It is difficult for me to type and update this blog but I know I must.
Cataracts in both eyes make it a chore to see the keys and the type on the page. I will do my best to edit and spell-check, but I am sure there will be mistakes (heaven forbid!)
I went in to UIC for a couple of pre-transplant procedures and they were not fun. I lost all of my hair on Leap Day-thankfully, I only have to remember that anniversary every four years! I never realized how cold one’s head can get without hair! I was finally admitted for my autologous stem cell transplant on March 19, 2008. I received two days of high-dose chemo, and on the third day, I received my own stem cells back that had been collected over a three-day period earlier. Then the “fun” part began. I was totally turned off by any food. I certainly didn’t want to smell any hot food but I just couldn’t eat anything. That lasted about 9 days and I was supported thru IV nourishment. Of course, Donnie, my sisters, Mom, and a niece and sister-in-law came to visit but I was not into visiting. Phone calls and text messages from family and friends kept me going, too. I was released on April 8th, after 19 days.
One current protocol has been for the patient to undergo a tandem (second) transplant within a year and I told them that they had better get some pre-hospitalization incentives to entice me to come back for more of the same. A dinner out with my husband and a massage come to mind.
Anyway, I have tolerated the transplant pretty well and am on my way. Around day 100 post-transplant (late June), I will have another biopsy to see where I stand. Keep those prayers a-comin!
I certainly know that I would be in quite a different place without all the love, prayers, and support that I have received. I am thankful to you for helping to plead my case to a higher authority and to God for listening and interceding.
I hope to post again soon with more good news.
Friday, May 16, 2008
Monday, October 22, 2007
Another Update/Set-back
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.
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, 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.
Saturday, December 2, 2006
Saturday, December 2nd, 2006
After having breakfast, I got all my medicine out this afternoon and checked each off the list as I took the required doses out of the vials. I took the medicine with a prayer for it all to work. My sister LeiLani sent this prayer to me;
Almighty and Eternal God,
You are the everlasting health of those who believe in You.
Hear us for Your sick servant, Donna, for whom we implore the aid of Your tender mercy, that being restored to bodily health; she will be able to give You thanks, through Christ our Lord.
I have received many email messages from my IAWP colleagues and friends. In addition, the board sent a beautiful Dieffenbachia plant with a “Get Well” balloon. It is very much appreciated by me and thoughtful of them to send their show of support in this manner.
My Mom called Friday to say that she has included my prayer intention on the prayer list in her church and several of her Garden Club members have done the same. I can feel the healing prayers.
My Niece, Laine has sent some quotes to me because she will not be out-done by other family members. The last sentence she wrote, I thought was a quote and laughed when I realized it was her way of saying she had to one-up the rest of the lovely quotes I have received and about which I have written. Here is her submission:
"We can let circumstances rule us, or we can take charge and rule our lives from within.” -Earl Nightingale
Great advice, if I ever heard any!
Donnie & I “celebrated” our wedding anniversary on November 30th, (23 + 4 years, if you know what I mean.) He gave me a dozen beautiful red roses that have really opened up today.
Therefore, I have a display in the living room and in the kitchen to admire every time I pass by them. They are very uplifting!
I haven’t felt too much difference since taking the medicine cocktail today. It’d be nice if this continued. I read the pamphlet that came with the Thalidomide and they suggest taking it an hour after dinner. I think that this may be the way to go. I will start taking it at night tomorrow evening and see how I respond to it. I have started down that long road…
Almighty and Eternal God,
You are the everlasting health of those who believe in You.
Hear us for Your sick servant, Donna, for whom we implore the aid of Your tender mercy, that being restored to bodily health; she will be able to give You thanks, through Christ our Lord.
I have received many email messages from my IAWP colleagues and friends. In addition, the board sent a beautiful Dieffenbachia plant with a “Get Well” balloon. It is very much appreciated by me and thoughtful of them to send their show of support in this manner.
My Mom called Friday to say that she has included my prayer intention on the prayer list in her church and several of her Garden Club members have done the same. I can feel the healing prayers.
My Niece, Laine has sent some quotes to me because she will not be out-done by other family members. The last sentence she wrote, I thought was a quote and laughed when I realized it was her way of saying she had to one-up the rest of the lovely quotes I have received and about which I have written. Here is her submission:
"We can let circumstances rule us, or we can take charge and rule our lives from within.” -Earl Nightingale
Great advice, if I ever heard any!
Donnie & I “celebrated” our wedding anniversary on November 30th, (23 + 4 years, if you know what I mean.) He gave me a dozen beautiful red roses that have really opened up today.
Therefore, I have a display in the living room and in the kitchen to admire every time I pass by them. They are very uplifting!
I haven’t felt too much difference since taking the medicine cocktail today. It’d be nice if this continued. I read the pamphlet that came with the Thalidomide and they suggest taking it an hour after dinner. I think that this may be the way to go. I will start taking it at night tomorrow evening and see how I respond to it. I have started down that long road…
Thursday/Friday November 30/December 1, 2006
I spent these two days working with the doctor's office, the pharmacy, my prescription insurance carrier, and the drug manufacturer to obtain the needed oral chemo medicine at a feasible cost. Originally, I was informed that this medicine costs $4000.00 a month. Our secondary pharmacy insurance carrier submitted the request and came back with my co-pay of $1500.00. Uh, a little steep even for one who wants to live. My primary insurance returned with a co-pay of $998.00. No wonder people chose to forego treatment! I guess this is what they mean when they refer to the under-insured or the insured poor. So, Thursday ended on a low note knowing the medicine was at the pharmacy, but just out of reach financially.
On Friday, more phone calls by my pharmacy technician, Izzy, and me. She has been in contact with all of the same people I was calling. At about 4:30 PM, Izzy called me to say that she had gotten an approval from my primary pharmacy insurance carrier to provide the medicine at a co-pay of just $15.00. That's right, negotiations were successful!
After work, I stopped and picked up the medicine. I had the beginning of the treatment for this cancer in my hand. Saturday would be the day.
On Friday, more phone calls by my pharmacy technician, Izzy, and me. She has been in contact with all of the same people I was calling. At about 4:30 PM, Izzy called me to say that she had gotten an approval from my primary pharmacy insurance carrier to provide the medicine at a co-pay of just $15.00. That's right, negotiations were successful!
After work, I stopped and picked up the medicine. I had the beginning of the treatment for this cancer in my hand. Saturday would be the day.
Tuesday, November 28, 2006
Tuesday, November 28, 2006
I saw my hairdresser today and told them about my diagnosis. More hugs and support. I received a neat quote vial e-mail from my sister Charlotte; "Nobody can go back and start a new beginning, but anyone can start today and make a new ending." - Maria Robinson
Another person posted for me to check out www.myeloma.org which I did. One of my colleagues will be bringing me his copy of Lance Armstrong's book. I have my reading list started.
I went to the oncologist to get a new Thalidomide prescription because of problems getting the drug in this area. I turned it in to my local (chain) drugstore and hopefully, they will get it by Thursday. Let's get this party started. It'll be the only cocktail I'll be having for quite some time. :(
I went to work and received supportive news on my job position during my illness. I actually started working for a while and ended up putting in four hours. I saw HR and they are on the case now.
I told a couple more friends and, though it's bad news, I have support and prayers from that many more people.
I received some great e-mail messages, one from my sister-in-law, Debbie and a follow up message from my Niece, Heather. They are both riot's. I look forward to more of their fun messages and demented disease humor.
Another person posted for me to check out www.myeloma.org which I did. One of my colleagues will be bringing me his copy of Lance Armstrong's book. I have my reading list started.
I went to the oncologist to get a new Thalidomide prescription because of problems getting the drug in this area. I turned it in to my local (chain) drugstore and hopefully, they will get it by Thursday. Let's get this party started. It'll be the only cocktail I'll be having for quite some time. :(
I went to work and received supportive news on my job position during my illness. I actually started working for a while and ended up putting in four hours. I saw HR and they are on the case now.
I told a couple more friends and, though it's bad news, I have support and prayers from that many more people.
I received some great e-mail messages, one from my sister-in-law, Debbie and a follow up message from my Niece, Heather. They are both riot's. I look forward to more of their fun messages and demented disease humor.
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