Support for the East Valley

When I visited my doctor in March, I mentioned to him the death of Debbie Z. from the hospital's breast cancer support group. Debbie had metastatic cancer, and was one of those with metastatic disease relegated to the support group for all of breast cancer-dom, with no regard to the differences in Stages 1-3 and Stage 4. I wondered aloud to him how the facilitator would have handled this in group, and expressed to him how angry I was still with her for her refusal to acknowledge that a mixed group was not serving the needs of all. I told him of being accused in group of playing "Cancer Olympics" and the feeling that anything Stage 4-ish got the 'shush' in group. 

Yes, this is the facilitator with whom I  butted heads over the wording under my painting last spring. Same facilitator with whom another friend with metastatic cancer, Lisa, (whom I met on Inspire, but never in person, though we were patients at the same medical center) butted heads over the need for metastatic support and separate groups, and then simply gave up and went to a more distant and less convenient place for support. Lisa passed away metastatic breast cancer just a few months ago as well.

When I told my doctor how mets was 'shushed' in the group, he was upset and said "that's not right", and that he was going to have a talk with that facilitator.

I had forgotten all about our conversation until I saw him this month, and he said that by the way, there was a new support group starting for metastatic cancer! And he said it was thanks to me. He will attend the first meeting, coming up the first week in May, and act as a medical liaison of sorts to the group. Of course, tears sprang to my eyes. I will of course attend faithfully. I hope it goes well. I hope it is for all metastatic cancers, ie, ovarian, etc, and not just breast. I won't know until I go, as this is all the info I got from him.

I want to ask all my friends here and at Inspire to give me some thoughts and ideas to take with me to the group, as to WHY it is important to have a group for metastatic cancer, and not just combine it with all stages of breast cancer. I fear being the only person at the first meeting, and want to be armed and prepared.

I also think I will take a rose, one for Debbie Z. and one for Lisa R., and place them each on a chair with a name card. I hope this will emphasize the differences between breast cancer and metastatic cancer, and what we face that those in early stage breast cancer don't need to face on a monthly basis. 

Fatty Liver? What a surprise...

Visited with the doctor this past week. The results of my PET/CT were fine. It pointed out a few active spots, possibly a new one on my left scapula. But still fine. They pointed out a spot in the right abdominal area with unusual SUV (yes, the spot I had already seen), but could not tell from the PET/CT if it was foci or vascular. Doctor suggested an MRI to determine.

My MRI came back clean. Doctor said you rarely see such a healthy liver in one with metastatic breast cancer. Slightly elongated, and fatty. Really. With my body type, I fully expected my liver to be svelte and slender. Uh-huh.

But no spot of concern. Doctor was thrilled. CEA slightly trending up again, but not enough, with good scans, to want to change medication.

Why does Stable feel Anticlimactic?

 

I did indeed finally speak to someone at the oncologist office Friday afternoon, and she gave me lame excuses as to why my scan had not yet been reviewed by my doctor, and then put the responsibility back on me to always call if I haven't heard on a scan in 2 days.

My dear, hardworking doctor called me the next morning, on a Saturday. Overall, the report said the scan looked good, and pronounced the bone mets stable. He said he would really like to sit down with one of the radiologists and have a personal look at the actual scan and be shown what is what. I really REALLY hope he does that.

This time, they noticed that spot I mentioned. I told the doctor that it was on the last scan as well, but they apparently had not noticed it then. They could not, from the PET/CT, say whether it was vascular or foci. My doctor asked if I would like to leave it and watch it, or do an MRI to find out. I agreed to an MRI, if we do it before the end of the month (when my COBRA expires).

Why does waiting for that result put us through so much stress and strain? Like someone said, it is what it is, and I can accept whatever the outcome, I really can. It's the waiting that makes us crazy. This week's ordeal makes me say "no more" to the scans, no more to the vague ambiguous reports from radiologists I never meet face to face. Until walking becomes nearly impossible, or pain becomes unbearable, or a tumor marker skyrockets, I say no more routine scans.

I do feel that this fiasco of a communications breakdown is the fault of the office staff and their system. I don't blame my doctor. My scan result floating around, waiting for his review, however, is unacceptable. I fell through the cracks, as was my fear. I felt forgotten, and I hate that feeling.

 

Every Stupid Scan

PET/CT scan completed this Monday. When the imaging center called to schedule the week before, they offered that Thursday or Friday. I said that I hated waiting over a weekend for scan results, so I scheduled for Monday.

Today is Friday. I have no results.

I wasn't falling apart about it until last night. I was fine Wednesday, thinking surely they would call that day. Then I remembered that my doctor only has hours at the office where I have been seeing him on Thursdays, so surely I would have a call the next day. No call by bedtime Thursday (last night). I left a message on the answering machine category under "test results" this morning. It is now creeping toward 4 pm.

Falling apart isn't the best description. I am tight. So tight I might burst. A balloon resting in uncomfortable proximity to a needle, waiting for the slightest breeze to blow it to doom. Every stupid scan I tell myself I will not get anxious over it. Every stupid scan I swear I can wait a few days for results. And every stupid scan I end up convincing myself that something has progressed while waiting for the call that says something incredibly underwhelming in comparison to the stress in which I have been wallowing, something completely non-informational, like the famous, "The doctor said your scan looks fine."

I swear that if I have waited this entire week for a nurse to call and tell me that the scan looked "fine", someone is going to be wounded.

By Wednesday I was thinking that something isn't "fine", and I haven't gotten that annoying call because the doctor wants to call me himself. Doctor only calls personally when it is bad news. My phone visits every room in the house that I visit. It rests in anticipation on the vanity during each potty break. Doctor has been known to call very late at night, so I don't give up until bedtime.

I answer calls from numbers I do not recognize early in the morning. So far I have had a wrong number (who at least apologized for waking me), a mis-dial from Life Alert (I hope the person who had fallen and couldn't get up didn't suffer needlessly for that dialing-finger faux-pas), and a "financial institution" to whom I lied that Shelli was not available. (Just leaving a number is NOT leaving a message, and if you can't tell a person what your call is regarding, then why would that person call you back? And seriously, if you can't pronounce my last name correctly, or even close, why shouldn't I deny being that person?) I never answer the phone when I don't recognize the number, but I don't dare not answer when I'm waiting for "SCAN RESULTS".

Friday afternoon, and I am torn between worse case scenario and having fallen through the cracks. Yes, I have the disc of the scan. No, I don't know how to read them. I look at them and bemoan the fact that fat shows on a PET and CT. I found a bright colored spot on what I assumed to be the liver area of my body, and discovered that the SUV is at the side of the screen. This bright spot had a much higher SUV number than the other areas. I whipped out the last CD from October's "fine" scan, and found it there, too; dashing my CT sleuthing moment of smugness. Mostly looking at scans I can't read of bones that all look fine to me just further frustrates, and I shouldn't do it. I didn't do it until yesterday. Had my scan results phone call come in a timely manner, I wouldn't have looked at all.

For the non-medical and non-cancerous among you, the SUV to which I refer is not a Tahoe or an Escalade. The "U" stands for "uptake" and it is the level at which the various parts of your body suck up the radioactive glucose now coursing through your veins, bones and tissue when partaking in nuclear medicine.

I did learn one thing while once again trying to glean anything useful from the Internet, however. There are four areas that suck that stuff right up, and therefore appear dark on scans. Brain, thyroid, heart and bladder. The spot in question is none of those four things. I know enough about anatomy, and not much more, to know that.

Do I call again before 5:00pm? I can't possibly make it through the weekend without popping.  On the side opposite the balloon-threatening needle are a wire dog brush and a broken bottle. My COBRA coverage expires May 1st. A year and a half ago I really did not think I would still be around today to face this insurance crap. I'm staring at applications that should have been completed and faxed this week, but scanxiety is crippling my already crippled ability to cope with such things; with the six month void between COBRA and Medicare. Wouldn't it have been easier, certainly more economical, to have gotten sicker during that first year and a half?

Also, there are more than 4 weeks between the third Wednesday of last month to the third Wednesday of this month. Food is almost gone. Bank account nearly on empty, medicine probably not at a level to make it to that magic Wednesday. I'm not going to count it today, that's for dang sure. On a day like today, I need chocolate milk and carbs. Not being able to run out and get some only adds to the helpless, hopeless, catastrophic feeling of balloon vs needle.

Yes, I am catastrophizing. How can I not? I've cried more this week than I like to cry in six months. I'm really starting to wonder if enduring to the end simply means not offing yourself to get out of it all.

Oh yes, they are in for some babbling at 4:30.

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