Our medical soap opera continues...

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KathyC

Guest
For those of you following my DH's medical problems here the latest: saw the oncologist/hematologist last Fri. He had DH's entire chart right out of our internist's office for 5 days before our visit & had studied it thoroughly; he also consulted with other specialists & radiologists. He spent approx 45 min with us going over EVERYTHING. He said he had to agree with our internist that by all accounts it looked like prostate cancer that had spread to the spine but he said we had 2 excellent biopsies done & that he was clear of cancer on both counts. Said he does not want to get our hopes up but although this looks like cancer somewhere in his body, he doe NOT think it is cancer. However, he has not ruled out some form of lymphoma & if it is lymphoma it is stage 4 & there is nothing they can do except keep Mike comfortable. They are also looking for some kind of immune disease, weird infection or even some kind of fungus. This dr described the areas on his spine as lesions & also told us that the 1 spot he had on his lungs in mid Aug has now become numerous spots (this showed up by accident on the last CT of the abdomen where it caught the lower part of the lungs). Had numerous lab tests Fri afternoon that were sent to Mayo Clinic & also had a brain scan. Has set us up with a neurologist but can't get in til Nov 28th as the 1 dr he wants us to see is out of town; says this guy is the best in the area & doesn't want us to get started with anyone else. In the mean time we have a Pet Scan this Thurs; our insurance will not pay for it but dr learned that a radiology group here just got a pet scan machine & this wk only are doing trial runs by giving "free" scans to those in real need. We do have to pay $250 of our own money to cover the cost of whatever it is that goes thru the IV but we jumped at the chance as this test is supposed to show if you have cancer ANYWHERE in your body. If we can totally eliminate the cancer factor perhaps we can focus on the immune/infection aspect. He said this is truly a Sherlock Holmes mystery but assured us he will get to the bottom of it as something is taking over the lymph nodes, spine, & now the lungs. Has 2 more repeat CT scans scheduled to see how much this stuff has spread in the past 6 wks & has scheduled a bone density test. With Mike's mobility problems am relieved to see them focusing on the spine; he says the neurologist will help us find out about the "short circuiting" of the nerves along the spine. Back to this oncologist Nov 19th but will be sooner if something shows up on the pet scan or any of the other tests. As if this isn't bad enough, Mike suffered a major gout attack last Wed; foot was horribly swollen & he was in excruciating pain. Never had gout before but dr is sure that is what it was & the meds he gave him worked right away. After all of this Mike still wanted to go to Branson; we finished at the hospital at 5:30 Fri afternoon & hit the road & made it half way before stopping for the night. Didn't do that much but it was so nice to get away. We were ALMOST able to pretend for a couple of days that he wasn't really sick. Had a long drive back yesterday but with the changing of the seasons it was a beautiful drive from Mo to IL. And so folks this is where things stand for now; soap opers to be continued at a later date.
 
S

ShipMaven

Guest
Kathy - I don't know where you live, but have you and DH visited the desert Southwest (Arizona, New Mexico, West Texas, San Fernando Valley of California - Sonoran Desert) or the Ohio River Valley? When you mentioned fungus, a light bulb went off.

There is an illness one can contract in these areas - even driving through or a quick visit - called Valley Fever - coccidioidomycosis, aka "cocci" (pronounced (cox-see). It can emulate cancer in many ways...and patients have been known to be treated for cancer for a year or more, only to find out it's cocci. The range of symptoms for Valley Fever can be from extremely mild to very severe. The real experts in this disease are mainly in the Southwest, specifically lung/respiratory specialists.

Only a thought, since your doctors don't seem to be able to come up with a definitive diagnosis. But I really think it's worth mentioning to your doctors.
 
R

reggae

Guest
I feel so bad for you and your husband. The "not-knowing" is so difficult. It seems like you are doing everything possible, so you just have to put your trust in these doctors to figure it out.

I am praying that you get some answers soon, and praying for some good news to come through.....God bless.
 
N

nieciez

Guest
Thanks for the update Kathy. I still have you both in my prayers. I am glad you were able to get away and enjoy some quality time together...that has to be a big help since you are both under so much stress. Hang tough.
 
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TexasSue

Guest
Keep us informed please as you are in my daily prayers. Keep hope in your mind an heart as it seems there might be light at the end of the tunnel for you with hopefully good news.
 
K

korinalacount

Guest
Kathy you are in my thoughts daily,I keep looking for more news,keep up the good fight,more prayers winging your way!
 
C

Corky

Guest
Well, although not clear answers yet, at least the doctors are ruling things out. That is a step. Sometimes it takes many steps to get to the root of an illness. You both continue to be in our thoughts. =hug
 
K

KathyC

Guest
We live in NW Illinois & have never been to the southwest area. Our most recent trips in the past 2 1/2 yrs have been a cruise that took us to Key West, Costa Maya, & Grand Cayman; we also went to Niagara Falls & prior to that we went to see Graceland in Memphis, TN. I feel like maybe we might be getting somewhere with this oncologist but then sometimes I feel like nobody knows what they're talking about. Hoping that the Pet Scan tells us something & can point us in the right direction.
 
G

GloBug

Guest
This can be the scariest part, not knowing, and waiting through it all for a final diagnosis. Please keep us informed, you continue to be in my prayers.
 
C

conniecat

Guest
Sorrry you have to go through this. It is so frustrating waiting for a diagnosis. Hope they give you one soon, and it is a good one. hugs. cc
 
M

maw

Guest
Thanks for reporting Cathy so sorrythat they still do not have a diagnosis. Sounds like you have a very concentious Dr. working on this though. Good thoughts going your way.
 
P

popcorn

Guest
Thanks for the update. Are you, as a caregiver, taking good care of yourself? My thoughts and prayers are with you.

Liz
 
D

Donna - dsw

Guest
Thanks for the update - sounds like this doctor is on the right track or at least trying.

Please know that we are all here for you - please keep us posted.

Good Luck!
 
E

elliottsmama

Guest
WOW~
At least with Elliott, we know what is going on. Not knowing is way beyond horrid. Do you live in Illinois? So do I. I hope they get to the bottom of this. Sounds scary but you are doing all you can do and they will figure it out. Good luck and thanks for the updates. Perhaps you might start a caringbridge page? It is free and you don't have to be a kid to have one.
 
S

ShipMaven

Guest
[quote KathyC]We live in NW Illinois & have never been to the southwest area. Our most recent trips in the past 2 1/2 yrs have been a cruise that took us to Key West, Costa Maya, & Grand Cayman; we also went to Niagara Falls & prior to that we went to see Graceland in Memphis, TN. I feel like maybe we might be getting somewhere with this oncologist but then sometimes I feel like nobody knows what they're talking about. Hoping that the Pet Scan tells us something & can point us in the right direction.[/quote]

Kathy - it was just a thought given the dilemma of trying to find answers.

Be assured of my continuing prayers.
 
B

BostonsJ

Guest
Very Scary Kathy to still be in the dark about a diagnosis Kathy. Prayers continue for you and your husband.
 
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JacquieP

Guest
What a nightmare! The waiting is so hard for everyone, doctors and patients alike. Lots of prayers and good thoughts are headed your way.
 
J

JANPEP

Guest
Thanks for the update. So sorry that you still don't have an answer.
Continued prayers & good wishes are on the way from MN. for both you & yor husband.
 
C

Cruise cutie

Guest
Our prayers continue for you both.. glad you got to Branson, and may it all be resolved soon, thanks for keeping us updated Kathy..hugs.:daisy...Joanne
 
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herb

Guest
Haven't posted much but have been following along. May you both find comfort in each other as well as family and friends as you deal with this situation. Prayers to you..
 
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