Denise Dorsten

First post: Nov 18, 2016 Latest post: May 10, 2017

On April 14, 2016 I received a phone call that would forever change my life. 

It all started with, what I thought was a simple back ache.  I lifted my dad's walker into my car and, pow, the pain started.  The next morning I couldn't get out of bed.  The pain was so intense I went to the ER.  Nothing there but pain meds and muscle relaxers.   A week passed and the pain was not much better so I schedule an appointment with an orthopedist.  I went to my appointment and he changed my muscle relaxers to a steroid to reduce swelling.  I came back a week later with the same pain but not as intense.  He suggested a MRI and I agreed.  The report came back with edema in the bone marrow and some changes in my T-spine.  The radiologist recommended Protein Electrophoresis blood work and a nuclear bone scan.  Of course, I went to these appointments like a good girl and awaited the results.  In the meantime, the pain that came so quickly, left about as quickly.

I was in Las Vegas for our Annual Leadership Meeting.  The last morning, April 14, 2016, my phone rang.  I didn't recognize the number and was not going to answer it, but I did.  It was my ortho doctor.  He told me the lab work came back abnormal and he was sending me to another doctor, a hematologist.  He mentioned monoclonal gammopathy and told me not to read a lot into what he knew I was going to research that I needed to see the hematologist.  Well, of course, I Googled monoclonal gammopathy and the one thing that overshadowed all the other reasons I would have this is Multiple Myeloma.  As you can probably imagine I broke down and then called David.  The great husband that he is was very supportive and comforting but I didn't want to hear wait until you see the doctor.  Then I Googled the hematologist and found she is an oncologist.  I knew then that this was not a good thing.  One of my co-workers, Lisa,  stopped by my room and I told her what was going on.  We cried together, regrouped and went down to the general session of our meeting.   I am not sure when that day, but I told my good friend and boss, Chris.  Again, we cried, regrouped and continued through the rest of the day.  How I did this I really don't know.  I was numb.  On the plane trip home I researched monoclonal gammopathy and Multiple Myeloma.  If this was truly MM I had a long road ahead of me to even get it in remission and then the prognosis I was reading wasn't that great.

Next to the phone call to David that morning, telling my kids what was going on was very difficult.  Many of you reading this know how much my family means to me.  Not only David and my kids, but Heather (my daughter-in-law), Rob (Doug's significant other) and my two beautiful granddaughters (Karlie and Ayden) are my entire world and life.

Around April 21st I had the appointment with Dr. McClure (the oncologist).  She reviewed all of the lab work and explained the proteins, gamma and kappa light chains, M-spike and other medical terms.  I was not really listening.  Then the suspected diagnosis came out of her mouth, Multiple Myeloma.  I broke down.  She explained the next steps and I agreed.  Next steps was a bone marrow biopsy

On April 29th, I had my first bone marrow biopsy.  I was very anxious as I didn't know what to expect.  I was knocked out which was a good thing.  The recovery from this was minimal with little pain.  Now the wait for the results. 

Over the next two weeks this whole thing consumed me.  All I did was Google and read.  I was on the Leukemia and Lymphoma, Multiple Myeloma Research Foundation and many other web sites gathering as much information so when I did go back for the results I would have questions to help me make decisions.

On May 11th, I saw Dr. McClure again.   She confirmed the diagnosis, Multiple Myeloma.  She explained the treatment regimen.  It sounded benign.  Chemo and a bone marrow transplant.  What could be hard about that.  Little did I know. 

I received a call from her nurse later that day letting me know everything was authorized and I needed to come in to sign some paperwork.  I signed the consent form for Revlimid and then had to go on their web portal to complete a survey.  I had to agree to not share my medication, protect from getting pregnant (ha ha), keep out of reach of children, etc.  I have never been through such an experience. 

I received a call from a Celgene rep (Revlimid's manufacturer).  We went over the same stuff.  Then, I had to talk to a pharmacist to only have to repeat the answers to the same questions.  Keep in mind, this happened every two weeks when I needed to renew my prescription.  And, there are no refills on this.  I had to call the doctor's office to get them to send in a Rx.  I was so diligent about staying on schedule so that I could coordinate the cycles with my other chemo drug, Velcade.

The treatment course was the Revlimed capsules for 14 days and off 7.  Then I take a Velcade subcutaneous injection in my tummy every Friday.  Oh, and 40mg of Dexamethasone on the Friday's I get the Velcade injection.  I also get Zometa infusions once a month to promote healthy and strong bones.

Every Friday morning I go the Deke Slayton Cancer Center to get my Velcade injection.  I anxiously wait for the CBC results.  Good news, I have never had to postpone my treatment because of my blood results.

I have had very few side effects.  I am fatigued a lot these days and I am losing my hair a few strands at a time.  Talk about a thinning.  I really needed it but not like this. 

I have continued to work through all of this and even traveled until August 2nd.  I came home from Omaha, NE on August 2nd.  I went the next morning for my injection.  Like most Fridays, on my way home I pick up lunch for my dad and I.  I was craving a Whatburger.  I got home and sat down to eat my hamburger and couldn't take more than two bites.  It just didn't taste the way I wanted.  I felt tired so I laid down for what I thought would only be a hour.  I was woke by David when he got home three hours later.  I didn't feel good.  I took my temperature and it was 104.0.  I got another thermometer because I thought that is just not accurate.  Oh, but it was.  I called my oncologist's nurse.  She called me back immediately.  She said, "Let me clarify, is the temp 104 and 100.4."  I told her 104.0 and off to the ER I went. 

It turned out to be pneumonia and admission was 6 days over to admissions.  I won't go into the whole ordeal but I got over it.

I have completed the required 6 cycles of chemo.  During this time my blood work was monitored.  All of the protein tests are pretty much back to normal values.  The chemo is working.  I had another bone marrow biopsy and the percentage of plasma cells in my marrow (an indicator) is at 5% which is good enough for the next step, a bone marrow transplant.

On November 3rd, I had a consult at Methodist Hospital in Houston with a bone marrow transplant oncologist, George Carrum.   Love him and his team.  He asked numerous questions, reviewed my results and determined I was a candidate for an autologous bone marrow transplant.  I will go more into detail as to what that means when I get to that part of next steps.

I have been scheduled December 6th and 7th for testing.  I will have an echocardiogram, pulmonary function testing, lab work, another bone marrow biopsy and attend a transplant class.  A stress test is also part of the testing but I had one last year and the results of that was sufficient.

Once all the results are in I will go back in to see Dr.  Carrum.  If all is good, I will schedule the stem cell harvest.  This will require me to take shots of Neupogen over 4 days to stimulate stem cell production.  This usually happens over a weekend.  I will go to Methodist Monday or Tuesday and the harvest will be done.  I will be connect to a machine that will take my blood, remove the stem cells then give me my blood back.  I will be donating my own stem cells back to myself.  About 6 million of these little buggers will be harvested.  I will receive 1/2 of them during the transplant and the other 1/2 will be frozen and saved in the event I ever need another transplant.  At this point we will schedule the insertion of a port and the admission for the transplant. 

I will be admitted to Methodist and will be in the hospital for approximately 3 weeks if all goes well.  I receive chemo one day and a few days after that the transplant.  From there recovery begins.

Now that I have caught everyone up to today, November 18, 2016, I will start posting to my journal. 

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