Since last writing, I continued on Revlimid as an oral chemo and had started my third round on October 11th. My protein level had been going down (protein shows doctors if cancer cells are multiplying). However, a subsequent blood test revealed that my protein level has gone up. So, now a new plan of attack: I have to have a MUGA (multiple-gated acquisition scan) a non-invasive nuclear test that uses a radioactive isotope called technetium to evaluate the functioning of the heart's ventricles before I can receive the go-ahead to start IV chemo at the Hammond Clinic. Once I pass this test, I will have an IV port inserted in my chest to receive chemo twice a week for an unspecified (as of now) period of time. As soon as I finish the required protocol, I will have a bone marrow biopsy done, and if the chemo has done its job, I will go to UIC for the bone marrow harvest, high-dose chemo, and stem cell transplant. I hope that after all of this I will be in remission. So, once again, I ask for your prayers to get through this next phase in my dilemma. Donnie has been wonderful throughout the past year, and I know first-hand how he responds to the "better or worse" and "in sickness and in health" part of our marriage.
I missed the annual IAWP conference in September but the gals called and passed the phone around so I could talk to everyone who was near-by. Then, they sent me a "care package" including a giant card signed by a host of colleagues from around the world. I could only read a few comments at a time because my eyes got too teary to read. What a thoughtful, pleasant surprise to receive.
Monday, October 22, 2007
Monday, September 17, 2007
Another Update!
My sister Dolly sent this quote to me, "Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a 'healing' cures our illness or lifts our burden. But sometimes we are 'healed' by being given strength or understanding, or patience to bear the burdens placed upon us."
Now back to our story; after completing the 4-month protocol of oral chemo, a bone marrow biopsy showed that the cancer level had decreased from 60% to 4.3%! I was ready to head up to UIC. A week after the biopsy, I fell down the stairs at home; not just a few but 13! When I stopped rolling, I was at the bottom of the stairs in a heap up against the outside door. I lay there a few minutes and nothing seemed to hurt, so I got up and assessed myself. I had a long scrape on my right elbow and a bruise starting to form on my left bicep, not to mention my glasses being broken in 2 pieces. Anyway, I had to go to the doc for my weekly blood test that day and I told him about the fall. He sent me for an X-ray, which showed no problems. About 12 days later, my back, right between my shoulder blades, started hurting if I moved the wrong way. Then, within a few days, it became constant and I couldn't bear the pain! I went back to the doctor and he put me in the hospital on 5/14 so they could manage the pain and figure out what was wrong. I went thru a battery of x-rays, CT scans, & MRI's. Finally, the MRI showed a crushed vertebra. A spinal specialist did a Kyphoplasty operation, which is minimally invasive, and fixed the fracture. They sent me home to heal and within 5 days, my back was killing me again! They put me back into the hospital and just like before, the MRI showed a different fracture, which was missed because when they fixed the first fracture, it pulled the fracture below it up where it could now be seen. They were careful to review the films and reports to make sure there were no other fractures. I was sent home and within 2 days, I was back at the hospital. More tests and two other fractures were noted and repaired. Long story even longer, it was discovered that I fractured a number of vertebrae and was hospitalized (three separate times) having three separate surgeries and three separate sets of x-rays, CT scans, and MRI's. When they repaired one, another vertebra would show a fracture soon thereafter. They had to wait to do each surgery due to my being on blood thinners. I was released from the hospital on 6/27 with this HUGE, inflexible torso cast/brace that weights about 12 pounds. I have to wear it whenever I am out of bed. I still have three other linear vertebrae fractures and another in my tailbone that are healing on their own with the aid of the brace. I am sleeping in a hospital bed but thankfully don't have to wear the brace in bed.
So, needless to say, I missed my appointed UIC visit and was off of the oral cancer med so long, my doctor’s decided to put me on a different oral chemo med for one to three months, depending on how my body and the cancer reacts to it. I started the new med on 8/16, so that means that I will probably go to UIC in early November, barring any other set backs!
I am going to have to take an early disability retirement from work due to this cancer. I have nearly 26 years on the department, so the years have accumulated for retirement but I still have 7 1/2 years before I reach retirement age. So, I have a lot of paperwork to do and hoops to jump thru before I can sit back and rest.
Anyway, as of today, I am still wearing the back brace but my back seems stronger as time drags on. The new oral cancer med hasn't hit me too hard. I have started the second round. There are a few side effects, such as muscle and bone pain and my vision is adversely affected.
Thanks for all of the good thoughts and prayers; I sure can use them. My Mom sends me a card every week. They always make me tear up, but they are good tears. My sisters continue to call to cheer me up. I have analyzed what each of them offer when they call, and surprisingly, I have discovered that each of them have something unique to say to help take my mind off my troubles.
I hope to be able to write again after the next biopsy before I go to UIC. Thank you to all of you who are concerned for my well-being.
Now back to our story; after completing the 4-month protocol of oral chemo, a bone marrow biopsy showed that the cancer level had decreased from 60% to 4.3%! I was ready to head up to UIC. A week after the biopsy, I fell down the stairs at home; not just a few but 13! When I stopped rolling, I was at the bottom of the stairs in a heap up against the outside door. I lay there a few minutes and nothing seemed to hurt, so I got up and assessed myself. I had a long scrape on my right elbow and a bruise starting to form on my left bicep, not to mention my glasses being broken in 2 pieces. Anyway, I had to go to the doc for my weekly blood test that day and I told him about the fall. He sent me for an X-ray, which showed no problems. About 12 days later, my back, right between my shoulder blades, started hurting if I moved the wrong way. Then, within a few days, it became constant and I couldn't bear the pain! I went back to the doctor and he put me in the hospital on 5/14 so they could manage the pain and figure out what was wrong. I went thru a battery of x-rays, CT scans, & MRI's. Finally, the MRI showed a crushed vertebra. A spinal specialist did a Kyphoplasty operation, which is minimally invasive, and fixed the fracture. They sent me home to heal and within 5 days, my back was killing me again! They put me back into the hospital and just like before, the MRI showed a different fracture, which was missed because when they fixed the first fracture, it pulled the fracture below it up where it could now be seen. They were careful to review the films and reports to make sure there were no other fractures. I was sent home and within 2 days, I was back at the hospital. More tests and two other fractures were noted and repaired. Long story even longer, it was discovered that I fractured a number of vertebrae and was hospitalized (three separate times) having three separate surgeries and three separate sets of x-rays, CT scans, and MRI's. When they repaired one, another vertebra would show a fracture soon thereafter. They had to wait to do each surgery due to my being on blood thinners. I was released from the hospital on 6/27 with this HUGE, inflexible torso cast/brace that weights about 12 pounds. I have to wear it whenever I am out of bed. I still have three other linear vertebrae fractures and another in my tailbone that are healing on their own with the aid of the brace. I am sleeping in a hospital bed but thankfully don't have to wear the brace in bed.
So, needless to say, I missed my appointed UIC visit and was off of the oral cancer med so long, my doctor’s decided to put me on a different oral chemo med for one to three months, depending on how my body and the cancer reacts to it. I started the new med on 8/16, so that means that I will probably go to UIC in early November, barring any other set backs!
I am going to have to take an early disability retirement from work due to this cancer. I have nearly 26 years on the department, so the years have accumulated for retirement but I still have 7 1/2 years before I reach retirement age. So, I have a lot of paperwork to do and hoops to jump thru before I can sit back and rest.
Anyway, as of today, I am still wearing the back brace but my back seems stronger as time drags on. The new oral cancer med hasn't hit me too hard. I have started the second round. There are a few side effects, such as muscle and bone pain and my vision is adversely affected.
Thanks for all of the good thoughts and prayers; I sure can use them. My Mom sends me a card every week. They always make me tear up, but they are good tears. My sisters continue to call to cheer me up. I have analyzed what each of them offer when they call, and surprisingly, I have discovered that each of them have something unique to say to help take my mind off my troubles.
I hope to be able to write again after the next biopsy before I go to UIC. Thank you to all of you who are concerned for my well-being.
Sunday, February 18, 2007
Finally, an UPDATE!
For whatever reason, I can get into the blog today, so here I am.I will try to update you from the last point I posted.On December 27th, the levels in my system appeared to show remission after only four weeks on the oral chemo cocktail. The doctor was shocked as were we when he told us. Of course, I must say that all of the prayers that have been said and are still being said was the reason for the dramatic remission I experienced.
After the good news of the remission, I had trouble with high blood pressure that has ultimately been taken care of with medicines.
I stopped working at the PD on December 27th due to the high blood pressure, and chemo meds which caused a great deal of mental confusion and blurred vision. I couldn’t read the computer, nor could I drive. That was a real wake up call for us.
Then, on January 5th, I began to experience severe swelling in my right leg, complete with a great deal of pain. I was already scheduled to go to UIC (University of Illinois at Chicago) on Monday, the 8th, for my initial consultation with the oncology team there, but on Monday morning, Donnie called my doctor and he had us come in to the office so he could take a look at the leg. After an ultrasound, I was ordered straight to the hospital where I would spend the next week on more blood thinners to get rid of the blood clot (DVT) that had formed. I was disappointed to have missed the UIC appointment. It was rescheduled for January 22nd. The DVT was still present even then and was a major concern to my doctors, so I had to get rid of the DVT before I could continue any further treatment, including the oral chemo.
Finally, on February 13th, I was put back on the oral chemo meds. The doctor wants me to continue the therapy for three months and have another bone marrow biopsy, to see how much cancer is in the marrow before I can go to UIC for the bone marrow harvest and IV chemotherapy. They want to make sure that the harvest is as “clean” as it can be so that I can get a good outcome when they reintroduce the stem cells.
Therefore, we are still looking at May 2007 for the stay at UIC. I was hoping to be up there this winter to get through the treatment while the weather was bad, but it was not meant to be.
I have had friends and strangers alike sending special messages, prayers, and gifts. A number of people have told me that they have signed up in my honor to walk, run, ride, and donate to the National Leukemia and Lymphoma Society fundraisers that are being held this year. It is a real tribute to people's tender hearts to be thought of in this manner . I so appreciate the thoughts and efforts of friends and family to educate people about Multiple Myeloma.
So, until next time, thank you all for the prayers, love, and support.
After the good news of the remission, I had trouble with high blood pressure that has ultimately been taken care of with medicines.
I stopped working at the PD on December 27th due to the high blood pressure, and chemo meds which caused a great deal of mental confusion and blurred vision. I couldn’t read the computer, nor could I drive. That was a real wake up call for us.
Then, on January 5th, I began to experience severe swelling in my right leg, complete with a great deal of pain. I was already scheduled to go to UIC (University of Illinois at Chicago) on Monday, the 8th, for my initial consultation with the oncology team there, but on Monday morning, Donnie called my doctor and he had us come in to the office so he could take a look at the leg. After an ultrasound, I was ordered straight to the hospital where I would spend the next week on more blood thinners to get rid of the blood clot (DVT) that had formed. I was disappointed to have missed the UIC appointment. It was rescheduled for January 22nd. The DVT was still present even then and was a major concern to my doctors, so I had to get rid of the DVT before I could continue any further treatment, including the oral chemo.
Finally, on February 13th, I was put back on the oral chemo meds. The doctor wants me to continue the therapy for three months and have another bone marrow biopsy, to see how much cancer is in the marrow before I can go to UIC for the bone marrow harvest and IV chemotherapy. They want to make sure that the harvest is as “clean” as it can be so that I can get a good outcome when they reintroduce the stem cells.
Therefore, we are still looking at May 2007 for the stay at UIC. I was hoping to be up there this winter to get through the treatment while the weather was bad, but it was not meant to be.
I have had friends and strangers alike sending special messages, prayers, and gifts. A number of people have told me that they have signed up in my honor to walk, run, ride, and donate to the National Leukemia and Lymphoma Society fundraisers that are being held this year. It is a real tribute to people's tender hearts to be thought of in this manner . I so appreciate the thoughts and efforts of friends and family to educate people about Multiple Myeloma.
So, until next time, thank you all for the prayers, love, and support.
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