When you or a loved one is diagnosed with cancer I think everyones head just starts to buzz a bit. You see the doctors mouth moving but really can’t hear anything. I think our body just kind of shuts down to protect itself… even if it is for just a moment or two. I can not for the life of me imagine hearing these words while sitting alone in a doctors office. I know when Peter was diagnosed the air left the room. While neither of us are “wallowers” there certainly was a deep panic, horror, sadness, fear and helplessness for a few moments as the doctor was speaking. Then it was time to gather information, snap out of it. It is incredibly tough to be a passenger along for the ride when a loved one is diagnosed with cancer or any other life threatening or debilitating disease. Part of dealing with it is learning everything there is to learn, so you can be the best advocate that you can be. It takes away the total helplessness. I did nothing but research everything I could find for months… it became my job. I took notes, asked pages of questions to every doctor we visited. I can not imagine facing something like this without an advocate!! That is what I’d like to share with anyone struggling. The more you know and learn, the less helpless you feel. The more you learn about the condition the more equipped you are at caregiving and also finding the right treatment plans and options that your loved one has. You can surly accept whatever is spoon fed to you in the midst of the fear but then you are just along for the ride… feeling helpless. Peter already had so much knowledge about CLL after watching his brother Steve struggle for so many years with it. He knew immediately what he would and would not do considering treatment. In that few moments of Buzz in the doctors office when he was given a diagnosis, I think what snapped me back was when he said I will not do chemo. It’s so hard not to let the fear grab ahold and gallop away. For myself I found that prayer and research helped me rein it in. There is so much cutting edge medicine out there… but we needed to find it. I researched everything I could get my hands on. I can’t imagine how it must have been before the internet!! There is so much information out there.. good and bad. I have mentioned before that I didn’t really find a support site for spouse or partners other than the take care of yourself stuff. Being a passenger along for a ride when Peter is in the drivers seat with no steering wheel was beyond overwhelming in the beginning. We both have strong faith that the path he is supposed to take will open when the time is right… and it did. I not only researched treatment options.. standard forms, medicinal treatments but also alternative treatments and philosophies. Any thing it takes to save Peter and heal him is what we will do. We are both interested in integrated medicine and alternative therapies and lifestyle changes that can be mixed with western medicine. Any treatment that can do no harm or work to enhance treatment is what we decided to embrace. Peter’s diet used to be pretty unhealthy prior to my moving in with him. Since that time he has been eating natural and organic meats, vegetables, fruits and grains. Now we have added juicing to his routine.. nothing but organic non GMO items and adding turmeric and wheat grass. He was taking immune boosting herbs up until his clinical trial began. We use essential oils… primarily frankincense and myrrh (both are boosters of cellular health and immune boosters…. being used in cancer research… the 3 wisemen were wise indeed), once Peters strength returns we exercise and do a bit of yoga, reduce stress however we need to and I also went and took training and became certified as a Reiki practitioner. Reiki is a Japanese based healing and relaxation technique used for centuries. Some religious people may think this is voodoo but I assure you my lineage is faith based. It has done amazing things for Peter’s stress relief and seems to improve his blood count numbers. Reiki is recognized in the health field and is even offered in many hospitals to patients and their family’s.

If you don’t know about Reiki I include some links for you.
http://www.christianreiki.org ,
https://experiencelife.com/article/the-art-of-reiki/ .
For information on essential oils I include these links.
http://draxe.com/frankincense-oil-cancer/ ,
http://thetruthaboutcancer.com/essential-oils-aromatherapy-cancer/ ,
http://doterra.com/en.

As far as diet and alternative thoughts.. integrative ideas I offer these links..
http://www.drweil.com/drw/u/ART03060/Treating-Cancer-With-Integrative-Medicine.html
http://www.drweil.com/drw/u/id/ART00668
http://www.helpguide.org/articles/diet-weight-loss/anti-cancer-diet.htm
Eat foods as close to nature as possible. No GMO’s, No hormones, No antibiotics added to foods, eliminate added sugars and high fructose corn syrup which is hard… they are in nearly all prepared foods, eliminate pre packaged foods. If you can not pronounce the ingredients because they are all chemicals… DON’T EAT IT!!!! Shop local and fresh, eat what is in season. Yes, it costs more.. but I can say without hesitation… cancer costs more!!!
One of the best pieces of advice I was given early on was to just sit together and talk deep, make a plan, find your truth and balance… and support each other 100% in whatever decision is made… and then block out all the noise around you. Everyone has advice.. and it all comes from love & caring… but ultimately the decision is personal. Everything is weighed, measured, and prayed about. This is the advice we took & followed. Between the clinical trial and all the other integrated treatments Peter is doing great… and we focus on his healing.

The bottom line is this… whatever it takes…

Being alert… that is the name of the game. There is no other option. If we don’t stay on top of things too much falls through the cracks. As Peter spoke in his last Blog; going out in public situations has its fears for sure. So many people don’t give a second thought about going out sick. The old “I’m tough… I can work through this” or “ I’m not missing this for anything” excuses. Hey, we’ve all done it… wow, how I deeply truly hope I never endangered anyone I came in contact with. I understand so deeply the risks now. When Peter and I go out now things are very different! For starters he needs to wear a mask to protect himself. People who don’t know him avoid him, even refusing to make eye contact! so bizarre. I can’t tell you how many people I see every day that cough or sneeze without covering their mouth or nose.… I guess everyone wasn’t taught this, or they have forgotten the importance of it. All I see now is the spewing germs flying out and covering everything in their path and beyond… shopping cart handles, doors, isles in stores ( and the items sprayed in the process), any self serve buffet ( you know the ones I’m talking about here..), chairs in movie theaters, planes…don’t even get me started on public bathrooms… everywhere we go.. germs. Remember when you had your first baby and everything was so scary… we are reliving that in hyperdrive now. It’s easy to see how over the course of time an immune compromised person and their family members can become quite phobic about this stuff… because it is so real and the risk is so great!!! You might think you need to live in a little bubble and retreat from the public life… become a hermit…. but life goes on, As Peter’s late brother Steve said: ‘you have to LIVE until you die. The issue then becomes how do you still live without being in a constant state of fear & worry. Well for starters, I hope to educate the people who have forgotten the basic rule… if you’re sick stay home… or for crying out loud cover up when you cough & sneeze… sheesh!!! I’m not going to apologize for saying something, after all, keeping Peter healthy is my mission!! It’s a whole new way of life. We come to a public door now and I touch it to open it, I grab the filthy shopping cart and then wipe it off. I keep my eyes open wherever we are to avoid the isles where there are coughing and hacking people. Hand washing Hand washing Hand washing… traveling antibacterial hand wash & wipes!!!!!! It’s a tall task…. one person at a time…Oddly enough and quite scary, the most recent place to fear was in the local emergency room.
Peter had an accident at work, he just about cut the top of his finger off. This is how our date night started off… LOL… trip to the emergency room. Everything is quite different in life now…. all incidents need to be reported to his doctor & team at OSU. When the local ER doctor came in she said we need to give you a tetanus shot.. this was after she unwrapped his finger and poked around a bit. Now mind you, Peter’s platelets are pretty low so he bleeds easily and lots. We explained that he has leukemia and is in a clinical trial and we needed clearance from his oncologist… she seemed exasperated, she said it’s not a live vaccine. I explained again that we had to clear everything with his doctor in Columbus because of the cancer & the clinical trial. Well while I was on the phone with them this local ER doctor stuck him with a syringe of lidocaine .. WITHOUT EVEN CLEANING HIS HAND FIRST!!!!! Peter said whoa, you need to clean that area first….doctors response “nope”. Peter’s hands were filthy… he had been working in a dirty old house all day. She poked him twice without sterilization before I came back in the room. I could see he was sick to his stomach with stress & worry… and then he told me what had happened. We had talked to both doctors at length about how susceptible he is to secondary infections…how does this have any excuse? When they came back in to stitch his tip back together this same doctor told the second doctor she would help… I had seen her put gloves on and then open & close the door using the handle a couple times, type on a computer keyboard that wheels around the ER, hold the computer on wheels roller cart and move it, play with her hair, hold a pen and touch her face… as she moved in and reached her hand out to assist i spoke out. “Are you going to change your gloves first… you need to be sterile before you touch my husband”. She said “I can”… yes please. She did, and all the while Peter and I reminded her of the need for caution.. she ended up leaving the room and leaving the other doctor to stitch him up. The sterile doctor… who was painstakingly cautious about everything… to him a giant thank you!!!! Nice job stitching!! Seriously… going out in public is scary enough… but must we really worry in a place where our health and safety is supposed to be job #1. This is an immune compromised life…. not just for Peter, but for myself and all of us that love him. As his wife and partner it is my full time job as well. Cancer effects us all. As we stated when we started this Blog, we want to educate & support anyone who is going through anything similar and also people in general. Everyone in some way is or will be touched by cancer or a condition that effects immunity in their lifetime. There is support for patients… but this is information for caregivers and family as well. You have to stay alert and on your toes at ALL times… no matter where you are!!! The message here is this, we all as a society need to look out for each other more. Everyone has a story or a struggle, see beyond yourself.. the big picture if you will… and if you are sick, please stay home!

Source: Fear behind the mask

Having a compromised immune system makes me vulnerable to colds, viruses and such. My best protection against this is to just stay home (live in a bubble). My wife, family and close friends can attest that I am NOT one to do that! I am a very social person and I am easily bored sitting at home. I can only absorb so much Netflix!

Wearing a mask is yet another level of accepting my disease. To admit I am sick and vulnerable drives home the reality that I am in a battle to literally save my life and that’s a big dose of reality to swallow! I have been resistant to wearing a mask, subconsciously because it meant facing that. A couple public events recently have made me reconsider. I thought if I was careful, kept my distance from people and didn’t hug or shake everyone’s hand, I would be fine. Not so. I felt like crap for a couple days after.

Friday night came and I wanted to celebrate the fact that I had just completed my first 5 day work week in months! I came home from work with a spring in my step and an abundance of energy that I hadn’t felt in a long time. It was ‘First Friday’ and there was a lot to go see and do in the arts district of town. As a precaution, I decided to wear a mask, but with a bit of flare. With my wife’s help, we put lips and a mustache on the mask. I had heard stories from a friend about how strangely people treated her when she went out in public with a mask. One person even went so far as to say to her “If you’re sick, why don’t you just stay home?” like she was the infectious one! Surely making my mask “fun” would remove that awkwardness?

The first stop was a very crowded art gallery. I felt very awkward and didn’t want to leave my wife’s side. We held hands and stayed close. At first, I felt myself avoiding eye contact with people. I felt shame. Eventually I realized this was the wrong approach. I needed to ‘own this’ so I started to look at people and try to say hello. NO ONE would make eye contact! As soon as I saw them looking, they quickly looked away. People moved out of my way or changed direction when their paths were about to cross mine. Kids would stare, but not speak. After the art gallery we strolled over to a wine shop for a wine tasting. Again, crowded and the same response from these people. No eye contact. No engagement in conversation.

The wine shop had a couple plates of cheese cubes with a shot glass of toothpicks to spear your cheese with. Suddenly, the thought of sharing a public platter of cheese opened the door for fear to creep in. “I wonder who coughed or sneezed on or near this?” “I wonder who fondled the toothpicks, cheese, plates…” An endless slew of little arrows of doubt and fear pierced my belly and the joy of the evening was in dire jeopardy. Given my conviction to not cave in to my fears and to not live in a bubble, I wrestled to not give these fears credence. My wife was well aware of these fears (very real risks) and kept as much space between us and the crowd as possible. She was my buffer zone. When someone sneezed, she quickly pulled us to a nearly empty corner of the shop for us to stand. The young couple that was already there soon vacated, perhaps fearful of this “masked man”?

A quick trip to Target, alone this time, netted the same results. People are either fearful of someone wearing a medical mask, or are just too uncomfortable to even say hello! Only one woman in that crowded store smiled and said hello (her husband did not). It’s sad really, that I would feel any kind of shame in protecting myself while so many people go out in public or to work sick! They cough and sneeze without covering. They risk infecting ME and I’m feeling shame?

Reality check, folks. If you see someone with a mask on, it’s for them not you. Don’t be afraid to say hello or make eye contact. They are still human beings with feelings that are taking a risk just being out in public! Cancer rarely kills people, infections do. The flu to an immune compromised or immune suppressed cancer patient can take their life! At the very least it can mean lengthy hospital stay for heavy antibiotics intravenously. It may only be a cold to you, but to someone with a fragile immune system, it’s a HUGE deal. WASH your hands. COVER your cough or sneeze, please. Be considerate and …say hello