The News is a Blood Clot

Dr. Puhalla did finally call. NED – so, yay! However, the radiologist did see a small blood clot in my superior vena cava, the large vein above the right side of my heart where my port was placed for chemotherapy. It is small enough that she’s not immediately worried about it, but its presence is a concern nonetheless (she is also concerned because I did have another blood clot back in October, also the result of an IV, although that one was in a superficial vein).

I am not surprised this port is still haunting me even after it was removed. It’s no secret that we weren’t best friends for the six-month duration that it was stowed in its pocket underneath my skin. Its scars are still visible and painful to the touch. Don’t I look so bothered? (but seriously, the thing was a fucking bother)

Dr Puhalla asks if I have any symptoms from the blood clot – tightness in my chest or shortness of breath. Since she’s said the word “blood clot” I have felt nothing but tightness in my chest. For months now, I’ve had some mysterious symptoms that I’ve chalked up to living my lift post-chemo. I am dizzy almost every time I stand up after having been sitting for a while; I nearly black out when I get out of bed first thing in the morning, having to steady myself on the wrought-iron pole of the foot board. Every now and then, I have the sensation of a light electric shock that comes from my chest, goes up into my neck and then down my right arm into my finger tips, which are then numb for a few seconds. I don’t tell her about these; she is never truly interested in my symptoms or side effects even when she is the one asking about them.

So what now? Her PA called this morning with a phone number for me to call to schedule more scans so they can get a better look at this thing (a carotid doppler). I was able to schedule it for Monday morning. Dr. Puhalla will then decide if she continues to monitor the clot or if I go on medication (low-dose aspirin or a blood thinner). I was so hoping that I’d get to take yet another pill (sarcasm).

I suppose I’m supposed to be thankful that the scans came back NED and not harp on this small hiccup, but I can’t because I’m too annoyed and frustrated that nothing seems to be easy or clean in this whole situation. No one ever says, “That all went fine. Good to go. See ya.” It’s always, “This is ok, but….” I don’t like acting like a victim (or feeling like one), but it is exhausting, this seemingly never-ending string of bad news or good-but-not-great news. I’d do pretty much anything for some time where there is no news; how about just no news at all?

It’s Not Over til It’s Over

It is almost 6pm, and I am watching Phineas and Ferb with my 9yo son while we both eat ice cream after dinner (he eats chocolate with maraschino cherries on top; I eat vanilla with chocolate chips on top). My phone rings, but I hardly hear it. I go to answer but I miss it on the last ring. I don’t recognize the number anyway. When I hear the ding for the voicemail, I read the transcript; I can hear the faint voice of my oncologist:

“Hi Brian, it’s Dr._______ I just wanted to touch base regarding your um recent scan nothing that’s bad I always hate to leave these messages but I did want to ____ just got something that was found with you I am I’m going to be at this number for a while I’m don’t know if it except incoming calls but I’ll try to call you back in about five or 10 minutes um if not we’ll talk tomorrow and like I said nothing that a that’s media concern but certainly do want to review review it with you talk to you soon bye-bye…”

Way to go iphone transcription. The number is not “excepting” incoming calls. Instead, I call about four different numbers at the hospital where I know she’s in her office, trying to get someone to connect me to her, but since she’s not on call and it’s after office hours, no one will put me through.

So now, I sit here, and I wait for the phone to ring. I’m waiting for her to call me back and tell me what’s “not that bad” and “no immediate concern” but worth her calling me after office hours instead of just publishing the test results and letting me google myself into the night.

Ok let’s back up. I had a check-in appointment with my medical oncologist almost a month ago at the same time as my first Zometa treatment (which was rather uneventful). At that time, I told her I’d been having a lot of pain in the area where my right breast used to live and under my right arm – more than I think is normal for having surgery more than a year ago and finishing radiation in March. I also said that I’d like to have scans just to have a baseline now that chemo and radiation were completed – so we would know I am “NED” (“no evidence of disease” — currently the more commonly used phrase instead of “cured” or “in remission”). She said she would not order scans for that reason, but the pain was enough to convince her. So, last week I had a CT and bone scan of my right chest wall. I went alone (five hours in the hospital) because I wasn’t worried. I really didn’t think anything would be found. On the other hand, I had insisted on these scans because I knew something. I knew something wasn’t right in the tightness of the skin under my arm, the pain I felt anytime my son burrowed his head into that space to snuggle, I knew it was more than just scar tissue. But I didn’t think it was anything to really worry about, certainly “nothing of immediate concern.”

So then why am I so worried?

Osteopenia

I have been on Arimidex for over a month now, and the side effects seem to be minimal although rather annoying (my urine smells unpleasant, and more days than not I have a feeling as if I have a UTI – urgency, an itch deep within – but I clearly do not have a UTI). I have not spoken to my doctor about it, but I will at my next appointment.

People with ER/PR+ breast cancer take Arimidex or other aromatase inhibitors in order to inhibit estrogen from being made in the body. One side effect of this is bone loss. Menopause also causes bone loss. I went through surgical menopause in 2013 when I had my ovaries removed, along with a hysterectomy, to prevent ovarian cancer due to my BRCA2 mutation. Those who take Arimidex often also take a biophosphonate, which attempts to stave off bone loss. They also have regular DXA scans to check for bone loss or osteoporosis.

Because I have RA, my rheumatologist wanted to have a baseline DXA scan on file for me when I had my ovaries removed back in 2013. That scan showed no bone loss. A follow-up he requested two years later also showed no bone loss. Last week, I had a DXA scan requested by my oncologist to get a baseline after chemo and as I started taking Arimidex. Well, what do you think it showed?

In 5 years, I have lost 12% of the bone density in my lumbar spine and 11% in my overall hip (most of it to the femoral neck). Both lumbar spine and hip are now considered “low bone mass,” with a diagnosis of osteopenia.

Osteopenia isn’t the worst thing in the world, but I’m not happy about it. I have suffered from pain in my lower back and my hip/groin for years now, had several cortisone injections, taken lots of different pain medications, done physical therapy, etc. I did finally find a medication that has worked for the last couple of years, although I’m starting to have break-through pain now. I will ask my rheumatologist (he prescribes it) for a higher dose when I see him in two weeks.

Osteopenia is not really reversible, but I can attempt to keep it from getting worse, and I can attempt to prevent it from developing into osteoporosis, which I certainly don’t want.

To be honest, what’s most upsetting to me about this is my age. I’m 43 years old. My son turned 9 earlier this week. I need my body to work for several more years. I have already spent a lot of his life in pain or recovering from surgery or cancer treatment. This diagnosis, more typical to a woman in her 60s, confirms that my body, as has been typical for the last ten years, continues to decline at a rate 20+ years faster than my lifestyle. And that’s really fucking frustrating.

Recurrence with Aromotase Inhibitors

I am worried about taking these (which I will start to do after radiation and will continue to do for 5-10yrs). The side effects sound awful, particularly bone/joint pain, which I worry will render me useless in parenting and a lot of other aspects of my life.

According to this article, risk of recurrence is strongly linked to TN status; someone with a tumor like mine (T2N0) has a 19% risk of developing distant (metastatic) cancer in years 5-20 even after taking an AI. Age is also a significant factor (see appendix S5). Unfortunately, I don’t fully understand the chart, so it’s hard for me to know if my age group is at hugely significant risk.

It’s unclear to me if women in this study had undergone any other treatment (chemo or radiation).

Radiation Oncology Notes

Notes from Appointment with Dr. Vargo

My questions:

• Trips planned first week of Feb and end of March (exactly six weeks in between the two trips); hoping to start February 10th and end March 20
• Time – would like to come after swimming (8:30-9:30) in morning – so, 10am?
• What if I miss a day?
• Will effects (eg fatigue) be cumulative? (is it reasonable to go to Milwaukee in March after six weeks of radiation?)
• Skin effects – how can I prevent that? Mepitel?  Miaderm? (can you prescribe either of these – they are expensive)
• Swimming – ok to do? How will that effect skin?
• Tattoo? Required?

Answers from nurse:
Might have to wait 4 weeks to begin radiation; will have to do CT scan to determine when we can start it; can swim as long as I have no open skin; will not be able to pick a time of day for radiation (will be assigned a time – after first week can possibly adjust to a time that I want); will need tattoo if I’m going to be swimming because the stickers they use will probably fall off otherwise

Answers from doctor:

• Wait for any breast surgery 6 mo after finishing radiation
• He will make the 6-week schedule work! – if I have to pause at any time, can do two in one day or can make them up after March trip to Milwaukee
• Mapping (CT scan) last week of January
• Treating both chest wall and lymph nodes
• Low risk of heart and lung damage, low risk of lymphedema
• Pure aloe or aquaphor for skin (he doesn’t think mepitel is necessary)
• He says start to plan for tattoo (talk to people during appointment about that)