Another Clean Scan

Third CT scan was clean. Next scan in July.

Hospitals -- no place for the sick! (9-10 June 09)

Well, what can I say, I had to stay in the hospital one night. The OR nurse briefed the hall nurse about where I was at, and the aide came in to re-connect these "boots" that were inflating and deflating every few minutes to, theoretically, keep me from getting any clots in my legs. It took about 4 pillows and a couple folded and rolled blankets to support everything so I would not be in much pain. In addition to the Demerol to stop the shakes, they had also given me Dilaudid for pain. As such, I was pretty out of it for a while. I was surprised to see that the clock said it was after 4 o'clock, where had the time gone? I was aware of a terrible sore throat, a side effect of the intubation for the general anesthetic. Eventually, I felt well enough that I asked for something to drink. The Dilaudid eventually began to wear off, so we performed experiments with the gate theory of pain control. In essence, a gentle stroke on the skin, may override the pain impulses going to the brain. This was pretty effective for me. Poor Colin wore his arm out reaching over the rail, so he moved to the other side so he could support his arm on the bed. The easiest place for him to reach was my leg. It was just as effective as my arm. I had gotten warm and was going to have him take off the blanket, and when I looked down, I said: "Since I am warm anyway, why don't you take the blanket off my leg so no one gets the WRONG idea ;-)." Not long after that, the Doctor came to check on me. I think he was amused (and perhaps surprised that anyone knew about the gate theory).

The worst part of every hospital stay I have had is the bed! They always have just the sheet over the waterproof mattress. This is as comfortable as lying on a plastic bag. When I finally was able to get up, I had Colin take two of the blankets and spread them out on the sheet to help with this. I got up, mainly because they said if I got up and walked, I could get the boots off.

I eventually got something to eat, and felt well enough that Colin got his computer out and we watched the pilot episode of Bones. We have Bones in our Netflix queue. I had gotten hooked, but at least two seasons after it started, so since Colin had never seen it, we decided to see if we could understand some things by going back to the beginning. That was my limit, and it was off to bed. They brought a recliner in for Colin to sleep on, and it was nice to have him there so I wouldn't have to call the nurse for every little drink or trip to the bathroom.

The worst part of the hospital is that they want to wake you up for this and that. I had to have one more dose of IV antibiotic at 4 a.m. When she came back to remove the IV, she said: "Well, I'll be back in an hour to check your drains." Colin said: "No, check them now." She said: "I can come back. Its not a problem." Colin said: "I think you need to check them now, that way, she might get some sleep." Long silence and then "Oh..... ok." They are definitely on THEIR schedule in the hospital, not on a patient centered schedule.* But it goes to show that speaking up helps.

Thankfully, the day nurse bent the rules and left us alone until after we were awake at 0800. We got up, had breakfast, and Ruth Ann got dressed. The Doctor came by to give me a prescription and instructions, and we were on the way home.

* Colin's note: I need to write a posting about this, too. I have a suspicion that too much disturbance is bad for the patient. For example, in RA's case, her vitals had been perfect from the get-go. Why check them so often?

And the three IV doses of prophylactic antibiotic that she was given...did it REALLY have to be given on a precise 8-hr schedule? And did all the doses have to be IV? Post-game Googling finds that a single dose prior to surgery seems to be all that was indicated (reference Postoperative Prophylactic Antibiotics and Surgical Site Infection Rates in Breast Surgery Patients which shows a single preoperative dose is standard, and that postoperative application has no benefit). Ruth Ann could have had the IV out of her hand before bedtime, and would have had more sleep that night. Oh, well, no harm this time that we know of....hopefully there are no Clindamycin resistant bacteria floating around in her system.

Oncology Consult (8 June 09)

We met with an oncologist and surgeon from the Dana-Farber Sarcoma Center. All records related to this had been forwarded to them. After filling out more reams of paperwork, meeting the administrator, meeting the PA to go over the current details, we finally met the oncologist. He had a very laid-back style. We really liked him and his "bedside manner". According to him, Dana-Farber's current thinking is to watch and wait with primary angiosarcoma of the breast. There is no evidence that chemotherapy will prevent a recurrence. They believe it is better to scan frequently to catch any reoccurrance as soon as possible. He did say "...but if you will sleep better by are doing chemo (aka doing something), we can do that too.." My retort was "first do no harm". We did take their literature describing the various chemo options for reference.

Eventually, the surgeon joined us with his medical students. His bedisde manner was less...polished. We discussed the planned surgery. He thought the sentinel node biopsy was "totally unnecessary surgery". We did discuss what he thought was appropriate: removal of as much tissue border, including skin, as possible and removing the fascia on the underlying muscle. Colin noted everything for a final discussion with my surgeon the following morning. Once again, the best possible news that there could be, given the situation.

Getting the scan results

Colin and I were on pins and needles the first week. Not knowing whether this was the beginning or a metastasis was extremely stressful. The appointment was at 11:45.

The Doctor took care of all the other appointments ahead of us so that he could have plenty of time to discuss things with us. We got the great news that this was the only discernible site, at least as a mass, at this time. (No scan can find individual cells that are moving.) So we discussed the surgery.

There is no evidence that a sentinel node biopsy is warranted for angiosarcoma, but by this time, I had read of several cases where it was found in the lymph nodes. We discussed what the lymph biopsy involved, and all agreed that it was prudent to proceed with the procedure. The surgery was scheduled for June 9th, the day after our Dana-Farber consult. After all of our reading, we were confident that the Dana-Farber folks would agree the mastectomy was necessary. Since I had become comfortable with the Lahey-Northshore surgery center (ganglion cyst/carpal tunnel in 2007, lumpectomy), we were not anxious to start over in a new place with a new surgeon, nor have a longer wait for the procedure.

We left the office in a state of relief. We called our folks, and then stopped at work to discuss the course of action with the nurses, and what documentation was required for medical leave. After that, we stopped at my group to report on the clear scans. Later several of my colleagues reported that they all let out a collective sigh of relief on hearing the news. That was true with everyone with whom we had discussed this.

Ruth Ann with edits by Colin

Back at work, the first week

Not knowing what was going to happen when, I had to start the process of telling folks at work that I was going to be taking time off over the summer. The week was a whirlwind of cleaning up projects, reading as much as possible, and looking into what to do after surgery. I took the bull by the horns and called the Sarcoma Center at Dana-Farber and made an appointment. The first appointment I could get was June 8th due to a national oncology conference! In a way, it was good to have a week off to gather thoughts and prepare.

We visited our attorney to make sure our paperwork was in order (long overdue!).

Getting by -- Memorial Day weekend

For the rest of the weekend, we worked in the yard, took it easy, had friends over for a planned cookout, and on Monday went to the beach. Not knowing what the summer would be like, we decided we better get to the beach while we could. We couldn't have had a better day for it. We hiked up and down the beach, the kids built a castle, and the water was warm enough for Noelle to go in.

We also made more phone calls and visited other neighbors to tell them what was going on. It was a bit surreal since I felt perfectly healthy. I know that I kept thinking that this was a dream and I would wake up and it would be over. Or, I was thinking they would call back and say oh, we made a big mistake.

The next day

We woke up on the Saturday of Memorial Day weekend still in a surreal state. We had a party to go to and cookies to bake. We bit the bullet and told Emma at breakfast. Bad news doesn't get any better with age, and Emma would be able to tell things were not normal. She would be upset if we hid this from her.

While we were baking the chocolate chip cookies, Noelle kept trying to eat the dough. We kept telling her not to eat it because of the raw eggs. I finally sat her down and said that I had a big sickness, and that it would be important for everyone in the family not to get any little sicknesses since that could keep me from getting better. That kept her from trying to eat more dough, but I am not sure what she really understood at the time.

We decided that now that the kids knew, we would have to start telling people before they found out by accident. We started with our two closest neighbors. One neighbor is a radiology technician, so she was going to ask around at work to see what anyone knew about this and who they would recommend. Our other neighbors are both hospital pharmacists. Neither had heard of angiosarcoma. After discussing it, they said that since it was an epithelial cell cancer, there might be hope in some of the newer drugs for this class of cancer.

We were having a cookout with friends on Sunday, so I called and talked to them, rather than springing it on them in person. My friend had a brother who died, tragically, of testicular cancer, and her mother had had breast cancer. She and her husband are also technical, so the discussion of the rarity of this was lively.

The hardest thing that day was to go to the party with Colin's colleagues and act as though everything was fine. We managed and the girls had a good time. The party was blessing for us that evening.

Ruth Ann (edits/additions by Colin)

The first day (Colin's view)

Neither of us were worried before the surgery or going into RA's surgical followup appointment. We knew before the surgery that the odds were in our favor: the lumpectomy was low risk, and the odds of finding something "bad" were VERY low. I guess having a good understanding of math can work against you at times.

As we heard the bad news my brain kicked into overdrive. In computer terms, I started spawning many parallel 'threads' of thought: about losing RA, about how to tell the kids, raising two girls as a single father, never heard of angiosarcoma...

But outwardly, I don't think anything showed. At least to me, we both continued the visit with our surgeon in a very methodical, logical way. It wasn't until he left the examining room and RA started to get dressed that we let go.

And then we pulled ourselves together, left the room, arranged appointments, told our parents, and went back to work. Because it was the right thing to do. No, it was the only thing to do...

Neither of us really slept that night. In the coming week, while waiting to find out if this was the only tumor, I was going to discover how little sleep I actually needed to function.

The first day.

I guess I should have thought more about it when my surgeon said that my path results were “unusual” and they had been sent to another lab for analysis. But I had had “unusual” results before and it was just a lab error, so I didn’t think much about it. When Colin and I arrived for my follow-up appointment, we all sat down, and he started in with “What the pathology here at Lahey showed was a rare cancer called angiosarcoma……..” I think I said something like “Well, I guess our summer is going to be a lot different than we had planned.” As I think back to that appointment, I cannot believe that I, no we, were able to just sit and listen to him and have a rational discussion about further treatment. But we did it. For the first time in my life, it really hit home that I could die early and not see my girls grow up. We were still waiting to hear the second opinion on the pathology from Dr. Fletcher at Dana Farber. As the appointment was winding up, we were in the process of exchanging phone numbers to hear the pathology results as soon as possible. Though, a "no" would have just put us in limbo until a third opinion could be found. At the last minute, the phone rang and it was the results, a yes. We then stopped to get appointments for MRI, Pet/CT, an appointment for a week later to see what the scans revealed, and I had orders for more blood work and a Chest X-ray.

We left Lahey in a fog. I got on the phone and called my folks before we were even out of the parking lot and then called Colin's Mom. We stopped for lunch, not so hungry, but for something to do. I had the Tom Yum soup. The hot spices were a wakeup call that we are here in the world and this was not a dream.

I had things to finish up in the office, it was hard to go in and not show anything. The first thing I did was sit down and Google angiosarcoma. This is so rare, that there aren't a lot of definitive studies. The first paper I read had a survival rate at 5 years of 20%. I was completely unable to absorb that, and then looked at the publication date, and it was 1992. Ancient history in cancer terms! Didn't have the time or the privacy to really do any further searching. One of my colleagues stopped by to chat before leaving the office. We had things to do so needed to plan for the following week. I started saying well, I will be out this day and then that day... He said what are you doing? Falling apart? And I said I guess that is how you put it.

Of course when I got home, our neighbor was mowing the lawn. More straight faces, decisions about who to tell and when.

I was able to get my sister on the phone. We had a long discussion about it, and she said she would tap her network at U. Mich. Hospital where she works. It is good to have connections to people in the healthcare field. Inevitably someone knows someone who knows someone. It also helps to have an MS in Biomedical Engineering, even if your thesis had more to do with control systems, signals and analysis than with biology.

As we were getting the kids in bed, my brother called from CA. I called him back a bit later. I could tell from his voice he was not expecting what I was about to say. He said our sister had called and had asked if he had spoken to me. When he said no, she just said well call her. Poor thing, he thought I was going to say we were expecting! Even though I never ever want to be pregnant again, I thought well too bad that is not it ;-).

Neither of us slept much that night.

Prologue

On March 23rd, my Doctor found a lump in my right breast. A mammogram and ultrasound revealed a "hyper-echoic" mass about 2.5 cm in diameter. Since breast cancer is hypoechoic, the chance that this was not cancer was about 99.999%. We scheduled a lumpectomy since the lump was large and "probably the kind of benign mass that would get larger and more uncomfortable". I had my lumpectomy on May 12th, 2009. The lump was sent to pathology. I got a call from my surgeon saying that the results of the path were unusual, and that it had been sent to another lab for further testing. At my follow-up appointment on Friday May 22,2009, Colin and I met the Dr. who said that the Lahey pathologist had found cells indicating that this was angiosarcoma. The results of the follow-up path report from Dana Farber had not yet come back, but we discussed what this meant, but we were on hold until the confirmation came back yes or no. He was not willing to write angiosarcoma in my chart unless it was certain. Not only were we stunned by this, but I think my breast surgeon was too. He has only seen this a couple of times, and then in women who have had prior cancer and lymphedema, never as a primary cancer like I have. We were in the process of giving him the numbers to contact us over the weekend as soon as he got the confirmation from Dana Farber when the call came in confirming the diagnosis. There was a flurry of activity getting me scheduled for an MRI, a PET/CT scan, Chest Xray, and blood work. We went home in a state of shock, called our parents, and then tried to act like nothing was wrong until we decided who we were going to tell and when. I had a mess in my office to clean up, so went back to work to keep my mind busy for a few hours until it was time to pick up Noelle from Daycare.