Hello everyone! This blog post is pathetically past due! I have a reason, but it's not an excuse (at least not a good one). Any one still following this blog may remember that in the course of the last few years I've started and stopped exercise and diet programs several times. Well last fall I began another one, and since I've had a history of NOT being successful in this area, I didn't want to talk about it until I had passed a certain stage. As those of you who have seen my recent facebook page know, I passed the one-year anniversary and am still going strong, so I figured it's time to update this blog.
Before I get to that I want to give a very short update on the stem-cell transplant progress. So far all is looking good. While I still tend to have some issues that have held over since before the transplant with a bit of neuropathy (nerve issues in my feet) and vertigo (I have some balance issues that have never completely cleared up), generally I haven't had any obvious systems of being out of remission. My oncologist, who I just saw last month, also thinks things are looking good. This month - in fact today! - is the five-year anniversary of my transplant.
The transplant and everything that followed is chronicled in detail on this blog if you're interested in particular areas, but here's a short summary:
On Oct. 2nd, 2010, I went into the hospital in Tucson. After 8 days of intense chemo my immune system was pronounced dead for all intents and purposes. On the 10th of October, after one day off to ensure that all my blood numbers were dropping dramatically, my transplant took place. It took another 2 weeks for my numbers to start crawling up toward the safe zone. During this time a transplant patient is particularly susceptible to massive organ failure, extreme infection that can't be fought off, and cuts or injuries that could result in massive bleeding. I managed to get through the two weeks without those things occurring, although I was in intensive care for 24 hours when my blood pressure began falling to very low levels. It's easy to treat high blood pressure, but very difficult to treat low blood pressure. But after 24 hours it started to rise again, and they sent me back to my quarantined wing. My blood numbers continued to rise, and on October 25th I was released from the hospital.
Two months later I was beginning to feel more like myself, although my taste buds were really messed up (everything tasted like chemicals), and I had a terrible case of chronic dry mouth due to all the post-transplant medicine prescribed, and additionally was very weak with really bad balance problems/vertigo. I spent most of that time in a reclining chair - I just didn't have any energy. A year after the transplant I realized how much better I was actually beginning to feel, compared to the two-month mark, even though I was still very low energy, weak and out of shape. That's when I started to realize that I needed to get into shape, just in case I beat the odds and the transplant really turned out to be successful.
Okay, so the way the medical community talks about bone marrow and stem-cell transplant patients is this: After two years post-transplant we start whispering of a cure, and after five-years post-transplant we begin to feel cautiously optimistic. Since I'm at the 5-year mark and doing well, we're now cautiously optimistic. I haven't had my 5-year tests, though, and my oncologist decided this will be just a CT scan in February. She doesn't want to expose me to any more extreme radiation and chemicals if she can help it, so no PET scan this time. Admittedly the PET scan is far more accurate in displaying cancerous hot spots, but unless I exhibit symptoms, she's going to avoid that for now. So February is my official sign-off on year 5.
Now the weight loss update deserves it's own post, and I'll also be putting it in it's own section, so you can dig into the stem-cell transplant or weight-loss sections as you like. That post and a bit of a reorganized blog will follow. I also want to tell those that still follow this pathetically over-due blog, that I may be shifting some or all of the content to my own website on GoDaddy. However since I've owned that site for a while, but haven't developed it yet, I'm not sure when I'll be ready to transition there, in part or in full or at all. I'll make sure and post a note about that if I do, and share it on facebook as always.
Okay, onto the next post, which will follow shortly.
Saturday, October 10, 2015
Saturday, October 18, 2014
Status Update: Oct. 18, 2014
Wow, I am so far behind on my blog! This second half of 2014 has flown by so fast I feel like I've missed half of it. I'm going to make this brief, although it's all good news so far.
In August I had two big tests scheduled - a CT scan and Bone scan. In the past this would have been just a PET scan. I go over this test in detail in my transplant pages, but in short, a PET scan is a nuclear medicine imaging test. A glucose dye is injected prior to the test and then the machine scans your body in a tube at small intervals over a relatively long period time - you're moved about 4" every six minutes. It takes two 35 minute scans to do your upper and lower body for a total of just over an hour in the tube. The glucose is drawn to areas of your body where sugar consumption is high, and is seen as a 'hot spot' on the film. Things that can cause hot spots are healing injuries (strains, bumps, bruises, cuts, etc.) and cancer. Healing injuries need energy to heal, while cancer cells are combining incorrectly at a high rate of speed, and so will also require energy. This is why, at least in part, people suffering from cancer will lose weight when their disease is active, and regain the weight when the disease is not active.
Normally this is a 'big' test, run once a year post-transplant, however there is now a lifetime limit on this test for two reasons: 1. It's expensive, and insurance companies want to keep costs low, and 2. It exposes a patient to a lot of radiation, which is something you want to avoid. The limit is now 4 PET scans paid for in a lifetime, and that change when into effect in June 2013. I've had perhaps a dozen PET scans since I was diagnosed, and the last one was run right before the rules changed, in April, 2013. So this year, no PET scan, but the bone and CT scans instead. These will not catch a blood cancer, but they will show mass tumors and problems with bone density that can indicate cancer as well.
So both were run in August and both were clear - yay! I'm a little off schedule now, since this big test was actually run a few months before my 4th year post-transplant anniversary, which is this month. In fact just four years ago I was in the hospital on this day, about a week post-transplant, feeling like crap, and waiting for my immune system to rebuild itself. It took a few weeks, but by Oct. 25th, 2010, my numbers blood numbers looked good, and I got to go home. It's hard to believe it's now been four years - it's a really good milestone, since normally blood cancers would recur sometime in the two years immediately after a transplant. I had a visitor during my hospital stay - a guy who was among the first patients to ever have a bone marrow transplant (they didn't do stem-cell transplants back then), and he was 18 years post-transplant! I guess that's what you really call a successful outcome.
At any rate, things are going well on the health front, although I still struggle with my weight and exercise. I'm seeing a specialist on this at the end of the month, since now it's more important than ever, given my overall good results in the other categories. I've been getting a lot of writing in, and have attended a few conferences as well, so a lot of activity on that front as well, but more on that later.
Now if I can just remember how to organize the pages in my blog and get this entry into searchable shape!
In August I had two big tests scheduled - a CT scan and Bone scan. In the past this would have been just a PET scan. I go over this test in detail in my transplant pages, but in short, a PET scan is a nuclear medicine imaging test. A glucose dye is injected prior to the test and then the machine scans your body in a tube at small intervals over a relatively long period time - you're moved about 4" every six minutes. It takes two 35 minute scans to do your upper and lower body for a total of just over an hour in the tube. The glucose is drawn to areas of your body where sugar consumption is high, and is seen as a 'hot spot' on the film. Things that can cause hot spots are healing injuries (strains, bumps, bruises, cuts, etc.) and cancer. Healing injuries need energy to heal, while cancer cells are combining incorrectly at a high rate of speed, and so will also require energy. This is why, at least in part, people suffering from cancer will lose weight when their disease is active, and regain the weight when the disease is not active.
Normally this is a 'big' test, run once a year post-transplant, however there is now a lifetime limit on this test for two reasons: 1. It's expensive, and insurance companies want to keep costs low, and 2. It exposes a patient to a lot of radiation, which is something you want to avoid. The limit is now 4 PET scans paid for in a lifetime, and that change when into effect in June 2013. I've had perhaps a dozen PET scans since I was diagnosed, and the last one was run right before the rules changed, in April, 2013. So this year, no PET scan, but the bone and CT scans instead. These will not catch a blood cancer, but they will show mass tumors and problems with bone density that can indicate cancer as well.
So both were run in August and both were clear - yay! I'm a little off schedule now, since this big test was actually run a few months before my 4th year post-transplant anniversary, which is this month. In fact just four years ago I was in the hospital on this day, about a week post-transplant, feeling like crap, and waiting for my immune system to rebuild itself. It took a few weeks, but by Oct. 25th, 2010, my numbers blood numbers looked good, and I got to go home. It's hard to believe it's now been four years - it's a really good milestone, since normally blood cancers would recur sometime in the two years immediately after a transplant. I had a visitor during my hospital stay - a guy who was among the first patients to ever have a bone marrow transplant (they didn't do stem-cell transplants back then), and he was 18 years post-transplant! I guess that's what you really call a successful outcome.
At any rate, things are going well on the health front, although I still struggle with my weight and exercise. I'm seeing a specialist on this at the end of the month, since now it's more important than ever, given my overall good results in the other categories. I've been getting a lot of writing in, and have attended a few conferences as well, so a lot of activity on that front as well, but more on that later.
Now if I can just remember how to organize the pages in my blog and get this entry into searchable shape!
Monday, June 16, 2014
Status Update: June 16, 2014
Wow, it's been forever since I updated - 3 months, when my objective is to get in 1-3 posts per month on average. Bad! My only excuse is being busy with several things, that could have (and should have) easily enough found a place in the blog. Oh well...
Health Update:
This spring has been a mirror of last spring, which was a season of allergy issues for me, or so I thought. As it turns out I'm partly right, and partly wrong. I've always had allergies, but they manifest themselves differently for me in different climates (like with most people). My ragweed allergy was always bad in the fall in Minnesota, but essentially none-existent in Arizona. However my normally noticeable pollen allergy in the spring in Minnesota was amplified and present almost year-round in Arizona. This is because except for a few short weeks where there's some weather in the 30's in the evenings. Every other bit of time the cactus are blooming and those pollen-laden blooms are floating in very fine particles in the very dry air.
But as it turns out, I've learned that a not uncommon problem for post bone-marrow and stem-cell transplant patients is the potential for chronic bronchial issues, and as it turns out humidity is a massive trigger for bronchitis. So spring hits in Minnesota, the land of 10,000 lakes, and humidity is not very far behind, which then tends to last through mid-August or so. Meanwhile, in Arizona, except for a very narrow few weeks in August, during monsoon season, there is almost never any humidity. I remember having a strange respiratory episode during that time almost a year after my transplant. I'd feel fine sitting, then when I stood up it felt like a weight had just shrugged down from my jaw along my throat to my chest, which in retrospect I now realize was probably caused by the inflammation of my bronchial passages. I've experienced that at least three times in the last two years in Minnesota, though, and am only now figuring out the connection.
So we had a long winter and a delayed spring. We run the humidifier in the winter to moisten the overly dry air a bit, and the dehumidifier in the spring/summer to take the excess water out of the air. It was only about a week ago when the dehumidifier began collecting water, but when the change hit, it was drastic. We can collect about 2-3 gallons of water in one day. That's a lot of humidity! And last week what had simply been a bit irritating before (the tightness I sometimes get beneath my jaw running down my throat, went into a full-blown respiratory thing that finally, after a week of living with what I simply thought was a chest cold, sent me to the ER - on Friday the 13th, ironically. I was getting so short of breath and light-headed when standing, and coughing all night and getting no sleep, that I spent as much time as possible sitting, which is when those symptoms didn't bother me as much. As someone who writes a lot, it's easy to get into this rhythm, because it works both sides of things, but it also masked some of the bigger picture for me until late last week. I did get a lot of writing done, though! (more on that later).
The two nights preceding my ER visit was full of such strong coughs all night long (when the humidity tends to be higher here) that I felt like I was developing a hernia in my lower belly. It looks like it's hopefully just a strained muscle, but I still have to hold it tight every time I cough still. Anyway, the few things they did in the EW made me feel immediately better, especially the nebulizer treatment, which is about 1000x more effective than a simple inhalant of Albuterol. It only takes a few minutes, but it really opens your airways up fast! They did a chest X-ray and saw no signs of pneumonia, so yay!
The rest of the protocol was much like last fall treatment:
1. A 5-day course of Prednezone (a steroid that reduces inflammation in lung and bronchial tissue)
2. Add back in the Flonaise nasal spray twice a day (a topical steroid that dries up those passages).
3. Add back in Albuterol up to 3x daily as needed.
4. Try to keep the humidity low, and don't do strenuous things outside when/where there's high humidity.
5. Codeine cough syrup to help suppress the cough enough to get a good night's rest.
6. Use the spirometer to slowly rebuild lung power as tissue inflammation comes down.
7. Daily nasal irrigation to clean out contaminated mucus in your nasal and sinus passages (so simple and yet so effective!)
7. Daily nasal irrigation to clean out contaminated mucus in your nasal and sinus passages (so simple and yet so effective!)
And their follow up advice is go see my primary care doc, and watch out for these symptoms to start the simple treatments above early, and thus not let it get as far as I did. So I'm going to review that with him on Friday.
Long story short, I've really fallen off the exercise wagon because I haven't felt my lung power was up to the task. Luckily I've stayed the same weight wise, so I'm holding at 17 pounds lost. As soon as I get this under control (and keep it under control!) I'm starting up again.
But even preceding this spring's bronchial issues for me, I was dealing my mother's health. She has also had respiratory issues since moving to Minnesota, although with her they almost always take place in the winter. Well, I think I finally got a handle on that as well. Her situation starts out with shortness of breath followed by overall weakness upon standing, which then gets more and more severe. In May she could barely take a few steps without assistance, and she is normally a very active, physically fit person. We had a family event at a friend's business opening and it was really apparent the difficulty she was having. I must have been thinking about it in my sleep, because I woke up early and absolutely knew that she was suffering from dehydration.
Now the thing is, I've figured this out before, but always after the fact, and often forgotten by the time another episode comes along. Here's a few things you should know about my mother: She smokes like a fiend (although I have mostly weaned her off tar-filled cigarettes and onto e-cigarettes, where I have been stealthily reducing the nicotine level over the past year) and she eats like a bird. Her favorite daily diet consists of Pepsi, and picking at food, coffee and - wait for it - Bailey's Irish cream in the morning. The Bailey's is necessary because she doesn't really like coffee! Well, obviously the truth is she simply likes Baileys. But water is definitely something she does not like. Weird.
So I ran out to the store very early and got bananas, Gatorade, and V8 Juice and cut off her coffee and baileys. I literally had to insist she eat half a banana a day and augment her Pepsi with Gatorade and V8 if she couldn't force herself to drink water. I also replaced the coffee with hot boullion. Within 1 day the change was noticeable, within 3 days she felt like a different person, and now she says she feels 10 years younger. It's amazing that simply not keeping your electrolytes in balance can have such a huge impact on your state of well-being. Anyway now we know how to keep her on her feet - bananas and boullion! And as it turns out, for someone who very much doesn't like to move out of her comfort box (which entails the things she did in her youth, and not much outside it) she's found that she actually likes Gatorade, so yay! She doesn't miss the coffee and bailey's now that she can have some other sort of hot drink, so it's been positive on all fronts.
Okay, I'm going to cut this post short now, and try to get another one in after my doc's visit on Friday, as I'm also following up on some other paths that are related. I hope everyone out there is doing well!
Teri
Thursday, March 6, 2014
Status Update: March 6, 2014
Hello everyone! This entry is a follow-up to the ER visit last month.
About a week after that, I went in for an upper endoscopy. This is when they insert a tube with an optic camera down your throat/esophagus/stomach to see what's up when you've had some issues in those areas. My test result showed some slight esophagus damage (from the gastritis episode that sent me to the ER) plus a small hiatal hernia. This is a hernia (bulge) in your stomach that's usually near the esophagus, and sometimes bulges through into it. The doc said that the irritation I noticed in my upper abdomen area while using the recumbent bike could have been caused by pressure on the haital hernia area, perhaps exacerbated by the slightly enlarged liver.
While there is a surgical procedure to 'fix' a hiatal hernia, mine is not severe enough to warrant that. So there are two things to do:
1. Take a 14-day course of Prilosec. This is unlike ant-acids as it can actually help heal some damage caused by gastritis. Since I haven't had that problem before this, and the damage looked slight, hopefully this will minimize it.
2. Reduce/eliminate acidic and spicy foods (coffee, tomatoes, citrus, vinegar-based, etc.).
I started both immediately, cutting back to smaller portions and less acidic foods (like coffee, which I quit drinking and miss!). So the upside to the whole event is that despite not being back on my exercise program yet, I lost 4 pounds last month, for a total of 17 pounds so far. It's a start. I'm finding that it's a bit easier to modify my eating habits with the motivation for NO MORE GASTRITIS! (as opposed to simply wanting to look and feel better). Seriously, if that 12 hour event was a mild case of gastritis, I hope never to experience a severe case - it was painful!
Which means that swimming is back on the schedule, although I'm sort of waiting out the last of winter, as driving on the snow/ice is problematic right now, especially since I've had massive car problems in the last few weeks. I've had the following problems in the last 30 days:
1. Failed power steering (twice!)
2. Sputtering/stalling engine.
I've been under warranty on the power steering issue since last August when the pressure hose was identified as the culprit. Only it turns out that wasn't the problem, although they didn't figure that out until they'd replaced it again. Then they decided it was the power steering pump, only as it turns out it was actually a leak in the rack and pinion! The sputtering/stalling problem was dealt with by another mechanic (a corporate entity like the first, which I will forever more think of as Alien Pepboys vs Predator Firestone). They replaced an engine sensor, wiring, and an engine gasket set for a whopping total of almost $1000, which then went up to over $1400 when they identified a loose ball joint. So now a third mechanic (a family operated business) is doing the last work - the rack and pinion - and in the process of trying to get it aligned, found that a control arm needed to be replaced to do the alignment. As it turns out the control arm is attached to another ball joint, which, while not loose, is quite rusted, and will (so they say) soon be loose.
Long story short, I've been without a car on and off for the last few weeks, and not confident about driving it while I had it, but have hopefully now addressed all the critical issues (I sure hope so, since I paid out $2500 for all the work!). Anyway, hopefully the car is fixed (will find out tomorrow), the snow will melt/spring will arrive, and I'll be back on my swimming schedule sooner rather than later.
I saw my Oncologist last week, and we decided to delay the annual tests until August, since she was pretty happy with how I was doing over all. Normally this would be a PET scan, but new rules limit PET scans to 4 in a life-time, effective last June. I've had over a dozen since my Lymphoma was first diagnosed, and luckily my last one was last April, so I still have the four allowed left. Still, she wants to save these for when they're absolutely needed, so the PET scan in August will be replaced with both a CT scan and a bone scan. Neither of these would catch a blood cancer, like Lymphoma, but they could catch other cancers (transplant patients have a bigger chance of experiencing other cancers due to the high levels of chemotherapy and radiation they undergo during the transplant itself). If I have symptoms of lymphoma, we'll schedule a PET scan, but not before.
Whew, what a winter!
Writing Update: I finished about 1/3rd of book 3 (first draft) but then decided I needed to reorganize the material in those 12 chapters, so it needs to be reworked before continuing on. I have everything outlined, though, and fairly close to finished with the outline for the last book (book 4), so that's exciting.
Also exciting (to me) news: Queen (the iconic band) just announced a North American tour this summer, with Adam Lambert fronting. I'm thrilled because I love Queen, and if anyone can fill in for Freddie Mercury, it's Adam Lambert. They announced 19 dates for June/July in both the US and Canada, so I'm thinking of going if I can get tickets. Chicago is the closest to me, and it's just a 7 hour drive (although that freaks me out a bit given my recent car history!). If the tour in North America goes well they may expand it globally, and it seems that Asia, South America and western Europe nations all want them to perform there. They did a small tour across the UK and Eastern Europe last year and had fantastic reviews. I'm not sure I want to endure the rigors of a big arena (this is an arena tour), but I'm definitely considering it.
That's it for now. Take care everyone, especially if you're experiencing a cold and snowy winter, as we've gotten here in Minnesota this year. I also have some Ukrainian readers of the blog, and I hope they are safe during this time of unrest.
P.S.
A big happy birthday to my sister-in-law Mindy, and congratulations on an 'alls-clear' test to my sister-in-law Peggy.
About a week after that, I went in for an upper endoscopy. This is when they insert a tube with an optic camera down your throat/esophagus/stomach to see what's up when you've had some issues in those areas. My test result showed some slight esophagus damage (from the gastritis episode that sent me to the ER) plus a small hiatal hernia. This is a hernia (bulge) in your stomach that's usually near the esophagus, and sometimes bulges through into it. The doc said that the irritation I noticed in my upper abdomen area while using the recumbent bike could have been caused by pressure on the haital hernia area, perhaps exacerbated by the slightly enlarged liver.
While there is a surgical procedure to 'fix' a hiatal hernia, mine is not severe enough to warrant that. So there are two things to do:
1. Take a 14-day course of Prilosec. This is unlike ant-acids as it can actually help heal some damage caused by gastritis. Since I haven't had that problem before this, and the damage looked slight, hopefully this will minimize it.
2. Reduce/eliminate acidic and spicy foods (coffee, tomatoes, citrus, vinegar-based, etc.).
I started both immediately, cutting back to smaller portions and less acidic foods (like coffee, which I quit drinking and miss!). So the upside to the whole event is that despite not being back on my exercise program yet, I lost 4 pounds last month, for a total of 17 pounds so far. It's a start. I'm finding that it's a bit easier to modify my eating habits with the motivation for NO MORE GASTRITIS! (as opposed to simply wanting to look and feel better). Seriously, if that 12 hour event was a mild case of gastritis, I hope never to experience a severe case - it was painful!
Which means that swimming is back on the schedule, although I'm sort of waiting out the last of winter, as driving on the snow/ice is problematic right now, especially since I've had massive car problems in the last few weeks. I've had the following problems in the last 30 days:
1. Failed power steering (twice!)
2. Sputtering/stalling engine.
I've been under warranty on the power steering issue since last August when the pressure hose was identified as the culprit. Only it turns out that wasn't the problem, although they didn't figure that out until they'd replaced it again. Then they decided it was the power steering pump, only as it turns out it was actually a leak in the rack and pinion! The sputtering/stalling problem was dealt with by another mechanic (a corporate entity like the first, which I will forever more think of as Alien Pepboys vs Predator Firestone). They replaced an engine sensor, wiring, and an engine gasket set for a whopping total of almost $1000, which then went up to over $1400 when they identified a loose ball joint. So now a third mechanic (a family operated business) is doing the last work - the rack and pinion - and in the process of trying to get it aligned, found that a control arm needed to be replaced to do the alignment. As it turns out the control arm is attached to another ball joint, which, while not loose, is quite rusted, and will (so they say) soon be loose.
Long story short, I've been without a car on and off for the last few weeks, and not confident about driving it while I had it, but have hopefully now addressed all the critical issues (I sure hope so, since I paid out $2500 for all the work!). Anyway, hopefully the car is fixed (will find out tomorrow), the snow will melt/spring will arrive, and I'll be back on my swimming schedule sooner rather than later.
I saw my Oncologist last week, and we decided to delay the annual tests until August, since she was pretty happy with how I was doing over all. Normally this would be a PET scan, but new rules limit PET scans to 4 in a life-time, effective last June. I've had over a dozen since my Lymphoma was first diagnosed, and luckily my last one was last April, so I still have the four allowed left. Still, she wants to save these for when they're absolutely needed, so the PET scan in August will be replaced with both a CT scan and a bone scan. Neither of these would catch a blood cancer, like Lymphoma, but they could catch other cancers (transplant patients have a bigger chance of experiencing other cancers due to the high levels of chemotherapy and radiation they undergo during the transplant itself). If I have symptoms of lymphoma, we'll schedule a PET scan, but not before.
Whew, what a winter!
Writing Update: I finished about 1/3rd of book 3 (first draft) but then decided I needed to reorganize the material in those 12 chapters, so it needs to be reworked before continuing on. I have everything outlined, though, and fairly close to finished with the outline for the last book (book 4), so that's exciting.
Also exciting (to me) news: Queen (the iconic band) just announced a North American tour this summer, with Adam Lambert fronting. I'm thrilled because I love Queen, and if anyone can fill in for Freddie Mercury, it's Adam Lambert. They announced 19 dates for June/July in both the US and Canada, so I'm thinking of going if I can get tickets. Chicago is the closest to me, and it's just a 7 hour drive (although that freaks me out a bit given my recent car history!). If the tour in North America goes well they may expand it globally, and it seems that Asia, South America and western Europe nations all want them to perform there. They did a small tour across the UK and Eastern Europe last year and had fantastic reviews. I'm not sure I want to endure the rigors of a big arena (this is an arena tour), but I'm definitely considering it.
That's it for now. Take care everyone, especially if you're experiencing a cold and snowy winter, as we've gotten here in Minnesota this year. I also have some Ukrainian readers of the blog, and I hope they are safe during this time of unrest.
P.S.
A big happy birthday to my sister-in-law Mindy, and congratulations on an 'alls-clear' test to my sister-in-law Peggy.
Tuesday, February 4, 2014
Status Update: Feb. 4, 2014
Hiya!
Another update. The pain in my stomach was bad the night before, so yesterday I went into the emergency room at my hospital. After a 5 hour wait (!) they put in an IV to administer pain and anti-nausea meds, as well as fluids. Here's the funny part; I rated my pain (on a scale of 1-10) when I entered at a 6-7, but just minutes after the pain med push in the IV, it went up even higher (maybe to an 8), and stayed that way for a good 40 minutes. During that time they did bloodwork, chest x-ray and ultrasound.
Good news - the bloodwork was all normal and the chest x-ray is okay. The ultrasound did show some fat in my liver, which can cause stretching and expansion, and can account for the pain. A CT scan would be more accurate and give more info, but the doc didn't want to do that unless necessary because I've had so many of those in the last couple of years. In his words, he didn't want me to 'light up like a Christmas tree'. He also though it was possible I had a stomach issue (an ulcer perhaps) and wants me to follow up with my primary care and a gastrointestinal specialist.
So I'm seeing my PCP on Friday (when my next INR was already scheduled), and hopefully he'll have a referral for the specialist before then (since he can access my hospital records right now - he's in that network). The ER doc gave me scripts for pain (percecet) and for acid control (xanax).
My PCP in Tucson had long ago noted (as a result of an earlier scan) that my liver was about 1 cm. larger than normal, but I have no idea if this scan showed the same or a different result - I'll ask on Friday. So for now it's basically reduce acidic foods and follow-up with the GI specialist. What a pain, but at least I got a good night's sleep last night.
Here's the odd connection (to me, at least). Several times before last spring, I attempted to start an exercise program using my stationary recumbent bike, but each time I developed tenderness in that region and ultimately stopped. Then I started swimming in May, and added in the bike but at a lower level. As the months passed I added more of the bike to even out the two forms of exercise. And now the tenderness is back, with some added sharper/longer pains periodically. It makes me wonder if the biking motion was resulting in additional pressure on that somewhat enlarged organ (my liver) and if that was irritating it. Or even if the bit of extra muscle I'd been developing was adding pressure to that area. I really have no idea, but it will be interesting to follow up with the GI guy and see.
Since I had my gall bladder removed in 1990, there could be another connection. Stomach fluids are of course acidic, to break down food, and gall bladder bile is caustic - to counteract the acidic stomach fluid. Without the gall bladder, stomach acid can be a bigger problem. I don't have a history of 'heart burn' from stomach acid (except during the time leading up my gall bladder being removed), but if I've developed an ulcer, then that could be more of an issue now. Of course the previous history of a bunch of chemo can have caused a lot of things, so that's one possibility. If so the Xanax should help, so I'll be watching that. Again, looking forward to the GI visit to resolve this!
Another update. The pain in my stomach was bad the night before, so yesterday I went into the emergency room at my hospital. After a 5 hour wait (!) they put in an IV to administer pain and anti-nausea meds, as well as fluids. Here's the funny part; I rated my pain (on a scale of 1-10) when I entered at a 6-7, but just minutes after the pain med push in the IV, it went up even higher (maybe to an 8), and stayed that way for a good 40 minutes. During that time they did bloodwork, chest x-ray and ultrasound.
Good news - the bloodwork was all normal and the chest x-ray is okay. The ultrasound did show some fat in my liver, which can cause stretching and expansion, and can account for the pain. A CT scan would be more accurate and give more info, but the doc didn't want to do that unless necessary because I've had so many of those in the last couple of years. In his words, he didn't want me to 'light up like a Christmas tree'. He also though it was possible I had a stomach issue (an ulcer perhaps) and wants me to follow up with my primary care and a gastrointestinal specialist.
So I'm seeing my PCP on Friday (when my next INR was already scheduled), and hopefully he'll have a referral for the specialist before then (since he can access my hospital records right now - he's in that network). The ER doc gave me scripts for pain (percecet) and for acid control (xanax).
My PCP in Tucson had long ago noted (as a result of an earlier scan) that my liver was about 1 cm. larger than normal, but I have no idea if this scan showed the same or a different result - I'll ask on Friday. So for now it's basically reduce acidic foods and follow-up with the GI specialist. What a pain, but at least I got a good night's sleep last night.
Here's the odd connection (to me, at least). Several times before last spring, I attempted to start an exercise program using my stationary recumbent bike, but each time I developed tenderness in that region and ultimately stopped. Then I started swimming in May, and added in the bike but at a lower level. As the months passed I added more of the bike to even out the two forms of exercise. And now the tenderness is back, with some added sharper/longer pains periodically. It makes me wonder if the biking motion was resulting in additional pressure on that somewhat enlarged organ (my liver) and if that was irritating it. Or even if the bit of extra muscle I'd been developing was adding pressure to that area. I really have no idea, but it will be interesting to follow up with the GI guy and see.
Since I had my gall bladder removed in 1990, there could be another connection. Stomach fluids are of course acidic, to break down food, and gall bladder bile is caustic - to counteract the acidic stomach fluid. Without the gall bladder, stomach acid can be a bigger problem. I don't have a history of 'heart burn' from stomach acid (except during the time leading up my gall bladder being removed), but if I've developed an ulcer, then that could be more of an issue now. Of course the previous history of a bunch of chemo can have caused a lot of things, so that's one possibility. If so the Xanax should help, so I'll be watching that. Again, looking forward to the GI visit to resolve this!
Sunday, February 2, 2014
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