Posts Tagged ‘blood clot

18
May
10

Three Scans for the Price of . . . Three

But first, results from last week’s scan!

Good news all around – the largest tumor has shrunk from 9.4cm down to 7.9cm; several of the other tumors also have shrunk; and some that haven’t shrunk outside are becoming necrotic inside, which probably means that the Avastin is preventing the blood flow leading to them.

So, yay!

As well, at 2 months, what they’re really looking for is to make sure that the tumors aren’t still growing, but often what you see at that point is that they’re stable, neither growth or reduction. The shrinkage, therefore is actually very good news.

So, double-yay!

My spleen is slightly enlarged, which isn’t of concern yet – Doctor Medici says there are blood vessels leading from the liver to the spleen (I think this is how it went, chemo brain is to blame if I’m saying wrong, not Doctor M), and they can get a little congested. At any rate, it is possible that it is lowering my red blood count, and may in the future have an impact on whether I can continue with this chemo regimen; but for now we want to go with it for as long as my body will tolerate it, since it’s having such good effect.

I also have some pleural effusion in my left chest cavity – a build-up of fluid in the space between the lungs and the chest wall. I believe this accounts for the chest symptoms I’ve been having, and also for the anxiety attacks, which I’ve been having a bit more often. Dr. M. doesn’t believe that, but I do – I know my body, and I’ve associated the anxiety with the feelings of pressure or compression in my chest, and the feeling that I can’t breathe as deeply as I want; and that was before I knew there was something in there.

However, the thing that most concerned Doctor Medici was the swelling on my left hand from last week. He was concerned that there might be hidden heart damage or a blood clot in my arm that was causing edema, and so he wanted me to have a vascular ultrasound and an echocardiogram in the next couple days.

I went in to the infusion suite and had my chemo, and when I came out, Nurse K. had scheduled me for the ultrasound at 3 pm and the echoCG at 4 pm. Fortunately, our savior driver cousin Jeanette was able to stick around and take me back to the hospital, and even had some personal business there herself, so that all worked out.

The ultrasound was given by a student, and one of the staff doctor/technicians was there to walk her through it. I was hearing comments like “Where is this thingy?”, “Show me that thingy,” “Show me that thingy in color.” I was seriously wiped out from the chemo, and all I wanted to do as I’m lying there was sleep – surprisingly, I ended up feeling pretty rested after that, so maybe my steroid high was kicking in.

They ended up taking a close look at the port and its environs, and the doctor/technician asked me a lot of questions about it. They ran over into my other appointment by about 10 minutes, and were looking intently at the results of the scan when I came out of the room. I had to wait a few minutes for the next test, even though I was late; and while I’m in having the echocardiogram, the ultrasound doctor stuck his head in the door and said:

“I just got off the phone with Doctor Medici, and he wants her to have a CT scan this evening – we’re getting it scheduled now.”

I called Jeanette to let her know that she shouldn’t wait any more, but didn’t get hold of her, which I figured meant she was out in the waiting room. We finished the eCG, and while I was changing the eCG doctor went out to talk to the other doctor. When he returned he said that the CT scan was scheduled, and I should just head right over there. When I got to the lobby, sure enough there was poor Jeanette, waiting patiently – I really appreciate the fact that she took so much time out of her life to drive me around, and to wait so long, but I didn’t know how much longer it was going to be, and figured she needed to get home to her family. After she left I called Brian to fill him in, and have him pick me up after the CT scan.

Once I was over in the radiology department, I got in pretty quickly. Nurse S. asked me why I was there, and I had to confess that I didn’t really know. All I could do was speculate that the ultrasound had detected a possible problem in my left chest/arm area, but nobody had told me what was specifically being looked for (and yes, I did ask the eCG doctor, who was the only one there by the time I was done with that test, but he didn’t know anything about it, just that the scan had been scheduled and where I was supposed to go). So he (Nurse S.) went to talk to the CT doctor, and it turned out that they were scanning the left chest and arm to look for venous clots, as I had guessed. I was still confused with why they needed a new scan, since I’d just had one on Thursday last week, and it was after the swelling symptoms had been and gone; until Nurse S. reminded me that normal chest CT scans are done with both arms above the head, so the arm is not imaged. Ah, of course.

Brian was waiting for me as soon as I was done, and we came home and made dinner, and were hanging a couple new pieces of artwork on the wall when the phone rang.

Dr. Medici was calling to let me know that the ultrasound doctor had detected some apparent slowing of bloodflow into the arms, which seemed as if it was coming from the middle of the chest; this is why Dr. M. requested the CT. The CT however, didn’t detect any clots or other problems, so unless the eCG results come back with something odd, everything seems as it should.

So that is the story of my big medical day, and My Three Scans.

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03
Feb
09

February 3, 2009

Well, it’s only Tuesday, but already we’ve had more drama than necessary this week.

Last Thursday, I realized that I was coming down with a cold, so worked from home on Friday, and tried to take it pretty easy on the weekend. I already had plans for Saturday morning (a class on learning how to use my new sewing machine’s spiffy functions, which are indeed way cool), so I went to that.

Then on Sunday Carrie, James, Brian, and I went to brunch at Petite Provence on Division, which, not so coincidentally, just happens to be next to my most favorite bead store ever, Beads at Dusti Creek. So of course, we sent the boys home and spent a couple hours browsing and chatting – I really went to visit the ladies, because I haven’t been in for a long time, and miss seeing everyone. Sweet Calla was there, but sadly, nearly everyone else except for Eric, and most importantly Beau, were not. But we had a great visit with Calla, and Carrie found some great stuff for a new project.

I’m on a stash diet this year – I have enough beads, fabric for quilting, and yarn for knitting to last me for way more than a year (at least at my present level of output), so I’m only going to work from items in my stock. Of course, if I don’t have any findings, or need batting for a quilt, or don’t have the right set of needles for a knitting project, I will do what I have to do to make sure I don’t have a pile of UFOs on hand, but otherwise, NO purchasing new beads, fabric, yarn.

At any rate, I made it out of Dusti’s without actually buying anything, and oddly enough, without the usual “Oh, but just think what I could make with *this*, and it won’t be here the next time I come back, so. . .” temptation. It was fun to look at stuff, and I definitely saw things I would like to make projects with, but I didn’t even have to talk myself out of anything. Weird.

Of course, that might be because I wasn’t feeling up to par – my cold and left-over chemo side-effects from the last infusion on the 23rd had me pretty tired, and after I got home, I lay down for a two-hour nap. I had no problem sleeping Sunday night, either.

I woke up Monday morning to a pain in my calf, which lasted for a few minutes; and before that pain passed, my left lung all of a sudden felt like it was being compressed, and I felt like I was breathing through cotton. I could feel mild pain in my back underneath my shoulder blade. When I stood up I was a bit light-headed. Crap. These are similar symptoms to what I felt when I had my pulmonary embolism.

I called the oncologist, and, as I expected, he sent me to the ER. It was very busy, so probably the first hour was spent in the waiting room, although they did give me an EKG while I waited (sounds sort of like a service for the busy professional – EKGs and ultrasounds WHILE YOU WAIT!). Once I was in a room, they drew some blood and hooked me up to an IV. Annoyingly, they had to poke me in the arm rather than use my port, because the contrast agent they use for CT angiograms cannot be put through the kind of port I have. Apparently there is something called a “power port” that is specifically designed for taking that kind of abuse (hey – if a bloody plastic apparatus can’t take it, how are my precious organic VEINS supposed to handle it, huh?).

Another 4-1/2 hours and one CT scan later, the doctor told us that I had pneumonia. Brian and I looked at each other, pumped our fists, and yelled “woo hoo!” – pretty sad when having pneumonia is a good thing, but ya gotta admit that it is *much* better than a pulmonary embolism.

Even more exciting is that this means we don’t have to take me off the Avastin. It can cause bleeding problems (either clots or hemorrhaging in extreme cases), so if I’d had a PE, we would have had to stop it.

Finally got home (via Dairy Queen for my first meal of the day, and a consolation Heath Bar Blizzard) around 5 p.m., had a nap, read, went to bed. I’m on antibiotics for two weeks, and the doctor says I can go back to work by Friday. Of course, Friday is supposed to my next chemo, so I have a call in to the oncologist to find out if that’s still a go or not. I *really* do not want to delay the chemo. I want to get it over with!

I woke up around 2:30 a.m. this morning with an upset stomach and a killer headache. I got up at 3, had some broth and crackers, and sat in my recliner reading until 4. Since my stomach was better, but my head was still killing me, I decided to nap in the recliner for a while rather than go back to bed and risk waking Brian with my restlessness.

Around 7:30, Robin, who had been sleeping behind my recliner, started thrashing around, woke me up from a fairly sound sleep. I jumped out of the chair and went around to see what was the problem – he couldn’t stand up, his hind legs weren’t working. I calmed him down, ran my hands over his back and hind legs, but didn’t seem to have any pain reaction. Got him on his front legs, then lifted him onto his hind legs, and he was able to walk but not steadily – his rear legs kept collapsing. I got him over onto the carpet, and sat with him for a while, calming him down again, then tried standing him up again. It looked like it was mostly his right rear leg that was the problem.

I woke Brian up, who took him to the vet – they didn’t have an open appointment until 3 p.m. this afternoon, so Robin will be there all day. Since Brian has to go in to a client’s site this afternoon, hopefully our neighbor will be able to pick Robin up.

So that’s been my fun couple days so far. Woo hoo!

06
Dec
08

December 6, 2008

This time last year, I was bald. This year, I am painfully short (well, my hair is).

I’ve decided to start keeping track of my hair adventures with this next round of chemo – I have a patchy record from the previous treatment, but am going to start a picture album of the changes I go through this time. I really regret that I didn’t get more pictures of the super-tight curl and the afro in its various stages and colors; although perhaps I can get a digital copy from the radiation oncologist of my ‘tweener stage with the bleached curls and the white roots. Except I have the “deer-in-the-headlights” stare in that one, so it’s not one of my better pictures. I definitely take after my mom that way – we always look like that in posed pictures. Candids are *much* better.

My radiation burns are clearing up nicely. Lots of peeling, with smooth, shiny skin underneath; but I suspect that I’m going to have a visual reminder from the treatment for quite a while until the tan fades. Happily, I haven’t developed a lot of scar tissue yet, although that is apparently an ongoing development for months if not years after. There is one big clump right in between the two scars, but now that my skin isn’t so sensitive to touch, I’ve gotten back into the massage technique the physical therapist showed me. I had to buy some tennis balls just for that – it puts a more even pressure on the tissue and rolls very easily, whereas using your fingers creates more specific points of pressure (which is fine in many types of massage, but not so much for breaking up scar tissue, I guess). The trick is to keep from doing it when the dog is around – he thinks tennis balls are *his* toys. Fortunately he’s not such a ball dog as a retriever would be. Robin will play fetch and dribble them between rungs of a chair, but by far his favorite game with a tennis ball is to pull the fuzz off of it.

I’m still feeling some fatigue, although it never got as bad as I thought it might. I have had some difficulty sleeping, but for the most part have been getting roughly 7 or 8 hours most nights.

Next up, I have my chemo port implanted on Tuesday this coming week. When I met with the surgeon, she said that she would try to put it on the right side again, in the same spot as before; but sometimes scarring from a previous port can make that impossible. If that’s the way it goes for me, she’ll have to put it in on the left side. That’s undesireable for several reasons – there’s all the skin damage from the radiation treatment to avoid; I normally sleep on my left side, and laying on the side with the port is very uncomfortable; but the biggest fear is that it will raise the risk of lymphedema in my left arm significantly. I am very anxious to avoid developing lymphedema. The people I know who have it tell me it is much more than inconvenient – it can be life-changing because of the way you have to limit things you do, and how you do them. I’ll keep my fingers crossed (unless someone tells me that lymphedema can be triggered that way. . .).

At this point, I haven’t heard back from the oncologist about the use of Avastin in my case – he was out of town the week before, and this week I think he was hoping to avoid talking to me by having the triage nurse ask if I couldn’t just talk to him when I came in for my first chemo. Well, no, I can’t. I’m very concerned about the significant increased risk of thromboembolic events (blood clots), because of my history. And I really want to know how he can justify that risk in the face of an unknown benefit for a treatment that is completely non-standard. On the other hand, I’m also paranoid about the possibility that this recurrence is much more aggressive than we know, and am willing to take a calculated risk in an effort to make sure that any cancer cells that might have gotten through the lymph system are dealt with. So I stated my concerns very clearly, and asked to have him call me back. When I hadn’t received a call as of Friday morning, I called again and told her that I really wanted to hear from him, as this is very important to me. She called back early Friday afternoon, and said that he was “gathering information”, and that he would call me early next week. OK.

Then Friday, we’re flying down to see our parents for our usual fly-by Christmas visit. Robin is staying with our neighbors Sharon and Gary, who have the two miniature poodles Jasmine and Lola. The three of them got along great at Thanksgiving (i.e., Robin, Jasmine, and Lola), although the two girls did sort of play together and sort of ignore Robin. I’m hoping that enforced together-time will be more fun for him – he and Jasmine loved to play together before Lola came along, so I think he really misses that.

Tomorrow we’re going to see little Emily Rose (and daddy Greg, too!) in The Nutcracker Suite. ER is going to be a Snowflake, and part of the Arabian dancers; Greg is going to be one of the Party Guests. I don’t think he has to dance, but he may be wearing leotards – no, probably not. I bet you couldn’t pay him to do that!

14
Nov
07

November 14, 2007

Welcome to the most recent installment of the popular soap opera, “All My Chillblains” (lived before a live audience).

In this episode, our heroine Julie finds herself playing out her recurring nightmare, in which she returns to the scene of her surgery, over and over, day after day. The curtain opens on Julie, standing in the lobby of St. Vincent Hospital East Pavilion, trying to remember where she has to go next.

**********************

I had to be at the hospital at 7:00 a.m. on Monday morning for a bone scan. After injecting me with yet one more radioactive contrasting agent (this one was called “Technetium”, really!), the tech told me to come back in 3 hours for the bone scan. The 10:00 a.m. bone scan was not too bad – it just involved laying on the table while it moved under the camera. The 2:00 p.m. blood draw was easy, once they found an unpoked place on one of my arms.

Monday early evening I received a call from my surgeon’s office rescheduling my next-day’s surgery from 10:15 a.m. to 7:15 a.m. My poor friend Cathy also had to suffer with the early morning since she was my ride to and from St. V’s. The actual surgery started around 9:30 (you have to arrive 2 hours early, of course…), lasted for one-and-a-half hours (they had a minor problem with a kink in the catheter tube that needed straightening), and we left for home at 2:30 p.m. after picking up some really nice pain pills from the hospital pharmacy. The worst part of the surgery was the pain in my back/shoulder/neck from the towel they rolled up and placed on the table between my spine and my right shoulder blade to position my chest and arm properly for the insertion. That alone required two pain pills, plus alternating heat and ice to make it bearable.

Wednesday I attended a “chemo class” in the morning – in addition to reviewing the actual process I’ll have to go through, we looked at the biology of blood, cancer cells, and anti-nausea drugs; covered the side effects of the drugs I’ll be taking; the importance of hydration and exercise to chemo patients; nutrition during chemo; how to deal with hair loss, both physically and emotionally; and the reasons I should immediately call the triage nurse (fever of 100.5 degrees or above is the most critical one). At one point, the nurse was describing how the goal of a particular chemo drug was to “kill, kill, kill,” and I nearly jumped to my feet and started jumping up and down yelling “Kill, kill, kill!”, but managed to keep my seat. It was a close thing.

Then, after I’d gotten home, my oncologist called – he had a lung specialist look at the refined thoracic CT scan; and then a whole group of lung specialists examined it this morning. Everyone agreed that not only did I have a pulmonary embolus (blood clot) in my left lung, it looks like there is one in my right lung, also. So I had to drive back to the hospital, get both an injectable blood thinner and a pill-form blood thinner from the pharmacy, and learn how to inject myself. The nurse drew about 7 or 8 vials of blood to do tests on my clotting factors to determine if I have a predisposition for clotting (in which case I’ll have to be on blood thinners for a very long time), or if it appears to be an isolated incident. Since the doppler ultrasound ruled out clots in my legs, nobody can figure out *how* I got clots in my lungs.

Tomorrow (Thursday), I have a fill/check-up with the plastic surgeon, and a support group meeting. This is the easiest thing I’ve got all week.

Friday is my first chemo – I have to put together a chemo kit, including a book, my iPod, my knitting, a pillow, some snacks, and maybe a blankie. For my second chemo, I’ll have to bring a warm hat. The chemo suite contains roughly 15 to 18 nice recliners, and they serve coffee and other drinks; and there’s a view, although it was too dark this evening when I was in there learning how to inject the blood thinner to see if it is at all worth gazing at for three or four hours at a time . . .

And I thought that was the worst of it – having to be at the hospital five days in a row (multiple times, some days). But I learned on Monday that I have to be back there on Saturday for my follow-on infusion of Neulasta, a drug that promotes white blood cell generation. That is a two-and-a-half hour appointment. Six days! I have to be at the hospital six days in a row!

At least I get a break on Sunday, before I have to go back in next Monday for more bloodwork to check the level of the blood thinner.

And I discovered today that I’m actually going to have 8 chemo sessions – both Brian and I thought that the reference to 8 included the Neulasta infusions; but it will be 4 sessions of Adriamycin, and then 4 sessions of Taxol. It really hasn’t been a great day, but oddly, all I can do is laugh. Brian suggested there might be a note of hysteria detectable, but all I can see at this point is the absurdity of it all.

Besides, the Games Party was great fun, even if I was totally wiped out the next couple of days; and today I had lunch with my friend Harriet – it was so good to see her! And the oncologist’s nurse practiitioner gave me a prescription for a wig. Life is good!

My plan is still to henna my head – Cathy is going to design a Chinese dragon for me, and do the henna painting, too. I’d been planning on shaving my head this weekend, and may still – but if I do, I’ll have a nice crop of stubble for roughly a fortnight. Choices, choices!

Julie

07
Nov
07

November 7, 2007

Finally it seems I’ve turned a corner in my recovery – I’m having very little pain, and although I still tire, it takes longer to hit me, and less time to recover, as well as that I can do more and more before I need a rest. I’ve been able to walk Robin around the 1/4 mile loop without fearing that I won’t be able to make it home, and yesterday, I began working a little bit, starting to go through the 754 e-mails awaiting me at work from the last 5-1/2 weeks! I was only able to focus for 2 hours yesterday, but today I managed a couple different sessions and worked for 5 hours, and actually did some work in addition to clearing emails.

At this point, I plan to continue to do some work from home up until Thanksgiving, and the next week start back in the office for as many as 32 hours per week through the end of the year. How much I’m able to work will depend on how the chemo affects me.

So far this week, it has been a medical comedy of errors.

Tuesday morning we showed up at the hospital for my chemo port installation surgery. Once admitted, they gowned me up, and had just gotten the IV inserted when my surgeon came in to talk to me. After describing what she would do during the surgery, and answering various other questions about it, she headed off to do the surgery ahead of mine. I realized that I had one more question, so Brian managed to find her before she left the pre-surgical ward and brought her back. I told her that I’d been in the hospital over the weekend, and that one of the things they had done was to inject me with a blood-thinner called Lovenox in case I had blood clots. She said “Oh, we have to cancel your surgery today, then.” If the surgery had been one day later, it would have been OK, but apparently the drug is still functioning up to 72 hours after injection (at least at the dose they gave me). The most likely problem would be that, since she was cutting directly into a vein to insert the catheter tube, I would have kept bleeding after she closed the incision, causing a major hematoma which could become infected, and cause the tissue around the chemo port to become infected.

So they removed the IV, let me get dressed, and sent me home. I now have my chemo port installation scheduled for next Tuesday, the 13th.

Then, this past weekend, of course, I was in the hospital having tests, one of which was a thoracic CT scan. Both the doctors at the hospital and the oncologist on duty told me I could cancel my CT scan that was scheduled for later in the week; and when my oncologist’s triage nurse called me Monday morning to find out about my hospital stay, she said that he had also agreed I could cancel the scan. After we hung up, I called and canceled my scan that was set for 2:00 p.m. on the 7th. Half an hour later, she calls back and in a very apologetic voice, asked me if I’d already canceled the scan. Turns out the doctor wanted to have a scan that focused on my thoracic spine, and to have a bone scan in addition. So she scheduled me to have a CT scan on: TA-DA, the 7th! Only this one was for 7:15 a.m., because some lucky sod grabbed my primo 2:00 p.m. spot. Sigh.

This morning, we drag ourselves out of bed, drive over to the hospital, fill out the paperwork, and the tech takes me back to the changing room. I get gowned up, and he comes back to fetch me. He asks if I know what the doctor is looking for, and I tell him that I believe he’s looking specifically for anything that might have caused my chest pain, including metastasized cancer. He says he’s going to go have a chat with the radiologist about it, and will be right back. 5 minutes, 10 minutes, no word. 15 minutes, 20 minutes, I’m drifting off to sleep on the tiny little bench in the changing room, when I hear the door open. Poor guy, he looks like he might be worried that I’ll be pissed – and it was a close thing. Turns out that they had the raw data from my weekend CT scan on their computer (I guess they archive stuff off to storage, but at some point longer than 5 days, anyway), so all they needed to do was refine the image to focus on the spine instead of the general thorax area. So they let me get dressed and sent me home – I thought it was pretty funny, but I felt very sorry for Brian, who’d gotten up very early to take me over. At least we hadn’t progressed to the IV point, or injection point.

Frankly, I’ve been a little concerned at all the toxic stuff that is being done to my body in order to kill a different type of toxic stuff – sometimes the cure is nearly as bad as the disease. X-rays, radioactive gas, radioactive contrasting agents, dyes, chemicals, etc. I’ve committed to getting through this in order to prolong my life, but I do worry that there can be future negatives to all the exposure to nasty stuff.

So I just listen to my guided imagery CD that depicts the chemotherapy drugs as golden healing liquids that burble through my bloodstream like a brook through a forest glade, pure, cleansing fluid that carries away the detritus; and hope that believing can make it so.

Julie

04
Nov
07

November 4, 2007

This story is called St. Vincent’s Massacre, but I’m not going to tell it with four-part harmony.

Well, for something like a year, I’ve had intermittent chest pain on my left side, and my doctor had ruled out heart problems with a battery of tests, and decided it was muscular pain related to the size of my breasts. As I mentioned previously, I’ve still been having the pains since the mastectomy surgery, so that seemed to pretty much rule that out.

Early Saturday morning, I woke up with a very intense pain in the usual place – it lasted about 10 minutes or so, then tapered off to “normal” levels (i.e., the usual 1-3 level of pain on the scale of 10, down from a 7 or 8). I managed to go back to sleep, and after I’d gotten up, I had various other symptoms (heart palpitations, numbness in my left arm, light-headedness, and tightness in my chest that felt like anxiety (even though I didn’t feel anxious mentally or emotionally)).

So Brian loaded me into the car, with my bag of knitting and a book, and drove me over to Urgent Care. Well, they got me right in, and stuck me all over with implements of detection, I mean, they stuck electrodes all over me, and they took an EKG. They gave me some children’s aspirin, and they handed me a piece of paper, and told me “Kid, go see the physicians in the Emergency Room.”

Remember St. Vincent’s? This is a story about St. Vincent’s. Brian drove me over to St. Vincent’s, where I was inspected, injected, detected, and selected, and all kinds of mean and nasty things. They took me into the pediatrics emergency ward, made me sit on a bed, and I was there two hours, three hours, four hours. I was there for a long time, and they said, “Kid, we’re admitting you.” Then I was categorized, prioritized, sanitized, and immunized. When they checked me out today, there was a binder with twenty-seven eight-and-a-half-by-eleven test results, with circles and arrows, and a paragraph on each one explaining what each one was to be used as evidence in diagnosing me.

In the end, the biggest worry was that I’d thrown a clot and had a pulmonary embolism. After a CT scan, an EKG, blood tests, urine tests, poking, prodding, quizzing, being slimed with ultrasound gel, breathing radioactive gas, and being injected with yet more radioactive contrasting agent, I have been certified as glowing with good health (well, except for the cancer, which in theory is gone). I told the doctor that this is why I usually ignore symptoms, because either it’s called ‘female problems;” it’s blamed on my secondary sexual characteristics; or it’s an exercise full of sound and fury, and signifying nothing. He reassured me that even though the medical establishment is baffled about my symptoms, at least we ruled out a lot of nasty stuff, and that if I experienced the intense pain again (which could be neurological in origin, since neither Vicodan, ibuprofen, acetaminophen, nor naproxen seem to affect it), I should call him and he’d see me immediately.

What I learned from this is to always shave your legs, because you never know when you’re going to end up in the hospital.

Julie




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