Cindy’s Multiple Myeloma Blog

Well, I told you this blog was intended to be more “medical” and about getting through these things, so sorry if this is TMI (too much information).  :) 

Yesterday I just felt like I had to do something.  Let me make sure my current situation is addressed:

I was diagnosed with Multiple Myeloma-IGG 10/05.  I was 60% cancer cells in my marrow.  I got a Strep B infection and that is how I first got sick and they discovered I had MM.  I went from jogging 3 miles in 33 minutes one morning to being flat on my back that night.  I have never been the same since 10/4/05.  Since then I have not walked or moved around like before.  My body has been either weak or sore since 10/4/05, which I still find strange.  I know other people with MM and they move about like normal and many still work.  I was told my MM is aggressive, so maybe that is the difference, I do not know.

Immediately upon my illness, I could not move my right arm/shoulder. They said I had plasmacytoma’s in my right shoulder, but that they are often hard to see when they’re in soft tissue.  I was put on Thalidomide/Dexamethasone initially.  This treatment seemed to fix my right arm/shoulder, thus within a month I could move my arm.  At first I held it close to my body. I could not move it hardly an inch to even wash under my arm. 

Then in 12/05, just a few months after first getting sick, my back hurt so bad that I nearly got crippled.  I almost could not get out of bed one day.  Xrays did not show anything, but due to my  pain and immobility, my doctor admitted me in mid-December.   MRI showed a lesion in my T-8.  I had 10 radiation treatments and that got rid of the lesion, but I then had compression.  I had kyphopasty and all seemed well.  (kyphoplasty is similar to vertebralplasty except they put a balloon in the place, squirt in the cement to replace the compression or height-loss, then I think they remove the balloon…but you’ve got that cement.) 

In April 2006 I had a SCT (stem cell transplant).  Unfortunately it did not produce any remission whatsoever.  My number more than doubled within 30 days of my SCT.  I was put on Revlimid/Dexamethasone from 8/06 through 10/07.  I responded very well to that treatment in that my numbers went way down to normal.  They just started to creep up when suddenly I just could not take either the Revlimid or the Dexamethasone.  In mid 2007 I did start having a more difficult time walking.  I think that I allowed my doctor office to have me see this Nurse Practitioner (Julie) too much and she did not listen to my symptoms very well.  Further, I think the doctors were somewhat careless in my treatment.  Once my numbers came down within normal range, they should have immediately stopped or lowered my treatment due to the side effects.  Julie ignored my complaints and acted like “that is just the way it is with steroids.”  Well, no it should not be that way.  I was losing ability to walk and I think it was/is “myopathy” from the Revlimid. 

I really didn’t feel all that numbness at the  time in my feet, but I was definitely starting to lose coordination and balance walking.  I even got a cane.  I think Revlimid can cause myopathy.  One day I had a URI and one of the doctors wanted to see me.  When he saw me walk he said “we need to get you off of the steroids…” blah blah blah.  Julie goofed me up I think.  Another thing is that I was seeing the BMT doctors.  They specialize in the transplants.  I don’t think they’re as good in maintenance. 

This office was also going through a merger.  It was initially the Kansas City Cancer Center-St. Lukes BMT where I was going.  They did my transplant.  In the middle of August 2007 they merged with Kansas University Cancer Center.  KU Cancer Center is awesome.  So I have been transferred to Dr. Delva Deauna, who specializes more in maintenance, etc.  I transferred to her officially 1/17/08.  She is busy, abrupt and I initially did not think I liked her.  I have changed my mind.  She is adamant in not over-drugging and  treating you.  She explains how you get so you can’t do the treatment due the side effects when you overdo it.  Had I been going to her, I wonder if I’d be a bit better off.  Probably not, quite honestly.  But it does make you wonder.  When I think back of how I’d tell Julie what I was feeling, I get frustrated at how little she responded. 

Anyway, come October 2007 I got to a point where I just knew I had to stop taking the steroids and the Revlimid.  I was actually ready to just deal with what happens with no treatment.  That is how my body felt.  No more.  When I stopped the Revlimid (11/07) and Dexamethasone (10/07), I was still seeing the BMT doctors.  By January 2008 I have been seeing Dr. D.  I’m just on pain medicine and a few preventative things so far. 

Based on my symptoms of neuropathy, pain, and then being weak and anemic, Dr. D. began ordering several tests: Bone  Skeletal Surveys, colonoscopy, endoscopy, gi endoscopy, MRI’s, Iron absorption test, and lab work.  Everything turns out OK, though the GI endoscopy had a faulty capsule, so there was no valid results.  My lab work shows my M-spike rising, but it’s still OK thus far (as of 3/08).

But as you’ve read, something now is going on.  I did change pain medicine in February however.  I used to take Oxycodone 60mg two times a day.  Because I had to go on Medicare D, I can’t afford to hit that donut hole.  Then, the FDA is pulling back the generic Oxycodone (for Oxycontin) and I cannot afford the Oxycontin.  I had to change to a cheaper pain medicine.  Coincidentally when I started on the Morphine Sulfate in early March 2008, I’ve been feeling a numbness where I urinate.  It very well could be due to the MS, but we do not know for sure. 

Also beginning in March or April 2008, I began having more trouble walking.  My legs are just very weak, then numbness began to gradually set in.  Oh, and I’d complained of some upper neck and back pain. It was tolerable but there.  But due to the creeping numbness and pain, Dr. D. ordered several different MRI’s. 

One MRI showed that I had very little spinal cord opening in my neck—particularly between my C5 & C6.  Dr. D commented that “no wonder you don’t feel good…”  At the time I had a fusion operation on this, on 4/11/08, I was already beginning to feel numb in my right leg and foot very much and it moved to my left foot and leg within a few weeks. 

By May 2008 I became weak enough that while I can walk, I can not walk far or long.  I have lost lots of balance.  One of my MRI’s were in May, just before I was to go on vacation with my sister.  I somehow managed the vacation from 5/10 - 5/17.  It was memorable with family but it was very tough.  Upon my return, 5/17, I felt very ill.  On the evening of 5/18/08 I went to the KU Emergency room.  I was extremely nauseous, had a headache, and then there was that numbness.  The emergency room doctor told me that the numbness was a “big red flag.” 

I asked whether Dr. D. would know I was in the hospital and was told she would be informed.  On Tuesday evening while in the hospital, I pulled my home voicemails and had received two phone calls at home from Dr. D. requesting that I call her “stat”, that she was concerned with the results of my MRI, and that she wanted to admit me to the hospital immediately.  I never understand that call, as here I was in the hospital, and what MRI was she referring to?  I don’t think she got into the hospital to see me until that Thursday.  There is something about being “on call” in the hospital and working in the clinic, some policy or practice, as to why she didn’t show up immediately, I think.  Again, I never quite understood the explanation from the Case Manager Nurse when I asked about Dr. D.  For some reason I did not call Dr. D. immediately.  I think this is because I assumed that they knew what they were doing.  I was being seen by several doctors while in the hospital, too.  In the end, Dr. D. became involved with all the doctors looking me over, primarily neurosurgeon’s and neurologist, but also oncolongist, hematologists, and internal medicine or whatever.  I felt in extremely good hands. 

In any event, I was a mystery and complication and I believe remain one, quite honestly.  The doctors were educated on my history and also was able to get the files from St. Joseph Hospital to when I had radiation in my back. While in the hospital I had a couple of LP (lumbar puncture–where they remove spinal fluid and look for infection, etc.) tests, a myelogram where they put fluid in your spinal cord.  I don’t know the difference between the results of a myelogram versus the LP—other than in one you remove spinal cord fluid and the other you inject fluid into the spine.  I knew the difference when I was in the hospital, but I’ve now forgotten.  I took notes, but I must have missed writing this down.

I also had a “fat pad” test.  This is a test for Amyloidosis, where the abnormal proteins get into organs and tissue.  I do not have Amyloidosis. 

 Then I had a PetScan and I think it shows contrast..like “hot” or “cold” spots.  “Hot spots” would indicate activity, that is “tumor“.  “Cold spots” would indicate dead tissue, or “dead nerve cells”.  I had ”cold spot” at my T8. 

So, the doctors pow-wowed.  My symptoms seem to relate to my Thoracic area.  The Dr. who did the operation on my C5/C6 wanted to ensure that my CADF (Cervical Anterior Disectomy Fusionn) operation was not responsible for any of this.  I believe the Myelogram test is the test Dr. J. ordered to verify this.  In Dr. J.’s opinion, he believed the operation was a reasonable success and not involved with my current dilema. 

One thought was that I had damage in my T-8 from the radiation treatment I had in 12/05.  Usually, if radiation is going to do damage, it is within a year.  This is over two years, however.   The radiation doctors from St. Joseph felt that my radiation was too low and little to cause damage.  It was at 3.5 gray, 10 treatments (whatever all that means).  Also, the thought was had the damage (this spot at the T8) been from radiation, it would be in the entire area I recieved radiation–which was at T7,  T8, and T9.  There is only one spot at the T8 indicating dead nerve cells.

So, the diagnosis, as best as the doctors can tell, is that I had a “stroke” in my T8.  It is due to the radiation, but not direct damage from the radiation.  So I’m thinking that perhaps the radiation weakens things or something.  I do not know.  The timing and the one spot just indicates it must have been a “stroke in my spinal cord.”  I’ve been told this is irreversible.  I’ve also been told we’re in “wait, watch, and see” as to if this will get worse.  It may take as much as three months to see if it can get worse.  One doctor said it will plateau and then won’t get any worse. 

So, what is going on with me?  I am quite honestly still confused.  I think more than one thing is going on, but I can not be sure.  I wonder if I have neuropathy, myopathy, and spinal cord damage amongst other things maybe??? 

I find it funny that if I got neuropathy from the Revlimid, why didn’t I have more severe symptomms back in 2007 before I stopped the Revlimid?  My feet tingling/numbness/pins/needles did not start until March and April.  As I type this out, perhaps it’s really all just this spinal cord damage. 

One thing I know, God is in control and he can do whatever he wishes with me.  For one thing, I am open completely to God, using me for His good purposes.  I also know that if He wishes, He can regenerate my nerves. 

One other thing to consider is my cancer.  My numbers are creeping up.  I do sort of wonder if the Myeloma is just in my back and perhaps in tissue or organs.  I know the ‘fat pad’ test was negative, but maybe the MM would show different. 

I’m not scared and I’m not losing sleep over it.  My biggest concern is leaving a mess behind for family to take care of and also being a pain while being sick and exiting this world.  I just want it simple when my times comes…for my family’s sake.  That’s sort of why I wish my place would sell and that I could get all organized and in a nice little place.  I’ll have everything all lined out and just enjoy life until the end.  Period.  Simple.  Sounds morbid doesn’t it?  I’m just realistic, that is all.

Am I scared at times when I think of it?  Well, ya I think so.  But I’m not one of those that needs or wants to hang on to this fleshly life at any cost.  I want to enjoy it and every little thing while I’m here, but when my times comes, so be it.  I love God.  I know it’s all about eternity.  And then, what about all that stuff you accept what you can’t control and all? 

OK, so back to the point I am trying to make paragraphs ago: stimulated bowel movement.  I’ve wanted to get you to ”the now”.  So here I am with this new body and sensation.  Some of this may change for better or worse. I have a numbness from the waist down, though I can still feel, it’s just numby/tingly.  It’s slanted sort of in my hip area and often feels tight across my right hips.  I figure it must be something with nerve endings.  They are squirrelly things for sure. 

Where I urinate is basically numb, but that can also be due to the pain medication.  I still have control of my urinating and bowel movements, but I am weaker.  Again, some or all of this coculd also be due to the pain medication.  I can not feel myself have a bowel movement totally.  I feel pressure down there.  When I am done, I feel like I’m still in the middle of having a bowel movement for several minutes, I guess due to those “nerve endings.”  When I sit down, I feel like I’m sitting “on something.”  I do not mean to be gross or too graphic, and I will remind you I’m just trying to be blunt in case you find yourself in a similar situation, but I think that if I have the littlest bit of BM in or near my rectum, that I can feel it.  It feels like I have a cantelope or something pressing down. 

But there is good news in all this.  One can adjust.  First, you must use your mind and focus.  You just have to accept and embrace it, or you can choose to fight it and make your life miserable.  There are worse things to adjust to, but I must admit–this really is tough.

I have always been careful with medication.  I never want to be dependent or addicted to something.  I get frustrated when I perceive my sisters worrying about me getting addicted to pain medicine.  (If you have pain from cancer, you need pain medication and you don’t get addicted when that is your purpose. It’s when you take pain medicine for other reasons that you get addicted.)  So, this potential to get dependent on any medication is something I am very conscientious about.  I have hesitated to take stool softeners because I don’t want to be dependent on them.  However, I realize that it is very important to keep your bowels moving.  And, even if I do get somewhat dependent on softeners, etc., well, that is my “new treatment requirements.”  I realize that there are those that are paralyzed, etc., and things just have to be done. 

So, I’ve been taking three Sennekots a day to remain soft.  You can take up to 8 a day. I have been having bowel movements every day.  But I have felt like it’s not enough.  I eat a lot.  I don’t think what is going in and coming out is balanced. 

So yesterday I decided to do something a bit more aggressive.  I added a “stimulant” to my day.  I used Correctol, which I really like, it’s very gentle.  It says you can take up to 3 a day.  I took three, one at a time a few hours apart.  Then I took one this morning just for good measure. 

It worked very well.  Again, I learned a lesson but it was not too awfully bad.  :)  In any event, I’m not sure if I’ll just take 3 Correctol’s every so many days or what yet, but I just know that I need to add the “stimulant” to my regimen.  I see the neurosurgeon 6/26 and a neurologist 7/23.  One or both can address what I need to do, as they deal with neurological damage. 

2 Comments »
Filed under: Regular News

First of all, Mandy returned on the porch at 4:00AM.  The steroids have had me going and I’ve been up til 2:45AM reading.  (I will not do that anymore, it is not wise.)  I turned out the lights at 2:45am with a prayer similar to this: “Lord, you can do anything; You work miracles.  If it is your will, please let Mandy be OK and return. Please make it that she really was just working things out and that she is OK.  Please forgive mme with how I did not handle this well. Amen.”

At 4:00AM  I had to go to the bathroom. I could tell my poodle wanted to go outside.  And there was that familiar body form: Mandy.  She was wet and eating dog food.  I was elated!   Of course I loved and petted and greeted her.  I immediately got her a bisquit and a new bolw o fdog food in which she began to hog down.  I knew eating was a good sign.  Then I just opened the door and she came right  in.  So, I brought her food in and let her stay inside.  I figured that I could keep her close so that she would not run away again.  She can walk, just limps on her right leg really bad.  After she ate, she lay on a little dog bed by my bed.  She seemed comfortable and was not whining in pain.  Rather than call the vet, I thought she would be OK a few more hours. 

I wonder where she was all this time?  Working it out for sure.  I didn’t mean to sleep until 9:00am, but I think it was that late, maybe a little earlier. I got up and dressed and it was so hard because my legs are still so weak.  But, I somehow did it.  I was able to coax her to the back of my car.  I chanced it because she’s not used to a leash, but she faithfully followed me. Once at the back of my car, a Subaru Forrester, I had already had  the back hatch open.  She immediately lay down. I’m thinking “oh oh” as I am weak.  But, I was able to lift her front to the car, and then sort of grab her butt-fur and get her in, then quickly shut the hatch before she jumped out.  I hit my shoulder hurryging, but no harm done.  Whew!  I made it.  My vet’s office are wonderful people.  I’d called ahead and told them I was coming. They said if I had a cell phone, to call as I drove up and they’d come right out to the car and help me. 

As I began to pull out of the drive, Mandy started whining and shaking.  Being the flighty-type dog she is, she can go into a seizure when she gets excited.  She started acting like she wanted to hop over the seat and come forward.  I told her to stay; she obeyed.  She’s such a good girl.  Then I remember after reading Scripture the night before where it said to sing and praise the Lord.  I started singing my own praise, thanks, prayer, whatever songs to the Lord.  If I may say so myself, I was impressed with my bad-self.  I created neat lyrics and tune even, and many times I even rhymed.  I thanked God for what He did, I adored Him, I praised Him, I asked Him to calm Mandy, I just sang my heart out.  Mandy actually calmed down and lay down.  God is so in control. 

The vet has her for now.  He felt her shoulder and arm and thinks nothing is broken, but just very very sore.  But, he’ll xray her and look her over.  That was 9:30AM and it’s now 4:25PM.  I haven’t heard anything, but I figure no news is good news for now.  She really didn’t look bad at all.  I really think she is going to be OK, though she may have arthritis and a not-so-good shoulder the rest of her life.  At the worst case, at least I have her where they can remove any pain.  I do not want her suffering. 

So, on the Mandy front, I am so relieved.

What an eventful day afterwards, though, and I feel so good at how much I continue to improve.  First, I met a lady on the way out of the vet that I used to sort of know.  Well, we just knew that we both worked at Sprint and that we both had horses.  She went to the same stable up the road I used to go to, to learn the Parelli Natural Horsemanship techniques.  That is about all we knew each other.  I don’t think she had any idea I’d got cancer, etc.  (in 10/05).  By now, she’s been laid off of Sprint, so we both are bumming for different reasons.  We had a great conversation about God and faith.  We spent nearly 45 minutes getting acquainted for the first time.  I hope we contact each other again, even if just through our horse-email chain.  She (Kathy) is a very neat lady.  We hugged good-bye and I nearly fell.  Had she not held on to me really good and lifted me up, we both possibly could have ended up on the sidewalk.  My balance is exceptionally bad now plus I’d been standing still so locked up, then, when someone hugs me, it does put me off balance if they don’t k now to hold on to me a bit before letting me go.  But, no fall, and a semi-graceful good-bye.

I had an hour before I had to be home for the ‘exit interview’ from the Home Health Physical Therapists.   I stopped by the pharmacy that has that walker with wheels and brakes I’m drooling over.  They sold the one they had out, but they have more a few doors down.  It costs about $120.  I need to be patient and wait for the doctor to prescribe it so Medicare can pay for it or some of it.  But, I want and need one right now.  If I can be mature I can wait until 6/26 and just get one then.  I know that I will also want just a little plain walker.  I know that sounds crazy, but if you need a walker, well, there can be different situations for one or another.  This one I like is good in that it will let me move with ease, has a seat if I need a quick rest…but it’s not designed to sit in like a wheelchair, and I think it has an optional basket.  I think this walker would be a benefit.  Then, just one of those plain walkers might be nice around the house or for walks or short trips.  The other one just has “accessories” and “options” like the brakes.  OH..and ya know what, I may not need more than a cane most of the time.  I don’t use a cane 100% in the house, but the fact that I have been so weak and having this steroid problem, I have been using my cane just to be safe and have balance. I do not want any accidents.  So,….what to do.  I see myself charging that walker.  I just know me.

I did look at shoes they had, as I don’t have good shoes for my feet now. I have peripheral neuropathy really bad in my feet.  They hurt, feel tingling/burning, and like they’re touching each other.  Bottom-line, I’m supposed to take care of my feet like someone who has sugar diabetes.  I need balance, roomy toes, etc.  They had these black shoes that feel and fit so good.  They were “try on” shoes and I bought them.  I got a 30%  discount and still paid about $120 for them.  I don’t care, though, because compared to the comfort and ability to walk, they are 100% than the tennis shoes I’d been wearing.  The tennis shoes do not have the toe room, comfort, or balance support that these somewhat ugly black shoes have.  They’re not all that bad.  They’d look better with long pants or jeans versus shorts I suppose, but right now I’m into functional, safety, and comfort.  I am wearing them now and they feel good.

So, I went home and was hoping the PT ladies would be late, as I had not had my little ritual breakfast I’ve learned to love.  Rice Krispies with thinly sliced bananas, fresh strawberries, milk and sugar.  Then toasted bagel with lots of cream cheese, and a nice big cup of coffee with lots of cream and sugar.  I have had that exact breakfast not only since I’ve been home from the hospital on 5/31/08, but I had it often in the hospital…less the strawberries.  I don’t always have fresh strawberries.

So, I got my breakfast and then here comes the ladies. They were very nice and while the exit interview took a while due to the paperwork (that had to be done via a slow computer), it was fine.  I enjoyed the ladies.  I had to answer some questions, do some exercises, etc. 

They did not notice and I’m sort of embarrassed to admit, but that is what this blog is for: help, experience, and honesty…but I weeweed my pants a bit.  This is a new me with this pressure and numbness.  I don’t want to be too optimistic or imagine things, but I am both adjusting better but maybe functioning better..not sure.  But, I still must be careful.  I never had bladder or leaking problems in my life, so I realize I’m lucky since some women just do.  But, after this big morning and all its activity, all the coffee and milk I had, then the girls here a while and I had to move around putting more pressure there on a full bladder, as they walked out the door I realized I had a little urine in my pad.  That is why I wear pads now, I suppose.  Unfortunately, though, I needed to clean up and change things.  I should have went to the bathroom when the ladies were here, and definitely before they had me do exercises.  Simple considerations like that would eliminate any accidents. So, adjust Cindy.  Maybe this is too much information, but again, I think others can get depressed and horrified when new things happen to our bodies.  We can get through this stuff.  We really can.  We just need to embrace change and say, “OK, now what?  I can do this.” 

OK, so then, the PT ladies go, I clean up, and I’m happy that Mandy is alive.  I decide to do a few things around here, like I’m doing my laundry.  It feels so good to have your laundry all done.  I have done 2 loads of throw rugs, one load of my jammies, one load of my whites (undies/socks). I folded the sheets in the dryer.  All I have left is a load of towels and my colors (shorts/tops).  I may do my kitchen towels tomorrow, as I wash them separate of everything.  I feel so good.

Then, I swept the house (with sweeper of course).  It was not a perfect job, but it picked up the dog and cat hair and other yuck.  Then I put Lysol in a bucket of hot water and took a sponge mop and went over all non-carpeted flooring.  It also may not have been the most perfect job, but it picked up dirt that would be still be there had I not.  It will feel good to feel the clean kitchen floor on my bare feet soon. 

THEN, I decided I am done.  I deserve to be done.  I did good today.  I was tired after all that.  I went to get my laptop, and still wearing those tennis shoes, and what did I do?  I fell on the floor at the end of my bed with laptop in hand, but I saved the laptop.  I somehow managed to set it up on this seat-bench as I dropped to my knees. It was not a bad fall.  I barely rug-burned my knees.  It was not a hard fall.  I somehow know how to go with a fall.  But, learning my limitations.  Like when I was emptying the Lysol in the tub, I was sitting on the side of the tub.  My butt is so numb I sometimes can not tell if I’m sliding off of something.  Yep, I slid on the floor, but no harm done.

So, today was my first falls. I was careless.  I need to learn.  I did I think. 

I obviously picked my laptop up and made it to the kitchenette to do my blogging, which is relaxing and therapy to me.  So here I am.  

I’m now baking two red potatoes and will go shower and get all powdered up like I like to do.  I’m trying to figure out how to bake a potato so it’s moist and done but not too done on the inside with a dry and sort of hard skin that you can still eat.  I eat the whole potato. They do it in restaurants.

So, at 350 degrees, I’ve got two potatoes baking without foil right now to dry the skin out and cook the potatoes.  In an hour I’m going to wrap them in foil so they don’t get too dry and cook another 30 minutes.  I know they’ll still be edible, but let’s see what the potatoes end up like.  Restaurants serve them in foil, so I’m thinking they might do something like that? 

I think instead of or in addition to bagged potatoes, I may try those actual “baking potatoes” to see if they are more flavorful.  But I also need to learn how restaurants get the inside/outside like they do.  I love it.  I must say that KU Hospital in KC, Ks makes the best baked potatoes.  Who would ever have thought? 

So, soon…I’ll be all powdered up and clean and I’ll be eating two baked potatoes loaded with butter, S&P, cheese and lots of sour cream.  I know how to spoil myself.

And, one more note.  I am not a drug-taker.  I never like to depend on medicine for sleep, mood, pain, etc., though I do take pain medicine daily.  I have accepted that with MM. In the hospital, due to this PN and all, they gave me a sleeping pill, Tomazepam or something.  I know it’s one you have to be careful of in that you can become dependent.  I took one one night and I rested really well.  

I asked for a prescription of it when discharged and got it. I used it one night since I’ve been home.  Since I have been so wound up on these steroids, more than ever before I think, I’m going to take one of these pills tonight.  I’ve been staying up to 3:00AM and getting up 7am, 8am, or 9am with no naps.  I need to rest and relax.  I know this will be OK.  Even all the while I’d been on steroids when first on treatment, I have never used those ’calm down pills’ they give you…I think Lorazepam (ativan) is it?  I just don’t.  I’ve taken it and mainly this other stuff, prochlorizine or something for nausauea when I had a headache, but never for calming. 

So, there I go.  I’m good.  Mandy is alive.  I’m good.   

No Comments »
Filed under: Regular News

I’ve had so many good days, I was bound to have a set-back. 

Today I feel weak and yucky.  I’ve had a headache since last night.  First, I think yesterday was a bit too much for me and I may have pushed too far going to the store and such.

I don’t usually have high blood pressure.  I had it yesterday at the doctor’s.  I’m not comfortable and when I hurt or am in discomfort, it does go up.  I think the steroids are a lot of it, quite honestly.  This headache feels like the kind of hurt you get when your BP is running high.  I need to relax and chill.  I need to get these steroids out of my body. 

The steroids have really bothered me this time.  In the 3 weeks I’ve been on them, I not only gained 11 pounds, but I am as swollen as I’ve ever been on them.  So they really filled me with the steroids fast and they have just done a number on me.  Although I’m weaning off of them, I still  have to take some and of course, they’re still in my system.

Then, my other medicines have been adjusted, so I’m adjusting to that—like my Gabapentin dosage has been increased.

After my long day yesterday, I needed to unwind.  I stayed up way too late, reading and unwinding when I should have just turned out the lights and rested.

So, with all things considered, it’s no wonder I don’t feel good.  It’s the first day I’d really call “bad” since I came home from the hospital on 5/30/08. 

I will plan on tomorrow being better.  I’m doing all the right stuff now.  I’m resting in bed.  It’s 7:10pm.  I am goig to read Scripture and then maybe just lay here and watch TV and nap.  Whatever I do, I am going to relax and rest.  I’m going to listen to my body and take care of it. 

No Comments »
Filed under: Regular News

Thanks so much for your kind comment and concern!  The funny thing is that I have two journals, basically.  This one was intended to be more factual regarding my MM, treatment, etc.  I’m afraid I’ve not organized this one as yet in that regard…but I do have intentions to place some charts.

But THIS blog was more for “myeloma” folks.  I know I do have several folks who read and rarely comment.  There may be some straggler friends/family who continue to check in on here, but I also have another blog which is more personal and reflective and I might ramble on about things others would not care to read.

So, trying to keep this one focused on factual MM stuff and yes, maybe some feelings and such.  I do think people don’t know what to say, and that’s OK, I don’t expect it.  My true intent was really just to share and help others.  I am a very open person, so I think that when I express fears, worries, strengths, etc., I think maybe someone may be able to relate with my experience and improve their own.

But one thing I hope to do soon is to log down my MM lab numbers and be a little more organized here.  That will help.

But I truly appreciate your note.  It lightened me and made me feel good to meet a very nice person.  See, there are so many wonderful people in this world…people who truly care about others.  Thank you so much.

I wish you and your husband healing and strength and endurance.  It’s a journey, I know, but if you’ve been like me, it’s a journey you wouldn’t trade for the world for some reason. 

Thanks,

Cindy

1 Comment »
Filed under: Regular News

Thinking of having spent 12 days in bed in the hospital and now home my 9th day and I’m making progress, gaining strength, etc.  Today I was a bit tired, but still stronger than before.  I went to the store twice today.  I had to return moldy bread.  The loading and unloading groceries I think was hard on my ankle. I probably tried to carry too heavy load from car to house.  The steps were hard because I was carrying too much.  So, I need to be careful, but no harm done. 

Gosh.  I was so strong before. This is just crazy.  These little things of every day life and they are such a challenge.  Yet, I am thrilled I’m getting by by myself. 

Dreading  the PT guy, Dennis, tomorrow, but I’m expecting it to be my last home visit given what I can do on my own. I’ll probably go to some PT place in town a few weeks.  I’m undecided and not sure  what to expect. 

I see my oncologist this Tuesday.  I think it’s the next week I have another MRI and see the neurosurgeon.  And then it’s sometime in July, I think July 23rd, I see the neurologist.  I might  have those two switched (nuerosurgeon vs neurologist), but  I know I see two different kinds. 

I’m hoping I can discontinue the steroids before long.  They make me sweat, they’re  hurting my knees, and I feel that puffy bloated feeling in my stomach area from them.  At least I think all that is from the steroids.  They’re tough drugs.  But, if they’re doing me more good than not, I guess I need to take them. 

I’m pretty resigned that I’m ready to move into a 2-bedroom, maybe assisted living area.  One of those places where everything is taken care of.  I’m really want clean and simple now.  While I am torn with my pets, I’m nearly to the point where I realize I may have to give up even more than my horses.  I’m there.  I  don’t necessarily like it, but when your body is there, you somehow just know what you have to do.  My body is there. 

I’m giving it more time. I have to.  My place hasn’t sold.   But, I’m nearing a time where I’m going to have to make things happen.  I need to focus on me surviving.  I’m OK.  I’m just accepting and being realistic.  One step at a time, though. 

Thank you, Jesus, for getting me through. 

No Comments »
Filed under: Regular News