Saturday, February 13, 2010
Tick tock, tick tock....
I was doing the tick tock, tick tock leading up to the BMB and surgery. I had several days of time in the present, then back to the tick tock, tick, tock of waiting for the results. It sometimes seems I am always in a countdown to some medical issue or the waiting game for results. I dream of not having this cycle at all and am hopeful that after my Seattle trip that there will be more time inbetween.
And Off We Went
The day after surgery was a BIG one, long planned and much anticipated. John Paul played in his first official basketball game. And it was a double header. He and his team, The Orange Beavers (kind of like what all the first graders' permanent front teeth look like right now) did a terrific job! It is interesting to me how the refs basically let things move on as long as the players are in motion and not heinously out of bounds. No scores are kept but everyone watching is taking mental note. It is too funny how competitive we are as parents, checking our players out to see if they have a "future". Some other teams were even keeping their own stats. Of first graders. Crazy!
We hightailed it after the game over to Idaho and to Triple Play in Hayden. It is a pretty cool indoor water park with attached bowling, laser tag, putt-putt, and arcade. It is also oh so conveniently attached to a hotel..... We get checked in and off to the party room to celebrate Gabriel's 5th birthday.
Keep in mind this takes some significant navigating for me. Because I am on immunosuppressants to prevent rejection, large crowded places, especially full of kids, is not on my approved activity list. But some things are just worth throwing caution to the wind, right? So a quick in and then a quick out after pizza, ice cream cake, and gifts. I would have had to spend the rest of the day in the hotel room anyways because of "Germs". So I'm back in the room, hiding from kids and people with germs, ice packing my boob surgery site. I take my good times on the road....
Craig went with the boys to join the others in the water park. They had a great time as expected. I am naturally jealous but at the same time very pleased that they had so much fun.
I am up and down all night, the usual for me, plus some extra with the surgery discomfort. I think I was so pissed and irritated that I had to have the surgery that I forgot I was having surgery. If that makes any sense. Surgery hurts.
Free hot breakfast, with lots of kids. It's not so crowded if you are there at 6:00 am when they open. We immunosuppressed people know all these tricks. BUT....we immunosuppressed people are not allowed to eat mass produced food, that is sitting out where people can put their germs in them, and sitting for who knows how long at possibily the wrong temperatures. Huge danger zone! But I was hungry, it was free, and I needed to take another pain pill.
Next we get over to Kootenai Medical Center to see Keri and meet Liam. Children, of course, are not allowed to visit in the hospital, so Craig and I took turns going in. My turn involves breaking my immunosuppressed rules, again, by even entering the hospital. You would be amazed at how many germs are in hospitals. Not just the sick patients. So hand sanitizer in hand, mask on, I go up to Maternity. I am promptly stopped as the nurse thinks I am sick and she is going to kick me out. I explain the situation and the she lectures me about being in the hospital "with my condition". Thanks for the concern.
I must wear the mask around the baby but I did break the "three feet" rule. I did not touch the baby or hold the baby. These particular rules are derived from neither I nor the baby have an immune systems. Neither of us have our vaccinations yet. We are at present a two-way germ infection. But I am looking forward to breaking those rules too someday.
Keri is beautiful. The baby is beautiful. And both are doing well. To my surprise, I cried when I met Liam and saw Keri holding him. It triggered a cascade of emotions.
On our way back to Spokane, we stopped in Spokane Valley for the boys to attend a birthday party at Chuck E. Cheese. Okay, I give in on this one. No way, no how. A stay in the car while Craig takes the kids in. But.... that morning Brennan woke up sick with a cold. John Paul had a great time.
Now I have to avoid my own child who has LOTS of icky germs. And as a Mom, all you want to do is love on them and console and comfort. Ugh, this is all so hard! He ended up home from school the next day too. And then the day after that Craig was home sick with the cold. Talk about having to isolate and avoid.... All the standard immunosuppressed rituals began and continued. I won't bore you with it, but it's quite an undertaking.
The super Bowl took up the rest of the afternoon. GO SAINTS!!!!!!
Good news is that we are all healthy now.
We hightailed it after the game over to Idaho and to Triple Play in Hayden. It is a pretty cool indoor water park with attached bowling, laser tag, putt-putt, and arcade. It is also oh so conveniently attached to a hotel..... We get checked in and off to the party room to celebrate Gabriel's 5th birthday.
Keep in mind this takes some significant navigating for me. Because I am on immunosuppressants to prevent rejection, large crowded places, especially full of kids, is not on my approved activity list. But some things are just worth throwing caution to the wind, right? So a quick in and then a quick out after pizza, ice cream cake, and gifts. I would have had to spend the rest of the day in the hotel room anyways because of "Germs". So I'm back in the room, hiding from kids and people with germs, ice packing my boob surgery site. I take my good times on the road....
Craig went with the boys to join the others in the water park. They had a great time as expected. I am naturally jealous but at the same time very pleased that they had so much fun.
I am up and down all night, the usual for me, plus some extra with the surgery discomfort. I think I was so pissed and irritated that I had to have the surgery that I forgot I was having surgery. If that makes any sense. Surgery hurts.
Free hot breakfast, with lots of kids. It's not so crowded if you are there at 6:00 am when they open. We immunosuppressed people know all these tricks. BUT....we immunosuppressed people are not allowed to eat mass produced food, that is sitting out where people can put their germs in them, and sitting for who knows how long at possibily the wrong temperatures. Huge danger zone! But I was hungry, it was free, and I needed to take another pain pill.
Next we get over to Kootenai Medical Center to see Keri and meet Liam. Children, of course, are not allowed to visit in the hospital, so Craig and I took turns going in. My turn involves breaking my immunosuppressed rules, again, by even entering the hospital. You would be amazed at how many germs are in hospitals. Not just the sick patients. So hand sanitizer in hand, mask on, I go up to Maternity. I am promptly stopped as the nurse thinks I am sick and she is going to kick me out. I explain the situation and the she lectures me about being in the hospital "with my condition". Thanks for the concern.
I must wear the mask around the baby but I did break the "three feet" rule. I did not touch the baby or hold the baby. These particular rules are derived from neither I nor the baby have an immune systems. Neither of us have our vaccinations yet. We are at present a two-way germ infection. But I am looking forward to breaking those rules too someday.
Keri is beautiful. The baby is beautiful. And both are doing well. To my surprise, I cried when I met Liam and saw Keri holding him. It triggered a cascade of emotions.
On our way back to Spokane, we stopped in Spokane Valley for the boys to attend a birthday party at Chuck E. Cheese. Okay, I give in on this one. No way, no how. A stay in the car while Craig takes the kids in. But.... that morning Brennan woke up sick with a cold. John Paul had a great time.
Now I have to avoid my own child who has LOTS of icky germs. And as a Mom, all you want to do is love on them and console and comfort. Ugh, this is all so hard! He ended up home from school the next day too. And then the day after that Craig was home sick with the cold. Talk about having to isolate and avoid.... All the standard immunosuppressed rituals began and continued. I won't bore you with it, but it's quite an undertaking.
The super Bowl took up the rest of the afternoon. GO SAINTS!!!!!!
Good news is that we are all healthy now.
February 5 Was A Busy Day!
Two of my dearest friends already had Friday, February 5 reserved! I certainly wasn't going to allow a little surgery to get in the way!
I am pleased to share with you that Liam Garr-Coles entered this world at 9:00 am that day. Keri gave birth via c-section to a handsome and healthy baby boy. My sincerest congrats go out to Keri, Gordy, and their daughter, now a big sister, Jessi. Although I didn't get to visit Keri and Liam until later, it was a day of celebration.
February 5 is also the birthday of the son of another one of my best friends, Belinda. Gabriel turned 5 that day, now sharing Liam's birthday.
Many blessings to both families!
I am pleased to share with you that Liam Garr-Coles entered this world at 9:00 am that day. Keri gave birth via c-section to a handsome and healthy baby boy. My sincerest congrats go out to Keri, Gordy, and their daughter, now a big sister, Jessi. Although I didn't get to visit Keri and Liam until later, it was a day of celebration.
February 5 is also the birthday of the son of another one of my best friends, Belinda. Gabriel turned 5 that day, now sharing Liam's birthday.
Many blessings to both families!
And That Was Only Thursday....
Why not get all the suffering done at one time? So the day after my BMB, I had surgery. Long story short, I had found some nodules next to my mastectomy scar, in the area my original breast cancer was. A couple of doctor appointments and an uncertain ultrasound later, I was headed off to have the nodules removed.
The surgery time was pushed back several times, but late Friday afternoon my breast surgeon (kind of weird when one no longer has breasts) created a new incision and removed the nodules. Unlike the day before, they had the meds to push my blood pressure up and I remember none of it and escaped the apin. Thank You Dr. Anesthesiologist!
Again, after the requesite juice, toast, pee, and IV removal, I was on my way. No pain at all. Until all the local wore off a few hours later...
Lots of ice packs and a couple of pain pills over the next few days. But they were good days and worth not following doctors orders to take it easy, right?
The surgery time was pushed back several times, but late Friday afternoon my breast surgeon (kind of weird when one no longer has breasts) created a new incision and removed the nodules. Unlike the day before, they had the meds to push my blood pressure up and I remember none of it and escaped the apin. Thank You Dr. Anesthesiologist!
Again, after the requesite juice, toast, pee, and IV removal, I was on my way. No pain at all. Until all the local wore off a few hours later...
Lots of ice packs and a couple of pain pills over the next few days. But they were good days and worth not following doctors orders to take it easy, right?
What Does One Wear?
Oh, I forgot to tell you about an interesting dilema. I always struggle with what to wear to BMB's and other tests and procedures. "Comfy Clothes" are required. But does that mean sweats? Yoga pants? Old jeans? Is this for my comfort or so they can get me dressed more quickly and out the door, freeing space for the next patient?
This time I wore my black Nike yoga pants, my black Nike wicking shirt, and my white Danskin zip hoodie. White socks with black sneakers. Thanks, Denise, for this comfy outfit!
This time I wore my black Nike yoga pants, my black Nike wicking shirt, and my white Danskin zip hoodie. White socks with black sneakers. Thanks, Denise, for this comfy outfit!
But Life Does Go On
So I didn't stay "Closed" for long.... Still just as stubborn, just as determined that I can cut corners, cheat on the rules, do it my way, etc..... Just because I am in the midst of a medical event or crisis, life does go on. And I want to be a part of it!
So, going back a bit. Bone Marrow Biopsy. John Paul decided that morning that he really wanted to come with us and see where I was going, what was going on there, who did what, etc. So I called and got permission for him to come. The rules for the Chemo Suite, where the bone marrow biopsy procedure room is, are that no children under the age of 12 are permitted. So long ago, I embellished this a bit to tell the boys that no children under 12 were allowed at the Oncology office. Seemed like a good idea to me. I really don't think they even need to see all the patients, in varying forms of despair and illness, in the waiting room. And the patients don't need my kids staring at them or making a ruckus, as boys tend to do.
The Chemo Suite is this mysterious place off the waiting room. The doors are always closed until someone comes out and ominously calls your name. It's not fun back there. You know you are in for it as you pass through the doorway. Blue suits galore. (In Sally Land and the cancer world, the blue suit means you are about to get drugs to almost kill you. Chemo+blue suit.)
So John Paul is allowed back with me as I settled in to my pre-procedure cancer suite treatment chair. (Being back in these chairs always turns up the anxiety a notch. I have already spent too much time in them. I did all my breast cancer chemo in them. I tanked out in September in one of them and left the Chemo Suite on a gurney for a joyful ambulance ride to the hospital. Well, that's another story.) Quickly I am surrounded by a couple of nurses and a couple of lab people. An IV needs to be started, so my arm is hot-packed to get a compliant vein. (I only have one arm to choose from as my other is off limits due to node removal with my mastectomy.) John Paul is rapidly overwhelmed. So when the head nurse says he can't stay (despite permission to do so), this is not a bad thing. He and Craig go off to the waiting room to wait for me to do my thing. Five minutes later John Paul announces he is ready to go back to school. Craig takes him.
I am proud of him to have the courage to go and to want to see what he needed to see. It seems part of his jouney that he needed to know, needed to see a little of where I am always going. But school is a far better place!
Anyways, so IV is in, then 20 plus vials of blood drawn. This is a part of the tests past the ying-yang that I am going through in preparation for my Seattle trip. They are testing EVERYTHING it seems. Then there is a monthly CMV test kit (CMV is a virus that I got from my donor. Don't panic: I am fine.) Then there is the quarterly Respiratory Study I agreed to participate in. Nasal swabs and throat swabs. I prefer to do this myself. Okay, now we are ready to prep for Biopsy.
Transfer into BMB Procedure room. Questions, answers, blood pressure cuff on ankle (can't use arms due to mastectomy), my repeating I would like enough drugs so it doesn't hurt and so I won't remember it. Heart monitor on. Nurse is ready. Lab techs in to open and prep collection kit. Petri dishes, slides, tubes. REALLY HUGE AND LONG NEEDLE prepped. Anxiety brewing.
Then we wait. I read a trash mag while laying on my stomach.
Doctor is ready. I get my drugs and BMB begins. My blood pressure is dropping so drugs stop. I beg for the drugs or for the doctor to stop. I get neither. Pride is gone and I am now crying from pain. I HATE BMB's!
They get their marrow. They get their chunk of bone. (This is all done on your hip bone in your lower back.) I am still crying and want to go home.
I am thanking God that John Paul is not here. Bad decision on my part.
I drink my obligatory juice. I eat my obligatory crackers. I pee. See ya.
So, going back a bit. Bone Marrow Biopsy. John Paul decided that morning that he really wanted to come with us and see where I was going, what was going on there, who did what, etc. So I called and got permission for him to come. The rules for the Chemo Suite, where the bone marrow biopsy procedure room is, are that no children under the age of 12 are permitted. So long ago, I embellished this a bit to tell the boys that no children under 12 were allowed at the Oncology office. Seemed like a good idea to me. I really don't think they even need to see all the patients, in varying forms of despair and illness, in the waiting room. And the patients don't need my kids staring at them or making a ruckus, as boys tend to do.
The Chemo Suite is this mysterious place off the waiting room. The doors are always closed until someone comes out and ominously calls your name. It's not fun back there. You know you are in for it as you pass through the doorway. Blue suits galore. (In Sally Land and the cancer world, the blue suit means you are about to get drugs to almost kill you. Chemo+blue suit.)
So John Paul is allowed back with me as I settled in to my pre-procedure cancer suite treatment chair. (Being back in these chairs always turns up the anxiety a notch. I have already spent too much time in them. I did all my breast cancer chemo in them. I tanked out in September in one of them and left the Chemo Suite on a gurney for a joyful ambulance ride to the hospital. Well, that's another story.) Quickly I am surrounded by a couple of nurses and a couple of lab people. An IV needs to be started, so my arm is hot-packed to get a compliant vein. (I only have one arm to choose from as my other is off limits due to node removal with my mastectomy.) John Paul is rapidly overwhelmed. So when the head nurse says he can't stay (despite permission to do so), this is not a bad thing. He and Craig go off to the waiting room to wait for me to do my thing. Five minutes later John Paul announces he is ready to go back to school. Craig takes him.
I am proud of him to have the courage to go and to want to see what he needed to see. It seems part of his jouney that he needed to know, needed to see a little of where I am always going. But school is a far better place!
Anyways, so IV is in, then 20 plus vials of blood drawn. This is a part of the tests past the ying-yang that I am going through in preparation for my Seattle trip. They are testing EVERYTHING it seems. Then there is a monthly CMV test kit (CMV is a virus that I got from my donor. Don't panic: I am fine.) Then there is the quarterly Respiratory Study I agreed to participate in. Nasal swabs and throat swabs. I prefer to do this myself. Okay, now we are ready to prep for Biopsy.
Transfer into BMB Procedure room. Questions, answers, blood pressure cuff on ankle (can't use arms due to mastectomy), my repeating I would like enough drugs so it doesn't hurt and so I won't remember it. Heart monitor on. Nurse is ready. Lab techs in to open and prep collection kit. Petri dishes, slides, tubes. REALLY HUGE AND LONG NEEDLE prepped. Anxiety brewing.
Then we wait. I read a trash mag while laying on my stomach.
Doctor is ready. I get my drugs and BMB begins. My blood pressure is dropping so drugs stop. I beg for the drugs or for the doctor to stop. I get neither. Pride is gone and I am now crying from pain. I HATE BMB's!
They get their marrow. They get their chunk of bone. (This is all done on your hip bone in your lower back.) I am still crying and want to go home.
I am thanking God that John Paul is not here. Bad decision on my part.
I drink my obligatory juice. I eat my obligatory crackers. I pee. See ya.
Thursday, February 4, 2010
And Here We Go
I officially am "Closed" starting this morning. My bone marrow biopsy is at 11:00 a.m. I always choose to have sedation which makes a rather unpleasant procedure much more tolerable. When I had my first one, on July 11, 2008, at my six week breast cancer post-chemo follow-up visit, it was awful. A huge long needle is inserted through the hip bone to extract both marrow and a piece of bone. It is painful and the tugging sensation is enough to put me over the edge. Why be aware of it, why feel it all and remember it, when sedation is available? My hat is off to the troopers who can do it.
Today I add a new circle scar to the collection I am gathering on my hips. "Right or left?", they will ask. I think Left today.
BMB's naturally cause me a fair amount of anxiety because they are both icky as well as diagnostic of where my leukemia status is. It takes about a week to get all the test results in. The marrow is analyzed on a cellular and molecular level so there are a lot of tests performed on the samples. The tests have very fancy names.
So The Waiting Game begins yet again....
This BMB is in preparation for my One Year Anniversary of Transplant. Can you believe that?! I will write more about this later but I am officially preparing for my Anniversary Trip to Seattle in March. So in addition to the BMB, they will draw about 15 tubes of blood today for a zillion of tests that Seattle has ordered as well. So I am fasting today too.
So in addition to being officially "Closed" I am also officially "Nervous" and officially "Goofy" from sedation today and anesthesia with surgery tomorrow. Let the good times roll!
Today I add a new circle scar to the collection I am gathering on my hips. "Right or left?", they will ask. I think Left today.
BMB's naturally cause me a fair amount of anxiety because they are both icky as well as diagnostic of where my leukemia status is. It takes about a week to get all the test results in. The marrow is analyzed on a cellular and molecular level so there are a lot of tests performed on the samples. The tests have very fancy names.
So The Waiting Game begins yet again....
This BMB is in preparation for my One Year Anniversary of Transplant. Can you believe that?! I will write more about this later but I am officially preparing for my Anniversary Trip to Seattle in March. So in addition to the BMB, they will draw about 15 tubes of blood today for a zillion of tests that Seattle has ordered as well. So I am fasting today too.
So in addition to being officially "Closed" I am also officially "Nervous" and officially "Goofy" from sedation today and anesthesia with surgery tomorrow. Let the good times roll!
Tuesday, February 2, 2010
The Clock Is Ticking
The Surgery Countdown has hit me hard. I conveniently forgot I have my Bone Marrow Biopsy on Thursday, so I will be down for the count after 11:00 am...... So what can I cram into today and tomorrow? What is most important?
Ah, the eternal question. It is difficult for me to decipher what is important versus what is priority. It all snowballs into that constant sense of being WAY far behind and disorganized.
I am not writing well right now. Be back later.....
Ah, the eternal question. It is difficult for me to decipher what is important versus what is priority. It all snowballs into that constant sense of being WAY far behind and disorganized.
I am not writing well right now. Be back later.....
The Staircase
"Faith is taking the first step even when you don't see the whole staircase."
Martin Luther King, Jr.
Have you ever been to the Winchester Mystery House in San Jose, CA? If you have, I think this is my destiny!
Martin Luther King, Jr.
Have you ever been to the Winchester Mystery House in San Jose, CA? If you have, I think this is my destiny!
Monday, February 1, 2010
Residual Breast Tissue Lumps
So when I went to my GYN appointment for the regularly scheduled colpo, I mentioned to my doctor (Highly recommend him: Dr. Shawn Barrong at Northwest OBGYN. His nurse, Denise, also rocks! They delivered both my beautiful boys.) that I was feeling some lumps where my original breast cancer was. My theory was that I had lost so much weight that I was feeling scar tissue that had always been there but that I just couldn't feel.
His response after palpating the area was that I should go back to my surgeon. He, unfortunately, retired last year (Dr. Cammack, I will always be a fan!). So Dr. Barrong ordered an ultrasound. My busy schedule over the next few days (yes, really) resulted in my having it done mid-week the next week. I lucked out and got a breast imaging specialist, who said he did not think it was scar tissue or fat. Frankly he didn't know what it was. But with my history, blah, blah, blah, I should just get the nodules taken out.
So, back to the Oncology Sort of Afternoon, the doctor says I should go see Dr. Martinez, a Breast Surgeon, and that she will call and get me in. Less that 48 hours later, I am in a huge, albeit nifty, robe at my new surgeon's office. We agreed that it's better to just get the nodules out, whatever they are. They will need to come out before reconstruction surgery regardless.
Surgery is this Friday, February 5. Ugh.
I am going to skip my feelings about all this for now, but basically I am disgusted. Perhaps I will feel more expressive later.
So now I am to begin all the preparations that need to take place. I kind of have developed my own "Getting Ready for Medical Crisis" checklist, from grocery shopping to changing linens, to school rides and more. Thank you, in advance, to all of you who will undoubtedly be there to help us out once again.
Craig and I know the drill. We have told the boys that it is a surgery to help get ready for my new boobs. They think it's funny......
His response after palpating the area was that I should go back to my surgeon. He, unfortunately, retired last year (Dr. Cammack, I will always be a fan!). So Dr. Barrong ordered an ultrasound. My busy schedule over the next few days (yes, really) resulted in my having it done mid-week the next week. I lucked out and got a breast imaging specialist, who said he did not think it was scar tissue or fat. Frankly he didn't know what it was. But with my history, blah, blah, blah, I should just get the nodules taken out.
So, back to the Oncology Sort of Afternoon, the doctor says I should go see Dr. Martinez, a Breast Surgeon, and that she will call and get me in. Less that 48 hours later, I am in a huge, albeit nifty, robe at my new surgeon's office. We agreed that it's better to just get the nodules out, whatever they are. They will need to come out before reconstruction surgery regardless.
Surgery is this Friday, February 5. Ugh.
I am going to skip my feelings about all this for now, but basically I am disgusted. Perhaps I will feel more expressive later.
So now I am to begin all the preparations that need to take place. I kind of have developed my own "Getting Ready for Medical Crisis" checklist, from grocery shopping to changing linens, to school rides and more. Thank you, in advance, to all of you who will undoubtedly be there to help us out once again.
Craig and I know the drill. We have told the boys that it is a surgery to help get ready for my new boobs. They think it's funny......
An Oncology Sort of Afternoon
I think I left off in the middle of the day last Monday.
So I came back to Spokane from the Pain Management Clinic in Coeur d'Alene, Idaho, for my afternoon appointment with my Oncologist. These appointments do tend to be either a morning or afternoon event, in "expect to be there for as long as it takes." And this one was quite the appointment! First there was my colposcopy results to mull over. Then my most recent hospital visit earlier this month to discuss. Medication lists were updated and necessary refills/adjustment determined. And since I am ignoring the colpo/gyn problems for now, there were still two huge items on the agenda:
1. Residual breast tissue lumps
2. Transplant anniversary trip to Seattle
And these two weighty items get their own posts, my friends.
Other than that, it was a day like any other day......
So I came back to Spokane from the Pain Management Clinic in Coeur d'Alene, Idaho, for my afternoon appointment with my Oncologist. These appointments do tend to be either a morning or afternoon event, in "expect to be there for as long as it takes." And this one was quite the appointment! First there was my colposcopy results to mull over. Then my most recent hospital visit earlier this month to discuss. Medication lists were updated and necessary refills/adjustment determined. And since I am ignoring the colpo/gyn problems for now, there were still two huge items on the agenda:
1. Residual breast tissue lumps
2. Transplant anniversary trip to Seattle
And these two weighty items get their own posts, my friends.
Other than that, it was a day like any other day......
John Paul's First Gig
My handsome and reverent boy is on the home page for his school, All Saints. I guess this is his first gig/photo op. How proud am I?!
Take a peek if you have time, at www.allsaintsspokane.org
(I tried to post a link with no success, so I leave the work to you!)
I do have to say, all kidding aside, John Paul's spritual development constantly amazes me. His journey has become a part of my journey, and he inspires me daily in his knowledge and thirst for more.
Take a peek if you have time, at www.allsaintsspokane.org
(I tried to post a link with no success, so I leave the work to you!)
I do have to say, all kidding aside, John Paul's spritual development constantly amazes me. His journey has become a part of my journey, and he inspires me daily in his knowledge and thirst for more.
Thursday, January 28, 2010
The Pain Management Clinic Experience
I mentioned in two posts ago that I had gone over to Idaho to the Pain Management Clinic. Interestingly, it is the only clinic, and the only pain management doctor, in our entire area.
I have learned how difficult, sensitive, and sometimes touchy the subject and treatment of pain is. Doctors and other providers are constantly vigilant for pain med junkies. They have to be. Some people shop doctors, clinics, urgent cares, ER's, and hospitals for pain meds. They rob pharmacies, steal scrip pads, and alter scrips they legitimately get. They rob from people they know possess them (yes, a little scary). It really is pretty crazy how extensive the problem is.
Pain Management Contracts are entered between some patients and their providers to state in writing how much pain med someone can get in a certain period of time. I think that providers also have to watch their patients who are legitimately on the meds because they could turn out to really, really like them and want more and more. Even when they no longer need them.
Personally, I don't get it. Most pain meds make me nauseous or vomit. The ones that don't certainly don't make me feel euphoria. But I know some people really enjoy them and apparently get a good high. In fact, one of my best childhood friends has fought this addition since his teens.
Anyways, I always feel awkward discussing my pain and my need for pain meds. I have this strong need to not be viewed as a junkie or that I manipulate my husband's position to somehow have better access to them. And I also really don't want to become addicted.
There was also the confrontation I had with a Group Health Hospitalist during a hospital stay in September. Long story short, this yahoo thought I was a pain med seeker after I asked for a pain pill in the middle of the night. So the next day he comes in to do his visit/exam and insinuates that I was looking for a high. Asshole. Fired him, and gave the nursing staff a good laugh.
I guess this is in part why there are Pain Management Specialists. They screen out the users. They also end up dealing with people like me who all the traditional regimens are still not enough. I was apprehensive that they would just write me a scrip for 500 pills of something...... The good news is that they felt we had several options left to try, utilizing both my current opioid meds along with other medications that specifically target nerve pain. THANK YOU, THANK YOU! I was elated that there was hope. Someday, I would like to sleep more than a little here and there due to pain. I would like to be able to move throughout a normal day without restriction due to pain. And maybe someday I could add some physical activity without all the pain. My "high" would be good sleep and no pain!
Unfortunately, they did tell me that their experience with cancer patients with neuropathy (that's what causes all my pain) can be rocky. It can take a lot of fine-tuning. And sometimes they can reach improvement but not total control of the pain. So they ask you to keep in mind that down the road they may have to find a more opiate-based regimen. And once again, a doctor looked me in the eye, with that serious and grim face, and delivered his clincher that the pain often never gets better or goes away. Huh. I'll go with the above paragraph, thany you very much!
I finally gave up trying to sleep tonight but I am optimistic that there ideas can make some big improvements. I like optimism and I like hope. And I LOVE good news!
I have learned how difficult, sensitive, and sometimes touchy the subject and treatment of pain is. Doctors and other providers are constantly vigilant for pain med junkies. They have to be. Some people shop doctors, clinics, urgent cares, ER's, and hospitals for pain meds. They rob pharmacies, steal scrip pads, and alter scrips they legitimately get. They rob from people they know possess them (yes, a little scary). It really is pretty crazy how extensive the problem is.
Pain Management Contracts are entered between some patients and their providers to state in writing how much pain med someone can get in a certain period of time. I think that providers also have to watch their patients who are legitimately on the meds because they could turn out to really, really like them and want more and more. Even when they no longer need them.
Personally, I don't get it. Most pain meds make me nauseous or vomit. The ones that don't certainly don't make me feel euphoria. But I know some people really enjoy them and apparently get a good high. In fact, one of my best childhood friends has fought this addition since his teens.
Anyways, I always feel awkward discussing my pain and my need for pain meds. I have this strong need to not be viewed as a junkie or that I manipulate my husband's position to somehow have better access to them. And I also really don't want to become addicted.
There was also the confrontation I had with a Group Health Hospitalist during a hospital stay in September. Long story short, this yahoo thought I was a pain med seeker after I asked for a pain pill in the middle of the night. So the next day he comes in to do his visit/exam and insinuates that I was looking for a high. Asshole. Fired him, and gave the nursing staff a good laugh.
I guess this is in part why there are Pain Management Specialists. They screen out the users. They also end up dealing with people like me who all the traditional regimens are still not enough. I was apprehensive that they would just write me a scrip for 500 pills of something...... The good news is that they felt we had several options left to try, utilizing both my current opioid meds along with other medications that specifically target nerve pain. THANK YOU, THANK YOU! I was elated that there was hope. Someday, I would like to sleep more than a little here and there due to pain. I would like to be able to move throughout a normal day without restriction due to pain. And maybe someday I could add some physical activity without all the pain. My "high" would be good sleep and no pain!
Unfortunately, they did tell me that their experience with cancer patients with neuropathy (that's what causes all my pain) can be rocky. It can take a lot of fine-tuning. And sometimes they can reach improvement but not total control of the pain. So they ask you to keep in mind that down the road they may have to find a more opiate-based regimen. And once again, a doctor looked me in the eye, with that serious and grim face, and delivered his clincher that the pain often never gets better or goes away. Huh. I'll go with the above paragraph, thany you very much!
I finally gave up trying to sleep tonight but I am optimistic that there ideas can make some big improvements. I like optimism and I like hope. And I LOVE good news!
Time To Update
Wow, it amazes me that I started this blog so long ago. A lot of entries, a lot of "stuff". I will be updating my page in the near future. Any suggestions?
Tuesday, January 26, 2010
We Each Have A Story
I learned a valuable lesson yesterday. I was at my intake appointment at Pain Management of North Idaho, over in Coeur d'Alene (the only pain management doctor/clinic in the entire Greater Spokane area). During a very long assessment with the Nurse Practioner, she asked a lot of questions about my cancers and bone marrow transplant. Since I have the answers down pat, I was just rolling off my standard replies and explanations. It really wasn't until the end of the appointment, and hour and a half later, that it really hit me that she had said that her brother had not survived his transplant. Huh.
So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.
I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.
So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.
I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!
So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."
Lesson learned. The hard way.
So as I gave my medical professional version of my health, she already knew alot of it. But I had failed to LISTEN, to really hear what she was saying. She had a story too. Not too proud of this one.
I wrote her a note today, confessing my self-absorption. I genuinely hope that at my next appointment that she will share with me about her brother, who he was, his journey and hers.
So this really got me thinking about how many other times I have tuned people out because I am not listening. We all do it, but I know I need to work on this. It goes onto my Goals List for 2010.
I should have learned a little about this from my WalMart experience around a month ago. I'm walking along (think very early am to avoid crowds) and a woman says to me, "God, I wish I was skinny like you." I took a couple more steps, turned around and went back. It was the proverbial straw breaking the camel's back. So I say to her, "Well, you probably could be but you have to have alot of cancer, have a BMT, and still be really sick all the time." I'm pissed. I am so tired of people commenting on my weight! Like I think this is attractive?!
So the poor woman who is receiving my months of frustration, who is very overweight and in a wheelchair, says to me, "Honey, that's how I lost my leg. I had lymphoma."
Lesson learned. The hard way.
Friday, January 22, 2010
Cup of Noodles
We recently learned what happens if you put a Cup of Noodles, with all its packaging/wrapping, in the microwave, without water, for three minutes. You get a fire with toxic smoke, lights and sirens with a firetruck and paramedic rig, and a number of young strapping firemen.....
They have some cool equipment though, kind of like the movies. One device is pointed towards the fire and registers all the temperatures.
The nice firemen remove the smoldering Cup of Noodles and then remove the microwave.
It smells really bad.
Then you can either leave for several hours for the house to air out or let them use their smoke machines, which unfortunately leaves carbon monoxide behind. We "evacuated".
Lots of neighbors call to offer their help with the boys because they think the ambulance is here for me. But it's good to know they care.
Ultimately John Paul's snack efforts were demonstrative of his maturity to get an adult if there is smoke or fire and his knowledge that 911 summons the Fire Department. He was going to stop, drop, and roll down the hallway to tell me about the smoke. There is no way I could have maturely handled that!
And 2010?
A belated Happy New Year to everyone! I write you hoping that you all had a blessed holiday season. After a very hectic December and a rather full start to 2010, I am pledged to one of my goals for the year: to get back in the saddle and BLOG!
It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.
First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!
It seems that I always think there will be a "right" time to start writing again. A juncture in my journey where I can say, "Well, all of this and that happened, but now it's all clear". However, that moment continues to allude me. That turning point, that ah-hah moment, have yet to come. So I jump in with both feet, with a longggggg list of topics and events I would like to share, to fill in the many gaps in my postings.
First and foremost, I made it! I am alive in 2010! I did not know on New Year's a year ago if I would end the year with you. It was an incredible blessing to witness a new year's dawn and to be a part of this new decade. It remains a one day at a time life. Sometimes I am literally withdrawn from it all as I continue to face medical challenges. But through God's grace, with the love, support, and prayers of many, and those who have literally pulled me through each day, I smile as I write you now. I am here. I made it!
Wednesday, November 18, 2009
So True, So True
"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much." ----Mother Teresa
The 1st Grade
It seems absolutely IMPOSSIBLE that John Paul is in 1st Grade this year! He continues at All Saints Catholic School and is extremely proud to be in a "grade". No more "letter classes", ie. P3, P4, or K. He is already counting years to high school, when he can play football, when he can go to Gonzaga......
Craig and I are incredibly proud of how well he is doing in school. With all that has gone on in his life, it's easy to worry that he will not meet his potential or perhaps will act out. His Progress Report and Report Card reflect that he is adjusting and finding his groove.
He has found a good fit with his teacher, Miss Vogel, again this year. His seat has been moved a few times....So I can definitely say he is enjoying his classmates! He misses some of his buddies that are in the other 1st grade classroom, but they seems adept at finding each other at recess or otherwise.
A special thank you to All Saints, who has helped and supported our family and continues to ensure that our boys receive the education we hoped for them. The teachers, staff, and families have been wonderful. We truly feel a part of the community.
The pics are from his first day.
P.S. He is finally getting one of his front teeth.....
"Just Thinking About Math"
I couldn't write about some of the many special people in my life without including a story about one of my boys. John Paul is turning seven (How did that happen?!) next month. He is quite the thinker. His questions and thirst for knowledge both entertain us and scare us.
One day a few weeks ago, John Paul and I were in the car. He was being rather quiet, which is also rather unusual. So I glance in the rearview mirror a couple of times. He is gazing out the window, deep in thought. Finally I ask him if everything is okay. Then I ask what he's thinking about. His reply: "Just thinking about math."
Okay. He was silent for the next twenty minutes.
So kudos to his teacher, Miss Vogel, who has apparently made math an exciting and engaging subject.
Just thinking about math. Oh, John Paul......
My Friend, Charyl
Okay, so I am behind. Again. As usual. As always.... I thought I would begin my catch-up by sharing a little about some special people in my life. Today, I will start with my friend, Charyl.
I wrote about her along time ago so the name may be familiar. Charyl is 93 years young. She is a church friend of my Aunt Marjorie and Uncle Jim in West Hills, CA. Charyl is a resident in a nursing home and embraces every activity offerred at full speed! In addition to bingo, parties, costume events (recently as Spider Woman), and visitors, she finds the time and desire to write me. About once a week. For over a year.
I have never met her. I have very definite mental pictures of her, as she writes (by typewriter) of her various activities. She sends words of wisdom, too, and often includes poems, authored by her or others. There is no doubt in my mind that Charyl's will could heal me itself!
Her unique, generous, and gracious friendship reminds me that we know not what another's journey is. Only to remember that we each have our own. And somedays, a simple guesture can genuinely affect how another faces the day. Thank you, Charyl, for sharing.
I wrote about her along time ago so the name may be familiar. Charyl is 93 years young. She is a church friend of my Aunt Marjorie and Uncle Jim in West Hills, CA. Charyl is a resident in a nursing home and embraces every activity offerred at full speed! In addition to bingo, parties, costume events (recently as Spider Woman), and visitors, she finds the time and desire to write me. About once a week. For over a year.
I have never met her. I have very definite mental pictures of her, as she writes (by typewriter) of her various activities. She sends words of wisdom, too, and often includes poems, authored by her or others. There is no doubt in my mind that Charyl's will could heal me itself!
Her unique, generous, and gracious friendship reminds me that we know not what another's journey is. Only to remember that we each have our own. And somedays, a simple guesture can genuinely affect how another faces the day. Thank you, Charyl, for sharing.
Wednesday, October 28, 2009
Kathy Howard
Yesterday was the anniversary of my friend's, Kathy Howard, bone marrow transplant. She is never far from my mind and is always in my prayers. Unfortunately, her transplant was unsuccessful and she passed away in March the following year.
Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.
Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.
We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.
Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.
She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.
She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.
Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.
Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.
She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.
Three years ago we celebrated that a donor had finally been found. She had very unique HLA typing and she had to wait for a donor. We celebrated that she lived long enough to get to transplant. And we celebrated the life she would have back after transplant.
Kathy taught me about leukemia. We had only met once, very casually, when I learned that she had been diagnosed with AML. She had gone to a routine doctor visit and was in the hospital that night. She taught me about the disease, the treatments, and bone marrow transplantation. She taught me about HLA typing, what happens if there is no match, testing costs, Social Security, being immunosuppressed, and Fred Hutch.
We held a bone marrow donor drive. Although statistically highly unlikely to match Kathy, it raised awareness and hopefully will save someone else's life.
Kathy taught me about Seattle Cancer Care Alliance and the Pete Gross House. I learned about conditioning, transplant, and recovery. We would talk as she swallowed the horrible daily regimen of pills, while sitting at her dining table in her apartment at Pete Gross.
She came home too soon. She enjoyed, a loose term, her last weeks in her home in Spokane, surrounded by family, and with the help of Hospice.
She was an incredible singer and made some beautiful music after being diagnosed. She was undoubtedly most proud of the song she wrote for her husband Dan, which was played at her memorial.
Interesting how a brief introduction drew me to her. She taught me what I didn't know I would ever need to know. There have been many times when of all the people I know, I have wanted to talk to her. She knew me before I knew myself.
Kathy was a wonderful mother who absolutely adored her grandbabies. She was a devoted and loving wife to her husband. She was a special neice to her aunt and uncle, who lived next door, also in a Historical Society house. She was a good friend to many.
She was a fighter and waged a valiant fight. She was proud and chose death on her terms, dying with dignity, surrounded by love, and having taught so many the meaning of "grace". I just wish the "Social Calls" were still coming.
My Body Over the Past 24 Hours
Yesterday was a really hard day for me. I would have written about it all yesterday, but things just kept coming. So, I have missed a day of writing and getting you caught up. I was actually really impressed that so many of you are still checking my blog and knew I had written. And without an email inviting you back to SallyLand!
I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)
So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.
Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.
Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.
If I don't pee by the morning, the world ends, apparently.
Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.
So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.
I had a lengthy visit with my doctor yesterday. Frankly, I imagine she just shudders when she sees that I am on her schedule! She is absolutely wonderful, never looks at her watch, and follows up like nobody's business. (I would write her name but I haven't asked her yet if that would be okay.)
So I had a STAT vascular ultrasound study on my legs. I have been having this weird pain, knees down, and it seemed the best thing to do to rule at any clots in my legs. Hooray! Negative! So nice to hear. The oncologist told my primary care doctor that I shoul start cumadin (vs. Lovenox) so that was gone over. Then the whole blood infection and affects on the kidneys. Plus at least twenty other topics.
Once again, I called the Moms at John Paul's school to find a ride for him since I would still be getting my test. Again, they were ready to help. I can't thank all of you enough. And I am sorry to have asked, yet again.
Today I woke up with back pain. Then I couldn't pee. Then I had really bad back pain. Trip to doctor's office. Tiny bit of pee. Blood in the pee. Medicine hurting my kidneys (not really my back hurting). Doctor is contacted at home. Enter Infectious Disease doctor (in charge of blood infection). Vanco (IV antibiotics) ends tomorrow with follow-up cultures in a week. Enter Urologist. STAT CT with contrast being arranged as I type. So I'll be off to somewhere soon.
If I don't pee by the morning, the world ends, apparently.
Just hung up with my Home Nurse, who called to say that they need STAT draws in the morning. Now I am totally confused. We played who said what to whom and when. My high from discontinuing Vanco tomorrow is now gone. There are too many doctors, too many tests, too much conflicting info. Home Nurse will try to figure it out and will call me back.
So I wait by the phone for two urgent calls telling me where I will be and what life will be like for the next day. Nothing new here.
Monday, October 26, 2009
Sacred Heart Frequent Flier Miles
What a month it has been! When Craig and I were in Seattle in September (another story), I had a constant headache. As I am not a headachey person, I assumed it was stress and began an around the clock Tylenol regimen.
Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.
So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.
Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....
Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.
By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.
Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.
PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.
So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.
So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......
Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.
Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.
So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.
Within a few days of returning home, I gut instinct feeling that something was wrong, plus feeling like crap, hit. The primary care doctor saw me and called my oncologist, who requested blood cultures in addition to some other tests already planned. Turns out that nasty headache was a symptom of a blood infection. You know, that "blood poisoning" stuff? So off to Sacred Heart (it's a hospital)! My Hickmann line was pulled (the port access in the chest) and a PICC line inserted (peripherally placed central line) so I could go through IV antibiotic treatment. Although the Hickmann was colonized, both the blood draw from the Hickmann and a regular site were positive.
So I get to feeling a bit better and go home to finish the IV regimen. Then I go to the doctor for follow-up and I have REALLY low blood pressure. So for two days I go in to get fluids and have my blood pressure checked. My lucky day was three, where I could no longer maintain a reasonable blood pressure. At 70 over 30, I was passing out sitting up. I got to meet a number of very strong and handsome young men as they arrived at the chemo suite to take me to the hospital. We are talking firetrucks, supervisors, ambulances, the works. This is one of my worst nightmare scenarios.
Off to the hospital I go, except my hospital is diverting because the ER is full. So I go in an ambulance, across the street from my doctor's office, to that hospital. I didn't even get to check the inside out or see how good they were.....
Long story short, the next day I am at Sacred Heart for another vacay. Yes, less than a week later. Turns out the blood infection didn't quite go away and it was affecting me particularly through blood pressure and hearrate. Enter cardiologist.
By this point I have had three sets of blood cultures, all pending. IV antibiotics. Hospitalist discharges me saying cultures are negative. Two days later my non-hospitalist doctor calls me to find out what antibiotic I am on. Uh-oh.
Turns out the hospitalist read one set of cultures' preliminary report of negative. When the final reports came in, two of three sets were positive (don't ask about the third). I pack this time, knowing I will need to bring some stuff.
PICC line out, IV line in. PICC line in. Groovy sedation for heart tests. Good news: There's no "vegetation: on my heart valves. (Never heard of heart vegetation and I definitely didn't want any.) Lots of IV antibiotics. I did get to stay on a new floor, which was really nice.
So I continue my IV antibiotics at home, a two week regime. Then off for one week, then cultures. The only reasonable explanation for why the infection has not gone away are that 1. I am immuno-compromised and blood infections are serious for healthy people and 2. It's hiding out somewhere. Hopefully we will not have to hunt it down.
So for the last month I have been in some hospital each week and feeling crappy even at home. I have cancelled and rescheduled so many appointments that it is embarrassing. I am determined to make no commitments until I stay out of the hospital for two weeks. I have a week to go......
Unfortunately, I also developed a blood clot during the last Sacred Heart trip, followed by a second one which was either new or just discovered. So add some vascular ultrasounds to the mix, and daily Lovenox injections, and you pretty much know it all.
Once again, my body has betrayed me. I am so sick of being sick. I can't tell you how claustrophobic it can be.
So, at least for the past month, this is my story. And why I remain elusive and evasive and out-of-touch. I just haven't turned the corner yet.
Can I Use The Same Post Twice?
Here I am, finally, connected to the internet, logged in to my blog, trying to figure out where to start. Essentially, I would like to repeat all the sentiment of my most recent post, even though it was way too long ago.
Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....
I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.
Thank you for sticking with me. I AM still here.
Many of you have told me that you worry when I don't write..... Oh, you know me so well. I continue to be unable to manage it all and frankly struggle to get through a "good" day. I am beginning to feel the stirings of a need to write, almost a purge of sorts. This may be the "Blogfest" that I promised on Facebook long ago....
I am really going to try not to whine nor only express only doom-and-gloom. But sometimes it does feel that way.
Thank you for sticking with me. I AM still here.
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