Monday, February 22, 2010

Myeloma Mondays #3: Jodi from New Jersey

Background info:

I am 45 years old, married (20 years this year) and have 3 children. My daughter is 17 and our sons are 13 and 9. I considered myself in fairly good health. Never really sick enough to go to the doctor. Really bad about having an annual physical. I have had lower back pain most of my life courtesy of bulging discs. It should also be noted that I live approximately 3 miles from the Oyster Creek Nuclear power plant in New Jersey and have for the past 20 years.

As I look back over the past year, I can probably find a multitude of symptoms that I ignored. I was never one to go to the doctor unless it was absolutely necessary. Obviously, no one symptom was ever bad enough to get me in that office. Plus, we had other things going on. In May, 2009 my husband was diagnosed with thyroid cancer. As horrible as the "C" word was then, I remember telling him that if you are going to get cancer, that was a "good" one to get. Everything was contained within his thyroid and in June, 2009 he had the thyroid removed. He received radioisotope therapy in early August for which he was isolated from us for 5 days. His treatments were successful.

As for me, May, 2009, was also not a good month. I began having neck pain. I figured I had just slept the wrong way, twisted it, etc. I finally went to a chiropracter because I was also having lower back pain. An MRI showed that I had a 30% compression fracture at C7. At this time though, no one was suspicious of anything and called it a fluke. Because of my husband's illness, I put off doing anything. The pain was getting better, so I figured, why bother?

August, 2009, right before my husband went back to work, I took my daughter, Sarah, and myself on a short cruise to the Caribbean. She would be starting her junior year in high school that September and already had plans to travel the following summer to Germany with her class. This would have been the only time we could go and it was something I always wanted to do with her. Regardless of what people say about the teenage years, we have breezed through them with Sarah. She may be daddy's little girl, but she is my buddy. So we left the boys at home and went off to do some serious suntanning. Halfway through the trip, my lower back was in agony. Apparently I was starting to fracture on this trip and I am grateful I did not end up in a Mexican hospital.

When we got home from the trip, I made an appointment with an orthopedic. Sept, 2009, I went and had more x-rays done. It was the orthopedist who diagnosed the partial compression fractures at L2-L3. He also ordered bloodwork, another MRI and a CT scan "just to be on the safe side" was how he put it. I could tell by the look on his face that he didn't like what he was seeing.

I never made it for those tests. Three days after the orthopedic appointment, I collapsed on my kitchen floor with excruciating lower back pain. My husband had just left the house for work minutes before and I was the epitomy of the "help I've fallen and I can't get up" commercial. When I tell you that I would have rather given birth to all 3 of my kids at the same time than go through that pain, I would not be exaggerating. I literally could not get off the floor and Sarah had to call 911. Because I told them at the ER that I had an MRI and a CT Scan scheduled for the next day, they medicated me and sent me home. The pain meds helped until the next day when I went for the scans at a local imaging center. Basically I was stuck on a CT scan table and it took 3 people to get me off. I had the images done, although I still don't know how. The pain came back with a vengeance and it was back to the ER. This time, they decided to draw blood and do other tests. When my hemoglobin came back at 7.2 and a host of other labs were off, I was admitted. I received 2 units of blood that night and suddenly had a consult with a hemetologist. The next day I had a bone marrow biopsy and then my world fell apart. I will never forget the look on the doctor's face or his words after the biopsy. He simply said "You have multiple myeloma. It is not curable." Nothing like softening the blow. Dr. Gloom and Doom (his new name) left the room while my husband and I struggled with his words.

Now if this wasn't bad enough, I was still in excruciating pain from the fractures at L2-L3 and the C7 fracture was coming back to haunt me. No one really cared about the lower spine fractures because apparently the vertebrae had disintegrated at C7. I was told that I should not have been physically able to be up and walking around like I had been for months. Flash forward 8 hours later and I was in an ambulance on my way to Thomas Jefferson University Hospital in Philadelphia to have emergency neurosurgery done on my neck. Upon arrival at Thomas Jefferson, I had every test known to man done. This is when my body decided it didn't want to cooperate. My white count plummeted to 0.8 and my platelets decided to follow suit and I ran a fever of 103. There would be no surgery for me that night.

I spent the next 3 1/2 weeks at Jefferson while teams of doctors would come in and evaluate me. I had everyone from attendings and residents, to interns and students. I became a great case study for them. (I'm convinced that I'm written up in a journal somewhere.) I had to check for cameras to make sure that I wasn't on Grey's Anatomy because it sure felt that way. Because the surgery was on hold, I met with the new oncologists who started me on my first cycle of Velcade and Dex. I tolerated it well with no side effects other than the Dex rush.

Finally, on October 12 I was pronounced "healthy" enough for the neurosurgery. I underwent 5 hours of surgery and am now the proud owner of 4 small rods and 8 screws in my neck. As I told you earlier, I may never make it through airport security again. If I thought the pain in my lower back was excruciating, the surgery just brought the meaning of the word pain to a whole new level. I felt as though my head had been impaled on a pole. When I mentioned this to the neurosurgeon (AKA "the Sadist") he told me "that's because your head wasn't attached to your body." Four days later the "Sadist" discharged me home. I don't remember much about coming home. Yes, the drugs were that good. I spent the next few weeks in a hospital bed in my family room trying to recover.

November would start the 2nd cycle of Velcade. What I was very grateful for is that the doctors at Jefferson coordinated the chemo treatments with Dr. Doom and Gloom and arranged to have them done at a local hospital. That saved me a 65 mile trip each way to Philadelphia 3 days a week. After the 4th cycle of Velcade and Dex ended in late December, everything was stopped for 2 weeks pending a 2nd bone marrow biopsy. My original biopsy showed 70% myeloma cells in the marrow. This second biopsy showed that it had only dropped to 40-50%. Not as big a drop as hoped for although my IgA had dropped in half and was now 1620 down from 3300. The oncologist in Philadelphia wants the bone marrow to be under 20% in order to do a SCT. With that, we have now added Revlimid to the regimen and I continue on the Velcade and Dex. I will have another bone marrow biopsy in April after 3 more cycles of the chemo and if the numbers are good, we will be planning the SCT in May or June.

It was long recovery from the surgery. It is so hard to believe that 5 months have gone by since the initial diagnosis. I still have pain in my neck and lower back, but I am so grateful to be up and walking around. I went back to work this week for the first time and while it is going to take some getting used to, I feel productive again. I have also started physical therapy this past week. Ouch! I thought I was doing great until that torture began.

Lessons learned:
  • The obvious, take one day at a time. Learn to accept help. That was the hardest for me. When you are so used to doing everything yourself, (some would say I'm a control freak) it took me forever to say "yes, I need help." I'm still working on that one, but I've come a long way. It is ok to cry and be angry. I am much stronger than I ever thought. My friends tell me that I am too stubborn to let this get me.
  • I am grateful that I have had no debilitating side effects from either the chemo or the surgery. I am grateful I am able to walk. I am grateful for my husband who puts up with the Decadron mood swings. He thought PMS was bad until he encountered this! I am grateful that I have found blogs like yours to know that I am not alone in my journey. I truly have faith in the oncologist at Jefferson. He is originally from Seattle's Hutchinson Cancer Center which is a leading SCT site. So he brings all of that knowledge to the east coast.
  • On the down side, I am petrified of my bones fracturing again. I am on monthly Zometa to hopefully prevent this. I am petrified of the impending SCT. I don't want to lose my hair. I still have days where all I want to do is cry.
***To add your story to MM Mondays Story Time copy and paste this questionnaire (click here) and send it in an email to cancerkicker at gmail dot com. I would love to share your story! -Phil


Lorna and Mike said...

Keep going girl, I'm just starting and I hope I have your strength xx.

Anonymous said...

It gets better, you adjust to living with myeloma and the treatment + the hair loss thing is petty, you will have fun with scarves and caps and maybe even wigs.

Anonymous said...

Thank you for sharing your story. You are prayed for!

Anonymous said...

My dad is just starting and I'm certain your story will encourage him! I'm rooting for you!!!

teresa said...

Loosing your hair is minor, but stock up on the hats, I'd never been so cold in my life.
I am 2 years out, life is good - stress is bad. Chin up kiddo nobody helps you like you.
I have 9 fractured vertebrea and lead an active life. The docs do not expect them to heal, but you know what? physical therapy taught me to use other muscles and not limit myself. A good back brace, some PT and you can do just about anything but fall on your butt.

Yellow Rose said...

Jodi, after what you've been through, the SCT will be a breeze. Don't stress over losing your hair. I wore beautiful silk scarves as a wig in Houston during our brutal summer is miserable. Your hair will begin to grow three months from SCT and you'll be good to go three months after that. Best wishes to you. Try to see the SCT as the miracle it is.

Lori said...

hey Jodi, on September 30th I will be celebrating 1 year post stem cell transplant ... I had my head shaved Oct 2, because after 3 days of losing my hair the nurses said enough already ... who knew you could have so much hair. The good news is that I did not have to shave my arms or legs for about 9 months, or pluck my eyebrows ... the chin hairs cont'd to grow however. I stocked up on scarves. I did not want to do a wig and because it was over the winter, I needed hats. It gets cold here in Canada :) I am proud to say that now instead of long straight hair I have what my friends have termed "chemo curls" ... folks actually thought I had a perm. Seriously, I like you was concerned about my hair, but after every thing else, it is just hair. I wish you the best of luck in your upcoming treatments. You are a brave and courageous woman.
On Friday I saw my family dr. and she told me that my hemoglobin was 8 just before I started Dex, I was still working, trying to go to the gym etc. and she had no idea how I was walking let alone still functioning. She told me that I have surprised many by what I have accomplished in a year and I hope that you surprise everyone too!

Jodi said...

Quick update.......Yes, I have now lost my hair. And you know what? When it started falling out 10 days after a cycle of IV cytoxan, I couldn't wait to get rid of it. For all my concerns, I think I have dealt with the hair loss in fine fashion. I am now the proud owner of "Miranda." Why do wig companies name their products like that? Actually, I want to know how I can get such a job and how much it pays. With Miranda, I never have a bad hair day and as a bonus, I get to sleep a half hour later each morning and still make it to work on time.
I am about to do one more round of cytoxan next week and then finally, hopefully, collect my stem cells and begin the transplant process.
This week marks the anniversary of my diagnosis and has brought on some pretty powerful emotions. Looking back, I wasn't sure I would be here this September. Now, I am planning many more Septembers.
Thank you all for your kind thoughts and prayers. I wish you all the best.



Amy said...

Jodi, you are a true inspiration to me. I was diagnosed Nov. 5th 2010, stage 3a. I havent had a full dose of chemo yet due to my low hemoglobin and or low plt. count. My oncologist has just turned me over to Emory Hospital in Atlanta GA. where hopefully they can figure me out. I just wanted you to know you sense of humor is wonderful and thank you for the smile you have put on my face. Your a trooper.