Cindy’s Multiple Myeloma Blog

I had a good week last week, having two good sessions with PT, making it to my two different bible study groups, and one day even running several different errands in the one day. When I hurt I cowgirled up. It worked for most of the week.

A migraine got the best of me come Friday. I’ve been in bed two days straight, and finally today, Sunday, I’m vertical. Being off of my feet so fully for two days straight has certainly set me back; I’ve lost some gained strength. Tomorrw I see Susan (nurse prac.) to increase my medicine dosage. I did have PT scheduled for later in the day, but I plan on canceling that appointment. I think given the last few days plus what the increased dose of medicine does, I just won’t have it in me.

The increased dose of medicine exposes weaknesses. The spasticity disguises weakness in that it helps you stand relying on the stiffness rather than muscle. So when the medicine is increased to relieve the stiffness, you’re left with reality. It’s not been a real obvious change, but there’s a slight change. My legs feel heavier for a while, heavier than what they already feel.

When I walk now, normally, it’s as if I have 50 pound weights at just above each knee. My legs feel very heavy. This is because of the muscle I’ve lost due to nerve damage. Other muscles are compensating, but they sure must be wimps because they’re not making it all that easy! Hopefully with continued exercise and PT I can toughen up those wimpy muscles. And, who knows, maybe the damaged nerves in those main muscles will awaken again. I won’t lose hope.

Awwwwww. I was doing so good before this migraine fall. I look forward to having another good week, minus the migraine ending!

That title fits me in two ways.  First, I just can’t find a design on here that I can get comfortable with. I want one that is easy to get to “Site Admin,” is attractive, and easy on the eye or to read. I’m not real happy with this design. So, until I find the right fit, I’ll probably make changes quite often to the design of this blog.

Second, I still can not get comfortable in my body, BUT, the difference is that I am doing better. Yesterday morning I did not want to get up and out of bed to go to physical therapy. Uh-hum…my appointment was at 1:00pm. So YES, that is right, I did not want to get up even that late in the morning! There was an overcast outside, it looked cold and it was supposed to snow or ice!

I was toying with canceling PT when my sister J called to see if I wanted her to drive me to PT. I took her up on her offer. My feet and legs were hurting and not working very well. It was so hard to walk, even with my walker, when I let my dog outside to poddy. But once I got up and around I did better.

Because of my slow start I was fearful I would have a set back at PT. WRONG! I had a great session. My last exercise Woody put a belt around me and he followed behind me as I walked around the clinic without my cane! If I was to fall I don’t see how Woody would have caught me. I did not tell him that, but I would have taken him down with me if I fell. Most of my walk was down halls so I had walls to hang on to if I lost my balance. I did pretty good.

We did two laps. Then once we were back in the exercise room, he had me try to walk fast. That was a bit challenging, but it was interesting to see how well I did. Lastly, he had me walk backwards. I think what stinks about all this is that my grandson walks so much better than I do now!

The swelling in my ankles was the lowest it has been in I don’t know how long. After walking around it swelled up a bit, but not to bad. Even Woody is a little perplexed at my swelling in my ankles. I will ask the Nurse Practitioner about it next Monday when I go back to have my pump medicine adjusted.

Speaking of my pump, I am doing fine. I am now up to 80 mcg per day. Susan thought I may need to get up to about 100 or 120 mcg. That is so strange to think that before the pump I was taking 80,000 mcg’s a day and not having near the success I am now with only 80 mcg’s; it’s because the medicine is going directly into my spinal cord where the problem resides.

Today was a good day as far as my days go! I decided to push myself a bit and go to my Tuesday afternoon bible study (1p-3p). I am so glad I made it. This study is in its 7th week. I have missed the first 6 weeks of the study and have missed it. It was so good to be with these good people – AND it was good to get out.

Better yet, I no more got out and on my way and the sun actually peeked out of the cloulds several times during the day.

My feet burn badly. My calves feel yucky and my ankles are stiff, but it is doable. I’ve got to tell myself it is doable. It is darned hard, but I think that’s how you handle it. And when I decide to do that, it seems to work. I am having longer moments at a time where I don’t “think” of the pain. I know your body adjusts to “new normals.” My body has adjusted to lots of new normals since 10/05.

I don’t know if other people with Multiple Myeloma (MM) ever feel this way, but I often envy some people with other cancers. Notice I said “some” people. I keep seeing these people battling cancer and yet they are doing stuff. They walk and sometimes they even run and hop!! They can function. Even before this spinal injury from the radiation, this MM did something to me. When I first got sick, something happened to my right shoulder and arm and within three days I could not move my arm at all. I had a … gosh I forget what you call it now … but it’s a soft sort of tumor or collection of cells that MM has. The Thalidomide got rid of it for the most part, but I’ve not been the same since. The Stem Cell Transplant (SCT) also affected my joints big time.

It’s frustrating at times but as I’ve said before, I don’t have to look very far around to see people with much heavier loads than mine.

So, while I can not get comfortable in my body I am actually getting better at tolerating it. It just takes effort, motivation, and all that sort of stuff. I noter mentioned his son uses meditation. I think that is worth looking into. One thing at a time, but it’s certainly worth looking into.

Something that’s really bothered me, probably far more than the physical discomfort, is that I’ve felt spiritually uncomfortable for some time now. I have NOT lost my faith. I could not do that. I love Jesus very much and my faith remains strong and true. But it’s been my walk that has been my struggle. It’s been walking my talk and doing as I think my Lord wants me to do – that’s where I’ve felt sadness and failure.

I’ve prayed. Perhaps I could have prayed harder, but I prayed. The good news is that He is answering me. I can’t lose this moment though. I can’t stop hearing His answers.

The follow-up labwork did not show any problems related to having hyper-thyroidism. Doctor J said we’d just monitor it. I see him every 3 or 4 months.

Physical Therapy (PT) is coming along. My pump is also doing just fine. I continue to have the medicine increased slowly. With each increase I go through an adjustment period. As the medicine decreases the spasticity, it exposes weakness. Then once I exercise, then I gain strength.

I’m sad to accept that some muscles can not be recovered. Other muscles will have to compensate. I can see muscle starting to form, but it’s not the same. For example, my calf muscle is barely evident where before I had somewhat muscular calves. It works but it’s not the same. My legs are so very heavy. I have a feeling they will always feel heavy. I may improve a bit here and there, but it will always be a struggle to walk. BUT, at least I can walk. I need to keep reminding myself how good I still got it, because I still have so much to be thankful for.

One of these days I will strive to speak of only “my haves” and not my “have nots.”

But, I’m keeping on with it. This week I’ve driven to my appointments by myself. It’s a little lonely and yet it’s good because it lets me know that I can take care of myself.

Here it is mid-January 2010 and I still feel like I’m struggling. I am making some progress with physical therapy (pt). It’s slow, that is for sure. You have to do these exercises every single day in order to get certain muscles to work at all. Skip one day and you start to lose traction.

I just cannot figure out why I feel so darned fatigued yet! I’m not taking the heavy medications anymore. I take 10mg of Methadone a day, 5mg Norvasc for blood pressure, and then the liquid Lioresal-but it goes directly into my spinal column and should not be affecting my energy.

My PCP had some labwork run which showed I had indications of hyperthyroidism. He subsequently ordered further tests and I should be receiving the results any day now. He doesn’t feel it’s anything serious and nor do I, and whatever it is, I’m sure that there are medications to resolve it. Whatever, I hope I find the answer for this strange fatigue dilemma. It’s such a battle, though nothing compared to when I took the oral Baclofen.

I’m currently going to physical therapy usually about two times a week. I’ve been taught a nice variety of exercises and they are helpful.

I still have the burning feet. For the most part I just have to “cow girl up” regarding my feet pain. The alternative is taking higher doses of medicines like Lyrica. It helped a little for a while, but it got to where I would need a higher dosage to gain any comfort. A higher dosage would lead to more fatigue. So, that’s not an option. Cow girl up. The problem is in my spinal cord, telling false messages to the brain that my feet burn. So in my head I try to tell myself that nothing is really wrong with them and just try to think of it as a false message. It’s amazing what the brain can do and what “we” can do when we put our minds to it. Don’t get me wrong, the pain is always there; I just cope with it a bit better. Sometimes I can go through hours of not feeling it. It’s a strange sensation anyway. If they’re not burning, then there’s another sensation…and all I can say is that it’s indescribeable.

Once I know the results of this latest labwork, I’m hoping that some questions will be answered and issues resolved. Perhaps whatever is making me tired is also affecting my digestive system. There’s also a CT scan I need to have done to compare to last year…something about a spot on my pancreas. They already decided it was OK back then. I guess as long as there’s no changes. I sound like I’ve got lots going on. Maybe I do; but most likely that since I have some curious things going on that any little oddity discovered during a procedures in monitored. Don’t know if that makes sense…just saying that the doctors check everything out and monitor every oddity. I’m thankful for that.

I’m working hard on physical therapy. I’m thinking about getting back into juicing again. I’m hoping to resolve this fatigue and digestive discomforts I have soon.

In the meantime, I pray for Haiti….those poor people. Praise be to all the volunteers helping those people. I’m proud of the US for stepping in, as always. I’m proud to be an American, always.

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.

Last week I had my first physical therapy (pt) appointment. My physical therapist (PT) goes by “Woody.” He’s very professional and very kind. I like him very much and I’m very, very comfortable with him. We spent most of the hour getting to know one another, which is important since we will be working closely together. Plus, he needs to know -and- I need to feel comfortable telling him all about my strange sensations I feel in my private area. Surprisingly, I was reasonably comfortable expressing all this to him and he appeared to be very knowledgeable and familiar with my symptoms.

Woody will help me gain strength and stability in my walking. He may also be able to help me do some desensitizing in my feet. Woody explained how my spinal cord is sending incorrect messages of pain to my brain that my feet feel like they are burning. He explained some examples how to go through this process of desensitization, but we did not go into a lot of detail at this time.

My initial homework therapy is to exercise with a child’s ball. The ball is approximately the size of a soccer ball. He had a soft rubber ball that sort of gave if you placed pressure on it with your foot. I am to sit down, legs bent, and place my foot on top of the ball. Then roll my foot forward and back with control, no shaking or wobbling allowed. Next roll the ball in circles using my foot. First roll your foot clockwise on the ball several times, then roll your foot counter-clockwise several times. Woody said I could not do that enough each day. Also, place the ball between my knees and press my knees together. That exercise will also help strengthen the muscles in my bladder area.

I did not get a chance to go shopping for a child’s ball to exercise with, so I ordered a ball online. I thought it would be here by now. I see Woody next Tuesday. I never thought of improvising, but I can go through the motions without a ball. It’s just more effective with a ball. Oh well.

Since getting the Medtronic implanted 11/4/09, I’ve got off several medications. I discussed it with one of my doctors and I stopped taking the medicines slowly. First, I’m getting way less Baclofen through this pump. I stopped taking the Effexor and I stopped taking Lyrica.

I got the Effexor primarily to make others happy, I feel. I was in the midst of figuring out what all these painful symptoms are from plus getting to know new doctors. Being a very expressive person, I was very clear how uncomfortable this pain, tingling, and burning sensation is. A few of the doctors and my sister thought it would help me tolerate the pain a bit better. Dr. P said it best when he suggested I take the Effexor on a temporary basis. When he suggested that, I decided to try it.

My PCP is the one who prescribed Effexor. I did not notice much help when I first took it so the doctor increased my dosage. Again, I didn’t feel any value from it. If anything, I felt like it gave me more of an edgey feeling and I had to keep my edginess in line (in which I did). I don’t see my PCP until just before Christmas. I don’t know what he’ll think, but I feel better without the Effexor.

The Lyrica helped a little with my feet pain, but it no longer helps that much to continue it. I’ve tried to discontinue the Lyrica four times before and I would immediately hurt and get back on it. As time has gone on, I was able to spread out not taking it. Since the Medtronic pump, I was able to stop the Lyrica. I think since there’s less spasticity in my legs, there’s less pressure on my nerves, so less need for the Lyrica. I was able to stop the Lyrica this time, anyway.

My goal is to take as least medicine as I can. For me, that works best. However, IF I need something or if a medicine truly makes my life easier or less painful, I have no problem taking the medication. It’s just when there is no value, very little value, or worse…side effects that do not make the medicine worthwhile, then in that case — I just as soon not take the medicine.

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 know what I want to say, but I don’t know how to do it. I’ve written several entries on this, just to delete them.

Maybe I don’t know what I want to say, I’m not really sure.

I guess I find myself feeling alone in some ways. Oh, but I’m not alone. I have two wonderful sons. I have two wonderful daughter-in-laws. And I’m very close to one of my daughter-in-laws mothers. She is wonderful. I have one sister, I’ll call her Sister #2 (since she’s second oldest), and she is very loyal. Yes, I truly do have a great group of supporters.

I am single and have been single for quite some time. I wonder why it took me this long to have a vague idea of what to look for in another person. I let too many red flags go by in past relationships. I passed up the good guys and somehow always found myself with a wrong match. So much time wasted.

Then at 50 years old I am diagnosed with a terminal cancer. There’s no one to share that “through sickness and in health” thing with!! It can be quite scary. I did work myself through this idea where when one spouse dies, the remaining spouse is left alone.

I have found that no one wants to really hear how much it hurts or how miserable you are. No matter how much you know it hurts, no body wants to hear it unless they can fix it. It’s frustrating for others to hear your constant complaints because they’re left helpless. They really do care, but there’s nothing they can do about it.

Sure, the very thoughtful and in-touch type of person understands that as long as a person is not one of those chronicle complainers, that it’s important to be a good listener and show compassion and understanding.

But how can the typical person show understanding unless they’ve experienced it, too? They cannot and it is not their fault.

I know that it is important to talk and express your feelings, both good and bad. It is equally if not more important to face it, keep doing what you can to alleviate it, but look forward, for heaven’s sake. I understand all that – and I am a ‘move forward’ type of person.

But oh how I would love to talk to another who knows what I am talking about. It would have to be someone who experiences the nerve pain and damage as I have. I just want to compare notes.

Nerves are hateful little creatures. Before this, I could never have imagined this feeling of discomfort and pain. Even reading my descriptions would not make it clear – unless I experienced it, too.

So, I think I’ve summed up this entire entry. I just want someone to whine to don’t I? Ha! Perhaps that is true.

No. But I have a strong need to share my symptoms with another with similar issues. I would wager there are others out there feeling just like I do.

I’m already there! A Support Group! The problem is meeting together in person because not everyone may be able to drive or have easy access to transportation. But, this is certainly an avenue I intend to persue – sometime in the future. I want to be at a place where I feel stable and ready to make a connection. We will see.

The Baclofen Pump was successfully implanted last Wednesday. I had a follow-up appointment today. So far, great. We’re slowing increasing the dosage, which is still way lower than what I was taking through pills. I have lots of strengthening therapy ahead of me, I’m sure. Once seated after a while, I dread getting up because it’s hard and hurts a little. But I get through it. It’s way better than not being able to get up at all.

I saw my oncologist today, too. Once again I asked him if he wasn’t sure he’d ever had a Multiple Myeloma patient who had a tumor on their back radiated and then get spinal cord damage like me! I told him I’m going to ask him that question until I hear the answer I want. hee. We both laugh. I just love Dr. Mundis. We definitely communicate well together. It makes such a difference now. I can’t believe I survived those other doctors way back…2008.

We all wish we didn’t have so many doctor appointments, but when you dread going to a rude, aloof, edgey, just simply “not nice” doctor, it makes it tough. My current team of doctors are so awesome, and this includes my dentist.

November 4th, Wednesday, I’m having a Baclofen Pump implanted. This pump will contain liquid form of the Baclofen. A tube going from the pump to my spinal cord will transfer the medicine. This way the medicine goes straight to my spinal cord where it’s needed. It will relieve me of the rigidity and spasms in my legs.

I’m told it also exposes any weakness. For example, the rigidity also helps one balance and stand up. You get to rely on that stiffness rather than muscle. I think I have a good start of muscle as I have been doing some walking whereas some individuals are to the point of no walking.

I look forward to not being as sleepy. I hope that happens anyway. I’m still taking Lyrica. I think the combination of Lyrica and Baclofen made the fatigue more pronounced.

I’ll try to post soon after the procedure. It will likely be a little time and physical therapy to get stabilized. I know my attitude and desire to succeed will not only get me through this, but I imagine I’ll get through this at a fast pace.