We found out last week that I wouldn't have to travel to Salt Lake to get the results of all the tests they took. That was good news to us, we felt that if they we going to let Dr. Te give us the results in St. George that things probably were pretty good and there were not surprises in the latest test results.
I had the appointment scheduled with Dr. Te last Friday for my monthly checkup and to get my Zometa (spelling ?) which is the intravenous version of what is advertised as Boneva on the TV. We went up Thursday night so I could give them some more blood - only 3 vials this time - and then went to Coral Canyon for the night. We went out there by way of Telegraph Street through downtown Washington and they are almost complete with the street rebuild project that has been going on. It's still a little strange not to see the old Nisson Market building across from the school, but the road is very nice and will help getting traffic through that area.
Friday morning we got up and went to my appointment at 9:00 am. We met with Dr. Te and were a little surprised when he asked if I had been to Salt Lake yet. We told him that Cindy at LDS Hospital had told me that he would be giving me the results. So he said that he and Dr. Peterson had talked and these were the results: The pathology report for the Bone Marrow Biopsy that was performed on 9/30/2011 showed a Plasma cell population of <1% of the cells associated with my Multiple Myeloma. In other words, everything worked pretty well. We asked him what that meant and he told us we achieved a "partial remission". We were hoping for total remission of course, but based on everything we'd gone through and our earlier talks with Dr. Peterson and Dr. Te, I'm not surprised that there is still a little bit hanging around. The number was around 15% +/- before my first transplant so I'm sure some of them made it to the transplant samples. I will be starting my maintenance routine sometime within the next couple of weeks. I believe I will be on a 5mg Revlimid tablet every day to begin with. I'm not sure how it works but Dr. Te said that at least for the 5mg dose, I most likely will not have to take the lovenox (blood thinner shots) or any steroid treatment for now. After some period of time the dose may be increased to 10mg or even eventually to 15mg depending on how I'm doing and what future Bone Marrow Biopsies may tell them. I'm sure I'll have to have further Biopsies at 6 month or 1 year intervals for the next few years.
Of course, we were hoping to hear that we got a full remission, but we knew I'd have to be on maintenance for a while anyway. We talked to a lady that has been in remission from MM for a couple of years. She told us of someone she knew had a small residual and went on maintenance and achieved a full remission that way. I am hopeful we can do the same as Revlimid worked pretty good for me before. I am glad it is a small dose so I can hopefull keep feeling as good as I now do. It was pretty difficult before to keep functioning at a high level when I was on the 25mg dose last year, so I hope the 5mg dose can be working in the back ground and I can still be as operational as I am today. My hair is really growing now and although it will be a while before I need a brush to keep it under control, it won't be too long before I'm going to have to have my hair trimmed around my ears and on my neck.
Thanks to all of you for your continued support, well wishes, good thoughts and of course prayers in our behalf.
I have to add just one more thing. This Saturday Oct. 22nd is the national make a difference day. Here in North Las Vegas, over 2100 members of the North Las Vegas Stake (LDS Church) have signed up to provide service to our City and community members. We will be cleaning around many City facilities and cleaning yards of many senior citizens and citizens in need. It is my understanding that this large of a group of volunteers has caught the eye of some national press so there may be a little blurb about our group in some news outlets. Don't know what they'll say, but we'll be the ones in the yellow "helping-hands" vests. The City is going through some pretty rough times and because of all the employee reductions and lay-offs we've been through lately, the City will really benefit from the help.
Monday, October 17, 2011
Monday, October 10, 2011
10/10/2011 Still Waiting
It's been a little over a week since we went to St. George to take all the tests for my 100 day check up. I haven't heard from Dr. Te or from LDS Hospital yet about an appointment with either of them to get my results. I'm going to contact them tomorrow or Wednesday to see if any plans are being made to get me the results. I guess if they aren't in a real hurry to see me, that is a good sign, at least we are taking it as that. So as soon as we hear anything, we'll pass it on.
Josh came up to visit (meaning Addie) this weekend, he finished his first rotation last Friday and didn't have to start his second one at Luke Air Force Base until tomorrow (Tuesday) morning. He enjoyed his first rotation and learned a lot about that type of a Pharmacy. It supplies medicines to care and rehabilitation type facilities, so it doesn't have walk-in retail clients. Josh has always said it is the type of business that he would like to maybe own some day. He finishes his second rotation the week before Thanksgiving and we are planning on going to Phoenix that weekend to move him out of his apartment and up here since the time between then and New Years and then the first 12 weeks after that will all be spent up here and in St. George before he has to go back to Phoenix for his final 6 week rotation and graduation. It will be a busy time for us since Patty will be busy helping all her staff getting ready for their Christmas setups and I will be moving my office to the new North Las Vegas City Hall that will be opening about the same time.
On another note, we did something today that we've been talking about doing for several months. We canceled our home phone number, so to get hold of either myself of Patty, you'll need to contact us on our cell phones. We just didn't use the home phone enough to justify it.
Until next time. Thanks for thinking of us.
Josh came up to visit (meaning Addie) this weekend, he finished his first rotation last Friday and didn't have to start his second one at Luke Air Force Base until tomorrow (Tuesday) morning. He enjoyed his first rotation and learned a lot about that type of a Pharmacy. It supplies medicines to care and rehabilitation type facilities, so it doesn't have walk-in retail clients. Josh has always said it is the type of business that he would like to maybe own some day. He finishes his second rotation the week before Thanksgiving and we are planning on going to Phoenix that weekend to move him out of his apartment and up here since the time between then and New Years and then the first 12 weeks after that will all be spent up here and in St. George before he has to go back to Phoenix for his final 6 week rotation and graduation. It will be a busy time for us since Patty will be busy helping all her staff getting ready for their Christmas setups and I will be moving my office to the new North Las Vegas City Hall that will be opening about the same time.
On another note, we did something today that we've been talking about doing for several months. We canceled our home phone number, so to get hold of either myself of Patty, you'll need to contact us on our cell phones. We just didn't use the home phone enough to justify it.
Until next time. Thanks for thinking of us.
Sunday, October 2, 2011
10/2/2011 And now we wait
Yes, it has been a while again, but I warned everyone.
Last Thursday Sept. 29th marked day 100 since my second stem cell transplant and so it was time for me to take all the tests to see how things are going. Patty and I went to St. George wednesday evening and then got up thursday morning so I could go give about 7-8 vials to the lab. Then I went across the hall to get some full body X-rays to see if any more bone damage is happening. Then in the afternoon I had an appointment with a pulmonary specialist to check to see if the Chemo has effected my lung and breathing like sometimes it can. Then we got to go get something to eat since they didn't want me to eat before the pulmonary tests.
Friday morning I had an appointment with Dr. Te to get another bone marrow biopsy in my hip to get an accurate reading on what's going on inside of me. I like to get knocked out for these, so after waking up at Dr. Te's, Patty took me back to Coral Canyon to sleep for most of the day. After I woke up I had to go back to the lab one more time to give them a couple more samples for the testing.
Now we wait. Some of the tests take nearly a week to get the results and so I believe that sometime this week I will get contacted by LDS hospital to arange for a quick trip up to Salt Lake to the the results of all the tests and get the plan for maintenance for me over the next year or so.
We got up Saturday and came back to Vegas. We enjoyed a good conference weekend and always enjoy hearing the messages given.
I'm feeling real good and my hair is growing very quickly. We are looking forward to hearing some very good news so we can get on with getting back to a little more normal life. We do thank everyone for their continued support during this time in our life.
Until the results come in.
Last Thursday Sept. 29th marked day 100 since my second stem cell transplant and so it was time for me to take all the tests to see how things are going. Patty and I went to St. George wednesday evening and then got up thursday morning so I could go give about 7-8 vials to the lab. Then I went across the hall to get some full body X-rays to see if any more bone damage is happening. Then in the afternoon I had an appointment with a pulmonary specialist to check to see if the Chemo has effected my lung and breathing like sometimes it can. Then we got to go get something to eat since they didn't want me to eat before the pulmonary tests.
Friday morning I had an appointment with Dr. Te to get another bone marrow biopsy in my hip to get an accurate reading on what's going on inside of me. I like to get knocked out for these, so after waking up at Dr. Te's, Patty took me back to Coral Canyon to sleep for most of the day. After I woke up I had to go back to the lab one more time to give them a couple more samples for the testing.
Now we wait. Some of the tests take nearly a week to get the results and so I believe that sometime this week I will get contacted by LDS hospital to arange for a quick trip up to Salt Lake to the the results of all the tests and get the plan for maintenance for me over the next year or so.
We got up Saturday and came back to Vegas. We enjoyed a good conference weekend and always enjoy hearing the messages given.
I'm feeling real good and my hair is growing very quickly. We are looking forward to hearing some very good news so we can get on with getting back to a little more normal life. We do thank everyone for their continued support during this time in our life.
Until the results come in.
Monday, August 22, 2011
8/22/2011 Long, Long, Long Time NO Blog
You may or may not have noticed, I came home from Salt Lake and dropped out of the blogger's universe. I thought about it several times, even sat down a couple of times to write a quick word or few, but never signed in and actually wrote and posted anything.
Aside from my being extremely lazy was the fact that I really don't have anything much to write about. Since we've been home, everything is going very well, I have seen Dr. Te a couple of times and had standard blood tests taken each week. Everything they are testing for is coming out entirely normal. I am back to work full time (nearly) and am nearly weaned off any nausea medicine - not totally, but not too much. The testing that will probably be extended to bi-weekly will go until the end of September when I get the full range of tests done to see how well the second transplant went. At that time the doctors, both Dr. Te and Dr. Peterson from LDS Hospital will make the determination on what kind of maintenance drugs and how long I will need to take them. We should know this by the second week of October or pretty close to there.
My hair is just starting to grow back, I'm still pretty much bald and don't have to worry too much about shaving more than every 3-4 days. I think the results are probably a little cumulative to make the hair growth a little slower this time.
I doubt I'll be very timely in my posts, but I'll try to do a little better, maybe after we go to Utah for the holiday weekend. Hope everyone had a good summer, and everyone is doing well. OK, until next time.
Aside from my being extremely lazy was the fact that I really don't have anything much to write about. Since we've been home, everything is going very well, I have seen Dr. Te a couple of times and had standard blood tests taken each week. Everything they are testing for is coming out entirely normal. I am back to work full time (nearly) and am nearly weaned off any nausea medicine - not totally, but not too much. The testing that will probably be extended to bi-weekly will go until the end of September when I get the full range of tests done to see how well the second transplant went. At that time the doctors, both Dr. Te and Dr. Peterson from LDS Hospital will make the determination on what kind of maintenance drugs and how long I will need to take them. We should know this by the second week of October or pretty close to there.
My hair is just starting to grow back, I'm still pretty much bald and don't have to worry too much about shaving more than every 3-4 days. I think the results are probably a little cumulative to make the hair growth a little slower this time.
I doubt I'll be very timely in my posts, but I'll try to do a little better, maybe after we go to Utah for the holiday weekend. Hope everyone had a good summer, and everyone is doing well. OK, until next time.
Thursday, July 21, 2011
7/21/2011 We're coming home - we've done our time
We got good news yesterday, all my normal blood tests were normal, and so they went forward with removing my central line yesterday afternoon. We had our exit interview and were released from LDS Hospital care. We'll be packing up today and plan on taking to the highway tomorrow morning that will put us back in Vegas sometime this weekend. We are ready to come home.
I'm not completely finished with doctors yet. I have an appointment with Dr. Te next week and at day 100 (currently about day 31) I get another complete round of blood and other tests to determine just how good everyting went this time around and they plan for my maintenance medicines and procedures that I'll have to do for a while. So keep us in your thoughts and prayers for a few more weeks at least to help with this phase of the process then hopefully we'll be in great shape and hear the "full remission" words we are waiting for.
Thank you for all your support and until next time, hope everyone is safe and well.
I'm not completely finished with doctors yet. I have an appointment with Dr. Te next week and at day 100 (currently about day 31) I get another complete round of blood and other tests to determine just how good everyting went this time around and they plan for my maintenance medicines and procedures that I'll have to do for a while. So keep us in your thoughts and prayers for a few more weeks at least to help with this phase of the process then hopefully we'll be in great shape and hear the "full remission" words we are waiting for.
Thank you for all your support and until next time, hope everyone is safe and well.
Wednesday, July 13, 2011
7/13/2011 Playing the waiting game again
As I wrote last week, I got out of the hospital a few days earlier than I thought I would and several days sooner than I did last time in April. I think that was a good thing, but it remains to be seen. I'm not as strong as I was last time and I think that follows up with what happened this week.
Don't get me wrong, I believe I was ready to get out of the hospital when I did, they were keeping a 24/7 watch on me, but I don't think it was needed any more this time around which has been backed up by how I'm doing.
It was real nice for Amanda to come up and see us last week and weekend and I was real glad she was able to make it out to see the Pronk family, we would have wanted to go but I have to be pretty careful right now. Amanda said they were all doing pretty well.
So back to me, We met with the doctors yesterday (Tues. July 12th) and didn't really know what to expect going in but many of them were trying to get my line removed and to get the exit interview at the end of this week. - Well, that's not what is going to happen. This is how we are expecting things to go if my mind and body follow the plan. Next Wednesday morning I will go into the clinic to get what is hopefully my last set of labs for a while. Then just after noon, we'll have our exit interview with the medical staff and if everything goes well with that, they'll send me downstairs to get my line removed and they will kick me loose to go back to the care of Dr. Te in St. George until about day 100 when they will run all the labs and tests again to see how we did this time about getting all the little buggers. Hopefully things will be good enough that I'll just have some maintenance medication for a while and can achieve a full remission.
If all goes as planned, we should be leaving Salt Lake Friday morning July 22 to start heading south. Since it's the holiday weekend we haven't really talked about how long it will take us to get to Vegas, but I suspect it will be a couple of days.
We'll write again next week after plans are finaled or we know anything else to tell everyone.
Don't get me wrong, I believe I was ready to get out of the hospital when I did, they were keeping a 24/7 watch on me, but I don't think it was needed any more this time around which has been backed up by how I'm doing.
It was real nice for Amanda to come up and see us last week and weekend and I was real glad she was able to make it out to see the Pronk family, we would have wanted to go but I have to be pretty careful right now. Amanda said they were all doing pretty well.
So back to me, We met with the doctors yesterday (Tues. July 12th) and didn't really know what to expect going in but many of them were trying to get my line removed and to get the exit interview at the end of this week. - Well, that's not what is going to happen. This is how we are expecting things to go if my mind and body follow the plan. Next Wednesday morning I will go into the clinic to get what is hopefully my last set of labs for a while. Then just after noon, we'll have our exit interview with the medical staff and if everything goes well with that, they'll send me downstairs to get my line removed and they will kick me loose to go back to the care of Dr. Te in St. George until about day 100 when they will run all the labs and tests again to see how we did this time about getting all the little buggers. Hopefully things will be good enough that I'll just have some maintenance medication for a while and can achieve a full remission.
If all goes as planned, we should be leaving Salt Lake Friday morning July 22 to start heading south. Since it's the holiday weekend we haven't really talked about how long it will take us to get to Vegas, but I suspect it will be a couple of days.
We'll write again next week after plans are finaled or we know anything else to tell everyone.
Monday, July 4, 2011
7/4/2011 Independence Day +1
I got a pleasant surprise yesterday on the 3rd. Everyone was happy with how my numbers were looking and they kicked me out of the hospital. I kind of thought it might be coming but didn't dare speculate incase it didn't happen.
Although, I almost went AWOL the day before on Saturday. Something happened to the air conditioning system throughout the hospital and most of the rooms were in the 85 - 90 degree range that wasn't good for many of the patients up there. some of us found a little corner or a room that for some reason was working and was much cooler than the rest of the place. Patty and I took a spot in the waiting room of the BMT Clinic and watched a movie but that was lucky for us, there were some patients with fevers that the staff was really working hard to keep stable. They said the ICU and the NICU were both affected, but we never heard of any bad news, that was very fortunate. They had A/C workers up on the roof working on it and finally got it fixed so we could all go back to our rooms, but they were waiting a while before taking some patients back to be careful.
So, yesterday July 3rd they got me ready to go home, somehow I had eaten enough for them and I had drank enough liquids for them to let me go. I guess I am one of a very small group of patients that get out of there without having a red blood cell transfusion, which is OK with me. I had two units of platelets but that was all.
Patty came up and while she was there, they let me go. I came back to the apartment and went in for a nap that other than waking up to eat and use the facilities a couple of times got over about 11:00 am this morning July 4th, so I had to leave the hospital to get the rest I really need.
Now I don't know what we are going to do about watching some fireworks, maybe we won't since they'll all be past my bedtime anyway.
I am losing most of my hair again, it just started of the past couple of days, I'll probably find a barbershop on Tuesday to take everthing down to the number 2 blade length again.
I have an appointment at the clinic tomorrow morning, that should give me a better idea as to how long we will be expected to stay in Salt Lake. I don't know what their perameters for sending me home will be exactly. I still have the Central Line Catheter in and don't expect they will order it to be taken out until next week some time when they are certain I'm ready to go.
We'll let you know as we know more. I think Amanda is coming up to see us for a few days, that will be very nice. We do thank everyone for their thoughts and prayers, I know they helped.
Although, I almost went AWOL the day before on Saturday. Something happened to the air conditioning system throughout the hospital and most of the rooms were in the 85 - 90 degree range that wasn't good for many of the patients up there. some of us found a little corner or a room that for some reason was working and was much cooler than the rest of the place. Patty and I took a spot in the waiting room of the BMT Clinic and watched a movie but that was lucky for us, there were some patients with fevers that the staff was really working hard to keep stable. They said the ICU and the NICU were both affected, but we never heard of any bad news, that was very fortunate. They had A/C workers up on the roof working on it and finally got it fixed so we could all go back to our rooms, but they were waiting a while before taking some patients back to be careful.
So, yesterday July 3rd they got me ready to go home, somehow I had eaten enough for them and I had drank enough liquids for them to let me go. I guess I am one of a very small group of patients that get out of there without having a red blood cell transfusion, which is OK with me. I had two units of platelets but that was all.
Patty came up and while she was there, they let me go. I came back to the apartment and went in for a nap that other than waking up to eat and use the facilities a couple of times got over about 11:00 am this morning July 4th, so I had to leave the hospital to get the rest I really need.
Now I don't know what we are going to do about watching some fireworks, maybe we won't since they'll all be past my bedtime anyway.
I am losing most of my hair again, it just started of the past couple of days, I'll probably find a barbershop on Tuesday to take everthing down to the number 2 blade length again.
I have an appointment at the clinic tomorrow morning, that should give me a better idea as to how long we will be expected to stay in Salt Lake. I don't know what their perameters for sending me home will be exactly. I still have the Central Line Catheter in and don't expect they will order it to be taken out until next week some time when they are certain I'm ready to go.
We'll let you know as we know more. I think Amanda is coming up to see us for a few days, that will be very nice. We do thank everyone for their thoughts and prayers, I know they helped.
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