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.