hard as that is to admit.

Mix into that emotional mess the long-term side effects of the treatments, tests, and poisons that made-up my life for over a year. My brain doesn’t work like it used to. I used to be able to come-up with smart aleck retorts… now I can’t remember an every day word and stand still with a blank stare. Instead of using two sentences to express something I find myself babbling for 15 minutes, using five times the number of sentences, and in the end I still haven’t conveyed my thoughts clearly. The hallucinations are over (at least I think they are!) but they taught me to question everything I say or do. I couldn’t trust myself then. I still can’t. I’m constantly tired. I have to pace myself and I can’t work in the office and at home without overdoing it. I think I’m okay and do a little more one day or stay a little later in the office a day or two… only to realize two days later that I just can’t muster the energy to function and find myself on the couch or in bed recuperating when I don’t think I should have to. My legs peeter out, making using the handicap parking placard an embarrassing thing… I can’t make it back to the truck. My joints hurt; the pain is substantially worse than anything I’ve experienced before my diagnosis, and it’s that swelling that makes you worry about cancer… again. Swelling in a joint is a sign of Ewing’s, you know…one of those ways to detect it early on. And the fear comes back to reign again.

Add to that the guilt. Some refer to it as “survivor’s guilt.” Why am I alive? Why did the treatments work for me and not for my friend? Why does my hospital roommate’s family have to suffer with such a loss and I’m sitting here watching it? It’s almost easier to wonder why God didn’t just take you too… until you think of your family. And then the guilt comes back. Why some patients live and why some pass away is beyond my understanding. I’m not here to answer those questions. I’m here to say… it’s yet another emotion to mix in to a “big, ol’ hot mess” that just comes back around to fear.

And with the fear comes the battle… the same battle that you fought this morning when you got up, the same battle that you struggled with just 10 minutes ago, the same battle that will bombard you later in the day over and over and over again. I can win the battle. I can convince myself that I will be okay. I will read my Bible and glean truths that I already knew about but needed to be reminded of. I can pray for the Lord to help me. And I’m okay again. I can stand up and smile again. Until the next time it hits.

The battle never goes away. It never stops. The successes and victories are short-lived.

It’s a very real issue. Depression can be caused by an imbalance of chemicals… and, I’m guessing that poison can have an effect on your body’s chemicals (said sarcastically)! The medical field is catching on… albeit a little on the slow side,coming out with reports that are raising awareness of the trauma that patients are encountering in recovery. It’s a serious problem and I’m not the first one that has had to deal with it. I won’t be the last. But I can write about my experiences in hope that it might help another soul out there that is fighting the same battle, struggling with the same emotions.

Phil 4:6 “Be careful for nothing; but in prayer and supplication with thanksgiving let your requests be made known unto God.” I heard a statement that made me sit back and think… “God deserves our total confidence.” I will go to Him again and again. I will plead, beg, cry, and whisper to Him and I know that He will hear me.

Today I want you to pray for those that fight unseen battles every day. Pray for those that struggle every day. Pray for those that smile and say that they’re fine because underneath it all they are probably carrying a burden that’s too heavy for them. And if your burden consists of running out of coffee or who to invite over… thank the good Lord above, because it’s only by His grace that you haven’t heard those words, “I’m sorry…. but you have cancer.”

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My loved one has cancer. What are helpful items that I can give/send them?

Cancer treatments can vary widely. There are a million different kinds of chemotherapy and combinations of chemotherapy. My first rounds were the heaviest and strongest (referred to as a “blitz” in a vain attempt to slow the rapidly encroaching tumor’s growth) and reeked havoc on me. Some oral pill forms of chemo don’t always have such drastic side effects but in the end there are a few things in common … every patient is scared, feels sick, is tired and fatigued, and usually has a miserable, metallic taste in their mouth, has lost their appetite and may be constantly nauseated.

Things that I found helpful:

1. A biker cap/golfer’s hat; it had ties that draped down the back of the neck (some meant for under a helmet). This protected my bare head and the back of my neck from the sun and elements better than anything else, stayed on, was made of cotton so it was cool.  It wasn’t tied around my head and could easily come on and off in accordance to my hot flashes! I gave up on scarves early on but that may be a direct reflection of my patience!! 😉
  
2. Chapstick; no matter what chemo cocktail you end up with, you’ll end up with chapped lips. I preferred a really nicely, fresh scent like pink grapefruit to help with odors. I also had a plain one for those really bad days where I couldn’t handle any smells. I used lip gloss for when I wanted to feel a little prettier and add a little color to my greenish-hue face!

3. Lotion; I couldn’t take the smell of many of the good quality lotions like Eucerin. It stunk like ugly medicine to me. I preferred an Aveeno that was more natural with a pleasant odor yet fragrance-free. Skin is super sensitive so froo-froo lotions aren’t always your best bet. My face was swollen, skin was flaking off, & had turned a blotchy orange-red color… & was incredibly tender.

4. Sanitizer lotion; used this more times than I can count! I needed lotion but was always concerned about germs. Perfect!

5. Mints; the patient will have a hideous metallic-type taste in their mouth that they can’t get rid of. I didn’t have the strength to chew gum but I could let mints melt in my mouth. I usually preferred a hard peppermint version since the peppermint usually helped calm my stomach. Soft ones usually dissolved too quickly and I would find myself popping more than I had intended, then finding myself feeling sick from all the sugar! Stay away from an artificial sweetening; the more pure and natural, the better. Ginger chews/candy was also helpful; usually very healthy (depending on the brand, I suppose) and ginger also aids in calming an upset stomach.

6. Bottled water; its important to drink a lot of water to flush your system after treatments. Regular water made me gag. I discovered peppermint water at a health food store and that became a staple in my house for awhile. Now I might recommend peppermint oil that can be ingested, added to your water. I also discovered coconut waters and the peach-mango is still my favorite! Sometimes a propel packet to add to a bottle of regular water will help.
  
7. iTunes gift cards so they can load audio, movies, music, etc., on their device. Holding a book is tiring and trying to remember what you just read is difficult.

8. Electronic games and app recommendations; so, so, so many hours and sleepless nights in the hospital and they quickly get bored with the three favorites that they usually play. Setup a game where they’re playing their friends via fb or something; it keeps them connected to the outside world without going outside. “Here man, I found this cool new game. Let me load it for you and I’ll show you how to play it!”

9. Pillows; big or small, I used them all. Small ones for my port, bigs ones for my back or to prop my body on its side after surgery. When you’re stuck in one place for a long time – couch, recliner, bed – you need some pillows to keep you comfortable!

10. Blankets; I have one blue, fuzzy blanket that was sent to me early on in my treatment and I still use it almost on a daily basis! Not too heavy, not flimsy thin. It kept me and my feet warm when I was freezing and then would be wadded up for a pillow if I got too hot.

11. Housecoats/lounge wear; whether in the hospital or at home you need to be comfortable and pjs sometimes make one feel like life hasn’t really started. A nice lounge set allows them to be feel like they can greet guests and still be modest without having to yank on heavy jeans and iron a blouse! Hospital gowns just make you feel sick so it’s a nice option to have in the hospital. Buy sets the button in the front so the nurses can easily access the port.

12. Socks; I wore flamboyant socks every day to radiation because the gantries were cold. My socks became the talk of the team in Gantry #2!!! Fuzzy socks were important in the hospital because they were inevitably cold. Sticky padded imprints on the bottom helped me not to slip on slick hospital floors. They all, of course, keep you from walking on a public floor barefoot… gasping in horror!!! 😱

13. Scents; sometimes I could smell dirty laundry, body odor, outside smells, staleness … whatever… my nose was performing to the best of its ability! I couldn’t handle the fake, overly perfumey candles. We looked for more wholesome candles with less flamboyant scents. I have oils but oftentimes I would switch from enjoying a scent to it being too much in an instant & oil smells sometimes lingered too long. Peppermint helped with headaches and nauseousness. Being able to move the scented item away is key!

14. Blank cards; there’s always a thank you card or note that they’ll want to write. Throw in a few stamps & a pen to make it even easier!

15. Gift cards; restaurant gift cards, gas cards, grocery cards. These were amazingly helpful for basic needs of our family. We found ourselves preparing quite a few crockpot meals that we could freeze and the kids didn’t have to do very much to get dinner ready… and I knew they were getting a decent meal. Gas cards were (and still are!) used right away with all the appointments and driving. Even if it’s not that far, it’s nice to be able to give a gas card to a friend that ends up driving your kids to appointments or games for you, or running out to get food for you (or bring your kids to the hospital to visit you.) Restaurant gift cards were used mostly for my husband so he could grab something to eat instead of eating cafeteria food (my hospital was vegetarian so there really weren’t many meals that anyone was desirous of!!!) and he would bring me something occasionally if I looked interested.

16. Something fun; stuffed animal, word puzzle book, fingernail polish, tea bags, snacks or a favorite candy, comic book, etc. Remind them that they’re human and can still have fun!

What do you say to someone when you find out they have cancer?

A cancer diagnosis turns your world upside down and inside out. You look at your meager savings and know it’s nowhere near enough. You look at your spouse and know that there will be heartache and extreme fatigue, possibly depression and fear. You look at your children and know the fear and anxiety that they’re feeling. Tomorrow is not guaranteed like it had been up until now. Losing a beloved family member is a very real possibility! The doctor’s appointments, the massive testing, the hospital stays, the travel, the late hours. It all compiles to create an entirely new life that will become the new normal.

After the family knows, the word starts to spread. Co-workers, pastors, friends, extended family all begin hearing the news. And, they all have the same questions that you, your spouse, and your children all had the first time they heard. 

How bad is it?

What kind is it?

How long do you have?

What are they going to do?

Where are you going to go?

Are you still going to work?

Are you okay?

Where is the pain/tumor?

Are you sick?

Will you have to do chemo?



As you can imagine, answering these same questions over and over again become discouraging. You have to continually relive the most hideous, terrifying moment of your life over and over again and you want to curl up in the fetal position and sob uncontrollably… but you try to hold it together just long enough to tell the story and answer the same questions… again.

We worked hard to gather as many of our friends and co-workers together at one time as possible. I had Ewing’s sarcoma and the treatment plan was severe and would mean that I would no longer be able to work. For an entire year. My new job was to focus on fighting for my life … full-time. And I would need a caregiver with me at home. My boss and my husband explained the situation in detail and answered questions as best they could. I closed my office door, my mind reeling from everything that had just happened and still in shock as to how my life would continue to change beyond my worst nightmare. I didn’t want to talk about it. I would inevitably cry and I didn’t want to appear weak. I wanted to be happy and strong. 

  

Questions, although helpful in gathering information, can be asked anytime. You don’t HAVE to have an answer to all of your questions in order to help. Leave the questions for another day. Allow a family spokesperson to answer questions for you or arrange for a spokesperson for them & direct concerned friends to that individual. After awhile the family just wants to be left alone. They desperately need time together to absorb what’s going to happen. They need to come up with a plan of attack, what their new normal will look like, feel like, explaining new responsibilities that the kids are now taking on, explaining the new role that, in our case, mom would play.., not able to do much, if anything at all since I would soon be in a wheelchair and bedridden for days. We needed to figure out how often our kids would need an adult-figure in the home with them while Mom and Dad were gone for a week for chemo treatments. Our kids were old enough to look after themselves but at the same time, they were still “just kids.”

When someone finds out they have cancer, you don’t have to ask all of the questions that will naturally come into your head… especially immediately after their diagnosis. Those will come with time. They need encouragement. They need to know that people care enough to pray… and that they will pray earnestly and fervently. They need to know you care. A short one-arm hug, telling them you’re praying will go a long way. A notecard with a $20 bill to say you want to help them with fuel. A heartfelt “I’m praying for you” can go a long way. Some method of communication that doesn’t require some sort of response on their part is always a blessing. You don’t have to say a lot.

Now, if you happen to be a friend who has also experienced the life changing process of hearing a cancer diagnosis, you may very well become the voice of reason for that person and the exception to the rule. One statement I heard from a dear friend who experienced a different type of cancer but had gone through it twice told me early on, “just remember that because you were diagnosed with cancer, does not mean you’ve been given a death sentence. There is hope. You can beat this!” Words of encouragement from a fellow patient or a cancer survivor carry a lot of weight. Another friend whose cancer situation was much more severe than mine, rolled over to me in her wheelchair, her fried hair just barely coming back in after her latest chemotherapy, hoarse and breathless, stood up in front of me, grabbed both of my arms (both out of compassion and also in an effort to give her stability), and passionately said, “Fight! Just keep fighting it! Never give up!!” She had been told she had cancer in stage four … nine years ago. She had managed to defy the odds and live life much longer than what doctors had given her. And she worked hard to use every one of those minutes with her family. That was the last time I would see her. Her battle ended soon after that.

On the other hand, don’t trivialize their situation by saying “my uncle had —– and he’s fine.” or “my grandma had —– and she died just 3 months later.” Realize that their story is unique and your family story really has no relevance… at least not right now. Show that their situation and their needs are important to you!

So in short… you don’t really have to say anything at all. It’s okay to cry with them. It’s okay to hug and pray with/for them. They need to know that they have a support group and faithful prayer partners. Then their careening world might slow down long enough for them to realize that with friends everywhere praying for them, that maybe, just maybe, they’ll be able to handle this and be sort of okay.

Questions from Loved Ones

I inquired about questions or topics that loved ones had when it came to Cancer affecting a friend or family member. I’ve only answered a couple of them so I’ll keep adding to this blog topic. Keep reading for more updates! I pray this helps someone out there… even just one!!

 1. How can caring friends best be helpful and encouraging when the cancer journey becomes so long? What makes you feel most loved, remembered, and cared about?
Answer: Cancer, surprisingly so, isn’t just the battle through treatment, or doctors, treatment plans, medication changes, etc. It becomes a life change. Even if a patient is declared Cancer-free or in remission, the patient’s mindset has permanently changed. It has too! They take on offense… start playing a role that will, hopefully, help them ward off any future attacks or kill any lurking cells that may have been left behind. They think twice about what they eat, they think twice about overworking, or spending time away from family. Life needs to be lived to its fullest because they have very possibly seen the brink of death; all of a sudden, stopping to smell the roses becomes important. It’s in their mind with any new lump, bump, or bruise. If they start coughing, they think the worst. They start the morning wondering if this might be the day that changes their life all over again. Waiting for test results… everything changes… permanently. They are reminded on every front that they aren’t the person they used to be. They can’t do what they used to do physically. They might not be able to cope emotionally with what they may have easily handled prior to cancer. They’re tired and fatigued physically and discouraged emotionally because they are having a hard time bouncing back. Some, depending on the cancer treatments and severity of the diagnosis, may be diagnosed with PTSD. It’s a world that no one ever explains or prepares them for. And it’s overwhelming. They think they’re going crazy.
Encouraging words. Things like “you are a good example”, tell them if they’ve helped you personally in some way, how their struggle and battle may have encouraged you, write notes reminding them that they’re loved. Remind them to keep fighting; that they have a prayer team backing them up. Words are powerful. Very, very powerful. When they’re written, the patient can pull that old tattered note out months later and reread it and savor each word as if it were written just yesterday. Maybe you could call it recycling!!!??! It’s easy to feel forgotten… sometimes by friends, sometimes by medical professionals. “Well, you were done with chemo 6 months ago… how long can you really use THAT as an excuse???!”
The doctors tell them that recovery sometimes takes years but friends and co-workers aren’t sitting there in the exam room and don’t understand. The patient can feel like they’re complaining or being viewed as a whiner so they often tell themselves that they should be able to do more. A real friend will remind them that they’ve been through a lot and it’s okay to take it easy. Someone besides the doctor needs to be a voice of reason for them.

2. What are some things that would be useful to send in a “care package”?
Answer: cancer treatments can vary. There are a million different kinds of chemotherapy and combinations of chemotherapy. My first rounds were the heaviest and strongest (referred to as a “blitz” in a vain attempt to slow the rapidly encroaching tumor’s growth) and reeked havoc on me. Some oral pill forms of chemo don’t always have such drastic side effects but in the end there are a few things in common … every patient is scared, feels sick, is tired and fatigued, and usually has a miserable, metallic taste in their mouth, has lost their appetite and may be constantly nauseated.
Things that I found helpful:

1. A biker cap; it had ties that draped down the back of the neck (meant for under a helmet). This protected my bare head from the sun and elements better than anything else, stayed on, was made of cotton so it was cool.

2. Chapstick; no matter what chemo cocktail you end up with, you’ll end up with chapped lips. I preferred a really nicely, fresh scent like pink grapefruit to help with odors. I also had a plain one for those really bad days. I used lip gloss for when I wanted to feel a little prettier and add a little color to my face!

3. Lotion; I couldn’t take the smell of many of the good quality lotions like Eucerin. It stunk like ugly medicine to me. I preferred an Aveeno that was more natural with a pleasant odor yet fragrance-free. Skin is super sensitive so froo-froo lotions aren’t always your best bet. My face was swollen, skin was flaking off, & had turned a blotchy orange-red color… & was incredibly tender.

4. Sanitizer lotion; used this more times than I can count! I needed lotion but was always concerned about germs. Perfect!

5. Mints; the patient will have a hideous metallic-type taste in their mouth that they can’t get rid of. I didn’t have the strength to chew gum but I could let mints melt in my mouth. I usually preferred a hard peppermint version since the peppermint usually helped calm my stomach. Soft ones usually dissolved too quickly and is find myself popping more than I had intended but then I’d start feeling sick from all the sugar! Stay away from an artificial sweetening; the more pure and natural, the better. Ginger chews/candy was also helpful; usually very healthy (depending on the brand, I suppose) and ginger also aids in calming an upset stomach.

6. Bottled water; its important to drink a lot of water to flush your system after treatments. Regular water made me gag. I discovered peppermint water at a health food store and that became a staple in my house for awhile. Now I might recommend peppermint oil that can be ingested, added to your water. I also discovered coconut waters and the peach-mango is still my favorite! Sometimes a propel packet to add to a bottle of regular water will help.

7. iTunes gift cards so they can load audio, movies, music, etc., on their device. Holding a book is tiring and trying to remember what you just read is difficult.

8. Electronic games and app recommendations; so, so, so many hours and sleepless nights in the hospital and they quickly get bored with the three favorites that they usually play. Setup a game where they’re playing their friends via fb or something; it keeps them connected to the outside world without going outside. “Here man, I found this cool new game. Let me load it for you and I’ll show you how to play it!”

9. Pillows; big or small, I used them all. Small ones for my port, bigs ones for my back or to prop my body on its side after surgery. When you’re stuck in one place for a long time – couch, recliner, bed – you need some pillows to keep you comfortable!

10. Blankets; I have one blue, fuzzy blanket that was sent to me early on in my treatment and I still use it almost on a daily basis! Not too heavy, not flimsy thin. It kept me and my feet warm when I was freezing and then would be wadded up for a pillow if I got too hot.

11. Housecoats/lounge wear; whether in the hospital or at home you need to be comfortable and pjs sometimes make one feel like life hasn’t really started. A nice lounge set allows them to be feel like they can greet guests and still be modest without having to yank on heavy jeans and iron a blouse! Hospital gowns just make you feel sick so it’s a nice option to have in the hospital. Buy sets the button in the front so the nurses can easily access the port.

12. Socks; I wore flamboyant socks every day to radiation because the gantries were cold. My socks became the talk of the team in Gantry #2!!! Fuzzy socks were important in the hospital because they were inevitably cold. Sticky padded imprints on the bottom helped me not to slip on slick hospital floors. They all, of course, keep you from walking on a public floor barefoot… gasping in horror!!! 😱

13. Candles; sometimes I could smell dirty laundry, body odor, outside smells, staleness … whatever… my nose was performing to the best of its ability! I couldn’t handle the fake, overly perfumey candles. We looked for more wholesome candles with less flamboyant scents.

14. Blank cards; there’s always a thank you card or note that they’ll want to write. Throw in a few stamps to make it even easier!

15. Gift cards; restaurant gift cards, gas cards, grocery cards. These were amazingly helpful for basic needs of our family. We found ourselves preparing quite a few crockpot meals that we’re here could freeze and the kids didn’t have to do very much to get dinner ready and I knew they were getting a decent meal. Gas cards were and still are used right away with all the appointments and driving. Even if it’s not that far, it’s nice to be able to give a gas card to a friend that ends up driving your kids to appointments or games for you, or running out to get food for you. Restaurant gift cards were used mostly for my husband so he could grab something to eat instead of eating cafeteria food (my hospital was vegetarian so there really weren’t many meals that anyone was desirous of!!!) and he would bring me something occasionally if I looked interested.

16. Something fun; stuffed animal, word puzzle book, fingernail polish, tea bags, snacks or a favorite candy, comic book, etc.