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By --bianca, on 29-Aug-2012 at 7:35 pm  Well, here I am 2 weeks after my first chemo treatment. The prediction that my hair would fall out was true. Harvey and I cut it really short and even those scraps are getting pretty scraggly. My new scarf is cute–I need another one 
Things weren’t easy but they were bearable this time. The biggest deal was that the port area hurt a LOT. This involved making a little pocket under my skin, with 2 incisions and some major bruising.
Chemo was easy enough. It does take a while but they have internet and comfy chairs. Biggest problem was that the room was hot. I was feeling fine when I went home but that’s when the port area seriously started to hurt. So I took pain pills. And anti-nausea pills which gave me a serious headache, so I took the pain pills a bit longer. And the predicted happened: worst constipation of my life. We shall not go into details, but I spent a day in MISERY from it.
Next time we start the laxative with the pills. Also the port is quite healed now so that won’t be an issue.
Turns out, only chemo nurses can do blood draws from a port so I’ve had several assaults on my arms lately. Not even the best of them managed with one stick and one woman needed five! I need at least 2 draws per chemo and I hope my veins hold out.
The other health news is that we finally went to the Pulmonary Hypertension Clinic, the only specialists in the area. They’re with the University of Washington. Everyone was very nice, listened well, got in 3 different tests while I was there including the “6 minute walk” in which I proved I can’t walk 6 minutes without resting.
General conclusion is that yes, I do have it, in a more severe way than my symptoms would indicate. I will be having some more tests to try to pinpoint the cause, baseline my status, and see how I might respond to various medications.
Because this is a very rare condition, everything that treats it is new and expensive. (At least there are treatments–15 years ago there were not.) Example, one of the treatments is mega-doses of (I’m not kidding) Viagra. 4 pills, 4 times a day…adds up to something like $20,000/year and that’s the cheap treatment. Yikes.
So, more to learn in about a month. I’m so glad that we finally got everything in order to go there! One benefit is that I’ll now be getting a permanent handicapped parking pass. Currently, Harvey always drops me off as close as possible–this will help both of us.
Chemo 2 on Tuesday! TTFN
By --bianca, on 08-Aug-2012 at 8:52 pm I’m about 2 months post surgery and am feeling just fine—no pain at all. No more fatigue than before this all started. The only symptom of cancer that I am having is a slow but steady weight loss despite not changing my eating and exercising habits at all. Maybe that’s not a symptom–maybe it’s all good!
Harvey and I met with my oncologist, Dr. Veljovich, yesterday going over the reasons for the decision to recommend chemo as well as the initial steps.
My chemo will start Tuesday, August 14 (happy birthday, Mom-in-heaven). I’ll be getting a port put in on Monday. This is good because my veins could no way support all the stabs they’d have to get. Harvey and I will also be attending a “Chemo Teach” session with a PA to really get into how the chemo works and all the possible side effects, etc. That’s Friday.
I’ll be getting a chemo treatment every 3 weeks and six total treatments are planned. At some point I will also get 3 radiation treatments. There are two side effects that everyone gets, according to my doctor. I will lose my hair (the badge of courage, I guess) and my bone marrow will be compromised (it will recover). That means anemia, clotting disorder, and reduced immune system. Other things may happen.
We got some clarification on why the chemo was recommended. Apparently, the presence of so many cancer cells in the lymphatic vessels is a very uncommon pathology finding. Sometimes there’s like one spot, but mine were all through all the vessels. So it is probable that I would still be getting chemo no matter what the lymph node findings might have been.
Final bit of health news, I will be seeing the only specialist in Pulmonary Hypertension in the area at the end of this month. Working the problems!
Love to you all and thanks for your support!
By --bianca, on 20-Jul-2012 at 6:08 pm My blog is always the last to know…probably because I feel pressure to actually write here rather than make 140 character quips.
I’ve left out a lot of stuff, so I’ll just begin at the end and then catch you up to there. I will BEGIN. chemotherapy next month. Yep, it’s really cancer. Here’s the sequence of ups and downs that has led to this:
My surgery: Before the surgery, my surgeon/oncologist decided to remove me from the lymph node study. Darn, I was just so looking forward to that green poop! He felt that the risk of me being on the surgical table long enough to remove nodes was too high because of my pulmonary hypertension. I was also visited by the experienced anesthesiologist who explained how I would be monitored. Then they wheeled me in and I got a brief peek at the robot before they put me out.
When I came to, I was coughing and choking. They removed a tube from my throat but I continued to cough and cough, bringing up lots of phlegm. Finally they took me to the surgical ICU. Turns out my CO2 levels had skyrocketed during surgery and they had to put me on a ventilator. Then they had trouble getting me to breathe on my own again. Yep, that complication was caused by the pulmonary hypertension.
After one night in the ICU and another night in a regular ward bed, I was sent home with 60 oxycodone pills, antibiotics to stave off pneumonia, and the assurance that my cancer was Stage I although we’d have to wait for the path (pathology) report for the all-clear.
My pain was quite minimal; I took exactly two of those pain pills. But I continued to feel weak and generally lousy. The third day after being home, I was running a fever of 101.7 and a call to the doctor sent me back to the hospital to treat my infection.
That time I stayed in the hospital for 4 days, I think, until the tests showed that my infection was in my blood and my urinary tract. I was so weak I could barely move, just spent time staring out the window. It was a great view of the south end of Elliot Bay and Harvey and I watched various kinds of boats. Peaceful. When my white cell count and temperature were down and stable, I was sent home with the antibiotic that was working.
During my two stays at the hospital, I met many members of my oncologist’s practice, including his fellow, his assistant, and three of his partners. Just before we left for home the 2nd time, one of the partners got my path report, skimmed it, and reported that the tumor hadn’t been too invasive, they’d gotten it all, and I probably wouldn’t need any more treatment though of course I’d have to confirm that with my own doctor.
Slow forward to my post-operative appointment with my oncologist. There, we learned that while they had gotten all the main tumor, there was extensive invasion of cancerous cells in the lymph vessels within the uterus. I would need radiation to treat for the possibility that some cells had escaped into my lymph system. He would meet with his fellow doctors at “Tumor Board” the next week and decide on the best course of treatment.
Slow forward to the post-Tumor Board phone call at which I was told that because the invasion of the lymph vessels was so great there was a 1 in 3 chance that the cancer had spread to my lymph nodes (which is, of course, a very bad thing). They could put me back into surgery to confirm the presence in the lymph nodes but that surgery would still be very risky for me. So they decided to treat me by assuming the cancer has invaded the lymph nodes (this is Stage IIIC for endometrial cancer, btw) and give me chemotherapy and high-dose radiation.
Yikes.
Right now, I know that August 7 will be my orientation to my chemotherapy. My doctor is on vacation (again!) but his nurse is working hard to set everything up to go smoothly when we BEGIN. It’s an endless ride…
By --bianca, on 09-Jun-2012 at 1:39 pm Okay, there’s nothing planned that can stop my cancer surgery now. It’s going to be on Wednesday, later in the day this time. My surgeon is even looking to get a very specific anesthesiologist who is familiar with my kind of heart/lung problems.
Things did get pretty much cleared up with the cardiologist. Harvey did a great job as my go-between. The nurse even apologized for forgetting that I had the pulmonary hypertension. The doctor called back–on my cell phone–to tell me that my CT scan showed no evidence of recent blood clots in the pulmonary artery and (thank heavens for this one) no sign of the fibrosis type of PH which is the one where the current best treatment is 24/7 IV infusion of a drug with a half-life of 6 minutes. I will be getting a referral to a lung specialist. And if I don’t like the one they recommend, I have one picked out.
Not giving up! Rawr!
By --bianca, on 08-Jun-2012 at 2:46 am In case you are wondering why this has upset me so much, check out this info from mednet:
What is the life expectancy for pulmonary hypertension?
Generally, the prognosis of pulmonary hypertension varies depending on the underlying condition that is causing it. For idiopathic or familial pulmonary hypertension, the overall prognosis depends on the severity and whether treatment was instituted. The statistics show a survival of about 3 years in idiopathic pulmonary hypertension without any therapy. Some of the other factors may indicate even poorer prognosis which include severe symptoms, age of onset greater than 45 years, evidence of right sided heart failure, and failure to respond to treatment. For patients with idiopathic pulmonary hypertension who get started on treatment and respond to it, the prognosis is better.
My symptoms are severe, the right side of my heart is enlarged and working poorly, my PH is idiopathic, and I am 56. Is it any wonder that I am anxious to start treatment?
By --bianca, on 07-Jun-2012 at 4:55 pm Well, I’m crying because I feel abandoned and angry. It’s my cardiologist. Getting the next steps out of them has been difficult every step of the way. Now my CT scan shows “no acute abnormalities” and they’ve let my doctor know.
Okay, but what does that mean to me? What about this pulmonary hypertension crap? My gyn oncologist isn’t the one who should be dealing with that. No referral (even though I asked twice), no next steps, no treatment plan, no clarified diagnosis, NOTHING.
Just a very snotty nurse who refuses to use the number I asked her to use, saying, “Your doctor has the information.”
Clearly a kiss-off.
Well, I think I have a plan: Call back tomorrow, asking about next steps. If I don’t get a decent answer, I will both stop using that doctor and file a complaint. If I do get an answer, I will still stop going to that doctor.
Addendum to plan. Have Harvey call. He can be my pitbull and besides some people just respond better to men. And I would probably cry…
By --bianca, on 04-Jun-2012 at 4:40 pm At least in our experience, when you start your major maintenance of a wooden boat there’s a long period where you discover more and more is wrong. Every time you look somewhere new, odds are there’s something needing fixing. It’s an endless ride…
Well, today I had an echo cardiogram of my heart and I have a new diagnosis: severe pulmonary hypertension. So, we can blame the postponement of today’s surgery on my lungs.
I don’t know much about this yet. I do know that the right side of my heart is greatly enlarged and very inefficient (“hardly working at all” is the actual quote from the doctor) from apparently years of working way too hard to pump blood through my lungs. There are several types of pulmonary hypertension so the next step is to find out which kind I have. I’ll be having a CT scan of my lungs on Wednesday to test for this. Then I’ll probably see a pulmonary specialist and get a short term treatment plan so that I can have the cancer surgery as soon as possible.
However, unlike the cancer, this will require treatment for the rest of my life.
I’m really glad that it was found. For one thing, having it be a lung condition makes more sense to me than strictly a heart condition. My lungs have always been kind of terrible. For another, I blamed the symptoms on being out of shape but this is probably the root cause of my tiring quickly, fatigue and shortness of breath. So, if treatment lessens the symptoms I can make plans to get into better shape!
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Just for grins
Some digiscrapping sites
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