Cindy’s Multiple Myeloma Blog

I saw Dr. M yesterday. Remember the days I had the female oncologist who was so rude? I’m so glad I changed doctors. Dr. M is so kind. My numbers are back to where they were in August 2009. My numbers had just lowered on their own since then, so although they’ve gone in the wrong direction, they’re still not too bad. We’ll just watch them. I return in 3 months for lab work. Dr. M ordered complete xrays since it’s been a while since I’ve had them. He said we’ll just check to make sure there’s no small lesions. I’m not worried.

I did tell Dr. M that if my numbers change to where I need treatment, that I was not sure what I could stand. Since treatment usually comes with some kind of side effects, I just am not sure what I can cope with along with the pain I feel with this spinal cord damage. I told him that I may consider just letting it go and keeping me comfortable. He understand how I feel, wanting more quality of life. But for me, it’s more about “physical pain.” I just can’t take any more pain, discomfort, or inability to get around. If I wasn’t dealing with the spinal cord damage, heck, I’d be more into this.

Dr. M told me about his bil who injured his spine and required a catheter. He began getting infections which required hospitalizations. I guess his bil finally got fed up and the last infection just decided to not fight it anymore. They kept him comfortable and he died. Wow! Dr. M said he was horrified at first because, well, he’s a doctor and they fight for us to live! At least they’re supposed to. But Dr. M understands it. I just told Dr. M to promise to keep me comfortable. He said he would, that they’re good at that now days. This all sounds so morbid, but it really wasn’t. We were even cracking jokes. Somehow it was a much more light-hearted yet good conversation yesterday, yet writing it down now sounds morbid and horrible.

Oh well. I just know that I’m doing fine. And when I do start to progress, I may try treatment, but if it hurts or causes me more pain then Dr. M can help and keep me comfortable. It’s not so bad.

We’re so lucky with what they can do now, whether it be treatment, healing, or just being comfortable.

I didn’t go to bible study today because I didn’t feel like getting out in the cold and I was feeling too lazy to get out and around. I don’t know if I regret being lazy or not.

A book that has helped me lately is Don Piper’s Heaven Is Real. Don Piper is the minister who was killed in a head-on collision with a Mac-truck. He spent 90 minutes in Heaven before he returned, painfully alive.

At first it [Heaven is Real book] was somewhat of a slow-read for me. Then beginning at about Chapter 16 of the 27 chapters, the book began speaking volumes to me. Don was 38 years old when he was hurt. He’d been pronounced dead at the scene and was already covered up. His body was mangled. Another minister who came by the accident after it happened convinced police and ambulance personnel to allow him to pray over Don’s dead body. The minister did not know Don personally, if I recall, but they had just left the same convention. After prayer and then the minister began singing, Don started showing signs of life. The minister had a very difficult time convincing the EMT’s that Don was alive. It’s been a while since I read the book [90 Minutes in Heaven], so I may not be describing this scene quite accurately, but you get the idea. So, though he is alive today, he lives in great pain. He lost so many of his physical abilities. He dealt with a long and painful rehabilitation. He misses the things he was not able to do with his sons and daughters, like play football with his sons. But he talks of how one must accept his or her new normal to move forward. Don directly addresses how to survive and perhaps thrive, or at least how he does. Make no mistake, it will always be a battle. But it is doable, with God’s help.

I believe I will reread this book. I found hope and encouragement in hearing another person express the pain they must deal with every single day. I found myself hearing my own thoughts when reading some of his thoughts, feelings, and experiences.

So, I need attitude to get along. Sometimes I have so much hope that I begin to think there will be a day on this earth that I will no longer feel this pain. I might not think that right out in the open, but it is there in my subconscious. While one should never lose hope, it can be dangerous to let unrealistic thoughts become expectations. Sneaky little thoughts like ‘one day I’ll be jogging again, and I will get my figure back, and I will be able to go to the bathroom normally, and my feet won’t burn anymore and….and…and…’

Sometimes I can be so full of cheer and spirit that others are so impressed with my positive attitude. Often I am faking that cheer, but gosh, don’t we all have to do that at times? Otherwise, we’d all be such gloomy and miserable people and who would want to be around us? I don’t like being around chronic whiners. I have always believed that if you think positive that you can make positive and vice versa. I still think that.

And do not misunderstand me. I do have times where I am content and reasonably happy with life as it is for me. But something is still missing in my heart of hearts, and I know this. And this is OK, because I’m working it out. I’m just “blogging” my process I guess. I think what is missing is perhaps a more consistency in my coping skills? Maybe that is it. Sometimes I think I’ve got it. I start to set goals even and look forward. I even think that at times, “ya, I can manage this. It’s not so bad.” Then sometimes I’m fixated on this feeling of burning and stretching in my insides down in my private area and the burning in my feet and the weakness and heaviness in my legs…and oohhhhh woe is little ole me!

I often wonder about those people who really are cheerful in the midst of great trauma and pain. They do exist and they are not fakes like I am at times. One good example I think of is this really cute young man. I think he’s from Australia. He’s got one of those sexy accents anyway. He was born without arms or legs. He’s got a little flap for a foot (it appears from a distance). His dad is a minister, so he was raised with an awareness of God. It was difficult on him, make no mistake. But somewhere along the way he was reading Scripture. It was in John 9, I think, when he read that God let the blind man come about so that ‘God’s works might be displayed in him.’ This spoke to this young man and he realized his purpose. He travels all over the world witnessing now. He said that he does not wish himself any other way now. He also says that he’s not always up-and-cheery everyday, either.  Still, I find him far worse off than me, yet he has such a beautiful and happy spirit.

The difference with him might be that he was born that way, you say?  Well, there are other great people who have experienced things later in life.  There’s that lady with “Tada” in her name?? I can’t think of her right now.  I believe she was a professional skier?  She had some great future ahead of her anyway and then she got paralyzed from the shoulders down.  AFTER that happened she met a wonderful and handsome man and married.  She is famous and speaks of God and her faith all over the world.  She’s written books!!  There’s many people with stories such as hers!

So, what about me?  I have not near the issues as some of these people.  At least I didn’t experience this spinal cord damage until in my 50’s.  I enjoyed having babies, horses, jogging, dancing, and many things for some time before this happened. 

I handled having a terminal cancer far better than this spinal cord damage.  I think because I have faith in Jesus that while I didn’t/don’t like the idea of leaving my boys and their families so early in life, that I know we’ll all meet in Heaven with perfect bodies some day.  So with that faith, it was easier for me to accept. 

But now that I’m in this wonderful remission, I can’t take advantage of it the way “I” want to do it.  Maybe that is key. Maybe it’s not “my way” that is important.  Maybe it’s how “God has plans for me” that is what is important.

I didn’t say what I intended after my last visit with my oncologist. My MM markers are doing fine. My M-spike actually decreased. I just keep healing myself it seems

I did mention I keep asking Dr. M about whether he’s had a patient with my same experience (spinal cord damage from radiation) until he gives me the answer I want. That is, I am wanting someone with my same experience. That would mean I want him to say “yes” which would mean someone else would have spinal cord damage. Maybe I don’t want Dr. M to ever say the answer I want to hear because that would be wishing ill on someone else. I certainly do not want anyone else experiencing this.

The good news, then, for fellow MMr’s, evidently this is very rare…this spinal cord damage from radiation (on the lesion in my spinal cord.) So do not fear this damage, though do your research before any treatment.

I’m still very sleepy, though I don’t feel in the daze like I used to. It is very tiring with my hips and legs not cooperating. It takes all I have to move around. Maybe that’s enough to tire anyone out. I still look forward to improvements, though. I think it’s going to take some time and therapy. It’s better already. So, this is not glum news.

Son, his wife, and 8 month old baby boy are coming up for Thanksgiving. I’m excited. My son and his wife here are also excited to see them. I love seeing the boys together, laughing. This time it will be extra fun because one boy is 8 months old and the other one is 21 months old. They will be so funny together.

My boys were 20 months apart. Once the youngest can walk and start talking, they will be playmates.

Needless to say,I’m very excited to see the kids. I can’t wait to kiss my grandsons big baby cheeks. He’s a sweet heart.

It’s funny how things turn out. When I was first diagnosed with MM 10/05, one son was single, and the other son wasn’t talking about having a family yet. I recall the first nights after I was told I had a terminal cancer, I thought how I would never see my grandchild. And if I did see a grandchild, I assumed I would not see him or her to 5 years old!! At that time we’d read about life spans being 3 to 5 years, but for my age and health, I would probably be 5 to 8 years going.

I never gave up or planned on dying, but it made it more challenging to fight when I began feeling this uncooperation in my legs. I recall walking for exercise up to the point I could no longer walk without a cane.

I plan on revigorating my attitude. I look forward to see what my Rehab doctor prescribes. The medicine in my pump needs to be increased, as my legs still get stiff and I’ve had leg spasms when trying to sleep. (I’m going to have to get the term for this liquid medicine. It’s Baclofen, but a different term is used for what I’m getting now.) I expect Dr. P (Rehab dr.) will prescribe Therapy. I will ask what sort of realistic expectations I should have, comparing how my legs function now and what I can hope for.

One time my sister commented how I should be enjoying this spread of having my Myeloma in check and it not fair having the partial paralysis problems with my legs. Well, she’s right in a sense, but then, I can’t help but think there’s a greater plan for me, even with these darned old legs, hips, and body functions that no longer work normally.

I think it’s up to me now. I know I’ve said this before, but it is true. I have so much to be thankful for. So do you, most likely.

I just read today where a boy in Germany was thought to be in a vegetated state for the past 23 years after a near-fatal car accident. At 46 years old, doctors discovered his brain is functioning normally. It was said he was ’screaming but no noise would come out.’ Yuck. I’m happy they now know he is aware. I think he will write a book on his experience.

I’d rather be me than he, right now.

I found a Rehabilitation Doctor out south here.  Actually in Overland Park in the same building my urologist is in on Mondays.  I believe he works out of St. Joseph Hospital, which is good, as I really like that hospital.  I’ve only seen Dr. P twice.  I like him.  He’s very nice and right now that is very important to me.  I’m still haunted by Dr. D’s rudeness and the other doctors’ aloofness, judgmentalness, and egotisticalness (if those last two words are words even, but you get my point).  My new oncologist is full of himself, quite honestly, and he’s known for that, but he seems semi-kind anyway.  Dr. D was just overwhelmed and way too busy for her own good.

Dr. P appears to be quite knowledgeable and he’s very very nice.  He’s taking time to get to know me and working on one thing at a time.  Right now we’re working on getting my bowel movements in order.  They’re not in order yet.  He has me doing 3 things the same time every day in order to retrain my body into having BM’s on its own.  (Isn’t this a nice topic? Answer: No.  But, this blog is supposed to be honest and hopefully help others if they find themselves having any similar issues.)  OK.

So, every day at the same time I’m supposed to insert one Ducalex suppository, take fiber, plus stool softeners.  Then I adjust things as needed.  It’s been over 2 weeks and still my body is not working right.  I can not express how uncomfortable it is not to eliminate properly.  It’s not only uncomfortable, but it’s quite scary at times. 

There’s been a few times where I’ve tried something to help me along, like Phillip’s Milk of Magnesia or Bisacoydl pills.  The day I tried the pills was awful.  I don’t know if it was just a coincidence that I had a migraine or if the pills and my issue combined caused the headache and abdominal pressure, but I thought I was dying, seriously. I thought I was going to pop.  It was the day before Thanksgiving and I knew everyone was preparing for the day, so I didn’t want to mess up anyone’s holiday.  I just figured if I popped, I popped and maybe someone would find me! Ha! That sounds funny now, but I truly was quite frightened.  I called my son about 9:30pm the night before and asked him to check on me the next morning.  I prayed as I tried to go to sleep.  God answered somewhere in the middle of the night.  The pressure I’d felt all day and into the night worked themselves out somehow.

Then the Milk of Magnesia. I tried it last Saturday night.  I was having issues Sunday early morning.  Both times I’ve had to cancel out or delay previously made plans.  It’s so upsetting to be in this condition.  I am beginning to wonder if I should even ever make  plans, as I have had to cancel them.  I don’t want to give up and I “try” to get out and live and do things, but I most often have to cancel.  Sometimes I wonder if I’ll ever get this part of me resolved.

I see Dr. P sometime in January.  He’s going to do that EMG test, but I think only on my upper body.  I do have numbness and little electric shocks occurring in my arms and hands, so he’s checking that out.  I have to wonder still what is going on in my lower half.  While I like Dr. P and think he’s good, he is not a neurologist.  I believe that I’ll have to go through more MRI’s and testing in the future to assess what is going on.  I’ve been through so much testing already and there was so much commotion with the “bad doctors” and now I’ve changed doctors, that it’s just time to rest for a while. 

I have a feeling I will be changing oncologists again in the future.  I was not aware that the hospital my current oncologist works out of may not have the experts in all the other areas I have issues going on (e.g. neurological, urological).  If I’m sick and then need help in those other areas, well, this hospital doesn’t have the same caliber of doctors.  St. Joseph does.  if I get sick, I’m going to go to St. Joseph.  At that time maybe I would just change oncologists then.  My very first oncologist works out of St. Joseph. 

This changing doctors in midstream of this spinal issue has been difficult. 

Oh, good news in early December.  My “numbers” are good and actually a bit lower than the measurements in October.  That is good.  My main issue is the spinal cord damage.  I need to learn how to survive.  And, I think my dilemma is 1) I haven’t had a good doctor to really summarize in totality what is wrong with my spinal cord.  I think it’s more than just the T8 and 2)transition of changing doctors–oncologist wants to handle only cancer issues so I’m on my own to get the other resolved. 

Usually cancer patients are just dealing with their cancer.  I’m dealing with my cancer plus my spinal cord issue.  This spinal cord issue happens to be very life altering. 

I feel like such a hassle to my family.  I am a hassle.  But I plan for things to improve in the near future.  Once I get things settled as far as moving in completely here and moving things out of my old home completely (things are still there) and also once I close on the sell of some land, AND once spring comes and the weather is not so bad, THEN things will be easier to get on top of. 

Great news about one of my Arabs.  The people I gave my Arabs to called to inform me they sold the mare to a wonderful lady who was looking for a horse that fit Mazey perfectly.  I’ve been in contact with this individual and Mazey could not be in a better home.  Her new owner spells her name “Mazzie,” so “Mazzie” she will be from now on.  Her new owner is also going to think of a new name for her when the new name comes to mind.  This lady sounds absolutely wonderful and keeps journals on her horses.  We’ll be in contact. 

So, my 3 dogs and Mazzie are in better homes than they were in even when I had them.  I couldn’t ask for more for my beloved pets.  I had to have a little cry about this today, but that’s OK..the tears were selfish tears for me, but happy tears for my pets. 

I plan on things to improve.  I’m going to think in that direction.  I have challenges right now, that is true. but I still have so very much to be thankful for.

I moved into my new home November 1st, Saturday.  It’s really nice, nice to have no steps and newer and cleaner.  In ways I miss my old home, probably more so because of my pets.  A friend actually stepped up and took my three outside dogs.  She’s giving them a wonderful home and they are better off than they’ve been in a long time, perhaps ever.  I still miss them and feel horrible giving them up in the last years of their lives. 

I’m still settling in and I’m still trying to decide where I will go for Spinal Cord Rehabilitation.  I need pain management (medicine), bowel function help, and physical therapy for balance and walking.  I think I need something called an “EMG” where they assess which nerves are not functioning.  I can go to KU rehabilitation which seems to have it all in one place and pretty complete, but I’m trying to stay away from there, as it’s so far away.  There is a nurse that works there who is awesome.  She’s the one who sent me the packet of information and I hear she’s helped a lot of people with spinal cord injuries. 

It’s been stressful trying to find any other places.  I wish I had someone close to bounce things off regarding where to go, but not so.  I have great family and friends, but they’re not that closely involved in these kinds of matters.  Oh, this is when you wish you had either a good hubby or a devoted daughter.  They’re usually the people that assists an old lady like me in these things.

Anyhoo, I may just have to suck it up and go to KU.  It wouldn’t be forever, though the doctor would be someone I would see semi-regularly.  I need someone qualified to help in the pain management.  Also, I can’t walk without a cane and preferrably a walker, so it would be nice to have someone assess my potential…realistically. 

I’m gettinng there.   I have some things to shore up regarding the move and other financial items.  This will take time.  I have decisions to make and things to do..slowly and hopefully surely. 

Next oncologist appointment is December 2nd.

The good news is that I am able to go to the new doctor, as he accepts my insurance and he’s accepting new patients.  I see him next Monday at 1:40pm.  His office is so much closer and in a nice area, so that will be just great.  I hope he turns out to be very good and nice.  Anything will be better than Dr. D.

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.

I spoke to the two nurses today, Cindy & Marilyn. They were for Dr. D. whom I no longer like.  They were nice today though I felt they sided with Dr. D earlier and were exasperated.  Whatever.  Here’s the deal.

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. 

You may recall I’d addressed Dr. D, my oncologist a while ago.  I didn’t like her.  We just don’t communicate very well.  Actually, she doesn’t communicate well with lots of patients, it’s a weakness of hers.  She is smart.  She is good as far as not wanting to overtreat.  I do think she truly cares for her patients.  However, she doesn’t listen as thoroughly as I think she could.  She is abrupt.  She’s overworked and too busy.  Not my problem. 

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. 

I’ve been waiting to have some kind of definitive answer as to what is going on with me before writing here.  Then, I’ve either been busy or too tired to blog.  But here I am, willing to give some sort of update. 

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. 

I’m doing quite well with the self-cathetering.  Several nurses and others told me that it wasn’t all that bad.  I suppose it’s more common than I knew, but how common, I still do not know.  I had my catheter prescription filled at the medical equipment place (you don’t do it at places like CVS).  They put a size on the prescription, (e.g. 14FR), but I didn’t see any specification for male or female.  The place that filled it gave me the male tubes and told me that most people like them.  The only  difference is the length of the tube.  I’m sure glad I have the male’s tubes!!  It makes it much easier to aim.  It’s impossible to aim with the female tube.  So, I’ll continue with the male catheters, that is for sure. 

I’ve blamed my stomach bloating on the steroids, but I definitely have something going on in my stomach.  It could be a number of things I guess.  My oncologist have me going to a GI doctor.  My appointment is not until 7/29/08.  I hope I last that long.  I’m real low on iron and anemic, and am losing blood somewhere.  (Have I said all this before?)  My colonoscopy and endoscopy in January this year showed normal.  The capsule GI endoscopy malfunctioned.  I wonder if the capsule got stuck and is now causing an obstruction?  That was done on 2/25/08 and my symptoms did not occur until after 2/25/08.

Or, I can have a sluggish bowel.  I may have some kind of blockage.  I’m so uncomfortable.  I’m taking 4 to 8 Senna tablets, 2 Colace, 1-2 cups Senna tea every day.  The last few days I’ve been taking Miralax.  I can’t say it’s producing a lot right now.  We’ll see what the 3rd day in a row of Miralax does.  My stomach has softened a bit.

I talked to a very informative nurse at my eye doctors yesterday.   The other nurse and her informed me a lot about stomach issues as either their husbands, mothers, or themselves have had similar issues.  They were very helpful. 

Ahead of me I also am scheduled to see another urologist specialist; I believe one who specializes in individuals who cannot eliminate completely like me.  I have no idea if they would allow me to continue self-cathertering 3 times a day myself or whether they think it wiser to go another route.  When I had that last procedure done where the girl put a catheter in me and filled my bladder, she told me of a lady that has an opening in her bladder down in her stomach area somewhere.  She wears some bag that I guess her urine goes in.   I can’t imagine something like that, but who knows, it too may be in my future.  I’ve learned to keep my mind open to these possibilities. 

I’ve discovered that I have lived my life in some cocoon, never realizing all the many different things others have had to put their bodies through.  In a way I feel guilty and ashamed.  I was healthy and everyone in my little social circle were reasonably healthy, so I never was concerned much beyhond that.  Now I am finding out that many people, young to old, have encountered many health challenges and have had to become accustomed to ways of coping with their bodies in manners that I find difficult. 

But now I think I am experiencing nearly every demon I ever worried about!  I have a feeling that I’m going to experience some of these many different discoveries of science in order to simply function.  But, the good news of this is that these demons can be conquered.  They’re not such bad demons after all.  Much of it is in our minds, and oh ya, that famous never-ending term “our attitudes”.  I think I want to puke if I hear someone say “it’s all in your attitude” again.  So I will just say that sometimes we think  we can’t do something, but when we have to do it, we surprise ourselves quite nicely.