A current update from June

Ok I am so sorry that I haven't posted before this...I know most of you have heard via word of mouth, text, email etc...but I always like to post on here not only for those of you who haven't heard but for my yearly book we make from the blog...its my scrapbook and journal all in one! Ok...so....Back in the first part of June Ray had his scans and lab work done. His scans included, a CT of his chest, abdomen, pelvis, and left leg. He also had a bone scan head to toe (since that's where the cancer has metastasized ) GREAT news! The bone scan looked great!! Plan for the follow up in another 6 months! CT looks pretty good....there is some unexplained thickening in his intestines. Without going in and looking they are not sure yet....and since Ray is pretty much opposed to any optional surgery...it could be scar tissue, inflammation, or a tumor starting the doc said it won't hurt to wait and we will see what the next scan in six months bring. So good news so far...as far as the lab work goes...his A1C went up two whole points! THAT'S BAD!! So he is supposed to follow up with his endocrinologist and be a much better boy!! We will see what happens with that LOL All in all we couldn't have been happier....it looks like we will finally escape a summer without a month or more in the hospital!!! Ray does struggle daily and I don't want to make lightly of it....His strength is admirable...he is AMAZING! I have to see the extremes here at home and its hard on us all. But we still like to stick to the motto...Make the most of EVERY day! Thanks for again for the endless prayers and support...it means EVERYTHING to us! HUGS!

A much needed update....

Ok...we have had a tremendous amount of "stuff" going on since the last surgery, last post....some good, some great, and others we just would rather not deal with...I think that is why I haven't blogged...if its not in writing its not reality kinda thing again. Ok so Ray had another post op visit since the last one mentioned....Things looked good...but he is a VERY bad patient...still to this day he is only supposed to be on 50% weight bearing...which would mean a cane or crutch assisted....He has been without those devices since about 1 week of surgery!! I know he needs to and should....but you try telling a person who doesn't give a dang to do it! :o) I just let him be him for the remainder of his time! We are scheduled to have a full body scan in little over 3 weeks. So we are trying to act as normal as one can under our circumstances. Ray continues to work in the dispatch office...a tremendous blessing to us all! (The Lord is mindful of our and your prayers!!) But he deals with extreme pain DAILY (no release of it) and constant swelling, and very little sleep again :o( But he is so strong and always...ALWAYS puts on a brave face outside the home (well except for once at the Disney on Ice...Manda you know what I mean) He is finally getting a handicapped placard...which his doctors office was under the assumption he had it this whole time....Ray can be stubborn that way...but its his stubbornness that gets him as far as he is! Well that's it in a very VERY small nutshell! I will honestly try to do better at updates! Thanks for the continued help, cards, prayers and continued love!

2nd post-op visit in January...if only his leg looked this good now!

A post from our family blog from January!...gives some updates...and more to come..

Back to IMC we go.... Not the way I envisioned starting out 2011...but none the less we were at our ever becoming home away from home.....Ray had his surgery on January 5th. We were all in agreeing (Ray, Me, Dr. Scott) that if the tumor was more involved then just IN the bone (i.e. around the bone, in the tissue etc..) Dr. Scott would just take the biopsy samples and close him up. We would then schedule an amputation. If it was NOT involved we were sticking with the "temporary fix". So that was performed! The only other place he currently found cancer cells was in the muscle that was rubbing up against the tumor. So he drilled out the tumor, filled the hole with liquid nitrogen and then put in bone cement. He also did a bone marrow aspiration from Ray's hip and injected it into the sight of his non-union. The non-union is from the surgeries in July. The upper part of the cadaver bone and his own bone were not healing....so he added the marrow and another plate and screw to literally MASH them together! ::crossing fingers:: this works! Ray tolerated the surgery well...and we were looking like we would be out of the hospital sometime the next day....However about 3:30p the next day...Ray had unexplained shivers (no fever) and EXTREME pain. Dr. Scott and I decided to keep him in one more night to see if anything developed. Luckily nothing did....so Friday about noon we made it home....Ray was in good spirits talking with my Dad a even made a few phone calls. I settled in to do some much needed laundry folding....after about an hour he was asleep so I decided to go unwind downstairs for a bit (the girls were still with my family at a movie) after about another hour I thought I better check and see if he is ready for a pain pill...the last one he had was while we were still in the hospital earlier that morning. When I got to our room......My heart plummeted to my feet...it was a sight I will NEVER forget and pray I NEVER see again! Ray was unresponsive....blue lips and toes, the rest of him ashen in color, puffy, and grunting for air!!! I ran for the phone dialed 911. While keeping my calm, I grabbed a rob (last time I forgot), pushed all my neatly folded clothes into the corner as much as I could, unlocked the door, and tried to do as the 911 operator asked me to do. Lay him flat, tilt head back a bit....nothing was working. I was yelling his name, rubbing him (not gently either) I was soooo scared! The first to arrive was a police officer (I was still in control of emotions) I explained he was diabetic and I thought it might be that (again) so I said I would get juice...I learned from a dear friend of mine that if I couldn't get Ray to DRINK the juice I could at least rub it on his gums and that way he would get some of the sugar. Shortly after that (seemed like a week) the paramedics arrived and first thing they did was check his blood sugar. It was GREAT 173. So it wasn't that....by now he began to come around a bit...enough to look at us. (Later I found out that Ray really couldn't hear us...he said he had a very loud ringing in his ears). When the paramedics started asking me the details that's when my emotional roller coaster came to the big hill and descended....luckily my neighbors showed up a few minutes later!! Also on another weird note I felt like a criminal. They (the police officer and paramedics) as they were getting my "statement" were counting Ray's pain pills....it made me feel like I was on trial for overdosing him or that he intentionally took some...I know they are just doing their job but jeesh....I was picturing all those episodes of "Snapped" I watch LOL I kept telling them through my tears "He hasn't had ANYTHING since we have been home" I guess after they counted both bottles and found the full amount they finally believed me :o) So Ray was getting a ambulance ride...the bummer part is that he wasn't stable enough to be transported to IMC.....so we had to go to Lakeview (in MY opinion I really don't like that hospital) so we spent SIX hours there in the ER for them to get him stable and decided if he need to be admitted...answer YEP...another ambulance ride to IMC and we were settled into the room by about 11pm. The conclusion was that Ray does not react well to Oxycontin!!! (He had a two doses at the hospital prior to discharge) And with the bad reaction and only having 1/2 a diaphragm he was to sedated to breathe deep enough therefor causes too much carbon monoxide to build up...and therefor creating a very bad situation! So they kept him over night and we were home again on Saturday about 3pm. (Ray came home to freshly scrubbed walls, floors and new bedding...darn my OCD! I was bone tired!) No repeat ambulance trip but we did have a visit from Praxair Home Health to deliver us Ray's oxygen for sleeping and naps. He did stay home ONE day on Sunday to recuperate but come Monday morning my ever strong and brave man went to work!!! He is amazing!!! Then on Tuesday we had our 1st post op follow up with Dr. Scott. We got to take a look at the new scar for the 1st time, the JP drain came out, and then he was re-wrapped with the instructions of no weight bearing (yeah right!) and to come back in 2 weeks for suture removal! All in all since the two set backs he is doing amazingly well! We still don't have amputation off the table yet. Things that might put it right on the front burner again. Pain intolerance, the non-union continues to be a non-union, better mobility with a prosthesis, or the inevitable cancer returns. We certainly know we are on borrowed time and have a 95% chance of it coming back not only in the leg but also elsewhere in the body. So we still just make the most of every day and we are spending these next few months celebrating Ray's life and making memories while he can!

Morning of the surgery! He looks so sexy in his gown and cap!

Post-op visit getting ready for the unveiling!

If your squeamish don't look here!

Dr. Drill and Fill

You remember those from your childhood?? There was this plastic head and you were the dentist...you molded teeth good and bad and had tools to clean, fix, and pull....well every time I think of Ray's surgery and the procedure they do basically make me think of that...Ok...side tangent! Well Ray's was scheduled to be in here @ 9am. So he went to work this morning about 4am. At about 740a the phone rings its IMC and they want Ray...I say he is not available and she proceeds to say "We know we told you to be in here at 9...but the OR is asking if you can be in at 815a! That was the time Ray was supposed to pick me up at home so we could safely arrive to the hospital by 9am. Off I go a racing to throw things together (I had vegg'ed thinking I had some time to decompress) call Ray in a flurry of activity and get some fire under his buns....but due to Ray's strong work ethic he wanted to finish imputing the dispatch stuff! SO my honey!!! He arrived at 800am at the house we were gone by 803am....arriving at surgical check in at 817am!!! Good thing we didn't have ANY traffic and the one lone cop we saw luckily didn't see me speeding down the road! We got checked in....Ray managed to have his blood drawn and a separate IV...A huge step for him...then we settled down to wait.....he was off to the OR about 10am. We said our good lucks and loves at the door and then headed down to the waiting room. I had only been there about 20 mins when I was told by my Mom that there was Dr. Scott....my heart jumped into my throat...I knew that if he was out ALREADY that they had found it to be involved in the tissue and such...got up to meet him and he chuckled and said "Relax....I am here for another patients family that I just finished up" WHEW!! We all chuckled about that....then settled down for FARKLE! playing and card playing (it really does make the time go easier) about 1100a we got a call from the OR that said they were going to continue with the "Drill and Fill" and the doctor should be out in about an hour and half. Around 1:08p.m. he did come out. And explained that everything went well and Ray held up well. And although the amputation is still not off the table he felt comfortable doing the temporary fix and letting Ray heal some then we can discuss other options as needed down the road! So it was drilled, cleaned out, liquid nitrogen put in to freeze as many cancer cells as he could, another plate inserted with another screw (for the non-union) issue and rod stabilization. He also took an aspiration of Ray's bone marrow from his hip to inject into the bone to promote healing. And finally filled with bone cement. Ray did better this time in recovery not trying to escape the bed!! We moved to the 11th floor and have a great view of the east side of the valley. Ray spent most of the afternoon very groggy and incoherent....People started to disperse so he could rest. Finally about 6pm the nurse decided he was a little TOO groggy and they lowered the pain meds a tad....he was able to be alert and actually ate a dinner of turkey and potatoes and broccoli (and later a contraband brownie!) It took him a while and I had to help feed him and remind him to chew :o) But after that he perked up even more....he talked with this brother and a few friends via the phone and is now settling down again for a bit...the only thing left to tackle tonight is a "nature call" we have till about 11pm for the "visit" other than that he is antsy to get out of bed and "walk" with a walker but he has to wait for PT and so far not a sign of them....I am not sure what the doctors orders are on that...last surgery Ray needed to stay in bed till the next morning. At the rate we are going it might be that way this time as well. I have so many to be grateful for. I am grateful for mine and Ray's family for all the support they give. Also for the help my family is giving to keep our girls happy and safe....also the dear friends who have help hold my hand and give us emotional support as well! Thanks for all the prayers THEY DO WORK! More to come....love to all!

Its back to square one time...

I know its been forever AND a day since I updated here.....I have been overwhelmed with emotions, with the festivities of the season and plain just in denial....if I didn't type anything then maybe *just maybe* it wasn't real! ::sigh:: so much for that......Well here we are on the eve of Ray's surgery and I will give a brief of what we know so far. We know for certain that there will not be an amputation tomorrow. After our doctors visit today we chatted with Dr. Scott and he said he doesn't like his patients going under NOT knowing a plan....is the leg gone? will the leg stay? kinda thing. We did have another x-ray done and unfortunately the tumor has grown again since the last x-ray (darn aggressive thing anyway!) So we (Ray and I) with Dr. Scott on board came up with a game plan. Dr. Scott is a little concerned that the tumor not only is IN the bone but AROUND the bone like last time (tissue involvement type of thing) IF that is the case tomorrow when Ray is opened up he will take a biopsy and close him up. At that point we will do one of two things A: schedule a surgery in the near future for a leg amputation slightly above the knee. Dr. Scott says the prosthetic works better with a artificial joint (aka knee) plus it will give a greater chance of having clean margins. or; B: we will do nothing and let it run its course and treat pain and so forth accordingly. Our choice as of right now definitely leans to choice A. BUT after we find out for sure we will have another heart to heart and find out a time line of life expectancy with just letting it run its course. Ok...next IF it doesn't have tissue involvement we revert to a surgery tomorrow where he will drill out the tumor in the bone take an aspiration from the hip of bone marrow to inject into the bone to promote healing and use liquid nitrogen to try and freeze as many cancer cells as he can. Then fill up the hole(s) with bone cement. He will also at the time secure the rod that may be causing some of the pain and be wobbly. So in a nutshell that is it for now....I promise as things develop I will keep it updated I know we have tons of family, loved ones and friends who are praying and wishes us well and want that update. Thanks to all those who continue to support us. We love you all! HUGS!

My personal lowest week yet...

Ok....so to bring everyone up to speed....We had a few deadlines we had to meet.....Ray had to be back to work no later then November 17th (Our FMLA ran out....if not back by then...no job...no benefits) Dr. Scott reluctantly gave a note (Ray had to follow it to a "T") only one run per day and no lifting and no carrying things. He is still only supposed to put 50% of his weight on the leg and is still on a crutch (we are hoping to purchase a cane soon when we have the money) So Ray goes in to work and they said they weren't too sure of him driving with those type of restrictions. They wanted to check with risk management. So he was sent home that day. BUT the miracle part of that is....the next day they had some "office" work for him to do. Just a few weeks prior they had gotten a new computer system and they are behind inputting all the paperwork. (ever hear the saying when a door closes the Lord opens a window??? HERE is one of those times!) We don't know how long he will have this opportunity BUT it gives him something to do....gives us a little more income (which is so desperately needed! It is so hard to ask for help from family, ask for charity, etc....but without it we would be far worse off!) Ray and I have worried horribly about bills....our mortgage is still too far behind.....and with the holidays it was even more worrisome for the girls...but again we have had SO MANY miracles on our behalf.....I wanted to personal thank all those again who have sacrificed and provided for our family (even those anonymously!!) Ok....that upbeat part done.....Now to the doom and gloom...(and the lowest of the lows) Ray had his CT scan a couple of weeks ago. (They did chest, abdomen, and leg) Ray and I knew when Dr. Ott asked for both of us to be on the phone that wasn't good.....The upper part is clean as a whistle!!! But there was a "spot" that Dr. Ott said showed up on the leg. And since he is not the Ortho Oncologist he referred us back to Dr. Scott. We called their office (they are in the same building as Dr. Ott) told them that the CT was available to view online (isn't modern technology wonderful!) Lani said she would have Dr. Scott look at it then let us know. Well a couple hours later she called and asked when our next appointment was....we said December 16th...she said...well lets get you in now to discuss options....both Ray and I knew things were even worse then we could imagine....So two days later we went in...Us, Ray's parents, and Ray's two older girls....we all sat in the room and heard the news.....Yes there was a tumor :o( Dr. Scott had seen a spot on his Xray in September...but didn't want to have anything else stress Ray out while the healing from the surgery was so critical, so he was going to watch it. The scary part is...it was NOT there in the end of July.....and since the September Xray has grown quite rapidly so its a more aggressive tumor. This one is located ABOVE the cadaver bone just under the knee cap on the tibia. There is also another "spot" but he is unsure if this is a tumor or not...it may be caused from his rod in the tibia moving....Ray always said he could feel something moving (I thought he was crazy...but Dr. Scott says it is entirely possible) and it is STILL not healed...it has a definite black line all the way between Ray's bone and the cadaver bone....Ok...so.....options......One...is to do a "quick fix" that may or may not get all the tumor/cells out....picture it like a cavity....Dr. Scott would go in...drill out the tumor and use nitrogen to "freeze" the cells...he says the nitrogen goes in about 1mm into the bone...then he would fill it with bone cement. OH and also at that same time he would put another screw in and a plate to help the rod not move so much and "scrunch" the two bone (Ray's and the cadaver) together....Two....amputation....(I don't even know where to begin with this).....Three.....nothing...we just let it run its course.....BUT all this is depending on the complete body bone scan. If there is any more new hot spots....we will not be treating anything. We know this tumor is resistant to radiation (since he was getting radiation to the area) but Ray still isn't a great candidate for chemo.....WHEW....I tell you....we both just wanted to crawl under a palm tree in the Caribbean and forget life for awhile! So the only thing for sure that I know to tell you is that....we are not making a definite decision till after the bone scan...we call on Monday to set that up.....Ok....I am an emotional wreck again to typing this...Please continue to pray for Ray, the girls, me and our Dr's. So we may be guiding to know the right paths. Love to you all!

Radiation Graduation!!!!

WHEW I think I am finally getting this blog and our family blog caught up!!! Well as you can tell from the title.....Ray had his LAST radiation treatment!!! I am amazed at this...sometimes it felt like we had be going forever...and now that it is over...its like WOW were did those 6 weeks go....or that's right...radiation and PT! :o) We made some great friends through radiation. Some we only met and knew by face or type of cancer and treatment. Others we became dear friends with....and the staff became the vital part of each treatment for Ray...without their laughter and love he would not have made it! So for his last day we checked the girls out of school and took them with us....we took some donuts...(some of Ray's fav's) and went and celebrated! Afterwards we even treated ourselves to Olive Garden.....(we really had to get creative on the finances for that trip!) But it was worth it! Ray has had an incredibly hard road and this is another small success that must be appreciated, honored, and most of all gratitude to Heavenly Father for this blessing! Ray is still struggling with PT. We have found out that most likely he is capped out at what his function on the foot is....we will continue with PT to try and help with the still ever persistent edema. Our PT talked to Dr. Scott and it looks like Ray will be in the boot and on crutches for another 2 months (at the very least) so we are concerned with the end of FMLA coming up and the possible side effects from that. Please continue to pray for us.....We love you all!!

Ray's LAST "walk" from the treatment room! Wahoo!

Everything is better with a donut involved!

The girls eating their dessert before Olive Garden....life is even better when dessert comes first!

Ray and Courtney ringing the bell together!

Ray's certificate......WAY TO GO honey! I am so proud of you!
Some of the wonderful staff! Kimberlee, January, Natalie...we missed Carolann that day :o(