Posts Tagged ‘lungs


How do you live with this?

Many people have asked us this question, or something similar.

There’s not an easy answer, although we’re finding out more about how every day.

To start with, we’re scared, we’ve cried, we’ve spent long hours late at night in bed discussing serious aspects of the situation. Most of you don’t know about this because it was just the 2 of us (well, the five of us if you count the dog and the 2 cats); I’ve mentioned it briefly in the blog, or at least obliquely, but haven’t gone into great details about the hair-ripping and teeth-gnashing (this time I didn’t have to shave my head. . .).

Do you see what I did there? I answered the question as best as I know how – we live with this by making it funny. Brian and I have always spent a lot of our time making each other laugh, and I think we just don’t know how to deal with *anything* without laughing.

On Saturday afternoon, Brian took me over to the ER for the usual chest pains, this time with a side of compression and mild panic attacks at feeling as if I couldn’t breathe. As we sat there in the room between doctor and nurse visits, one of the nurses came by and closed the door – at that point, I realized that we’d been laughing and joking, and probably disturbing the sick people in the rooms around us. Who but us, I asked Brian, would go to the emergency room and act like we’re out on a picnic?

(Side note: there was nothing detected in my left lung, and the doctor said “If lying down flat feels bad, don’t do it.” And yes, he did say exactly those words, but not in a mean way – basically there’s nothing they can do for something that has generic symptoms and no obvious cause, and for the most part, the symptoms were gone by Sunday evening. So we don’t know what the problem was, but unless they get more specific or much worse, it’s yet another waiting game. Sorry, didn’t want anyone to be worrying.)

At this point, I suppose I could write a scholarly article on the value of laughter as the best medicine, but all I really know is that when Brian and I laugh together, even about something as scary and serious as liver mets, it pushes back the darkness a little, and makes my heart feel lighter.

And of course, we live with this by depending on our awesome friends and family, and the doctors and nurses, and the kindness and generosity of the people we work with who call, visit, send cards and e-mails, and who laugh with us about the absurd and silly stuff as well as the scary stuff.

Just today, my girlfriend Sharon, who was scheduled to pick me up after chemo, showed how much she loves me by making sure I was taken care of when she was more in need of some tlc than I was. Due to a change in plans, my chemo got rescheduled to next week, so I ended up calling her 2-1/2 hours early to come pick me up. She wasn’t ready, but said she would be there as soon as she could. Knowing that even if she took ten minutes to get ready to go I would see her in 20 – 25 minutes, I said no rush. An hour later I wasn’t sure if I was more concerned or grumpy, but was definitely a little of both. Just then she pulled up. As I got in the car, she apologized profusely, because right after I’d called, her 87-year-old father’s assisted living facility had called to tell her that he was being sent to the ER. She just dropped by to tell me that her husband was on his way from his job to give me a ride home while she went to the ER to be with her father. I, of course, was mortified at having felt grumpy, and told her that Brian could have canceled his appointment, or I could have taken a taxi, or something; but she wasn’t having any of that. She needed to make sure I was taken care of, and her husband was a real champ to come get me. I owe them big-time.

And finally, one of the bad ways that I live with this is to cocoon. I tend to keep to myself, don’t reach out to others, and end up spending a lot of time alone. Now, I’ve always been this way, so it’s not something that changes easily; and in some ways, the quiet solitude is good for me; but I also can get too deep into my head and start feeling depressed. So thank you for keeping tabs on me, for calling/writing, etc. I’m working on trying to be better about reaching out; but you may have seen how I dealt with it at work – I wasn’t feeling well, and was worried about what the mass on my liver meant (I had a pretty good idea, but there’s always hope). I worked from home a lot around doctor appointments, when I was in I kept my door closed so I didn’t have to run into a situation where I had to tell someone about an undiagnosed problem, and when it was confirmed and I had started treatment, I basically dropped out of sight without a word to anyone but Shi-Yi and HR. That was pretty anti-social of me, but I just wasn’t up to dealing with the emotion of telling people about my third round of cancer, and this one much more grim than the previous two.

So we deal with it in some exceptionally great ways, but also we tend to isolate ourselves, which isn’t good. Probably much like so many others both before me and dealing with it now – is it just that we don’t know anyone who is dealing with something so bad, or that they deal with it so well, that we just can’t see how well they’re dealing with it? Maybe some of each. . .

p.s. It’s not too late to donate to the Making Strides Against Breast Cancer fundraiser. Just use the link on one of my previous posts to get there. The walk is over, but the need goes on.


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!



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.



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.


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