She did it!

Babygirl

I wrote a post for the blog earlier this week, it was a beautiful post.  It talked about the wonderful Christmas we had at my parents house, the great steak my dad cooked, how we spent the night there and then how Dustin developed a low grade temp on Christmas day so he and I were stuck at home while everyone else continued on with the festivities.  But the same thief stole my poptart in the photo above likes to jump on the desk and play sectary, she deleted my post!  Needless to say it hacked me off enough I am not going to re post that one!!

Just know we had a wonderful Christmas, Dustin is now fever free and babygirl is still up to her tricks!!

:-) Delana

Chemo Day

Today was chemo day... It was #4, or end of cycle 2. We saw the nurse practitioner this AM, all of his blood work was good. His white count was elevated but that is to be expected with the Neulasta injection. So off we went to the hospital for his Spidey juices. He found his favorite chair and we got settled. His nurse started his juice and every thing was going as usual... His first 2 are pushes that are done by the nurse, but the next one is "bleo" and it is ran by the IV pump and takes about an hour. Bleo has a habit of being hard on the lungs and u can have reactions to it. By the time the bleo was over Dustin said his chest "felt kinda tight". Well they put a stop on everything, and called his Dr. He then got. IV benadryl and IV solumedrol (steroids)... After that the chest "tightness" was better so he was able to get his last chemo med, they were going to hold it! The benadryl really kicked his butt, he was asleep and snoring in 20 minutes. I actually have a great picture of that but I don't know who would kill me first, him or my mother :-)

So here we are in our hotel in Tulsa. He is sleeping off and on and I hate to admit it I am watching Justin Beiber on TLC...I need to remember my book next time. We will go get his injection tomorrow afternoon, then we will be able to go home.

I apologize I am writing this on my phone, and there is no spell check, so be kind.

No Energy

This round of Spidey Juices has really been rough on him and kinda' kicked his butt.  He didn't throw-up or get too nauseous, but he has been really tired and hurting. The fatigue this round has been pretty bad. He will tell me he just hurts, his bones, his skin and of course his back.  He really hasn't left the house but maybe a few times these past 2 weeks, he just doesn't have the energy.  I don't know if it is cooties or spidey juices causing his pain this time, it could also be the Neulasta injection he received.  His last treatment didn't really bother him that much, so I am sad for him that this time was so hard on him, yet I am thankful it is not worse than it is.....it could be sooo much worse! He wasn't able to go to church yesterday or go the Christmas program last night, and I know he would have liked to, but he was in too much pain. Usually by now he is back to his spunky self, but unfortunately right now he is asleep in the recliner with Beanford standing watch over him.  Bean has been spending more time with him lately....Dust keeps asking Bean what is going on, the last time he spent this much time with him he was diagnosed with cooties!  Bean will get really close to Dustin and start smelling him, Bean will smell his face, neck, chest, arms, basically his whole body, Dust says it is a Beanford CAT scan.  It is strange.....he has been doing this for about a week.

We go back to Tulsa in 2 days for his next round of chemo...I wish he had more energy, but we have to do it :-) 

Dustin sleeping with the babies taking care of him.

**I know I only talk about Beanford, but we actually have 2 chihuahuas.  Bean is the one looking at the camera, Baby Girl is the darker one....she's crazy!  Bean is quiet and protective, Baby is playful and just crazy, there is not a day that goes by that we don't just shake our heads and laugh at her.  Where Bean is now (in the photo) is where you will find him, if Dustin is in the recliner.  He is protecting him.**

I hope everyone has a Merry Christmas.  We love you all!

:-) Delana

Spidey Juice #3

This last trip went pretty well.  Dustin's counts were up so they sent us on to the hospital for his treatment (spidey juice).  He was full of "piss and vinegar" and was basically running in the hospital.  Tell me who runs in to the hospital for chemo?  My husband that's who.......all morning he had me laughing so hard I was crying.....I finally told him to stop, because I didn't wear my waterproof mascara...of course that just made it worse. 

There were two sisters were seated next to us in the treatment room.  They were older and super sweet and friendly.  The sister receiving chemo had just been diagnosed with lung cooties and this was her first round of spidey juice, her sister that was sitting with her had survived cancer 3 times!  They were a hoot and had the same twisted sense of humor we do so we had a good time with them. It made the day go by alot faster. They also agree that it will forever be called cooties in their house :-)  She receives her treatments 3 days in row every 3 weeks, so we figured it out that we should see them again in 6 weeks, that is if both she and Dustin behave with their blood work.

After treatment we headed to our room, by then Dust was not so spunky (he gets 4 bags of spidey juice and by that 4th bag you can just see the color change on his face).  It only took us about 30 minutes to get to the hotel, check in and unload.  There was a Schlotzsky's in front of the hotel so I got him a turkey sandwich, and I was a happy girl, there was also a sushi house next to the hotel :-)  After we ate he went straight to bed. The room at this hotel was nice, however the "bed" was another story....Dust said he thought the floor was softer.  When you sat on the bed it didn't move it was sooo hard.  He did OK through out the night as long as he took his meds.....if he misses a dose that is when he gets into trouble. 

I thought we would be able to go to the hospital and get his Neulasta injection as soon as we got up, but no such luck.  It has to be given 20 hours after your treatment ends.  His didn't end until 4pm, so the soonest we can go is 1pm.  So we ate breakfast and went to the Bass Pro Shop and did a little Christmas shopping.  When we were able to go back to the hospital our two favorite sisters were there so we sat and talked to them for a while. 

It has now been 5 days since his spidey juices and 4 since the shot and he has done really good.  The shot can cause deep bone pain and he was worried about that.  He has had some bone pain, but nothing his meds can't handle (apparently some people have it so bad the meds don't touch it).  As long as he takes his nausea meds he does OK. He was able go to Logan's Christmas Concert on Sunday. He is not quite his spunky self, but I say give it until Wednesday and he should be there ;-)
 

:-) Delana

Too Many Things Went Wrong!!

We should have known Wednesday was going to be a bad day.  When we went to bed Tuesday night I already had a headache.  I had been taking my medication to try and stop it from being a full blown migraine, but at 2am I knew I was in trouble.  When the alarm went off at 430am I knew there was no way I was going to be able to drive Dustin to Tulsa for his Spidey Juices, so I called my dad and asked him if he would take him.  (Dustin and I could not do this without the support and help from my parents!) Before Dustin left I made sure he had his bag of goodies for his treatment.  He had his Jolly Ranchers, Lemon Heads, water bottle, Zofran, and Compazine.  I tried to give him is pain medicine but he kept telling me he didn't need it.  I told him 3-4 times to take it, but he wouldn't.  You see after he gets his Spidey Juices he doesn't have any pain, so he doesn't take his pain meds for about a week. I was in no mood to argue with him, so I went back to bed.

So Dustin and Pooh were off, they made their way to Tulsa.  They made the usually stop at McDonald's and had breakfast and then were at the Dr.'s office.  Dustin went to have his blood drawn and his port was accessed by the nurse, for some reason she told him, "If your counts are low and you can't have chemo today, your nurse can remove this".  Why did she that!!!!  He said she jinxed me!

A little history on one of Dr. M's nurses.....On Dustin's first visit to see Dr. M, his nurse told Dustin, "Good Luck", as she left the room.  Dustin and I just looked at each other.  We didn't know to laugh or cry.  On his second visit, as she left the room she said "God Bless".  Our mouths hit the floor.....Dustin looked at me and said, is that a good thing or a bad thing?
After that it became a joke to see what she would say at each visit.  She usually says "God Bless".  Well, Wednesday she was silent, no "God Bless", "Good Luck", " Have a Blessed Day", nothing!  Dustin said he knew he was in trouble then...too many things have gone wrong!

Dr. M came in to see him, he examined him and told him everything looked good.  He was just about to leave the room and he said "Oh, I forgot to look at your blood work".  This is when he informed Dust, "You will NOT be getting treatment today".  Dustin's neutrophils were 0.6, the lowest they can be and still do chemo is 1.5!  Dr. M kept asking him if he felt OK, which Dustin did, but he asked him so many times Dustin said he questioned himself....."Do I feel OK? I think I feel OK".  The nurse came in and removed the needle from his port, which apparently my dad would not watch, but Dustin kept trying to show him.

Now we have to go back next Wednesday for blood work and chemo and then Thursday he will get an injection to help boost his blood counts.  Once you start these injections you can not stop them, so now we have to decide if we are going to drive back home Wednesday and drive back to Tulsa Thursday or get a hotel.  I don't know if Dustin can handle the drive on Thursday, but I also know if our bank account can handle staying in Tulsa 2x a month!

So he and Pooh made the drive back home, and what happens.....he is in pain.....he doesn't have any pain meds...Why?.....because he wouldn't take them!  Needless to say he was one cranky person when he got home.  He took his meds and went straight to bed! 

Maybe next Wednesday will be better.

;-) Delana

It takes 19 days!!

It takes 19 days before Dustin goes bald after his first dose of Spidey Juices.  After his first dose we did notice his hair coming out, especially when he was in the shower.....it was just washing away!  It didn't look bad, he was just a little thinner on the top.  After his second treatment, it was really coming out.  If you ran your hands through his hair, you would have a handful of hair. He had a few bald spots on top, but he still had a lot of hair in the back and on the sides.  He was pulling it out on purpose, getting a fistful of hair and yelling at the boys, "Look what you are doing to me, you two are making my hair fall out!"  Of course they are convinced he his crazy.  We had heard about people complaining that their hair hurt during chemo.  I told Dust this was not something people usually complained about so it was news to me.  After the second dose he understood what they were talking about.  He says it feels like someone is pulling out your hair one by one and laying his head down on his pillow really hurts.  When he woke up yesterday he said there was so much hair on his pillow and on his side of the bed we needed to get the shop-vac out of storage.  He finally had had enough and decided yesterday to shave it off.  So while at my parents last night he gave his beard trimmer to the boys and told them to shave it off!!  At first they thought he was kidding, but once they knew he was serious the shaving began!  They had a blast with it.  They tried to give him a mohawk, but it was a little uneven.  Instead of being down the center it was over his right eye. 

When we were getting ready for bed last night, Dustin took his beanie off of his head, Beanford looked at him like "Who are you and what have you done to my daddy?"  Bean would not go to bed, he just sat there looking at Dust for about 5 minutes then he laid on him and just stared at him.  Usually Bean goes straight to bed and doesn't pay any attention to us, he just goes to bed, but he would not stop staring at Dustin.  Crazy dog! 

Enjoy some pictures from last night.

Bald spot on top.

Bald spot on top and in the back.

Logan starting :-)

Tyler getting his turn :-)

Trying to straighten the mohawk!

Mohawk is "a little" uneven.

Such a pretty bald head!

                                                       Logan starting to shave his head.

Everyone have a wonderful Thanksgiving!!

:-) Delana

Good Week

Dustin has had a really good week.  He finally got his appetite back after about 7 days. He has lost 15 lbs in the past 2 weeks!!   He is now trying to eat every thing he can in preparation for his next treatment this Thursday.  He had me make him chocolate chip cookies yesterday because he "only had 3 more days to eat them".  It is really good to see him eating again, but I know come Thursday that will all change. 

He says he can "feel" his lymph nodes shrinking.   His chest and other areas where we know his lymph nodes were the largest hurt.  This is a new pain for him to deal with, but he just takes it as a sign that the Spidey Juices are doing what they are supposed to do.  One side effect of chemo (Spidey Juices) is insomnia, so he now has a prescription for a sleeping pill....he took it for the first time last night.  He took it at 9:00 and I promise he was asleep by 9:05, it was too funny :-) 

Not much is going on...we are just getting ready for Thursday.

:-) Delana

Diet of Champions!

**I wrote this Monday November 7, 2011**
Today is Day 5 since Dustin has received his Spidey Juices, and he is starting to feel a little better.  It was rough for a few days but he is starting to get his strength back.  Sunday he felt good enough to go to church and we were able to join the church....that was something we have both wanted to do since we moved here but haven't been able because one of us has been sick.  It was a wonderful blessing yesterday for us to officially become part of the Lovings Baptist Church Family.  Actually this was just a formality as everyone there has prayed for us and loved us.... member or not.  Thank you, Lovings family for all your prayers and support :-)

Dustin's diet these past few days has been interesting to say the least!  We knew going into this that whatever he could and/or eat would be what he got.  It has consisted of water, chocolate pudding, oatmeal, Gatorade, Uncle Ben's Chicken and Rice and Popsicles.  But I  must break this down and explain it... he drinks a lot....I mean a lot of water (I am by no means complaining about that!), I bet he is drinking 1-2 gallons of water a day.  The water feels good in his mouth (his teeth, gums and tongue hurt) and when he is hungry but is also still sick to his stomach he knows water is "safe".  His breakfast is oatmeal.......no, no not a cup of oatmeal or a half-cup of oatmeal.....1-2 tablespoons of oatmeal, but it is something and that is all I care about.  The chocolate pudding is something that again feels good in his mouth, and the boys were making fun of him because he was "chewing" his pudding.  He still only eats a few bites at a time.  I am sure by the end of the week he will graduate to other foods.

:-) Delana

Day 3

Last night was the last home football game, and Dustin was feeling OK, he said he was just going to sleep and would call me if he needed me... so I went to watch Logan march in the band for the last time this year.  I started texting Dustin in the 2nd quarter just to make sure he was doing OK....but I was not getting a response, of course that was worrying me.  After half-time and into the 3rd quarter of the game I finally reached him and he said he didn't feel good...while he was on the phone with me he got sick.... he quickly hung up.  I left the game and raced home to care for him.  After dry heaving... because he really didn't have anything in his stomach, he spent the rest of the night plagued with diarrhea every hour or so.  Neither of us got much rest last night.  He is trying to stay hydrated with water and Gatorade and he was able to eat some chocolate pudding today.  Today he says his teeth, gums and mouth hurt and that water feels good in mouth so first thing tomorrow I'm off to Wal-Mart to buy Popsicles, he wouldn't let me go tonight or I would have.

He did go on a field trip this evening.  My aunt and uncle smoked a wild hog and we went to their house for dinner....we had a really good time visiting with family and friends.  Dustin hasn't been out of the house except for Dr appointments or my parents house (or the occasional gro. run with me) in a while so it was time for him to "air out".  He was able to stay out for about 2 hours, which was about an hour longer than I anticipated.

He should start to feel better tomorrow and should start to get his strength back and hopefully his smell won't be so strong.  Please continue to pray for us and our family.  Please pray for strength for Dustin as he is already questioning how he is going to manage this for 6-8 months.

:-) Delana

Day 2

Today is day 2 of the Hair Watch and day 2 since chemo.  Believe it or not he is loosing some of his hair already.  He was taking a shower this morning and I hear him screaming my name, I thought he fell or was bleeding, but to my surprise he just wanted to show me a hand full of hair.  So it won't be long and he will be as smooth as a babies bottom :)

So far the only bad side effect he is having from chemo is, his sense of smell is intensified so much that he can not stand any odors.  I had an air freshener in our bathroom that was a very light sent, but it made him sick, I had to take it outside and put it in the trash can.  Then when he went outside he was looking at me like I had done something horrible, he yelled "Do you smell that?"  At first I had no idea what he was talking about but then I remembered the air freshener in the trash can.  The Spidey Juices have given him Spidey Powers!!  He just could not stand the smell.  I made tea and it made him sick, just normal tea, not fu-fu tea...plain tea!  I will admit that when I made tuna salad that was completely my fault and I should have known better, of course it made him sick, lesson learned. He made Tyler eat it outside. We may never have tuna in this house again :( I have a picture of that. I am now trying to figure out what to cook that doesn't have a odor.  If anyone has any suggestions please let me know!!

:( Dr Pepper doesn't taste the same right now, he has a few sips yesterday and tried to drink one today, but he said the fizz just tastes funny. 

Tyler...banned to the back porch to make his tuna sandwich :(

Tyler eating his tuna sandwich...

Until tomorrow...
;-) Delana

First Chemo Treatment

We got to the Dr's office around 915 yesterday morning, needless to day Dustin was a little nervous regarding the unknown of his first chemo treatment.  After we saw the Dr (whom, I just love, Thanks again Uncle Jim!!!) and he told us his Echo and Pulmonary Function tests were normal, we made our way to St. John's hospital for the dreaded chemo. 

I don't know what he was more nervous about.....the actual chemo or the nurse accessing his port for the first time.  We made our way into the hospital prepared for the side effects of dry mouth, bad tastes and boredom.  We were equipped with jolly ranchers, peppermints, teddy grahams, his water bottle his I-Pod and I had 2 books.  We were told his treatment would take about 4 hours, and some of the medicine would cause immediate dry mouth and or a bad taste in his mouth, so eating hard candy would help, but not candy you really like because if you got sick you may not ever eat that candy again.  We got to his chair about 1100, by the time the nurse finished with his paperwork and ordered his meds it was 1200.  When she came to access his port, he was in bathroom and I warned her he was a little nervous about her accessing his "virgin" port, she was sweet and said she would be easy.  He was relieved to find out you can't even feel it when they access the port. 

Now came a waiting game....we had to wait on his meds to come from the pharmacy, they did not arrive until around 2.  He has 4 meds he has to take, his cocktail (or Spidey Jucies as he so named them yesterday) is abbreviated ABVD, this is the common cocktail for Hodgkin's Lymphoma.  Fortunately 2 of the meds only took 10 minutes, 1 takes 30 minutes and the other takes an hour, so it didn't take 4 hours for the meds, it only took about 2.

He did really good during the treatment, he ate his jolly ranchers and drank his water (no Dr. Pepper for him all day, he didn't want to chance getting sick on Dr. Pepper and never wanting it again....can you imagine!!).  He was fine until we started home, then he got really tired, and he took about an hour nap.  When we got home he went straight to bed, he said he just so tired.  He slept for a while then he got up coughing (one of the meds affects the lungs), but he was able to go back to bed.  Other than being tired, so far he is OK today, but we are told the bad day will be tomorrow, so we shall see.

This is Day 1 of the hair watch.....he still has a full head.....none has fallen out over night...lol

Waiting for Meds

Not the best pic, but I love his smile :-)

;-) Delana

Chemo Starts Tomorrow

First chemo is tomorrow.  We are to arrive at the oncologist office at 930 for blood work, then we head over to the hospital for his first chemo treatment.  His first few treatments will be at the hospital then he will graduate up to the treatment center at the office.

He has felt really good these past few days.  He still looks like he is about 6 months pregnant at times and his back and hip is still bothering him, but hopefully once the cooties is gone the pain will be gone.

His oncologist told him he would loose his hair, so today we went out and bought some beanies.  He is already thinning on top, so he wanted to be prepared!  This got us to thinking......How many days until Dustin looses his hair?  We are going to keep track......Kinda like the Owl with the Tootsie Roll Pop....How many licks to the center of a tootsie roll pop? 1...2...3!

 http://www.youtube.com/watch?v=Jhjb4P_jnKk

So enjoy the video and wish us luck tomorrow.

:-) Delana

Results are in!!!

We arrived at the oncologists office at 730 a.m. today, he had his blood work taken and we were in the room waiting on the Dr by 8 a.m.  I was thinking.....this is going to be a long morning, I bet the Dr isn't even here yet!  But, to my surprise, he came right in.  He didn't beat around bush or sugar coat it.....he just came right out and said, we have your diagnosis!  He laid the pathology report in front of us and showed it to us, it said  "Hodgkin's Lymphoma".  He told us this was a  treatable cancer (cooties) and if he had to have cancer (cooties) this is what he would want to have.

Dustin goes Friday for Pulmonary Function Tests, as his chemo cocktail can do a number on your lungs, so we need to get a baseline and make sure his lungs are healthy.  If the Echo from today and the PFT's from Friday are normal then Chemo starts Wednesday at 12, it will take 4 hours a session and he will go every 2 weeks for 6-8 months.

For the specifics he has Hodgkin's Lymphoma Stage 4 (above and below the diaphragm with bone involvement).  They were not able to give the subclass.

That is what we know for now, we are relieved to just start his treatment, and like Dustin has been saying, "Lets get this party started"!

:-) Delana

Bx Results

I called the Dr.'s office this morning to clarify where we are to go to have the Echo tomorrow, as I was talking to the nurse I explained to her that Dustin was really fatigued and  he is having a hard time staying awake.  He also complains his body and his skin hurts.  Soooo now we are to see the oncologist in the morning at 8 a.m., we are to have blood work at 730.  They really do love these early morning appointments.  So instead of waiting until next week for his biopsy results we will be get them in the morning.

We know there is cancer some where we are just looking for it, so what we are hoping for is... we go in tomorrow and he tells us, he found it and it is definitely lymphoma and treatable.  If the lymph node biopsy is normal, then we are still looking for the needle in the haystack.  Then the next step would be a pelvic bone and spine biopsy.  Those were the other places on the PET scan that "lit" up. 

So I know it sounds crazy, but please pray they found the cancer so we can start treatment, and Dustin can start feeling better. 

:-) Delana

Echo

The oncologists office called the other day, and they have scheduled Dustin for an Echo (sonogram of his heart) Wednesday at 10:15.  Before chemo starts we have to make sure his heart is in good shape.  Just to clarify, his oncologist says there is cancer (I don't like that word so we call it cooties in our house) somewhere we just have to find it.

Dustin has been doing OK after surgery.  He is still using his ice packs and still on his pain meds, but for the most part I think he is doing really well.  His incisions are healing with no problems.  He doesn't sleep too good, but he naps during the day.  We went to my parents yesterday for dinner and to "air" him out....lol, but I think it was too much for him.  I won't be taking him on any more field trips for a while.

He complains that his neck is stiff, which is to be expected and his port "moves" which bothers him.  I don't know much about the port, we will have to talk to his surgeon about that one.

Until next time.
:-)  Delana 

Pictures

We removed the bandage from the lymph node excision today.  Dustin asked me to post it here, I told him it was gross we didn't have to put it up here.  His exact words were "Most of your friends are in the medical field and my family is just morbid, they will all love it".  So courtesy of Dustin here you go......

Now that I look at the picture here it really doesn't look that bad.  His neck is swollen, but the incision looks really good.  I told him I was going to get him some "bolts" from the Halloween section at Wal-Mart and he could be Frankenstein.

I also thought I would post a picture of Bean doing what he does best!




Delana :-)

Surgery Update

Yesterday started out bright and early at 1:30 am when our alarm clock went off.  We left Heavener at 2:45am and went to my parents house to get my dad, he was our chauffeur (and a life safer!).  We left his house about 3:15 and arrived at the hospital at 5:30.  We were hoping his surgery would start at 9:00 or 9:30, but we later found out it was going to be more like 10:45.  After he got settled in his room and had all the blood work ran,and EKG it was time to sit and wait, and wait and wait.  At 9:30 the nurse informed us that our Dr was running behind and his surgery was going to start at 12 or 12:30, OH JOY!  I forgot to mention that Dustin had his first experience with a nurse missing his vein for the IV.  Now you must know that he has excellent veins, she must have just had a really bad day because she not only missed once but twice!  That really made his day!  So, at 12:28 they took him back for his surgery, and he was finished at 1:54.  I went back to the recovery room at 3, and he looked like crap.  I have a great picture of him, but my mom said she would kill me if showed up here or on facebook...lol.  He really was in a lot of pain after the procedure, but he had a great nurse that was pumping him with morphine, so he did finally get on top of the pain.  He was in recovery for a few hours and then we made the lovely 2 1/2 hour ride home.  I was afraid he would be in too much pain for the trip home, but the nurse made sure to dose him up with Oxycodone, so he was pretty happy and did really good. 

When I talked with his Dr, he said the port placement (or installation as Dustin calls it) went just fine, and he actually removed a cluster of lymph nodes as apposed to one large node.  As of now we go for results November 2, to his oncologist.

Last night was fun!  Ice packs are his friend, he has one on both sides of his chest on at all times.  The lymph node removal was one the left side and the port is on the right, so he has an ice pack on each side.  He was up ever 1 1/2 to 2 hours changing ice packs or asking for pain meds.  Then Logan was up at 3:30 because he has a Marching Band Competion today and he had to be at the school at 4:30!  It has been a very long night!!

Here is a pic of the port, this was taken today.

Busy day!

I am writing this as we drive back to Heavener from Tulsa. We had an appto this morning with the oncologist to review Dustin's PET scan and bone marrow biopsey from last week. His bone marrow biopsy was normal (YEAH!!!) but he lit up like a Christmas tree on PET scan... What that means is there is cancer somewhere we just have to find it. He has numerous lymph nodes and a spot on his pelvis and on his spine. His oncologist wants him to have a port placed and removal of a lymph node from his neck. He sent us to a surgeon... Whom we saw this afternoon... He did a sono of his neck...then scheduled him for surgery tomorrow morning!!! We have to be back at the hospital tomorrow morning at 530am!!! Yep that means leaving the house at 3am!!! Will update tomorrow.

:-) Delana

Waiting game.

Dustin had a PET scan and bone marrow biopsy last week.  He is adding "bone marrow biopsy" to his list of things he never wants to do again.  They gave him 2 Valium to take a few hours prior to the procedure, however they didn't take effect until an hour or so after the procedure.

We have an appointment Monday at 930, to review the results with the Dr.  I don't know what is worse for him, the procedures or waiting for the results.

;-) Delana

New Dr

We had an appointment this morning with another oncologist.  We chose to go to a Dr in Tulsa (he took care of my uncle).  Keep in mind Dustin nor I had ever been to Tulsa and we had to be there at 9am.  Dad came to the house at 545am to help with the boys and let us borrow the Blazer.  He programed OnStar with the address and away we went.  I had an idea of how to get to Tulsa, but I followed OnStar.  It took us around the world!  We went about 55 miles out of the way!  A 2 hour trip took us 3 hours! 

The Dr was great and confirmed my suspicions....They missed the lymph node on Dustin's needle biopsy.  He also agreed we did not need to wait 3 months and "see what happens", we needed to find answers now.

Dustin is to have a bone marrow biopsy and PET scan next week, we are going to try and schedule it for the same day if we can. Dustin will be 40 next week, what a birthday present!  Then we see him again in 2 weeks for results.

I'm glad we found this Dr (thanks Uncle Jim!), but we are back to square 1, we DO NOT have a negative lymph node biopsy.

We really do appreciate all the prayers and kind words!

;-) Delana

Another Appointment

We asked Dustin's PCP to fax his records to an oncologist in Tulsa, his nurse did that for us on Monday.  I received a call from them yesterday asking if we could be at his office at 9am this Friday.  (Duh...of course we can, what else do we have to do?)  So we will leave here in the morning around 6am to make the 9am appointment.

Not much has changed with him, he still has back pain, is still retaining fluid and is tired all the time.  He has started having "hot flashes", for a lack of a better term, he just starts sweating for no reason.

Hopefully this Dr will be better than the last one ;-)

:-) Delana

Confused

So, yes we did go Friday for biopsy results and yes the Dr. did give us some results, however we came out of that appointment more confused than when we went in!  What was biopsied came back "benign connective and adipose tissue."  For that we are greatful and excited, but there is question where they actually biopsed is a lymph node (they may have missed!).  The Dr. said for us to wait 3 months and recheck everything.  When I questioned him, he said " do not worry about it, we recheck in 3 months." 

OK, we will worry and this is not acceptable!  So we are going for a second opinion.  That is where we are at now.

:-) Delana

Biopsy Day

#5 on Dustin's "Never to do again list"
-Lymph Node Biopsy

I can now see where his list is going, and I told him by the time all of this is over we are going to be on number 1,000,000!  
The day didn't start off too bad, the boys had to get up when we left at 7am and then they had to be at home by themselves for a little while before going to school.  Nothing was broken when we got home, so Dust and I assume they didn't fight or argue :-) 
Dustin couldn't eat or drink after midnight last night. As many people know he lives on Dr Pepper, he goes to bed with one and wakes up with one.  So the eating was no problem, the drinking was another story!  We were to be at the hospital at 8 am, the procedure did not start until 1030, his last Dr Pepper was at 1130...that is 11 hours without his lovely Dr Pepper.....it actually might be a record for him....lol

They did a CT guided needle biopsy today.  They biopsied a lymph node next to his kidney.  He is convinced they actually sucked his entire kidney out... but they just took a very small piece of the lymph node.  He did well through the procedure.  It actually took longer to get his IV started than it did to perform the biopsy.  We see the oncologist Friday for preliminary results. Thanks for all the prayers and kind words.

;-) Delana

Why Beanford?

I've been asked about the title "Beanford's World", and what does it mean.  Bean, otherwise known as Beanford is our teacup chihuahua.  He is 3 years old and is my baby.  Dustin bought him for me when I was taking medicine that made me really sick.  Bean would lay with me and make me feel better.  We have noticed that Bean will be with whoever feels bad or is sick.  Normally, he has nothing to do with the boys, but if they are sick, he is curled up next to them trying to make them feel better.  For our family it does make us feel better with Beanie by our side, with his big brown eyes looking at you saying, "Don't worry, I'm here."

Beanford is my baby, but over the past few months we noticed he was spending an awful lot of time with Dustin.  Dustin even joked a few times, "Beanford, you know something I don't know?"  Who knows, maybe Beanie did know something. 

This is our Bean.  We joke that Dwight would have loved him because he is camouflage!  He is only 5 pounds so he really looks like a camouflage rat, but we love him.

:-) Delana

Biopsy Date

We heard from his oncologist yesterday.  He is scheduled for biopsies next Wednesday, 9-21-11.  It is scheduled to be outpatient. 

I didn't get much out of the nurse yesterday when she called.  All I know about the CT scan is there are "several" enlarged lymph nodes.  As Dustin said last night, "It is like they have a secret and won't tell you, but its not their secret to keep, it's mine!"

I going to try to keep him busy until next Wednesday.

:-) Delana

No more ER

We did finally get home from the ER the other night.  We waited in the waiting room for 6 hours!  During that time his leg swelling got worse and his shortness of breath did NOT get better!  He was only seen when he was because I went to the triage area 3 times and complained he was getting worse sitting there.  There was a gentleman sitting next to us that was there for chest pain, he had been there for 5 hours!  Needless to say they are in no rush at this ER.  I will probably have to sedate him to get him to go back. 

So we finally get back to a room and they start hooking him up to the EKG monitor and pulse ox with urgency.  Why rush now, we have been in the waiting room for 6 hours!!  While he is changing into the gown, he can see himself in a mirror and then he realizes why he can't breathe.....he is actually pregnant!!!  By now I am laughing so hard I am crying, he has so much fluid on him he looks pregnant.

Pregnant Dustin :-)

After more waiting we see the Dr... get Lasix and were supposed to be on our way... but the Dr forgot about us, thus forgot to write our discharge orders.  Sooo 2 hours after seeing the Dr we are finally released to go home.  We were there a total of 12 hours. 

We could not have survived without Ma bringing us Arby's at 10pm!

Dustin has started a list of things he doesn't want to do again:
-Get blood drawn buy certain phlebotomist
-Drink banana flavored barium
-Have IV and blood drawn from the same vein the same day
-Go to ER

I am sure this list will get longer :)

;-) Delana

Long Day

So we got up this morning thinking it was going to be a normal Monday, we got the boys off to school and then I started making some phone calls. First thing I wanted to do was call the Cancer Treatment of America in Tulsa and see about making Dust an appoinent. We didn't care the oncologist we saw last week! I found out they do take Medicare, however you have to live within 30 miles of their facility! I told them there were NO oncologists within 30 miles of us. There were 5 in Ft. Smith and that is 50 miles away. Any way he wouldn't see us, even if he would the next appt is 4 months away (That's after Christmas!). Back to square 1 on a Dr search.
Next I called his current Dr and left a message with the nurse that his legs were swelling. She called back and asked is to have a Doppler study done ( ultra sound of his legs to check for a blood clot). So off we go. Dustin really enjoyed having "KY Jelly" all over his legs! (OK it's really not KY, but I didn't correct him). We waited in the waiting room for 45 minutes for the tech to tell us if we could leave, I finally went to the receptionist to ask ( sorry I interrupted ur personal phone call!) They told us to go home and for US to call the Dr. I called them from the parking lot then headed home. As we walked in the front door our nurse called, Doppler was normal, great! By the way, nurse, Dustin is becoming short of breath. After conversation she sends us to the ER, in Ft. Smith! So back in the truck we go. Dustin is not happy! That is where we r sitting now, we have been here for 3 hours and have not seen a Dr yet... What fun.( I'm writing this on my IPhone so be kind)

And the fun begins!

Dustin was up this morning at 4am (which isn't unusual for him lately), I was up at 5am.  We had to be at the oncology office at 8am, which meant we had to leave the house at 6:45.  Pooh (my dad) came to make sure the boys were up and ready for school.  We got to the Dr. office and after 15 pages of paper work they sent Dust to get blood work, then back up stairs to wait for our appointment.  I should point out that my wonderful husband lacks the skill of patience.  He hates waiting for anything, however I was very proud of him today.  After almost 2 hours of waiting in the waiting room we were called back to see the Dr.  We were told to tell what type of lymphoma he has we need to have a CT scan and they can do it now.  So we go over to the clinic and he was given the wonderful barium "smoothie" to drink.  He choose banana flavor, not my top choice, but I didn't have to drink it!  He had 2 bottles to drink, he drank the first bottle, no problem, the second bottle was another story.  After the CT scan we came home.  Now we wait for the nurse to call, she will tell us the results of the CT and when the biopsy is scheduled.

Tonight is Logans first time to march, we are all going to watch him, he is so excited. 

;-) Delana

I wanted to start this blog as a journal for me and also to keep family and friends up to date on what is  going on in our world.  As most of you know Dustin started having back pain about 6-9 months ago.  It started before we moved to Oklahoma.  He went to his PCP in KC, had an X-ray which was "normal", then a few months later had an MRI which showed a bulging disc.  He went to a Pain Management Dr. in KC for a Steroid Injection to see if that would help with the pain.  He described the procedure like someone was "jamming a McDonald's straw in his back."  Needless to say it did not help.  We moved to Oklahoma and he started Physical Therapy and even agreed to give the Steroid injection one more try.  After his first day of Physical Therapy he felt pretty good.  He said they did some sort of message therapy with heat, then put him in some sort of contraption and gave him an "emergency panic button."  He said they stretched him a good 2-3 inches taller (they put him in traction).  After the second day of PT, we were not so lucky.  He was in a lot of pain and in bed the rest of the day, in fact this was a Wednesday and he did not get out of bed until Saturday morning when I took him to Urgent Care.  At Urgent Care we saw Dr. S who was great, he thought Dustin might have ruptured his disc and wanted to do another MRI.  He started him on steroids for any inflammation and sent us on our way.  Dustin felt a lot better on prednisone and the MRI was scheduled for the following Friday.  For the next 6 days he tolerated the pain as long as he took his pain medicine.  Friday morning we were at the clinic at 7am for the MRI.  That evening Dustin received a phone call from the Dr.'s office that they wanted him to come in to review his results with the Dr., they said he could come in now or in the morning.  I was 2 hours away with our youngest at a football game so we would have to go in in the morning.  We got up Saturday morning and was at the Dr.'s office at 9am.  They had his chart at the front desk waiting for us.  When Dr. R. came in he told us there had been significant changes on his MRI and it looked like Dustin had Lymphoma (cancer of the lymph system).  This was not was either of us expected.  I honestly thought they were going to say he had 2 or 3 ruptured discs, not cancer.  Dr. R gave us information on Lymphoma and information on Non Hodgkin's Lymphoma.  They had already made us an appt with an oncologist for the following Friday.  Dr. R said expect lots of blood work and a bone marrow biopsy.
We left the in a daze and both in tears.  That was 3 days ago.  The tears have dried but we are still in a daze.  We have 4 days until we see the oncologist, and it seems like 4 weeks or months.  I know we are in for a lesson on patience, but right now it really hard when all you want is answers.