I'm sorry but I've owed any of you who are still logging on an update for a few weeks. I've had a less than great couple of weeks since my last visit to UCSF.
Dr. Burch, the orthopedic surgeon says that I'm about as good as I'm gonna get. So they tally is 7 collapsed vertebra, BUT with 3 repaired as well as they could with kyphoplasty, I'm doing well, "considering". That seems to be the catch phrase for all of my UCSF doctors.
Dr. Henry, my pain management doc said that the ablation is doing what it should, blocking the pain signals for 3 of the 7 collapsed vertebra. I asked about the other four and she said that they didn't want me to be pain free because they found that people they fixed really well felt better than they should have and did things that caused worse problems than they originally had. As I tried to explain how my level of pain is pretty high after just a short time sitting, standing or working out, she smiled and said that she was "Ok with that". She doesn't even know me, but still doesn't trust me. I'm hurt.
Dr. Wolf, though, was the highlight. As I have shared several times previously, he has dangled the "I might consider taking you off of your chemo to let your internal organs try and recover from all of the damage" carrot in front of me. So I asked about it. He very thoughtfully looked at the file and calmly said: "I have looked at everything in your file and records. I've talked about you with Drs. from all over the world during the international myeloma conference in February. Kevin, your cancer is like "Jaws". He may be deep. He may be shallow, but we know he's there. If you dangle a leg out there for him, he's going to attack it and drag you under. I just can't take you off of your chemo." He went on to explain that at least with my internal organs going downhill the way they are, we have numbers and time we can work with. If he took me off the chemo, I would need to get blood tests every week, but even then that may be too much time. If it metastized again it would kill me. My internal organs are too weak to be able to survive another series of treatments. SO, we stay the course, and I'm OK with that.
The good news is that the chemo is still working at killing the cancer before it can spread. The side effects just remind me that I'm still alive and have at least some of all of my faculties.
Weds. is another appointment with Dr. Malone is SLO. He'll like the Jaws analogy. I want to see his reaction. Just keep those infusions coming...
Hoping that all of you are doing well and that I'm the worst off person you know. Let's just try and keep it in my family, and out of yours. OK?
Sunday, April 22, 2012
Saturday, March 3, 2012
OH! My ACHIN' BACK
For those that have been following this for longer than a month you will remember that I've been whining about the pain in my back from the collapsed vertebra. About 4 months ago I did go up to UCSF's Pain Management clinic and received some injections which did work to temporarily relieve the pain. Now came the good part. The actual, bonafide, longer term shot (no pun intended) at relief called radio frequency ablation. It's a procedure where they stick some electrical devices into your back around your spine and zap the offending nerves that are sending the pain signals to my brain (sometimes it takes weeks to get there but it does eventually get there) with ultra high frequency radio waves which strip the nerves of the mylin (sp?) sheath which is the medium sending the pain signal. Every body got that? I think that's how it goes anyway. Jeff Jones, if you haven't given up on my blog site, maybe you could share some of your infinite wisdom about this if I'm off base. The relief, instead of being for just a few weeks, is supposed to be for 6 months to a year. And because I know that you are all holding your breaths in anticipation of the outcome, we will now break for a commercial from our sponsor...
My friend Wes Castro accompanied me again on this trip and he is really great company. Thanks again Wes. We always leave early enough to give us some room in case of traffic. On Feb. 6th, no traffic. Keeping it at a reasonable 5 over, we got to SF in 3 hours. We had an hour to kill, so we went to Fisherman's Wharf so Wes could have some lunch and eat it in front of me. They told me not to eat or drink for 6 hours before the procedure. That was in case they needed to do general anesthesia. More about that later. So I'm going to give you some pictures from around FW first. It was a beautiful day, by the way.
So walking around Fisherman's Wharf we of course saw many interesting people, and a whole lot of tourists.
We found a nice little Japanese sushi restaurant. Wes ate a big seafood noodle bowl right in front of me. I can't show it because it was too pain for me to just sit there and watch him eat it. But it looked great.
Now for the fun and games. First off I'm going to show you nurse Nancy. She assisted in the first procedure of shots. She's got a serious problem. She apparently likes looking at old guy buns. Sicko. She tells me to climb up on the table and instructs me to drop my pants and shorts. So I'm lying there for a minute before the Drs. come in and say, "The procedure's in his lower thorasic and uppermost lumber vertebra. His pants won't get in the way." "Oops". Get a good look at her so she doesn't get away with that if you're ever there.
The machine that she's behind is the Frankenstein Machine. A lot of electrical juice goes through that.
OK, here we go. Now for the procedure run down. Ready, set, zap!
I asked if they could get permission from the UCSF legal department to take pictures while the procedure going on. With the needles and things IN my back. No go. So we'll work around it as best we can.
Here's Dr. Naidu ready to go. The pictures on the screen are not me. Don't you just LOVE his prom dress. That bright green just really just brought out the color of his eyes. Dr. Naidu graduated from the U of Wisconsin at Madison, got his MD there, did his residency at UCLA, now doing his fellowship at UCSF. Great guy.
Here's the package of death and destruction to the demon nerves. Looks pretty impressive doesn't it? They only did three of the seven collapsed vertebra as the 3 have been the worst offenders.
So first they wheel a portable CAT-Scan machine that's shaped like a half circle to bring my vertebra up on the screen. From those pictures they locate the nerve that comes out of the spine and wraps around to the back of the spine where they get pinched by the facets. So the object is to zap the nerve before it gets to where it gets pinched so no pain signal gets sent to the brain.
Above is the picture of the what the needles look like outside of the sterile pack and after they had been inserted into my back and the offending nerves. The whole set up to the actual ablation took just over an hour and a half. Here's how it goes...First they do numb the area of the spine where they're going to insert the needles. They actually put a tube into the area of the targeted nerve because the needles, as you can see, are not stiff enough to be injected through the skin and into the nerve. Plus, the tube hole directs the needles for the deadening injection just before the actual procedure. Here's a picture of the tubes. They are about the size of the opening on the point of a ball point pen. Not too large. Not too small. But just right. Ya, right.
Next is the picture of the needles in my spine. This picture below shows two of the three needles that went into the spinal nerves. Charlotte, the 3rd year resident, couldn't take a picture of the needles in my back, but I convinced them all that she could take a picture of the picture of the needles in the back without breaking the rules. We just sort of bent them a little. By the way, her prom gown was a classic black and looked very good on her as you can see in the picture below.
The dark spots inside the vertebra show the kyphoplasty procedure that Dr. Burch did way back when.
My friend Wes Castro accompanied me again on this trip and he is really great company. Thanks again Wes. We always leave early enough to give us some room in case of traffic. On Feb. 6th, no traffic. Keeping it at a reasonable 5 over, we got to SF in 3 hours. We had an hour to kill, so we went to Fisherman's Wharf so Wes could have some lunch and eat it in front of me. They told me not to eat or drink for 6 hours before the procedure. That was in case they needed to do general anesthesia. More about that later. So I'm going to give you some pictures from around FW first. It was a beautiful day, by the way.
We found a nice little Japanese sushi restaurant. Wes ate a big seafood noodle bowl right in front of me. I can't show it because it was too pain for me to just sit there and watch him eat it. But it looked great.
OK, here we go. Now for the procedure run down. Ready, set, zap!
I asked if they could get permission from the UCSF legal department to take pictures while the procedure going on. With the needles and things IN my back. No go. So we'll work around it as best we can.
Here's Dr. Naidu ready to go. The pictures on the screen are not me. Don't you just LOVE his prom dress. That bright green just really just brought out the color of his eyes. Dr. Naidu graduated from the U of Wisconsin at Madison, got his MD there, did his residency at UCLA, now doing his fellowship at UCSF. Great guy.
So here's how the whole thing goes... After they deaden the area and stick the needles in their fun begins. First they ask you to let them know when you feel the spot get "warm" This is how they figure out that they're in the right area of the nerve they are targeting. Then they turn up the juice and, well, it's not like having someone put your hand in a bucket of warm water while you sleep, but it is an interesting sensation. From how much juice they have to turn the machine up to they can tell if they're near or at the right spot. So they move the needles in or out to find the "sweet spot" on the nerve. Times three. Then they change the zap-o-meter to a different setting. This time the sensation is an electronic pulse. Kind of a junior taser. My left leg would really jump. That was a good sign for them. It kinda of feels like the throbbing of a thumb that gets hit by a hammer. Times three. Of course they have to move the needles in and out to find the "sweet spot" here too. Then, when they have the right spots figured out they pull out the probes and stick in a needle with the magic juice to deaden the nerves. Wait 2 minutes for it to take affect. Then, they stick the actual ablation thingy down the hole, crank up the juice on the machine, and it's over. The ablation takes less than 30 seconds each and it's over. Kind of anti-climatic.
In and out in less than 2 hours. Had a great visit with Dr. Naidu. Dr. Melanie Henry, the big boss, slipped in and out without getting her picture taken. Either that or she was in a hurry to get back to the tollhouse pan cookies Dale made for them.
There you go. It took a week before the pain in my back from the procedure subsided enough to let me know that the pain in my back wasn't so bad. 2 weeks and the pain was mostly gone and the back pain is much less. It makes the end of each day so much more enjoyable without the throbbing pain in my back. Thank you to all of the Drs. and staff that did that made that possible for me.
Wes drove home and stopped in Gilroy at Applebees and had a rack of ribs each. Oh yea. Because I DIDN'T need any general anesthesia, I could have eaten up to the time of the procedure! So I made up for the lack of breakfast and lunch with the ribs and mashed potatoes. Ta ta for now. Thanks for everything.
Sunday, January 29, 2012
The Blah, Blah, Blah, Blog
Just going to get you caught up with the last couple of months. Should have something really good to share soon, as a week from Monday (Feb. 6th) I'll be back in SF for the radio frequency ablation on my spinal nerves that are giving me pain. So until that story unfolds, you'll just have to listen to to the blah, blah, stuff.
I probably told you that chemo makes your skin photosensitive. Well, when you're a very white person who has already been through the melanoma thing, the chemo can apparently really cause them to pop out. Understand, the skin cancers that we get are from exposure and damage decades ago. Well, just like with my cataract and gall bladder, chemo speeds things up. I went to my regular dermatologist mid-December. I saw him a year ago and only had a couple things frozen off. This time he was not so happy. 16. That's right. I had 16 little pre-cancers that had to be frozen off. I now have to wear long sleeves pretty much all the time, and I have to wear sunscreen on my face, and especially on my hands, every day! It's like having to wear makeup! I had 2 on each of my hands at the end of the thumb near the wrist, and 1 on the top of my left hand. Why you ask? From having my hands on the steering wheel and the sun beating through the windshield. 3 on my left arm. 1 pretty big and bad. Sun through the drivers side window. The rest on my face and ears. So just remember kids, too much sun can kill.
Throughout December and January every time I walked out of the house I caught some bug. It was funny having my monthly interview with the pharmaceutical company that supplies my chemo pills. We chat about side effects, and infections, and rashes and things since my last interview. You know, just like girl talk. So as I'm explaining what's been going on the representative taking the report asks: 'So any infections this past month?' "Yes. A bad sinus infection. A bad bronchial infection that we kept from becoming pneumonia. An ear infection that my Dr. deemed a very angry ear. And eye infections in my right eye which was bad enough to close it up with swelling and green gunk that would become crusty requiring me to wash the eye with warm water in order to try and flush it with saline, and left eye that wasn't quite as the right eye." 'Wow, you've had quite a month", she exclaimed. "Month? I had all of them at the same time over a two week period. I still have the bronchial and sinus infections, the ear ache is mostly gone, and I can see now out of both eyes." The girl freaked. 'What?! Wait while I get the pharmacist on the line please.' The pharmacist and I had spoken many times over the past 20 months that I've been in the daily chemo trial. She was cool. 'Well Mr. Richards. I hear that you're carrying on with your tradition of either being really good or really bad. I think you may have set another record.' That's the way it is when you have very little of your immune system.
Here's the other thing about being on chemo, and then starting a antibiotic series: they don't play well together. Now the antibiotics chased the infections away, and for that I'm truly grateful. It also made me sicker than I have been in a very long time. I will put it less delicately, over a period of several days, I broke records for nausea trips to the bathroom. It was coming and going. I was very glad when the 10 day treatment ended. I think our water bill was double for a normal month.
Now I want to say a special thank you to Dr. Sandy Tulanian. My internal organs have been protesting the pounding of chemo that they received during my treatments up to the transplant. They have been also getting tired of the long term exposure to the daily chemo process as well, and rebelling. Dr. Tulanian diagnosed my physiological needs to combat the damage, and provided supplements. Well, after two months they stopped the downward spiral. My oncologists were impressed. My last tests showed that in fact things are actually getting better inside. Way to go Sandy! So, it will likely be a recurrence of the cancer that will kill me, and not from organ failure. At least they're still working on better drugs with less side effects and less damage to other organs, or perhaps even a cure. Till then. Pills. Lots of pills.
Here's the latest report. I had a test that showed that my IgM level had doubled in a month. Usually, this is an indication that the cancer is coming back. Not for me. The chemo is designed to suppress the production of those IgM cells, which is where my cancer was. But my body produced an increase of those cells, with them being GOOD cells, not bad. I take this as a good sign. It could also mean that the cells are adapting to the chemo and that the chemo is becoming less effective, but I don't see it that way. As a matter of fact, Dr. Wolf discussed with me at our last appointment Jan. 15th, that he might take me off of the Revlimid altogether, or reduce my usage, in May or June of this year. He said that by doing so it would allow my organs, and particularly my neuropathy, to improve and get healthy again. We have learned that the Revlimid works for me, so when the cancer comes back we just start the chemo again and knock it down. SUWEEET!
Many have asked about what side effects I get from the chemo. Let me 'splain. No, there is no time. Let me some up. Extra credit if you know the reference. I take the pill before I go to bed. About 20 or so minutes after I take it, the fun begins. First, you know the feeling you get sometimes when you feel like you have bugs/things crawling all over your body? That's the chemo affecting the nerves. Crawlies for about 2 hours or so. I try and read to distract me, but I do itch them every so often. Second, after about 30 minutes, the body aches and bone aches start. I really try to be upstairs within that time or it's actually a chore to get up to bed. Unfortunately, the body aches make the back aches from the spine issues worse. Then there is some nausea. There are a few times a night when I feel that I have to get up and throw up or have diarrhea. Usually I just pee. And usually I don't have to throw up or sit on the Fritz (German john), but there have been times when I thought it was false alarm, and well, it wasn't pretty. Especially at 2 or 3 in the morning. Fortunately the side effects begin to wear off around 4:30 to 6 a.m., depending on when I took it the night before. Those that know me best know that I WAS a morning person. I would get up at 5:15 to go play basketball and to teach seminary. Now, if I can sleep until 9 or so, it's heaven. Today, I woke up at 9:40. I stayed in bed re-re-reading my Gospel Principles lesson and jotting notes until about 10:30. I don't mind 1pm church. I trade a nap for sleeping in. Another side effect is the neuropathy. The chemo kills the nerves. I have very little feeling in my fingers, hands, toes, feet and brain! While having the missionaries to dinner last month I was slicing some pieces of beef stick for them. Elder Sorenson brings it to my attention that I've got blood all over my hand. Pretty good slice. I told him that if it weren't for the neuropathy that would really hurt! I can't open bottles with caps very well. I drop everything because I can't tell if I'm gripping it tight enough. I did have a golf club go flying out of my hand during a swing. My toothbrush drops out of my hands all the time. Think about it. I HAVE CHEMO BRAIN. It's like chemically induced dementia. My skin is paper thin, rough and crusty. I'm lizard boy. You could blow on me and I'd bruise. Thanks to a wonderful and beautiful young lady in our ward by the name of Kim Engard, who happens to be a Mary Kay distributor, she has provided me with an array of lotions and scrubs that make my skin soft and less objectionable. The chemo's turning my hair gray! Can you imagine! At my age! Dang it. How about being tired all day every day? See, with 1/3 the normal number of red blood cells in my body there's 1/3 the oxygen and energy getting to my body. With very little immune system your susceptible to every thing that's out there. Then there's the digestion issues. Assimilation of nutrient issue. My goodness, it just goes on. I'll stop here. For those that asked, well, you won't make that mistake again, will you? For those that didn't, well, TMI.
Please, don't get the wrong idea. I am not complaining. If it comes off that way, I don't mean for it to. I am grateful for what I have, any life at all. I can do so much more now that I could a year ago. Two years ago I was at UCSF hospital doing chemo loading prepping for the stem cell transplant. I made it through 3 hours of church. I taught the Gospel Principles lesson. We had 6 or 7 investigators at church today and I had the opportunity to bear my testimony of Heavenly Father's love and power. I was able to give a sister in our Ward who is struggling with her cancer treatments a blessing. I have received 21 blessings through my treatments. I will get my 22nd next Sunday before my trip Monday to SF. But this time I was able to give the blessing, not just receive one. I made dinner. I love my life. I'm grateful for my "new normal" as we call it.
Well, you didn't have to get to the end to figure out the title, did you. If you made it this far, and even if you know someone who tried but just started hearing blah, blah, blah, I love and appreciate you all for what you've given me. My new normal. I'm wishing all of you a great life, full of new and improved normals, without the side effects.
I probably told you that chemo makes your skin photosensitive. Well, when you're a very white person who has already been through the melanoma thing, the chemo can apparently really cause them to pop out. Understand, the skin cancers that we get are from exposure and damage decades ago. Well, just like with my cataract and gall bladder, chemo speeds things up. I went to my regular dermatologist mid-December. I saw him a year ago and only had a couple things frozen off. This time he was not so happy. 16. That's right. I had 16 little pre-cancers that had to be frozen off. I now have to wear long sleeves pretty much all the time, and I have to wear sunscreen on my face, and especially on my hands, every day! It's like having to wear makeup! I had 2 on each of my hands at the end of the thumb near the wrist, and 1 on the top of my left hand. Why you ask? From having my hands on the steering wheel and the sun beating through the windshield. 3 on my left arm. 1 pretty big and bad. Sun through the drivers side window. The rest on my face and ears. So just remember kids, too much sun can kill.
Throughout December and January every time I walked out of the house I caught some bug. It was funny having my monthly interview with the pharmaceutical company that supplies my chemo pills. We chat about side effects, and infections, and rashes and things since my last interview. You know, just like girl talk. So as I'm explaining what's been going on the representative taking the report asks: 'So any infections this past month?' "Yes. A bad sinus infection. A bad bronchial infection that we kept from becoming pneumonia. An ear infection that my Dr. deemed a very angry ear. And eye infections in my right eye which was bad enough to close it up with swelling and green gunk that would become crusty requiring me to wash the eye with warm water in order to try and flush it with saline, and left eye that wasn't quite as the right eye." 'Wow, you've had quite a month", she exclaimed. "Month? I had all of them at the same time over a two week period. I still have the bronchial and sinus infections, the ear ache is mostly gone, and I can see now out of both eyes." The girl freaked. 'What?! Wait while I get the pharmacist on the line please.' The pharmacist and I had spoken many times over the past 20 months that I've been in the daily chemo trial. She was cool. 'Well Mr. Richards. I hear that you're carrying on with your tradition of either being really good or really bad. I think you may have set another record.' That's the way it is when you have very little of your immune system.
Here's the other thing about being on chemo, and then starting a antibiotic series: they don't play well together. Now the antibiotics chased the infections away, and for that I'm truly grateful. It also made me sicker than I have been in a very long time. I will put it less delicately, over a period of several days, I broke records for nausea trips to the bathroom. It was coming and going. I was very glad when the 10 day treatment ended. I think our water bill was double for a normal month.
Now I want to say a special thank you to Dr. Sandy Tulanian. My internal organs have been protesting the pounding of chemo that they received during my treatments up to the transplant. They have been also getting tired of the long term exposure to the daily chemo process as well, and rebelling. Dr. Tulanian diagnosed my physiological needs to combat the damage, and provided supplements. Well, after two months they stopped the downward spiral. My oncologists were impressed. My last tests showed that in fact things are actually getting better inside. Way to go Sandy! So, it will likely be a recurrence of the cancer that will kill me, and not from organ failure. At least they're still working on better drugs with less side effects and less damage to other organs, or perhaps even a cure. Till then. Pills. Lots of pills.
Here's the latest report. I had a test that showed that my IgM level had doubled in a month. Usually, this is an indication that the cancer is coming back. Not for me. The chemo is designed to suppress the production of those IgM cells, which is where my cancer was. But my body produced an increase of those cells, with them being GOOD cells, not bad. I take this as a good sign. It could also mean that the cells are adapting to the chemo and that the chemo is becoming less effective, but I don't see it that way. As a matter of fact, Dr. Wolf discussed with me at our last appointment Jan. 15th, that he might take me off of the Revlimid altogether, or reduce my usage, in May or June of this year. He said that by doing so it would allow my organs, and particularly my neuropathy, to improve and get healthy again. We have learned that the Revlimid works for me, so when the cancer comes back we just start the chemo again and knock it down. SUWEEET!
Many have asked about what side effects I get from the chemo. Let me 'splain. No, there is no time. Let me some up. Extra credit if you know the reference. I take the pill before I go to bed. About 20 or so minutes after I take it, the fun begins. First, you know the feeling you get sometimes when you feel like you have bugs/things crawling all over your body? That's the chemo affecting the nerves. Crawlies for about 2 hours or so. I try and read to distract me, but I do itch them every so often. Second, after about 30 minutes, the body aches and bone aches start. I really try to be upstairs within that time or it's actually a chore to get up to bed. Unfortunately, the body aches make the back aches from the spine issues worse. Then there is some nausea. There are a few times a night when I feel that I have to get up and throw up or have diarrhea. Usually I just pee. And usually I don't have to throw up or sit on the Fritz (German john), but there have been times when I thought it was false alarm, and well, it wasn't pretty. Especially at 2 or 3 in the morning. Fortunately the side effects begin to wear off around 4:30 to 6 a.m., depending on when I took it the night before. Those that know me best know that I WAS a morning person. I would get up at 5:15 to go play basketball and to teach seminary. Now, if I can sleep until 9 or so, it's heaven. Today, I woke up at 9:40. I stayed in bed re-re-reading my Gospel Principles lesson and jotting notes until about 10:30. I don't mind 1pm church. I trade a nap for sleeping in. Another side effect is the neuropathy. The chemo kills the nerves. I have very little feeling in my fingers, hands, toes, feet and brain! While having the missionaries to dinner last month I was slicing some pieces of beef stick for them. Elder Sorenson brings it to my attention that I've got blood all over my hand. Pretty good slice. I told him that if it weren't for the neuropathy that would really hurt! I can't open bottles with caps very well. I drop everything because I can't tell if I'm gripping it tight enough. I did have a golf club go flying out of my hand during a swing. My toothbrush drops out of my hands all the time. Think about it. I HAVE CHEMO BRAIN. It's like chemically induced dementia. My skin is paper thin, rough and crusty. I'm lizard boy. You could blow on me and I'd bruise. Thanks to a wonderful and beautiful young lady in our ward by the name of Kim Engard, who happens to be a Mary Kay distributor, she has provided me with an array of lotions and scrubs that make my skin soft and less objectionable. The chemo's turning my hair gray! Can you imagine! At my age! Dang it. How about being tired all day every day? See, with 1/3 the normal number of red blood cells in my body there's 1/3 the oxygen and energy getting to my body. With very little immune system your susceptible to every thing that's out there. Then there's the digestion issues. Assimilation of nutrient issue. My goodness, it just goes on. I'll stop here. For those that asked, well, you won't make that mistake again, will you? For those that didn't, well, TMI.
Please, don't get the wrong idea. I am not complaining. If it comes off that way, I don't mean for it to. I am grateful for what I have, any life at all. I can do so much more now that I could a year ago. Two years ago I was at UCSF hospital doing chemo loading prepping for the stem cell transplant. I made it through 3 hours of church. I taught the Gospel Principles lesson. We had 6 or 7 investigators at church today and I had the opportunity to bear my testimony of Heavenly Father's love and power. I was able to give a sister in our Ward who is struggling with her cancer treatments a blessing. I have received 21 blessings through my treatments. I will get my 22nd next Sunday before my trip Monday to SF. But this time I was able to give the blessing, not just receive one. I made dinner. I love my life. I'm grateful for my "new normal" as we call it.
Well, you didn't have to get to the end to figure out the title, did you. If you made it this far, and even if you know someone who tried but just started hearing blah, blah, blah, I love and appreciate you all for what you've given me. My new normal. I'm wishing all of you a great life, full of new and improved normals, without the side effects.
Sunday, December 4, 2011
PAIN (YOUR PAIN) IS FUN TO THESE PEOPLE
Sorry for not getting to this sooner, but that's the way my life goes. No bad, but good. I'll share for those who may still be interested.
Due to the continuing pain in my back, despite the improvements from physical therapy, something had to be done. At the end of the day when I would lay down in bed I would still have throbbing in my entire lower body. My left leg was not only numb, but tingly. Right leg only numb. Left hand numb and tingly too. Can't do Aleve or ibuprophen due to kidney issues, so you just live with it, right? Wrongo. Thanks to the wonders of UCSF medicine, brought to you by the people who kept me alive, and a referral by my orthopedist, Dr. Shane Burch, I finally got an appointment with the UCSF Pain Management office. So, on November 5th, I, along with Darrell and a good friend Wes Castro (a most interesting fellow, if you ever get the chance to visit with him), headed north to SF. We had some difficulty getting there, but thankfully, after not a little fret on my part, which annoyed Darrell and Wes I think, we got there with time to spare. So as I got settled in the waiting area, Darrell and Wes headed out into the streets of SF until my return from the inner sanctums of the Center. Here we are in front of the very low key office in the shadow of the big UCSF Mt. Zion hospital.
I will now introduce the supporting characters by order of appearance. First was Dr. Ramana Naidu, a Clinical Fellow of anesthesiology and pain management. He asked a lot of questions but never actually said that he was going to be the one inserting the needles into my back. Next to him is Jackie Weiss, a 4th year medical student (she made sure I knew that she was a 4th year student), who was there to observe.
The next participant was the nurse, who only wanted to be identified as 'Nurse Kelly'. What her real name is I don't know. At first she didn't want to be photographed but after I assured her that there were no law enforcement people tracking my blog she agreed to be photographed. I didn't pixelate her face either.
Now behind us you can see a couple screens where MRIs of my spine are being shown. It was from these pictures that Dr. Naidu planned his work. To the right of Nurse 'Nancy' was a portable Cat-scan machine that they use during the procedure. He was supervised by Dr. Melanie Henry, MD, MPH (whatever that means) and Assistant Clinical Professor and Attending Physician. You can just call her Doctor.
So as I understand it (I was there but face down on the table to the right of Dr. Henry so I didn't get to see much), they rolled the portable Cat-scan machine over me while the rest of the cowards stayed back away from the deadly rays it produces while Dr. Naidu began to stick needles into my back to inject some steroid that I think starts with "D". The steroid then reduces the pain and pinpoints the problem area for future possible oblation of the actual nerves. The injections last 2-6 months. The oblation can last 8-10 years. The only hitch was when Dr. Naidu would stick the needle in me and then I'd hear, "I'm hitting bone. I can't seem to get between them." The object is to get the needle between the two rubbing facets in order to inject the steroid at the offending spot. Dr. Henry would respond, "Just back it out and try it at a different angle." So in again he would stick the needle, unfortunately, with the same result not infrequently. I stopped counting how many times he had to stab me. That's not the important. He got it done. The pain from the injections themselves was not so great for a few days, but a couple days later my spinal pain was much better. So far it has worked, somewhat. It doesn't relieve all pain, but a lot of it. So thank you to these wonderful people at UCSF for making my life better. Can't wait to do the bottom one & the right side.
Of course the most important reason for me recovering from the procedure was so that I could play golf with my UCSF oncologist, Dr, Jeffrey Wolf. That's right, my Dr. invited me to play golf with him at a pretty famous golf course there in SF. He arranged his schedule (and mine) so that we could golf at Harding Park. Most of you won't care, but, it's been a regular PGA Tour stop, the course where the President's Cup was played in 2010 and 2011, and hosted the final Senior PGA Championship tournament of the season just a few days before we played. Another patient was supposed to play with us, but had to back out at the last minute. It was meant to be as we were paired with a young couple who had a 10 month old baby girl. Some people deal with stress in different ways. I loved her way. Just that morning she was diagnosed with thyroid cancer and decided to try and relieve her stress by playing golf with her husband. As I introduced myself to her husband, Dr. Wolf shared that I was coming back from cancer and walked back to the cart to get something. Her husband shared her diagnosis from earlier that day. with me. I told him that Dr. Wolf (who just introduced himself as Jeff) was an oncologist and that we were paired together so that she could get some advise and comfort from Jeff. Dr. Wolf then returned and I informed him of the young woman's diagnosis. He smiled and walked over to her, pulled down the neck of his turtle neck shirt, and showed her his car from when he had his thyroid removed due to cancer when he was 28. It was way cool, and they talked quite a bit and thanked him as they left feeling so much better about the whole thing.
Now to answer the question that is on everyone's mind, "But how did you do?" I did OK. Started out too sore and stiff from 2 days in SF and triple bogeyed the first 2 holes. Got looser and by the last 2 holes we were tied. The clouds had come in and it was drizzling. Dr. Wolf chipped in a shot out of a greenside pot bunker, with a downhill break that hit the flag dead center and the ball jumped in. It was a great shot! For the last hole it was so dark that we couldn't see. Fortunately there were a couple of guys from Ireland playing behind us that asked if they could play with us so that they could finish the course. I said "Of course", as Dr. Wolf hesitated, but I reminded him that we needed their young eyes to be able to see our balls in the dark. They helped a lot. We all finished as it started to rain. I shot an 89, which isn't too bad for my first time on the course and starting out with 2 triple bogeys. We both determined that we were going to break 90 as we were tied at 46 after 9 holes, and we did it. Would it have been bad form for me to win? I guess I'll never have to worry about that anyway. Then we had dinner at a great little Italian restaurant. Home by 10:15.
My last thank you go to Joan and Dan Murphy. Remember my friend Dennis Lozano from my very first stay at UCSF? Well, his wife Marie, is a sister to Joan Murphy. They live about 3-4 miles from UCSF and about 1-2 miles from Harding Park. They invited me to stay at their place on Weds. night, so that I didn't have to get a hotel and would have a place near the hospital for my early morning appointment with Dr. Wolf. It was a wonderful stay. It was so great to be able to learn more about them and their beautiful family. Marvelous food. Great and very interesting company. A great bed with all the comforts of their home. It was wonderful. Thank you Joan and Dan for your hospitality and care. I apologized to them and to the rest of you for my failure to take any pictures. Next time, Joan and Dan?
Due to the continuing pain in my back, despite the improvements from physical therapy, something had to be done. At the end of the day when I would lay down in bed I would still have throbbing in my entire lower body. My left leg was not only numb, but tingly. Right leg only numb. Left hand numb and tingly too. Can't do Aleve or ibuprophen due to kidney issues, so you just live with it, right? Wrongo. Thanks to the wonders of UCSF medicine, brought to you by the people who kept me alive, and a referral by my orthopedist, Dr. Shane Burch, I finally got an appointment with the UCSF Pain Management office. So, on November 5th, I, along with Darrell and a good friend Wes Castro (a most interesting fellow, if you ever get the chance to visit with him), headed north to SF. We had some difficulty getting there, but thankfully, after not a little fret on my part, which annoyed Darrell and Wes I think, we got there with time to spare. So as I got settled in the waiting area, Darrell and Wes headed out into the streets of SF until my return from the inner sanctums of the Center. Here we are in front of the very low key office in the shadow of the big UCSF Mt. Zion hospital.
Of course the most important reason for me recovering from the procedure was so that I could play golf with my UCSF oncologist, Dr, Jeffrey Wolf. That's right, my Dr. invited me to play golf with him at a pretty famous golf course there in SF. He arranged his schedule (and mine) so that we could golf at Harding Park. Most of you won't care, but, it's been a regular PGA Tour stop, the course where the President's Cup was played in 2010 and 2011, and hosted the final Senior PGA Championship tournament of the season just a few days before we played. Another patient was supposed to play with us, but had to back out at the last minute. It was meant to be as we were paired with a young couple who had a 10 month old baby girl. Some people deal with stress in different ways. I loved her way. Just that morning she was diagnosed with thyroid cancer and decided to try and relieve her stress by playing golf with her husband. As I introduced myself to her husband, Dr. Wolf shared that I was coming back from cancer and walked back to the cart to get something. Her husband shared her diagnosis from earlier that day. with me. I told him that Dr. Wolf (who just introduced himself as Jeff) was an oncologist and that we were paired together so that she could get some advise and comfort from Jeff. Dr. Wolf then returned and I informed him of the young woman's diagnosis. He smiled and walked over to her, pulled down the neck of his turtle neck shirt, and showed her his car from when he had his thyroid removed due to cancer when he was 28. It was way cool, and they talked quite a bit and thanked him as they left feeling so much better about the whole thing.
Now to answer the question that is on everyone's mind, "But how did you do?" I did OK. Started out too sore and stiff from 2 days in SF and triple bogeyed the first 2 holes. Got looser and by the last 2 holes we were tied. The clouds had come in and it was drizzling. Dr. Wolf chipped in a shot out of a greenside pot bunker, with a downhill break that hit the flag dead center and the ball jumped in. It was a great shot! For the last hole it was so dark that we couldn't see. Fortunately there were a couple of guys from Ireland playing behind us that asked if they could play with us so that they could finish the course. I said "Of course", as Dr. Wolf hesitated, but I reminded him that we needed their young eyes to be able to see our balls in the dark. They helped a lot. We all finished as it started to rain. I shot an 89, which isn't too bad for my first time on the course and starting out with 2 triple bogeys. We both determined that we were going to break 90 as we were tied at 46 after 9 holes, and we did it. Would it have been bad form for me to win? I guess I'll never have to worry about that anyway. Then we had dinner at a great little Italian restaurant. Home by 10:15.
My last thank you go to Joan and Dan Murphy. Remember my friend Dennis Lozano from my very first stay at UCSF? Well, his wife Marie, is a sister to Joan Murphy. They live about 3-4 miles from UCSF and about 1-2 miles from Harding Park. They invited me to stay at their place on Weds. night, so that I didn't have to get a hotel and would have a place near the hospital for my early morning appointment with Dr. Wolf. It was a wonderful stay. It was so great to be able to learn more about them and their beautiful family. Marvelous food. Great and very interesting company. A great bed with all the comforts of their home. It was wonderful. Thank you Joan and Dan for your hospitality and care. I apologized to them and to the rest of you for my failure to take any pictures. Next time, Joan and Dan?
Sunday, September 25, 2011
Gullible's Travels
I know it's been a long time since I last posted, but there just hasn't been too much that I could share going on. But after a couple of months I'll try and make your visit to the blog worth while. As for the medical news... Do ya'll realize that it's been just over 2 years since I went to UCSF's ICU for the first time? It's been a long time, yet in some ways it seems like yesterday. Oddly enough I don't remember much of that first visit. I just remember that while lying in the ICU unit I over heard all of the doctors and nurses planning the hospital's production of Guys and Dolls. I was so out of it that I couldn't respond. After a couple of days, I was able to let my nurse know that I could help them out by doing the "Nicely Nicely' part and that I already knew the words to the song "Sit down your rockin' the boat". He acted like he didn't know what I was talking about. I figured they just gave the part to someone else while I was recovering and he didn't want to hurt my feelings. I missed my chance for fame and glory. Some say I haven't fully recovered from my medicated psychosis. Others say I've always had it.
Who are these people and where is this beautiful place? The first part of Sept. I was able to visit some clients (just in case the IRS is monitoring my blog) and friends in the Seattle area of Washington State. I'd never been there before and it was fantastic. It really reminded me on southern Germany from my mission, with fields cut out of forest and rivers and lakes everywhere. Lush and green. And for me, it didn't rain a single second. Actually, it didn't rain for a month. I did get to stay with my great buddy and lifelong friend, Dan Stuart and his family. Here's a picture of them, except for Ethan, who for some strange reason was already asleep, and Carly, who at 2, was just uncooperative. Dan, Cynthia, Aveson and Brady. I had a great time with them. They live just north of Seattle in the Marysville area. Their yard is one-half yard, one-half forest/jungle. Wild berries grow everywhere and people there will go out for a day with their families and pick enough to can for the rest of the year. Here's Dan in his backyard. Finally got a picture of Carly, when she didn't know I was coming.
The trip turned into a visit of high school and long time ago friends. I didn't get any pictures, but I was able to visit with Butch and Chelli Pogue, who Dale & I knew in Long Beach, and then they moved to Tacoma. They gave us some wonderful support during the last years, and I needed to visit with them to say thank you face to face. But only I got to see their faces and you don't because I was so excited to see them that I forgot to take a picture. Where was Hillary when I needed her?
Dan & Cynthia have lived in the area just 1 year, so they didn't know the places to explore & see. But thankfully, I had another lovely high school connection, none other than Colleen Sweeney, my high school sweetheart, who's lived in Seattle for many years and knows all of the places to see in the area. Her ex London Smith was also present and we became BFFs over Astin Martins (he owned one) and many other things. So with Dan & his family we loaded up the vehicles and went exploring thanks to Colleen and her impromptu Pacific Northwest Pixie Tours. I can't show everything, but you'll get a flavor for the city and surrounds, including the city views, views of the truly spectacular Puget Sound, waterfalls just minutes from the city, and importantly for me, great places to eat with fabulous views. Thanks Colleen and London for so much fun!
Then I headed east towards Spokane, where I was to visit another client. But on the way I was able to visit another great friend from high school days, Frank Portera and his family. Did I ever tell you the story of how Frank sank his new motorcycle? Lots of good stories with Frank. He reminded me of the time...well, we'll save that for another day. Frank lives in Selah, which is just outside Yakima, the apple capital of the country. It's high desert, but I was amazed at the amount of water that still was flowing through it all. We went to Red Lobster because it was the first night of "all you can eat shrimp" promotion. Frank can eat a lot of shrimp. His adorable wife Cindy less so. His step-daughter Erin also. We included our waiter in the picture. I think his name was Travis. It was his first night working there and he did great. We hit it off and had to include him in our group picture. Former Marine. Great guy. Erin's not interested, however. Erin didn't want to come listen to 2 old guys talk about the good ol' days. Mom convinced her and she admitted that she hadn't laughed so had for so long in years. That Frank was really a wild & crazy guy. She just never knew it. If you can imagine this, I was the voice of reason in our group! So you can imagine what Frank was like. To take liberty with a line from Guys and Dolls, spoken by Big Julie, "Thirty-three accusations. Not one conviction."
While in Spokane, where I visited another client, I also was able have a visit with these two wonderful ladies. The younger of the two, and daughter, is Kendra Player. She was my oldest brother Mark's girlfriend in high school. The fiestier of the two, is June Smith. She was the wife of the only scoutmaster that lasted more than 6 months with our group. His name was Lamar Smith. He and my dad were good friends, and they died from cancer within 2 weeks of each other about 6 years ago. Lamar was the scoutmaster when Jeff was bonked on the head with the 22 lb. rock on Navajo trail at Bryce Canyon, and when one of the Rangers at Death Valley asked him to make sure that I never came back. What? Another time another story. We had a wonderful time and thank you for finding me a restaurant (Old European in No. Spokane) where I was able to get real German potato pancakes with applesauce. Takin' me back 37 yrs. ish.
To wrap up my WA trip just a couple more pictures and stories. Of course with Dan and I we fanagled in some golfing. The courses are cut out of the forests. There's nothing 'man-made' but the course itself. If you are prone to hitting out of bounds, bring lots of balls with you. I lost 4, and that's very low. I don't hit it that far either. But once it's in the woods, you'll never find it, or get torn to shreds by the thorns on the wild berry bushes that grow right up to the tree line. That's a pond with water lilies on the right of the trees. Beautiful.
Got back in time for a beautiful Paso Robles sunset.
Below is a picture of Dale, I and Susan Ibbetson, another former high school friend who came and visited us this weekend. She's wonderful and really enjoyed the quiet of our humble commode. She lives in Newport Beach and been an Orange County girl for many years. After her divorce she went back to school at 35 and played basketball for Santa Ana College, even becoming the Co-Captain her 2nd year! She's over 6', which really bugged me in high school. Now that I'm a shrimp, she's really rubbing it in. Very nicely.
So here's the scoop on my physical situation, for those who are still awake...
My body's not liking the buildup of the chemo in my system, so it's affecting my red & white blood cells, kidney & liver functions, neuropothy, symptoms, etc. They're trying to figure out what to do about it. Can't stop the chemo 'cus the cancer will come back. Cutting back on it some won't help the symptoms. My monthly infusion of Zometa has been changed to every other month, but other than that, it's "We'll just keep watching it until it becomes serious." GOOD NEWS: Physically I have been doing well. I even graduated from physical therapy and will be working out at the gym now to keep me from blimping out again. Thanks to all of the staff at San Luis Sports Therapy in Paso Robles, especially Dr. Jennifer Seay (pronounced 'see') and of course my own Candice Joy Richards.
Thanks for all of your continuing love and support. As you can see by the pictures of me I am more upright than I've been in over 2 years. Still fairly weak when it comes to stamina, but my frame is stronger. Actually, my Dr. wants me to lose 10 lbs. Ouch.
The trip turned into a visit of high school and long time ago friends. I didn't get any pictures, but I was able to visit with Butch and Chelli Pogue, who Dale & I knew in Long Beach, and then they moved to Tacoma. They gave us some wonderful support during the last years, and I needed to visit with them to say thank you face to face. But only I got to see their faces and you don't because I was so excited to see them that I forgot to take a picture. Where was Hillary when I needed her?
Dan & Cynthia have lived in the area just 1 year, so they didn't know the places to explore & see. But thankfully, I had another lovely high school connection, none other than Colleen Sweeney, my high school sweetheart, who's lived in Seattle for many years and knows all of the places to see in the area. Her ex London Smith was also present and we became BFFs over Astin Martins (he owned one) and many other things. So with Dan & his family we loaded up the vehicles and went exploring thanks to Colleen and her impromptu Pacific Northwest Pixie Tours. I can't show everything, but you'll get a flavor for the city and surrounds, including the city views, views of the truly spectacular Puget Sound, waterfalls just minutes from the city, and importantly for me, great places to eat with fabulous views. Thanks Colleen and London for so much fun!
Then I headed east towards Spokane, where I was to visit another client. But on the way I was able to visit another great friend from high school days, Frank Portera and his family. Did I ever tell you the story of how Frank sank his new motorcycle? Lots of good stories with Frank. He reminded me of the time...well, we'll save that for another day. Frank lives in Selah, which is just outside Yakima, the apple capital of the country. It's high desert, but I was amazed at the amount of water that still was flowing through it all. We went to Red Lobster because it was the first night of "all you can eat shrimp" promotion. Frank can eat a lot of shrimp. His adorable wife Cindy less so. His step-daughter Erin also. We included our waiter in the picture. I think his name was Travis. It was his first night working there and he did great. We hit it off and had to include him in our group picture. Former Marine. Great guy. Erin's not interested, however. Erin didn't want to come listen to 2 old guys talk about the good ol' days. Mom convinced her and she admitted that she hadn't laughed so had for so long in years. That Frank was really a wild & crazy guy. She just never knew it. If you can imagine this, I was the voice of reason in our group! So you can imagine what Frank was like. To take liberty with a line from Guys and Dolls, spoken by Big Julie, "Thirty-three accusations. Not one conviction."
To wrap up my WA trip just a couple more pictures and stories. Of course with Dan and I we fanagled in some golfing. The courses are cut out of the forests. There's nothing 'man-made' but the course itself. If you are prone to hitting out of bounds, bring lots of balls with you. I lost 4, and that's very low. I don't hit it that far either. But once it's in the woods, you'll never find it, or get torn to shreds by the thorns on the wild berry bushes that grow right up to the tree line. That's a pond with water lilies on the right of the trees. Beautiful.
Got back in time for a beautiful Paso Robles sunset.
Below is a picture of Dale, I and Susan Ibbetson, another former high school friend who came and visited us this weekend. She's wonderful and really enjoyed the quiet of our humble commode. She lives in Newport Beach and been an Orange County girl for many years. After her divorce she went back to school at 35 and played basketball for Santa Ana College, even becoming the Co-Captain her 2nd year! She's over 6', which really bugged me in high school. Now that I'm a shrimp, she's really rubbing it in. Very nicely.
So here's the scoop on my physical situation, for those who are still awake...
My body's not liking the buildup of the chemo in my system, so it's affecting my red & white blood cells, kidney & liver functions, neuropothy, symptoms, etc. They're trying to figure out what to do about it. Can't stop the chemo 'cus the cancer will come back. Cutting back on it some won't help the symptoms. My monthly infusion of Zometa has been changed to every other month, but other than that, it's "We'll just keep watching it until it becomes serious." GOOD NEWS: Physically I have been doing well. I even graduated from physical therapy and will be working out at the gym now to keep me from blimping out again. Thanks to all of the staff at San Luis Sports Therapy in Paso Robles, especially Dr. Jennifer Seay (pronounced 'see') and of course my own Candice Joy Richards.
Thanks for all of your continuing love and support. As you can see by the pictures of me I am more upright than I've been in over 2 years. Still fairly weak when it comes to stamina, but my frame is stronger. Actually, my Dr. wants me to lose 10 lbs. Ouch.
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