“Fear is only as deep as the mind allows.” – Japanese Proverb
There are times that a topic seems to speak to me with a mega phone. It comes from various sources and begins to clobber me over the head as something that needs to be spoken out loud, and in my case, written here, hitting the “publish” button and praying I haven’t offended, upset or hurt anyone. When folks leave me comments of support or share their own story I’m always relieved. Of course I have more readers than commenters, but I hope that those who fly by under the radar gain something positive from some of the more difficult topics I try to tackle.
Fear: An unpleasant emotion caused by the belief that someone or something is dangerous, likely to cause pain, or a threat. Synonyms: dread – fright – apprehension – funk – awe – alarm
When I receive communication from those newly on this journey it is often filled with fear. It causes a deep pain in my heart as I make sure that I take the time to fully recall what it was like in our earliest days for me and for Dave, before I respond. I also face the potential reality that I too will be in that place someday, where the end presents itself for Dave and wondering if I will be able to take my own advice. I hope so. However, I honestly and freely admit, I don’t know and can’t know, until I’m there. I know I will likely be strong, but I also know I will grieve deeply. (And don’t think I won’t be counting on all of you to prop me up!)
“If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.” – Marcus Aurelius
So what do you do? You are home after your doctor’s visit or worse a phone call from someone telling you you have this rare blood cancer called Multiple Myeloma, or for others who read my blog, cancer, whatever type it is. You have little to no information yet. You venture out onto the internet. You become overwhelmed, you find data that you are trying to understand and can only really understand the simplest of things about it and it frightens you. You glom onto the life expectancy and you swallow hard. You may be young, middle aged, or elderly. It doesn’t matter really, except to you it matters greatly. Whatever your personal circumstances may be.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.” – Eleanor Roosevelt
Perhaps you have found out through a catastrophic event and you or your loved one is in the hospital with your life upended. Perhaps you found out you’re smoldering or MGUS (precursors to active myeloma). Perhaps you thought you had one thing and now you find out, no, you have this. Or even worse, you have this AND that! Perhaps you have been having that decade where everything that used to be great about your life has just gone to hell. One thing after the other and you just don’t know when you’ll catch a break, when it will stop, and your luck will turn back around.
“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.” -H. P. Lovecraft
“Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.” – Dale Carnegie
“The enemy is fear. We think it is hate; but, it is fear.” – Gandhi
“I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path.Where the fear has gone there will be nothing. Only I will remain.” – Frank Herbert
When those awful thoughts sneak or roar into my consciousness, UNINVITED, I face them. Head on. I confront it and deal with it. Once I came to the realization that I would survive, our children would survive, Dave’s parent’s would survive, it freed me from the fear. I was able to then not be held hostage or make decisions based on fear, but on common sense.
Dave kept apologizing to me for getting cancer and doing this to me. Once I realized that no matter what happened I would make it, I said to him, “Please don’t apologize anymore. We really don’t have time to focus on blame, shame and regret, it’s a wasted emotion. I’m going to tell you this not to hurt your feelings but so you can let it go and focus on the more important things. The kids and I will survive. We will be OK. But with every breath I have, I will fight for you to make it. I will fight for you to survive along side of us for as long you as can and you are willing. So focus ONLY on getting through your treatment and coming out the other side, nothing else.”
It was a pivotal moment for us. We just stared at one another from a few feet away. The realization that we were in a battle, and actually naming the battle, confronting those things unsaid, and then that knowing LOOK of understanding, agreement and shared commitment. We will go wherever this journey takes us, together, for as long as we can, without fear, without blame, regret, or shame. We will just do it.
“Hope never abandons you; you abandon it.” – George Weinberg
This is also true for those of you who struggle with your 6 month check ups! Worrying and worrying about whether your tests will prove that you are alright. Try not to do this. Your doctors get paid a lot of money to keep up with your condition. Certainly be prudent and keep up with things in the event balls get dropped, but not in an obsessive way. I often tell people of a 17 year survivor who relapsed last year and is still kicking around in Arkansas. He and his wife were extraordinarily happy and upbeat whenever I would run into them. I would always smile and ask him if I could “touch him”. Hoping some of that good luck would rub off on me. They are Myeloma heroes. Imagine if for 17 years he and his wife worried about his Myeloma coming back! What a colossal waste of time!!! We are all here on this earth for a nanosecond in the big scheme of things. Enjoy your precious time, being with those you love. Nothing else matters. Nothing. Learning to LIVE with CANCER is the real challenge, if you are fortunate enough to come out the other side of your treatment. It is truly the prize.
“People may not remember exactly what you did, or what you said, but they will always remember how you made them feel.” – Unknown
Haha, well maybe we need to get you the Mega B1!!! I’m happy that you have found something to help you though and hope that you are getting some sleep right?
Lori….I used your knowledge on B vitamins over a year ago…I guess I just have a REALLY active mind. 🙁
I hear you Angie! So, if you aren’t already, read my post on Vitamin B the Stress Vitamin. It’s at the bottom of this post in “Related Posts”. Vitamin B-1 before bedtime will help turn off the recurring thoughts.
Lori….fear…what a great (not really) topic. Night is the worst for us all I guess. I’ve never really contributed it to fear…but I guess it is. I just can’t stop my mind…so I read way too late in the night. And check to make sure there is snoring or breathing often. What a journey we are all on….but grateful to be on it….not over it. May have to borrow some of your beautiful words for my carepages. Big hug! Thanks for your beautiful words!
Karen, You continue to be my hero. What you and Hugh have endured…with such grace and courage, even though I’m sure it doesn’t always feel that way to you two. You are amazing! And I have missed you my dear friend. Thank you for chiming in and I’m so happy to have heard from you. You will get a great report and deal with the next leg of your journey whatever it is, of that I am certain. Thank you for sharing your story with others. I’m always honored that you do and I know it will help countless others swirling around in their tornado. Much love.
hello dear friend – it’s been too long since i’ve chimed in! i read everything, but often have not had the energy (emotional or physical) to compose something to contribute. chemo brain has definitely set in!
as you know, i was diagnosed with stage IV metastatic breast cancer in december – then only a few days later with insulin dependent diabetes. this on top of hugh having myeloma since october, 2009, was a double – no! – triple! -whammy. i never dreamed we would be both have cancer AT THE SAME TIME. at the time i was diagnosed, hugh was still struggling with depression, still fighting to regain strength in his affected leg from when he collapsed after a complete fracture of his femur, which led to his diagnoses in 2009, still slugging it out with physical therapy to get his wonky, re-built leg to function normally, and still recovering from the second of the two stem cell transplants, the last in april, 2011.
all i can say to your other readers is that refusing to let fear in the door is THE MOST IMPORTANT THING you can do for yourselves and for those you love. FEAR IS THE ENEMY – ALWAYS. one must have a sense of urgency, a determination, and an iron will to resolve that fear will not be part of the agenda of to get through the myriad of things that will be part and parcel of dealing with cancer, with all the unknowns, with having to be in full battle mode at times, in order to CONTINUE LIVING as fully as we deserve to.
it’s a tall order to wipe fear off the slate, it isn’t an easy dragon to slay. but, lori, since i first found your blog in 2009, when i read what you wrote about just grabbing something, one piece of the flotsam and jetsam swirling about in the cyclone of issues when one is presented with such devastating news, and tackling it, doing it, just getting it DONE, i started practicing that tactic – and it worked wonders! i learned that whatever you want to take the place of fear – be it empowerment, hopefulness, strength, healing, a fuller spirituality, peacefulness or any other goal – can and will prevail if one keeps aware and understands the true enemy is fear. it will always try to insinuate itself at the worst times, but don’t let it win! don’t let it take the places in your mind and heart that one needs to carry on, to love others, to love oneself. and don’t let me get started about what havoc fear can wreak on us physically; and emotionally, fear and anxiety are truly contagious to those around us.
when i got the phone call that changed our lives forever (again!), the whole nearly 2 1/2 years of our battle with myeloma shot across my memory in what seemed like a mili-second. i felt all my insides collapsing somewhere down around my ankles. i heard a “whoosh” of air leave hugh’s body, and saw his whole physical demeanor give way under the weight of that stunningly crushing blow. i thought about what it was going to be like to tell our children that now both their parents had incurable cancer. at this very moment in time it still makes my heart beat with pain and sorrow to re-live those moments.
but here’s the thing. i was not afraid. it amazed me and i wondered if it was just because i was in shock. but as the dust settled, i found myself able to put into practice what i had learned to do all those many months when we were dealing with so much after hugh became ill. i realized that my response to the news i had just received would be what would set the tone as to how we were going to proceed with all that needed to be done. not that there weren’t a few (okay, more than a few) WTF??? moments. but i knew that if i caved to fear and trepidation, everything would be so much more difficult for my loved ones and for me. and so it has gone for these last 4 months. it’s not easy. one troubling issues has been dealing with preparing for the possibility that both hugh and i could have a medical crisis simultaneously – logistics are such that if we ended up hospitalized, he’d 20 miles away, while i would be here in our hometown. an alarming thought when it first occured to me – our only child living near us is our son who has a family and a demanding job, and we have no other family nearby. but when i first felt the chill of fear at that thought, which, of course occured to me in the middle of the night – my first internal response was NO! i guess i’ve found that whenever i feel fear, it makes me mad. and when i get mad i can’t think straight. i hate it when that happens! chemo brain – are you listening??!! anyway, we’ve been able to begin to formulate a plan that leaves us feeling more secure in just such an eventuality.
so – do whatever you have to to banish fear. get busy, do something physical (i can become OCD with cleaning things!), make a list and check things off as they are accomplished, think of every most happy memory you’ve made with family and friends, think of the bonds of love formed that will never die, and little by little it will get better, you will find your own way to cope with fear, and you will be so grateful you made the effort to confront it head on.
on a happy note, both hugh and i are doing well. his depression has lifted and i have my manny-man back! physical therapy continues, but at a much more positive pace, as we changed facilities and he’s had much more innovative and effective treatments. we learned the first of 2012 he is holding steady in CR, and has not had even a hint of any of the bugs that flew around all last winter and this spring. i just finished 4 months of chemo with 2 “miracle drugs” that have allowed me to live pretty normally with only minor side effects. i will be having a PET-CT scan next week, the hope being the breast cancer has not spread futher, and that the tumor has been shrunk enough with chemo so that i can proceed to surgery. i feel very optimistic and have had total faith, felt very secure, with my entire medical team. coming from me, a hospice nurse, that sure is a wonderful gift.
diabetes – well, i don’t like it, i HATE it!, but accepted it as just a detail in my overall care; and it’s becoming apparent there’s a possibility that i will not need insulin in the future. strange though it may seem, our lives have become more full and satisfying as we consider the future – we’ve met such lovely people right on the same journeys as us, formed incredible bonds that have helped us get outside of ourselves to lend a hand to others (always a blessing), and are still living with a huge sense of appreciation for each day we have together, for the beauty of nature, art, music, and for finally being able to actually complete the new york times crossword puzzle with out using the computer! 3 sundays in a row!!!
much love and warms hugs to you, lori.
Thank you Shelley. I’m humbled. I’m also so impressed with how much better you sound from those early days not so long ago. And yes, the night time was the worst for me too. I would wake up at 2 am in a sweat, hardly able to breath like there was doom lurking and breathing it’s bad breath on me! Horrible stuff my friend. I’m constantly in awe with the strength and courage of so many of us. It helps me to stay strong and feel accountable.
For the record, “Myelomaville” is a term that Sean Murray coined. I used to credit him every time I used it, but have gotten lazy about that. He is one of the most gifted, witty, writers I have ever known, and I had the honor to meet him briefly in the flesh in Arkansas. It is indeed PERFECT.
Myelomaville….I like that! If it wasn’t for people like you, Lori, I would be a total basket case by now. I’ve found a new community of people to help me through this difficult time. I just didn’t know it had a name….Myelomaville. 🙂
I loved the quotes in your blog about fear. For me, the time at night when I’m trying to fall asleep is the hardest. That’s when the fear monster rears it’s ugly head. The fear of the unknown and what’s to come. 🙁
Bonnie, I’m walking in your shoes right now. My husband was diagnosed the same way, after blood tests results from his yearly physical in Oct 2011. It took until Jan 31, 2012 to get a diagnosis and by then his M Protein numbers were 79. We live in Canada so the measuring of the protein numbers are a bit different. But I can say that his bone marrow biopsy indicated 76% myeloma cells in his marrow. It’s been a very fast paced and hard road since that time but with people like Lori, I’m learning to handle it. If you are interested, there is an awesome group on Facebook that you can join. They’ve helped me out so much.
Take care…we are all behind you.
We’re all on the calendar somewhere, right Sarah?
Lori: Great writing, as usual.
There are times…..in the middle of the night…..when a cold sweat comes over me…..FEAR! Fear because I already know he has cancer. Fear because it scares me to death. Fear because of the unknown. I have to MAKE myself take a deep breath and try to calm down.
He’s being treated. He’s already survived over 18 months. How much longer? None of us know how much longer we have….and just because his name has already been added to a “calendar” somewhere…..I cannot, will not, let fear overtake me.
Thanks for putting it in writing for everyone.
And to Bonnie and Jim……the folks in Myelomaville will be there to help you along. There are many blogs, with good info. Many websites……many MM friends without faces. Just hang in there!!
Hugs…..
Hi Lori,
My name is Bonnie Schleicher and my husband Jim was diagnosed with Multiple Myeloma on March 27th, 2012. This is all so new to us. We live in Maryland and are being treated by Dr. Carol Ann Huff at Hopkins. If you send me your email address I will send you our whole story but it’s too much to put on here and you might not have time to read it either but it all started with his routine physical and his blood work came back with high protein levels 8.9, hemoglobin was 12.1 so he’s slightly anemic and his RBC was 3.6. We were hoping it was MGUS and had a 90% chance of that but after his bone marrow biopsy that wasn’t the case. He had so many test over a 2 week period. Skeletal xray showed several lesions on his skull but Dr. Huff did a CT of his head and they’re not active myeloma lesions which is good. He had his first colonscopy and that was fine, upper GI was fine, he also did the small bowel capsule study where he swallowed a pill and it filmed all day. The pill had a camera and a light on it and that was negative. He had to shave his entire chest for this procedure. He was never poked and prodded so much in his entire life. He’s very healthy otherwise, his cholesterol is 124, sugar 95 and goes to the gym daily. He always so physically active. I wish I could say the same. He enjoys biking. He did a biking/camping trip along the C & O Canal last year from Cumberland to DC and they’re supposed to go do the other part the 2nd week of June from Pittsburgh to Cumberland. That’s right before we go back to Dr. Huff on June 14th to see what our next step is. She’s trying to get a measure of where his numbers are from his last blood work and we’re hoping and praying that he’s in the smoldering stages. She said his plasma cells are 15% but reading the report it says the cells are between 5% and 40%. I guess the average was 15%. Still trying to understand all these terms, etc. I’m going to try and cut and paste our journey below.
Thanks for you time.
Bonnie and Jim Schleicher
Hi Everyone,
I know some of you know what’s going on with Jimmy but most of you don’t so I didn’t want to put this on facebook at the present time and just wanted to share this with our family and friends. If I missed anyone please feel free to forward to them.
Jimmy has been diagnosed with Multiple Myeloma and we’re not sure if we’re in the smoldering stages where he won’t need treatment yet or if we’re in the active stages. We won’t know this until we go back in 2 months and have his protein levels rechecked. His IGA level is at 3790 as of the other day. The normal level is 453. If it spikes he will have to start treatment immediately but if it stays in that range when we go back he will not have to start treatment and he will be in the smoldering stage of Multiple Myeloma. The more you read about it the worse it is since there’s no cure to date but they’re making progress everyday. Although this is so new to us and trying to understand everything has been overwhelming to say the least. Jimmy is doing amazing and has a very positive outlook so I know that will take him a long way. I’m trying to stay strong and positive for him and I’m getting better everyday because I know I have to. Ashley is like me and Jimmy is like Jimmy but I guess we’re all accepting what we have to accept and know that we can only move forward from here. That’s all we can do. There’s nothing we can do to change the diagnosis and they’ve never had a case of MM where it reversed itself. Although maybe a miracle can happen. We were hoping it was going to be MGUS which is something they would have had to monitor on a regular basis and you always have the chance that it could turn in to MM but that would have been the best case scenario.
Multiple Myeolma is a cancer of the plasma cells: A malignant proliferation of plasma cells in bone marrow causing numerous tumors and characterized by the presence of abnormal proteins in the blood.
It also attacks the bones and causes lesions and holes in the bones.
Jimmy is very lucky in that category because he keeps his bones strong with excercise and it very committed to going to the gym on a daily basis Monday through Friday. He takes a break on the weekend but he still does something for exercise even of the weekend. I wish I could be more like him in so many ways.
That’s the synopsis above if you want to read any of the below feel free. I just wanted to write this all down so I can remember everything going on.
Thanks so much to all of our family and friends for being there supporting us and keeping us in their prayers. It’s been a roller coaster ride the past couple of weeks but I guess we have to live in the here and now because I know we’re not promised tomorrow but I hope that Jimmy will be one of those that beats all the odds. So many people have helped with their words of wisdom. My boss has been wonderful and has been a huge inspiration and I usually go talk to him almost everyday I’m in the office and he always makes me feel a little better and more positive about the situation. Well I haven’t been there since our diagnosis because Jim was already scheduled off today through Tuesday so I took off with him as well. I’m glad I did. We have college visits for Jimmy Jr. at UMBC on Saturday and an interview with the Computer Science Dept at University of Maryland, College Park on Monday, April 2nd.
We’re so lucky to have amazing and understanding bosses that have been truly incredible with all of our appointments, etc. My boss is kind of like my counselor some days and I truly appreciate his wisdom.
I’ll try to end this on a funnier note. We were able to take the train to DC yesterday to see the cherry blossoms but we were a day late and a blossom short. We were asking how to get to the Tidal Basin where most of the trees are located and after about 5 people advising us that the last of the blossoms blew off the night prior to us going there and there weren’t any blossoms left. We could only laugh and Jimmy said he really didn’t care that much about seeing them he really just wanted us to take the train to DC and spend the day there. I guess he thought that would be more enticing to me to see the trees. Story of our life. We had a few funny moments there. We went on a tour of the U. S. Capitol and the stickers that we had to wear for our tour I stuck on Jimmy’s back afterwards and he walked around DC all day with admit one on his back. A lady tried to tell him but I told her not to because of course I thought it was funny. Well I guess I live in a cave because Jimmy kept talking about going to the National Mall behind the Capitol and we could get something to eat there. That’s also the other spot where the cherry blossoms are located but they were gone. I thought that sounded good. I could go for a slice of pizza or something quick. I asked him where exactly was the mall because I didn’t see it. He said the field was the National Mall and he couldn’t believe I didn’t know that. I haven’t been there in so long I just assumed it was a mall. Oh well!!! I said well where were you taking me to eat. He said one of the hotdog vendors!!! Great the only one we saw there pulled off as we were approaching the truck!!! There went that lunch. There was also a lot of construction going on at the MALL!!!! I finally asked someone where we could go for a slice of pizza. It was hike but it was good all in all. We walked a lot yesterday. We went in the Residence Inn next door after the pizza parlor to go to the lounge for a beer but they didn’t have one. We were batting zero but it was funny. They told us where we could go which was another hotel about 5 blocks aways. We passed by the U.S. Dept of Education and I wanted to take a picture for Ashley since she’s a school teacher. Well who would have guessed but the Homeland Security Guard came up to us and told us we weren’t allowed to take pictures of any goverment buildings because of terrorist atttacks. I told him we were able to take all kinds of pictures at the U.S. Capitol. Oh well. After we left I stayed on the lookout while Jimmy got a picture of the sign. He said if someone comes up and puts handcuffs on him because I wanted to get a picture that would be our luck. Nothing happened. As we were walking back to Union Station he found a cross necklace and I’m going to take that as a good sign. Maybe we need to become stronger in our faith and get back to attending church again. I don’t know what we’ll do at this point but I think it meant everything is going to be okay.
Please keep us in your thoughts and prayers. We appreciate all of our friends and families support and we know that you guys are there for us.
We Love You All
Bonnie and Jim
OUR JOURNEY BEGAN ON MARCH 8th 2012:
Jimmy went for his routine physical the week prior to this and had his bloodwork completed on Tuesday, March 6th.
March 8th Dr. Gerry (General Practioner) called him and explained to him that his protein levels were high and she made an appointment for him the next day for the hemotologist at Upper Chesapeake. I asked him what Dr. Gerry said and what this meant and he said the worst it can be is cancer and the best it can be is a fluke on the bloodwork which I didn’t think happened. He never really asked a lot of questions. She called him again that evening when we were home making food for Alanna’s 25th birthday party that weekend and she called during her off hours and told him she just wanted to know how he was and was thinking about him. Jimmy still didn’t act like this was a big deal and I didn’t need to go with him the next day and take off work. I told him I was going in that morning and working a couple of hours and would be home to go with him. I knew it didn’t sound good that she scheduled him with the hematologist and called him several times to check on him. Dr. Gerry called Jim again after his appointment to check on him which is amazing in itself that she’s such a thorough and caring doctor and I’m sad to say that she is leaving the practice to stay home and raise her daughter. Very saddened by this news as well.
March 9th we went to see the hemotologist Dr. Parsa at Upper Chesapeake and we had no idea what was going on at that point but we were trying to stay hopeful. He broke down what some of this meant. Jimmy’s protein level was 8.9 (normal range is between 6.2 to 8.3) hemoglobin was 12.5 (normal range 13.2 to 17.1) so he’s slightly anemic and his red blood cell count was 3.81 (normal range 4.20 to 5.80). This was all pretty foreign to us at that point and still trying to understand and learn more what all these numbers mean, etc. Dr. Parsa advised that this meant he would need additional test to see what was going on but he had at the minimum and his chances were 90% that it would be MGUS but many more test to determine the outcome. He needed to have a skeletal x-ray, urine sample, new bloodwork, Colonoscopy and an Upper GI (they were trying to figure out if he was losing blood somewhere or why he wasn’t producing more red blood cells), Small Capsule Bowel Study, stool sample and last but not least he would need a bone marrow biopsy to determine the final diagnosis.
March 9th after we left Dr. Parsa’s office we went down the hall to schedule an appointment with Dr.Park for his Upper GI and Lower GI. Dr. Park wanted to see him first because he was anemic before he would schedule his colonoscopy. They didn’t know if they would be able to get him in before the 2nd week in April. They called Dr. Parsa’s office and I guess he wanted it ASAP so they called us back and made his appointment to see Dr. Park for the following Monday.
March 9th after we left Dr. Park’s office we went over to the hospital to get the skeletal xray taken care of since we were right there. I’m glad I went with Jimmy because he would not have tried to squeeze everything in the same day. It was kind of ironic but when we went to registration and the lady that worked there saw that Jimmy’s paperwork was for a Myeloma Skeletal XRay and she proceded to tell us that she had MGUS and was diagnosed 2 years prior to that and was doing fine. She came out and gave us a lot of information and was worried she was scaring us but at that point we were okay. We thought he would be in the MGUS stages and it would just be a matter of being monitored on a regular basis. We had a 90% chance of it being MGUS. We really weren’t thinking it was any more than that. She gave us the name of the lady Kathy Giusti who is the founder of the Multiple Myeloma Research Foundation. She was diagnosed with Multiple Myeoloma in 1996 and is still living today. This is very inspiring to us and makes us more hopeful.
March 10th we went to Alanna’s 25th birthday party and tried to have as normal of a weekend as possible although still scared and unsure. Jimmy was fine and thinking very positive. I was the one more scared because I was the one researching this and sometimes the more you read the more worried you become.
March 12th we went to see Dr. Park for our appointment and he released Jimmy to be scheduled for his Uppper GI and Lower GI but also gave him a prescription for iron pills that he wasn’t able to start with all the test because they required you to stop taking all medications. He also requested a stool sample. He didn’t think we could get his colonoscopy until sometime in April but they actually had an opening on Friday, March 16th.
March 14th I took his stool sample to Lab Corp because I wanted Dr. Parsa to have all results when we returned the following Monday. I thought we were scheduled to have the bone marrow biopsy on the 19th but that wasn’t the case.
March 16th Jimmy went in for the Upper GI and Lower GI and that was the first time he has ever been put under but did amazing and everything came back negative on those test. So now they wanted to do a Small Bowel Capsule Study where he goes in and swallows a pill that has a camera and a light attached and they monitor him all day.
March 19th we went back to Dr. Parsa. I was under the assumption and 90% positive this was the day that they were supposed to do the bone marrow biopsy. Dr. Parsa said this was the consultation for it. I think he had a conference and didn’t have time and I wasn’t very happy at that appointment. He didn’t give us much more info. other than mostly all the test came back negative and the bone marrow biopsy would be the test that will determine exactly what Jimmy has. Jimmy asked him is it still a 90% chance that it’s MGUS and he said no but we’re not going to discuss anything until after the bone marrow biopsy. He handed me a packed on Multiple Myeloma. He went to make copies of some of my paperwork and never came back. He never said he was leaving at that point or the admin would bring us the paperwork, etc. He didn’t even shake Jimmy’s hand and say we’ll see you on Thursday for the biopsy. He said he could get us scheduled on Thursday. After waiting for him to return and getting pretty impatient after waiting at least 30 minutes I went out to the reception area and the receptionist acted like oh I was wondering where you were. She informed us that Dr. Parsa left for a conference. He never said to follow him, etc. We assumed he was coming back especially after not saying goodbye. We were a little irritated but we scheduled the biopsy for Thursday, March 22nd at 9:30 a.m.
March 17th went to Ashley’s house in Canton for St. Patrick’s Day. Fun day!!!
March 20th I was still irritated and didn’t think this was the place to be for something that could potentially be cancer. I decided to do my research and I looked up the doctor that the lady from Upper Chesapeake went to but he was a foreigner and I really wanted someone we could clearly understand. I looked at Hopkins to see who the Specialist was there for MGUS/Multiple Myeloma and I found Dr. Carol Ann Huff. I liked everything I read about her bio, etc. I than reached out to some of our connections at Hopkins. I first contacted Jimmy’s sister Joyce to see if she knew anything about her or if anyone in her department knew anything about Dr. Carol Ann Huff. She advised that she heard good things but she thought she was strictly MM and not MGUS. That really wasn’t my understanding because it’s all related. Joyce gave us another name but I was still thinking that I wanted to make an appointment with Dr. Carol Ann Huff. Joyce advised me that Tianna our cousin was an Oncology Research Nurse now an Oncology Research Nurse Manager. It’s such a small world. I contacted Tianna and she advised that Dr. Carol Ann Huff was wonderful with great bedside manners, etc. I was feeling much better and really wanted to get Jimmy in to see Dr. Carol Ann Huff at Hopkins. Tianna advised me that our very good friend Tina Bauer works directly for Dr. Huff. This is too incredible to be all coincidences. We were meant to be there for a reason. As big as Hopkins is to know two people that pretty much work directly for her or pretty closely. I told Tianna that Tina was already the next person on my list but I had no idea that she worked for Dr. Huff. We’re so lucky to have Hopkins so close to home.
March21st Tianna said they might be able to get Jimmy in there for the bone marrow biopsy which would be much better than going back to Dr. Parsa. That’s what we didn’t want to do. I wanted Jimmy in with a specialist. Jimmy was just happy that I was taking this in my hands and trying to get him with the best doctor in this field. Tianna emailed me and told me to call her because she was going to see what she could do to get him down there for his bone marrow biopsy. She knew two of the best and she would get back to me. This was on Wednesday morning the 21st and as soon as I called her back she was able to get Jimmy scheduled for 12:30 that day. This was around 9:30 a.m. Wednesday and I was at work in Ft. Meade and knew that I had to leave there within an hour so I could get back home and get Jimmy to make it to Hopkins on time. Tianna and Tina have been true godsends to us along with all of our family and friends that have been praying for us. Tianna literally met us outside the parking garage and cancelled the rest of her appointments for the afternoon and stayed with us for the entire process. She was truly amazing and we’re ever so grateful for all that she did. She somehow worked a miracle. The bone marrow biopsy was pretty painful but the nurse that did the procedure was absolutely wonderful. Tianna took us over to see Tina before we left. Tina said she would see what she could do to get us in sooner with Dr. Huff because she was booking into the 2nd week of April.
March 22nd Tina was going to see what she could do and get back to us. I was really hoping we could get in the following week because Ashley told us she was going to cancel her trip to Florida the week of April 2nd if that was when we were going because she didn’t want to be that far away if it wasn’t good news and didn’t want to take the chance. She also wanted to be with us for this appointment. I did not want her to miss out on this trip. Alanna’s (Ashley’s roommate) parents were so gracious and treated Ashley for her airfare to come visit them and stay through Easter with them. I was going to New York the next day with the girls and Jimmy really wanted me to go and not think about all this for a couple of days but of course that’s impossible. He’s so amazing and I admire him for the person he is and he reminds me so much of his dad. His dad was one of the greatest men I ever met in my entire life. I wish my son could have known him but he passed away when Jimmy was only 7 months old. Tina sent me a message that night saying that they were going to squeeze him in either on Tuesday the 27th or Wednesday the 28th which would work perfect for us. Tina worked a miracle for us as well. It was all happening so fast.
March 23rd Jimmy went for the small bowel capsule study and shave his entire chest for this procedure. The monitors would not stick to hair. We went to New York and still had a good time in spite of everything going on around us. Jimmy called me to let me know that Dr. Huff’s office called and they scheduled us for our appointment with Dr. Carol Ann Huff on Tuesday, March 27th to determine our future destiny.
March 27th we went for our appointment. Ashley wanted to come with us and she also brought her laptop and I think she typed every single word the doctor said which was wonderful. She was a blessing to have with us that day. We were pretty scared and nervous to hear the diagnosis. I wasn’t getting a great feeling when she didn’t just come out and tell us it was MGUS. She was going over everything and was very thorough and she was absolutely wonderful but I was worried. The numbers in the bone marrow are normal at 5%, anything under 10% is MGUS and anything over 10% is Cancer, Multiple Myeloma but it can be in one of two stages. Jimmy is at 15%. It can be smoldering where he won’t need treatment yet or it can be active but we won’t know this until his appointment in June. She sent him for a Cat Scan when we left there because they did find several lesions in his skeletal x-ray and they weren’t sure if they were venous lakes or myeloma lesions. Jim signed the hippa form for Tianna to review any of his records so she has been keeping us up to date. It sounds like the CAT Scan for the most part looked good. We’re hopeful that his numbers haven’t spiked and he will be in the smoldering stages of MM.
March 28th trip to DC. Already gave the story of that day above.
March 29th off on vacation and trying to put this all into words so I can remember for my own benefit as well of everything to date. Called to schedule Jim’s next appointment with Dr. Huff and we go to see her on June 14th. We will update everyone after that appointment.
A lot has happened over the past 2 1/2 weeks and we’re just going to keep thinking positive about this and hope that things will be okay and Jim stays strong and beats all odds.
Keep us in your thought and prayers. They do mean so much to us.
FYI: I’m having a 50th birthday party for Jimmy on Saturday, May 12th at The American Legion in Bel Air. I will be sending an evite out today or sometime this weekend and if I miss you please just feel free to respond to this message if you would like to attend. The party is from 7 p.m. to 11 p.m.
LOVE
Bonnie and Jim