Dr. T took lots of lab work and I see him in a few weeks.  He referred me to a neurologist, whom I won’t see until October 22nd.  Dr. T was hoping I’d be able to get into the neurologist before I saw him next, but not the case. 

I went ahead and made an appointment with my former urologist, who is very good and knows my history.  I’m just having him check me out to see what he thinks.  See, in 1997 I had a kidney stone.  The doctor I initially went to poked a hole in my ureter & punctured my kidney.  Then he let me lay there for 5 hours with poison and dye all loose in my body.  He messed me up royally, but Dr. F saved my kidney and my life.  He knows my history and he’s good.  I’d went to the KU urologists recently just because my doctor was affiliated with KU and I was trying to stay within that umbrella.  Not any more.

I still have that sore spot to the right of my belly button.  I still have a swollen stomach and it’s more to the right.  Is it all gas?  Who knows.  I wonder if I’ll have to still see a GI doctor or have another colonoscopy/endoscopy done. I had one in January 2008 and everything was fine.  But I’ve got swelling since then, so I don’t know. 

I just wonder if my entire problem is neurological.  There has to be a way to get through this and on top of these symptoms and sensations.

I requested my medical records from the old Cancer Center and Hospital.  I’m having them fax some things to the doctor and mail all to me.  One said she’d get the records in the mail tomorrow, so they should get here by the end of the week. 

I’m still very bloated.  Nothing is really coming out.  I’ve taken Maalox.  I’ve eaten.  I’ve taken some of that concoction that is a natural laxative.  Nothing.  My abdomen is all swollen and hard. 

I haven’t urinated much at all today.  It seems I do mostly late at night and through the night, and maybe in the morning a little.  I am not going to worry too much yet unless I don’t urinate at all before midnight tonight.  My body clock might just be weird.  I haven’t drank that much water today, so I’m trying to drink some now.  I should have drank more water today.  I did drink two glasses of milk today, though.  And, probably not so good, but I had lots of coffee this morning. 

We’ll see.  No one can figure out what’s going on, so I guess until I pop, I just will have to deal with it. 

My legs and feet are way more tingly numb feeling.  There’s definitely pressure somewhere.  I can’t figure out whether this is something neurological, in the spinal cord, OR if this swelling is pushing on a nerve and causing the numbness.  Don’t have a clue. 

Just par for the course with the doctors from “that Hospital.”  I’ll avoid naming names.  I have to self-catheter, so there’s these companies that sell those catheters.  They work with Medicare and your doctor and with an prescription and information from the doctor (urologist), you can get the catheters mailed to your house monthly.  They can not get this nurse to give them the information they need to start sending me the catheters.  The guy from 180Medical (the catheter company) talked to the nurse, told her what he needed, she promised she’d send it, and she has not. That was over a week ago, maybe over 2 week ago.  There was a representative from his company in the hospital today and he was supposed to talk to her.  We’ll see. 

The doctors and nurses associated with that hospital just leave a lot to be desired. When I was in the hospital for those two weeks, I thought they were great “in” the hospital.  And, I think they really were.  But the doctors and nurses, whose offices are also in the hospital, are just not adequate.  Period.  Then, looking back at the doctors in the hospital, I’m a bit frustrated when I think of how they focused on just that one spot that has disappeared now.  I do feel they overlooked other symptoms I kept trying to describe.

But then, regardining that spot “disappearing,” I’m a bit confused about that.  I wonder if the nurse worded it correctly.  Did it “disappear” - the “spot” or is it the “swelling” that’s disappeared?  I’m just confused. 

Hopefully it’ll all be sorted out in the future. This new doctor has his hands full.  I dread in a way what I’ll have to go through to figure out what is causing this numbness. Will it be more MRI’s and more tests?  Probably.  It seems like all that I’ve gone through so far has been a waste.  I guess even if I have to go through more repeated tests, IF they can come up with an answer, it will be OK. 

But, the bright side is that I have a new doctor who is closer to home.  That is something to be thankful for.

The ER was great, listened, and thorough.  Of course, I tried to just focus on the issue at hand: my swollen abdomen, the pain and pressure it was causing, and feeling short of breath.  My blood pressure was 201/128 (or 112) I can’t recall, but think it was 128.  It was off the wall.  We got it down to 143/90 something..or something like that.  I’m in that much discomfort that it affect my BP.

They gave me a CT Scan.  I drank some nasty Crystal Light stuff with the dye, had to wait an hour, then had the CT Scan.  There did not inject the contrast dye because with Multiple Myeloma and I think Lymphoma, they dye does something with protein in your kidneys and shuts your kidneys down.  But they said with the CT Scan without the contrast, that they’d still see if there was anything in there, whether in my liver, ovaries, whatever.

Ends up, I’m FULL of gas.  The doctor said if you poked a pin in me I’d probably spin all around the room like a popped baloon.  Funny.  He said I didn’t have any poop in there.  So, no obstruction. 

This is the exact opposite results that I got the other day from my doctor’s office.  They said I didn’t have gas but that I had poop just sitting all through my bowel. 

The ER doctor told me that he thinks I’m making my own problem by taking the Senna (8), Colace (2) every day plus then taking Miralax.  Well that is the instructions Dr. D gave me.  I guess her instructions are wrong. 

So, I’m stoppinng the Senna.  Maybe can take a softener, like Dulcolax every day, but to go natural.  This doctor said if I feel like I need to do something, like if I’m not going, to just get one of the Fleets phosphates — or whatever they are that has that salty little bit of stuff you have to swallow.  It gets you going in a few hours.  He said the stuff I’m doing takes 3 days and gets me in trouble  At least he had some answers and ideas.  Plus, his advise is opposite from what my oncologist gave me.

My next plan of action is this:

1. Tomorrow I’m checking on an oncologist I know of that specialized in MM, near here, and goes to Centerpoint Hospital.  The ER doctor spoke highly of him and his partner and also said that they act like your PCP.  That’s what I really need with this type of condition.  I need to check if this oncologist’s office accepts my insurance plus will he take on a new patient.  Oh I hope so.  It will be such a disappointment if this part falls through.  I’m so through with my current oncologist. 
2. If I get an appointment with the new oncologist, I can then cancel my other appointments with Dr. D and the GI appointments she’d made. 

I’m so ready to make this change now. I just pray it all works out.  One way or the other, I’m changing doctors though.  Once I get on with the new oncologist, I’ll have to have help with my neurological problems.  Maybe some type of therapy.  I’m not sure what we’ll do in that area.  That “spot” has disappeared, so for now I don’t know what there is to do. 

I need to consider urology given I have to self-catheter.  I have a really good urologist I used to go to.  I just need to set up an appointment with him so that he knows where I stand now.  It’ll be heaven seeing him versus the unprofessional doctors I saw before. He’s good, thorough, and very professional. 

Then, once I get all this settled down, maybe I can just rest and enjoy life a bit more.  I’m still horribly uncomfortable.  That pressure has not gone away, though I’m less fixated on it now that I feel comfortable that adequate tests were done on it and no obstruction shows.  I think the way the GI doctor did not even touch my stomach made me have doubts how thorough he was checking me.  He only ordered an ultrasound after the insistance of my niece and sister.  There’s results from the ultrasound that may require further testing, but I’ll let my new oncologist decide if we just lay low for a while or what. 

It’s going to be a little bit of a rough ride in the next few months getting this organized, but in the end, I think things will be more manageable.  If I do get the doctors I’m hoping for, my appointments will be close to home and if I ever have to go to the hospital, the hospital is close, clean, and every room is a private room!  Can’t beat that!

I have pressure, whether I eat or not, whether I doodoo or not.  When I eat anything, then the pressure definitely increases.  But the pressure is always there, just intensity increases. 

Today I managed to accomplish some things in the right direction I think.  I have an appointment with my PCP next Tuesday at 11:00AM.  My sister doesn’t know it yet, and I hope she’s available.  She’s out and about today, but I will be talking to her tonight. 

I’ve asked my oncologist office and the GI doctor office to send all their results to Dr. P’s office by Monday.  It sounded like they might get it over there today.  I have a call in at the urologist’s office to get my records sent to both Dr. P. and to Dr. F, a previous urologist who took care of me. 

Hopefully Dr. P will be able to provide some immediate direction next Tuesday.  I just need to practice describing my symptoms.  It’s so hard since I have so many things going on with so many symptoms at the same time.  It’s difficult for me describing it and for the doctor receiving it.  I need to prepare like never before for this appointment with Dr. P next Tuesday, if I expect her to help me. 

This is a lot of responsibility for a sick girl, but once I get through this, I’ll feel like I’ve accomplished something grand!

The results of the ultrasound I had last Thursday, just before my doctor appointment, where Dr. D acted like a jerk are:

1. mild hepatomegaly with mild diffuse fatty infiltration of the liver
2. surgically absent gallbladder (I could have told them that)
3. prominent extrahepatic biliary ductal dilatation

I don’t know what all that means. I know I have what is called  a ‘fatty liver.’  Anyway, Dr. has passed on lots of information to another GI doctor.  Well, actually to two doctors.  I will see two doctors.  They’re in the same office as the other Gi doctor, Dr. A, I saw.  I’d told Marilyn that he wasn’t very thorough so they’re sending me to these doctors.  I’d been planning on going to my PCP doctor and going to a GI doctor she referred, but since I’ve come this far and we’re trying two new doctors, I’ll try this.  However, I am making changes going forward yet.  It’d just be too much starting over at this point.  Apparently Dr. D has realized that there is something going on worth checking out.  My stomach is swollen and I think whatever it is, it is what is putting the pressure in my private parts. 

Then, I had an MRI done Monday.  That spot at my T8 has disappeared!  There is scar tissue.  Marilyn is going to look for me a “spinal rehab” place close to where I live.  She said something about them helping me build up my muscle so that I don’t lose any more muscle.  I’m to remain on steroids for a while longer.  Next appointment with Dr. D is 10/2.  The appointment with the new GI doctors isn’t until 10/6.  I sort of hate waiting that long, but if I start all over with my PCP, have to find a new GI doctor, go through more tests, etc., then it would probably be longer than 10/6.

I’ve been trying to research doctors in the area for Multiple Myeloma.  I just need an hematology/oncology doctor.  I was discouraged yesterday finding out that the St. Lukes Health group are dropping UHC February 2009.  I’m on Medicare with UHC as my secondary.  I need that secondary, as chemo and such gets very expensive and I need something to pick up what Medicare does not.

So, I will just get through this stomach swelling thing for now.  I will work with the Spinal Rehab group and possibly look into getting one of those Hoveround wheelchairs, but I don’t want to depend on a wheelchair too much.  I’m just too weak and unsteady to rely on walking to far, even with a walker.

I’m canceling my future appointments with the neurologist, urologist, and other GI doctor.  In the meantime I’m going to verify the urologist I used years ago when another urologist injured my ureter/kidney, that he accepts Medicare and UHC.  If so, I’ll have the yucky urologists from KU transfer what tests and records they have for me to my Dr. F.  Then sometime in the near future I’ll check up with Dr. F.  It might be good to get this GI thing situated before I see Dr. F. anyway.  I think whatever is going on is pressing down on my bladder.  If I get it fixed, it may resolve my having to self-catheter. 

Gosh my body is jacked up.

So, my cancer is laying low for now.  I need to get these things squared away as best I can before it (the cancer) may rear its ugly head, if ever.

I need to get a handle on my spinal problems.  That’s tough, but others do it.  I will, too.

I just wish I knew what this pressure is in my stomach.  I feel like I’ve been screaming about it for a while, but no one is listening.  That original GI doctor goofed.  I hate to say this, but I think part of the problem is cultural.  He’s Indian.  He has a hard time looking me in the face, as it’s not acceptable for men to look directly into a woman’s face.  He never lay a hand on me my first appointment, checking out whether he felt anything odd in my stomach.  I was complaining about feeling bloated!   Then my sis and niece came along the second visit and they asked lots of questions and kept going on how tough a time I was having.  He basically said I should be thankful for what I have, get used to it.  To appease some questions Alisa kept asking, he had me lay down and pressed on my stomach some and didn’t feel anything. 

My stomach is as if I’m 7-9 months pregnant and sticks out more to the right side.  He did order the ultrasound that provided the results above.  I haven’t had the followup with him since the test, but he muffed it since he pootered around in the first place.

For now I will stick with Dr. D. while I get the stomach thing identified, if possible.  And also, I’m biding my time while I research for another good doctor that my insurance covers.  I need to make this move wisely. 

It is scary to get too sick, especially with something so rare as Multiple Myeloma.  Then the side effects from all the medicine and treatment just leads to so many complications.  Of course, for any MMr’s out there, I am a fluke.   Not everyone has this much trouble.  I have not met one other who has the same problems as I have.  

Also, I look forward to moving into a one-level duplex with easy upkeep as soon as feasible.  That will be wonderful.  God is handling it: the timing of selling my home and land plus the opening of a duplex or retirement place.  It will all work out in God’s timing and I think it will be fascinating to see how it all falls perfectly into place. 

I have old dogs whom I’m sure are on their last phase.  It sounds like I’m wishing them to die.  I’m not really.  I mean, I do hope they die a peaceful death and I hope it’s before I move so that I don’t have to uproot them.  Buddy (lab) doesn’t feel good.  You can see it.  He’s not to the point you’d put him down, though.  And, who knows, there are duplexes for sale.  Perhaps my place will sell and I’ll even be able to buy a duplex.  Then I can just take old Buddy with me and fence the yard.  Like I said, God is handling it.  He loves his creatures and he’ll make sure they’re OK. 

After I saw how nice she could be when I was hospitalized and even during a few other office visits, I had a change of heart about her and actually claimed I was glad I stuck it out with her.  Well, I’ve changed my mind.

I won’t go into the ordeal which has made me change my mind about her again, not so much because I don’t want to, but because I just don’t understand what her problem was that caused her to act so defensively, rudely, and unprofessionally.  Doris and Alisa (sis and niece) were with me, thank the Lord, so I now have witnesses, and smart witnesses at that.  Alisa is a nurse, so she not only is medically adept, but she is well aware of how a doctor should or should not treat a patient, no matter what.  Let me just say, they both lost respect for Dr. Deauna plus came real close to telling her off during the visit.  By the end of the visit, Dr. D had settled down and was OK, but the damage was done. 

Alisa just moved back here from Colorado.  She begins her new nursing job at a hospital in Independence.  She still knows some doctors from when she used to work here.  She’s going to look around for me plus I’m going to re-investigate for some doctors around here who specialize in MM.  That is the difficulty, there’s just not a lot of options when you have MM. 

I know of one doctor who is in an office not so far away.  I recall not liking the hospitals he works out of, but maybe he now works out of the one my niece will be working at.  I can only hope.  Either way, I’m changing doctors as soon as possible.  We’ll set up a consultation.  Hopefully I can have both Doris and Alisa and maybe even my other sis with me during the consultation.  They’re all my main caregivers and supporters.  Gosh I’m lucky to have two wonderful sisters and a very loving niece.  I am so blessed. 

I have come to the point where I would rather have a doctor who is caring and compassionate and whom I can at least have a decent conversation with without feeling so vulnerable.  Maybe my new doctor won’t be as much an expert in MM, but maybe so.  Just because Dr. D is supposed to be so good doesn’t mean she’s applying her talents so well.  I would rather be treated nicely on my way out of here.  I want to be physically comfortable, so I just want a doctor who will address my physical issues so that I don’t suffer. 

Right now I’m not getting any of that kind of support.  Dr. D has ordered lots of tests, don’t get me wrong, but it’s taking too long and she’s just not listening.  She’s just too busy.  Maybe she just has too many patients and so her ugly side shows.  Whatever.  Not my  problem.  

It’s sort of confusing what is going on with me.  My MM markers are low and don’t really show evidence that my MM is being active, but there are other signs that could be the MM.  My liver is acting up, it’s enlarged.  My potassium is low.  I’m anemic and there’s one more thing, I can’t recall.  None of the medications I’m on makes me anemic.  It’s like the MM could be messing with something.  Who knows.  Alisa and Dr. D discussed this and Alisa was able to translate it to me better.  So, I just don’t know what is going on with me.  My liver might not be a big deal, but I just don’t know.  I will call the nurse Monday and ask her if I need to be concerned with the results of the ultrasound and blood tests. 

I still have to look around me so that I can be thankful for what I do have or do not have.  I went to a “purse party” at my niece’s today.  A young mother I know, Kristyal, was there.  She has a little girl about 6 years old plus a 1 year old baby boy.  She just found out her daughter has a tumor behind her eye, in front of her brain.  It’s benign but uncurable.  They’ll eventually have to either do chemo or radiation, as it’s pushing against her brain.  For the rest of her life, the little girl will have to have MRI’s every 3 months!  Now, do I have it bad or does that little 6 year old have it bad—or her mom and dad?   

Then, I am miserable feeling with this nerve damage. I can not express the pain and discomfort that nerve damage causes.  Nerves are maddening little evil things.  Just think how it feels when your foot is asleep and has ll those little tingles.  They are powerful and hateful little things aren’t they?  My toes and feet hurt so bad.  When I walk it’s like I have a hard cord under my foot.  My toes, each one, hurts and feels like it’s touching the one next to it.  My calves hurt and feel hard and yucky and my legs are just stiff.  I can hardly bend at the ankles.  Oh, I can just go on and on.  Well Alisa and I had been talking about things I can do to help with my digestion and bowel movements.  I was told to google “spinal cord injury at the T8.”  I came upon a young mother who had a 5 month old son.  She had some hereditary thing where she suddenly lost feeling and use from the T8 down.  It showed her in therapy, on her hands and knees, trying to crawl.  Oh my goodness, it was very sad!  But she had a wonderful attitude.  They talked about her positive attitude and she talked about how pleased she was with all of her progress.  I haven’t tried to get down to see how I can crawl, because I’m afraid I might not be able to get back up, but, I would wager I can crawl better than her.  And guess what?  I don’t have a 5 month old baby.  I was able to hold my babies and walk around with them.  I was able to jog with my boys as they got older. 

I think once I get a decent doctor whom relates better with me, my attitude will improve immensely.  My MM is what it is, whether it’s aggressive or not.  It’s going to get me or it’s not.  I’ll do the best I can, but in the meantime, I first want to be as comfortable physically as I can, and then right next to that in importance it will be wonderful to work with a doctor with manners.  If I’m going to die with this disease, then let it be with comfort and manners rather than discomfort and rudeness. 

It may take a few months or so to iron all this out, but I will be changing doctors and it feels like the right thing to do.  Gosh I’m glad I have good family support.  My heart just aches for all those who do not have the caregivers that I have.  I am so blessed. 

My sis and neice from Colorado have moved back here permanently.  So now I have two sisters and a neice able to help me go to doctor appointments.  That is a wonderful feeling.  I don’t know what I’d do without my family.  I would not have made it.  Really.  I just would not have made it.  When I first got sick and up until the past few weeks, most support came from my sis here, J.  She’s seen me through more emergency room visits and those initial many, many doctor appointments and treatments.  In the past few weeks my other sis and neice are starting to make up for lost time.  I have had doctor appointments or something of the sort nearly every day for the last few weeks.

I’ve also had some episodes with very unprofessional care from a nurse and a few doctors.  I’ve reported the nurse to her manager.  It appears they’ve had trouble with her before, but quite honestly, I have doubts she’ll be corrected.  I hate to say she should be fired, but she really should.  She does not belong in a nursing job what-so-ever.  She faked taking my blood pressure.  I told the doctor and he told me ‘it really was not a big deal.’  How very disappointing and shocking that there are these types of people caring for ill people.  The other doctor I was referred to has other issues.  My sister met him and was totally unimpressed.  Needless to say, we’re not impressed with the urology department at KU Hospital. 

It is tough to get sick.  Doctors and nurses are not all we used to build them up to be.  When you have MM, you just don’t have a lot of options.  There are not many doctors who specialize in MM, and if you want good care, you have to do that.  My doctor, Dr. Deauna, is quite good, though she has a quirky bedside manner. But she is good and I do think she cares for her patients.  She’s just very busy and intense..and then there’s a bit of a cultural challenge.  She only works out of KU Hospital, which I do believe is very good, but I sort of have to stick with KU doctors when she sends me out for tests. That way it’s all in their system and she not only has ready access to it, but she has it in their system as far as consistency in the format and quality of the report…whether it be an xray, MRI, whatever. 

It’s just tough getting sick when you don’t have good doctors or facilities.  What do you do? 

Much of the many appointments I had in the last few weeks are fallout from my May two-week hospital stay.  Somehow it turned into seeing GI doctor, urologist, neurologist, and nuerosurgeon.  However, I found an error I made throughout all of this, though not really my fault.  I followed instructions from the neurologist, assuming she was in touch with my oncologist.  I assumed this because she works through the same main hospital plus that she was one of the doctors listed for followup after my hospital stay.  I assumed Dr. Deauna was kept in that loop. 

Recall my last entry I indicated how Dr. Hammond ordered another LP (my 3rd since May) and she said that she felt the spot in my back was the cancer and not a ’stroke in my spinal cord.’  She did say that to me!  Yesterday at my oncologist appointment with Dr. Deauna, Dr. D. called Dr. Hammond on the phone and now Dr. Hammond thinks it’s no longer the cancer, but perhaps the stroke version.  Sheesh.  Dr. Hammond put me back on a low dose of steroids plus on Baclofen (for leg muscle spasms).  Dr. Deauna was not happy about me being back on steroids because they work with the cancer, but your body gets immune to it if you’re on it when you don’t need to be.  Dr. Deauna said she would have recommended an MRI to first see if there was any change in that spot first.  I’m having an MRI this Monday, per Dr. D’s orders. For the time being I’ll stay on the steroids.  I wonder if there’s no change in the MRI whether she’ll let me get back off of the steroids?  I hope so in a way.  I hate those evil pills.

My MM is still low and within reasonable markers, not requiring treatment.  If there is any good news, I guess that is it. 

I am feeling horrible fullness and bloatiness in my abdomen.  It gets hard sometimes.  Dr. Deauna had my abdomen xrayed.  It didn’t show any impaction, but it showed my bowels are interspersed with poo.  With my spinal cord damage, I guess my bowels don’t push the stuff down.  Let me tell you, that is one uncomfortable feeling, especially when your nerves are all weirded up and you feel every little thing.  It’s absolute torture!  Anyhoo, Dr. Deauna prescribed me some liquid sweet stuff that will move the “stuff” through my bowel. 

Earlier yesterday I had an ultrasound of my abdomen.  My nurse neice, Alisa, went in.  She noticed they focused on my liver alot.  I had the results faxed to me today.  I’ll have to tell my neice what they say to see what she says.  They describe some enlargement of the liver.  I don’t know what it is or why.  I don’t know what my doctor thinks of it.  I will call the nurse Monday and ask what it means.  I’m tender on the right side, which coincides with the liver.  I think the liver being swollen is somewhat what is making me uncomfortable. 

Dr. Deauna is changing my pain medicine.  I’m now on Fentenyl patches.  I can’t afford it, so they gave me a voucher giving it to me at no cost.  I am hoping I can do this through to the end of the year.  Next year I’ll have to change my Medicare D coverage so that once I hit the donut hole, I at least still am covered on generics.  Right now once I hit the donut hole, I have to pay 100% of my medications.  I think that will happen by November, maybe earlier.  Gosh our healthcare is atrocious.  It really is. 

Dr. Deauna changed my pain medicine due to my inability to eliminate urine at all on my own.  I’m having to catheter 100% of the time.  Most pain medications do that as well as constipate you.  I didn’t have problems on the Oxycodone.  Oxycodone is generic for Oxycontin.  My pharmacy told me that the FDA was pulling back Oxycodone.  So, when I was fearful not able to get the generic, as I could not afford the Oxycontin, I changed to Morphine Sulfate.  Morphine Sulfate is horrible for making it difficult to impossible for people to urinate.  So, the suspect is that perhaps the Morphine Sulfate is part of my problem urinating.  I don’t know.  If my bowels aren’t working so well, I’m thinking my bladder is the nerve thing, too, and not the Morphine Sulfate, but we’ll see. 

So far Dr. Deauna is leaving me on the Baclofen, but she may take me off it in the future and increase the Lyrica. 

So here I am, with the MM in check enough that I do not require treatment, but I’m having all sorts of problems due to the affects of treatments and medicines. 

This spinal cord thing, then, is back to square one: probably a stroke in the spinal cord at the T8 as a result of the radiation, MM, and regular aging.  It’s just a very small spot, I’m told, but it is a very critical spot. 

I have my home up for sale, plus a plot of land.  Once something gives and I can afford it, I will move into the first available one-level duplex in town.  It will be wonderful to be near other people and in an easier place to get around.  I have my eye on this one area that is for seniors.  I would be so happy there.  I went ahead and put my name on the list, just in case. 

As frustrating as all this is, I continue to see others who have it way worse than I do, as I go in and out of the hospital.  I’ve been doing some research and have seen where there are people who have gotten spinal cord injuries was more severe than what I have and it’s occurred when they were in their 20’s or 30’s.  I read one lady got an injury when her baby was 5 months old.  I watched a video as she was trying to just crawl on her hands and knees during therapy.  I would imagine she’s got to deal with bodily function things.  I just need to figure out how paraplegics do it.  Others do it; so will I. 

Also, this is disgusting, but I must take 3 samples of poo and put it on these little cards.  It will check if there’s any blood in my stool.  I guess it’s not always visible to the eye. 

Dr. H, the neurologist, called me today.  She told me nearly point blank that she feels the trouble with my back is the cancer, maybe plasmacytoma’s in my spinal chord.  She really doesn’t think it’s damage from the radiation and as I said, she is not going along with the “stroke in my spinal chord” diagnosis. 

So, she is ordered another LP (lumbar puncture).  The two I had in the hospital back in May did not produce anything.  I didn’t think to ask her if there’s anything different they’re doing during this test.  They are doing some contrast thing I think.  Oh well. 

Am I making it too simple to wonder if it is Plasmacytomas and I’m put on chemo treatment that I may gain feeling back and maybe walk better and not have to self-catheter?  I guess I won’t expect too much, but I can only hope that there may be some improvements.  Sometimes I feel like my legs just are not going to work.  I’m OK driving, it’s just walking.  It must be the muscles or nerves in the hip area; I notice I swing my legs out from the hip-like to walk.  I say that I walk sort of like Herman Munster, but he rocks side-ways doesn’t he?  Hmmm, who do I walk like?  I still think I walk like HM. 

The GI doctor will see me again in about 3-4 weeks.  I see a urologist next week.  I’m not sure what he’ll do.  This is a different urologist specialist than the one I saw before. 

I have felt better the last few days and I’m not sure why.  I’m really sleepy. I shouldn’t be up like I am now. I need to get to bed early and then MAKE myself get up at least by 9:00AM.  I should turn the lights out no later than 10:00PM but 8:00PM or  9:00PM would be even better.  I keep saying this, but I also keep flubbing up and getting off schedule.  Like tonight.

I paid my bills tonight and I need time to unwind after that.  Today I did get much done, though. I stayed in my PJ’s and in bed until I think 3:00PM.  Once up, I swept the house, swifter-scrubbed the bathroom, kitchen, and front entry, several loads of laundry, sorted through a pile of clothes,  organized hangers, went through 2 drawers of socks, hosed off and scrubbed a little the porch, put bird feed out, and I think that’s about it.  That is pretty good for me.  OH…did the dishwasher and emptied it, too. 

Dr. H. believes my back is either cancer or delayed damage from the radiation.  The radiologists from the other hospital who performed the radiation believe that my radiation was not that strong to cause damage. 

The neurosurgeon, Dr. P., had said that they are diagnosing me by process of elimination, so I won’t be surprised if we go back to square one and it goes back to being called a stroke in my spinal chord. 

Dr. H. recommended another LP (lumbar puncture) to check for cancer cells in my spinal fluid.  None appeared in the two LP’s I had in the hospital. 

Dr. H. prescribed me baclofen for my leg spasms  They really hurt when they do that.  She is ramping me up on this medicine.  I’m on Lyrica and I’m thinking I may need to increase it to get more comfort.  My feet are so uncomfortable. 

I see Dr. H. again in three weeks. 

Next week I see the GI doctor.  The following week I see the urologist who specializes in female urology, the next week I have the follow-up with Dr. H,  then the following week I have lab work done, then the following week I see Dr. D (onc).  Anything can be added to this schedule, depending on how each appointment goes. 

So far I take 4 Senna pills in the morning, and 4 Senna pills in the evening.  I take 1 Colace in the morning and 1 Colace in the evening.  I typically drink one to two cups of Senna tea a day.  Today was my fourth day in a row of taking Miralax.  I still plan to make that recipe of figs/prunes/raisins, brown sugar, lemon juice, and Senna Tea. 

I believe the GI doctor may be able to tell me more, I hope so anyway, but I suspect my issue is more than constipation from the medication.  It  is that, but it is also an issue of paralysis or whatever you want to call it where I’m numb and my organs just are not functioning at 100% capacity.  There are ways around it, though.  It’s easy to get caught up into what I can no longer do.  When I find myself in that state of mind, I’ve begun to immediately think of poor people, especially the young ones, who’ve become paralzyed from even the neck down  There are ways around these things. 

I’m having a very difficult time walking, but I manage.  I joke that I walk like Herman Munster now.  I do, too.  I have to sort of swing each leg out and around to move.  Tonight I pulled my shoes out of my closet.  I hate having to give up my cutesy little summer heels and I hate to give up my boots and barn shoes, but I will enjoy the additional space I’ll have in my closet.  I found some $8 rubber shoes at Walmart that work great for me.  I now have them in bright pink, black, and tan.   

I have been having some strange sensations.  True I’m more aware of sensations now, but these are definite sensations that are different than before I was sick.  I’ve had a few “pain rushes” through my spine and my arms today and similar sensations prior days.  I just know what that sensation is.  Well, I don’t know what it is, but I know it’s something I had when I first came ill with myeloma.  I wonder if it’s little myeloma cells rushing through my body.  That sounds crazy, I know, but how can it rush through my body. 

Oh well, stay tuned.  I still was able to run some errands today plus take Scottie (Sheltie) to the vet.  His eye was draining.  We think it’s allergies….I’m thinking it is more..but we’ll see.