The saga of the wound vac.

Doctor ordered it Monday, said I should hear something Tuesday.  Nothing.  So I called her office and they didn't have a clue.  Wednesday morning the wound vac people called me and told me they couldn't do anything for me because my health insurance was canceled on February 17. 

I. Flipped. The. Fuck. Out.  I tried logging into the internal website at work to look for information, and my password doesn't work anymore.  I flipped out more.  It took five hours and I have no idea how many phone calls to finally get to an HR person who informed me that health care is only paid for the first month of long term disability, and that I needed to sign up for COBRA.  Nobody had ever mentioned this to me before. 

Then he said he'd send me the stuff and it would probably take a week to get reinstated.  I flipped out again.  He found a branch office of the company that manages COBRA for Oracle over by SFO, so I we drove over there and handed over the paperwork and a check for $2400 and magically I have health insurance again.  It's going to run us $1800 per month until I go back to work.  I had been thinking about going back for six months after I do this next batch of chemo, and then taking a few months off again for reconstruction.  Now I'm sure I'm going to do that, because I can flip back to short term disability and everything's covered again.   

So I was reinstated yesterday and the wound vac people said they would UPS the thing and somebody had to be here from 9 to 5 today to sign for it.  At 5:10 tonight I called the wound vac people to let them know it hadn't gotten here yet, only to discover they never actually shipped it.  Of course not.  And now there's no way they can ship it until Monday so I won't have it until Tuesday at the earliest. 

I flipped out again and described in extreme detail exactly what's going on with my chest (believe me, you haven't heard all of it, it's disgusting) and asked if we could drive to Fresno to pick the thing up.  And then he remembered that there's a distribution warehouse in San Leandro, and a night guy who comes in at 7.  So he worked it out and Bob drove out there and came back with a giant box of crap which includes the wound vac.  Yay!  The machine itself is not very big, maybe five inches square and three inches tall?  I can cram it in my purse when we leave the house.

This morning the home health care people called and did some initial screening and said that a nurse would call me later today to schedule a time to come over tomorrow.  Of course, the nurse never called.  My campaign of harassment will begin at 8am tomorrow.

I am so over this.  All of this.  I am so tired I don't have the words to express it.  I just want to be done and not hurt anymore.

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I have to say that it says something about the state of healthcare, insurance, and the fact of medical bankruptcy in this country that I felt an exponentially greater amount of panic when I was told that I had no insurance than I did on the day I was diagnosed with cancer.  Universal health care.  We need it.  Nobody should ever have a week like this.  Even with all the bullshit I've had to deal with, I am one of the extremely lucky ones, and that is horrifying.    I get to continue to be lucky for the low low price of $1800 per month. 

wound vacuums 101

Saw the surgeon today.  She wants me to try a wound vacuum to see if it speeds up healing.  She hasn't said so, but I can tell that at the rate it's moving right now, we'll be doing gauze changes for months. 

The way the vacuums work is that they fill the wound with a piece of foam cut to the right size, then seal the whole thing under plastic, then poke a hole for the hose that connects to the vacuum, and then seal it all up under another layer of plastic. 

The dressing changes are supposed to be excruciatingly painful because the new flesh around the edges can grow into the foam and it gets torn away when they remove it. 

On the upside the steady vacuum pressure should help, and it will pull all the liquid out.  I still soak through several layers of gauze, an ABD (thick pad), and three layers of ace wrap in about six hours.  It will be nice to be dry and not have to sleep on a towel anymore. 

The big downside is that I'll have to carry the vacuum with me everywhere I go for however many weeks or months this takes to heal.  Or maybe two vacuums.  The doc wasn't sure if they could hook up one machine to both wounds. 

They're going to send a nurse to the house to install it, probably sometime tomorrow or Wednesday. 

holding pattern

Not a whole lot to report.  Sunday night the incision on my right side started leaking.  The surgeon has been pulling out 320 ccs of liquid (about 10 fluid ounces) every 4-5 days for the last couple of weeks, but the incision gave way and I woke up in a puddle. 

So now we're doing wound packing on both sides.  The pressure hurts so I'm taking more pain meds.  surgeon thinks about three more weeks to go.  Bob says he can see progress, but I can't look.  I still pretty much burst into tears when we do the dressing change (twice a day, 9am and 9pm).  If it was somebody else's body I could probably stomach it, but it's too visceral right now (almost literally?).

Other than that I'm not doing much.  I have the attention span of a flea and am seeing double from the drugs.  I think I've probably got about two productive-ish hours per day, which get burned up on doctors appointments or phone calls to schedule more appointments or trying to return emails or making lunch.   Otherwise  I've been marathoning The Good Wife on my laptop from bed, napping, and reading YA novels. Seeing double makes TV more interesting - it's not a big shift, but it is sort of like watching with a picasso filter or something.  There's just an extra eye or chin every once in a while.  Brains are weird. 

We're still not scheduling chemo again until my chest heals up, so I just check in with the doctor and have bloodwork done to confirm that my hemoglobin levels are improving. 

slow week

I think the clot in my arm finally broke up yesterday - this morning was the first morning that I woke up without a swollen hand, and I can type comfortably and make a fist again.  My feet and lower legs have also been massively swollen (from all the IV fluid and lack of movement) since I got home from the hospital the last time.  They are starting to shrink down.  According to the scale at the surgeon's office I lost 11 pounds between Monday and Friday.  Pretty sure it was all water.  Gross. 

I had my followup with the gyno surgeon on Wednesday.  Everything there looks good and is healing right.  We started talking about HRT and how instant menopause could be contributing to my mental state.  She put me on an extremely low dose birth control pill that will supply estrogen and progesterone, which should help even things out a bit.  I'll try this for two months and then we'll reassess. 

The shrink referral finally came through on Friday but he can't see me until the 26th or so.  In the mean time I had a long talk with my sister (both a cancer survivor and a psychologist) about meds and I realized that I've been doing something kind of stupid - I've had a prescription for Ativan for months now, and have been using it to help with sleep and stressful situations during the day up until the surgery.  I stopped it cold turkey because I didn't want to mix it with percocet.  But now that I've stopped taking the percocet during the day there's no reason not to take the Ativan when I'm feeling upset, so I'm doing that again.  It's helping a little - less anxiety, more sleep.  Both things I need.  I'm nowhere near out of the woods yet, but it's a little better. 

This week I've got bloodwork and a progress check with the surgeon on Tuesday and then a followup with the oncologist on Wednesday.  I suspect the oncology followup is going to pretty much be about setting up another checkin in another two weeks to see if I'm healed enough to start chemo again.  Depending on the bloodwork, she may also order another transfusion.  I hope not. 

hitting the bottom

I hope I'm there.  Saturday I had to go back to the emergency room - my left hand started swelling and I had to get tested for a blood clot.  I do have one, but it's superficial in my left arm, so they sent me home with instructions to take a ton of NSAIDs and use hot compresses. 

In the mean time, the incision on my left side popped open at some point this weekend and it continues to leak fluid all over the place.  I finally gave up on gauze yesterday and taped an adult diaper up under my arm. 

This morning I got my first good news in a while - it's official now - I do not need radiation.  There's about 10% chance of recurrence on the chest wall given all of my other factors, but the doc said she thinks the risks of radiation outweigh the possible benefit at this time.

This afternoon we went back to check in with the surgeon.  She decided that despite the incision reopening (about an inch, pretty close to my armpit) she doesn't want to stitch it closed.  She showed Bob how to pack it with gauze and I'm to take two showers a day with him repacking and redressing the wound between now and Friday.  It is so disgusting I can't even tell you, and it smells awful.  I smell awful. 

I broke down again at both appointments today.  I'm just not doing well at all emotionally.  I took a referral to a psychiatrist at the cancer center from the radiation doc.  I don't know how long it will take to get in to see him, but I hope it's sooner than later.  I don't want to consider SSRIs or anything long term right now, especially because I'll be starting to play with hormone replacement therapy to some extent this week, but I need to do something.  If I could take a pill and sleep away the next month of recovery, I would.  I know that's not possible or reasonable, but it's the most appealing idea right now.  I just can't deal with anything else right now.  I feel like a zombie, and I'm pretty sure I smell like one too. 

more roller coaster

Wednesday proved to be another bad day.  I got home from the hospital Tuesday afternoon, and still felt like absolute crap. Almost couldn't make it up the stairs.  I felt like I gained a hundred pounds and couldn't lift my feet enough to clear the steps.  I also could not physically step into the bath tub.  Even at my worst, these had never been problems before. 

So Wednesday morning we got up early to go for my check in with the oncologist.  She wants me to do twelve more weeks of chemo - carboplatin, four rounds, once every three weeks.  She also noticed when I got there that I was bleeding through my shirt.  The incision on my left side started oozing again.  And she also noticed that my hemoglobin was at 7.1 when I left the hospital on Tuesday and was appalled they let me go.  So she ordered two units of blood for me.  That took the rest of the day to accomplish.  The infusion itself was five hours start to finish.  We got home around 10:15 that night. 

The transfusion did help me feel better - now I'm about at the same level of energy as I was around the pulmonary crash in october.  I cannot believe that I'm saying this is better, but it is and I'll take it. 

Yesterday I put on my clean pajamas and went to meet my folks for lunch - they're driving through on their way home for the summer.  I can't put real clothes on - still too many open wounds, scabs, stitches, leaky bits, so I'm parading around town in flannel pjs from lands end. 

This morning I woke around 2:30 to discover the enter left side of my body was wet.  I got up to look and there was fluid just freely running out of the incision on my left side.  This isn't the same stuff that was coming out of the drain - that was more fresh, dark blood.  This was watery brown used up blood.  So I called and woke my surgeon up and she told Bob how to redress it, and then we drove back down to the hospital at 7 this morning where she pulled a bunch more fluid out of the wound (nothing infected, thank goodness) and dressed it again.  And then we came home.

Assuming nothing goes wrong this weekend, my next trip outside the house will be Monday morning when we go see the radiation oncologist, and then in the afternoon we check in with the surgeon again.  Wednesday I check in with the gyno surgeon and start talking about hormone replacement options.

This week I have to cancel the reconstruction surgery.  We'll set it up again for after I'm done with chemo.  Everyone agrees that I'm not starting chemo again until I'm 100% recovered from where I am now, which should be 2-3 weeks at the least. 

For now, I am so goddamned tired.  I can't really sleep.  I'm not in enough pain to take anything for it and I'm tired of the opiate fog.  My eyes are constantly watering but I'm not crying. 

My goals for the next 72 hours are to stay hydrated and eat some small amount of animal protein at every meal.  That's it, and it's a pretty high bar at the moment.

Lessons in systems failures.

These last few months have really taught me how good my health used to be, and how easy it is to lose it entirely.  I just got home from another 3 night stint at Alta Bates.  I still had roommates, but they were much better this time around. 

So, to rewind a bit I spent a week at home recovering.  I felt like crap, barely left the second floor of hour house (we planned on that).  Many people kept us well supplied with food and things were improving.  I haven't had much of an appetite, but that's normal for the type of drugs I was on. 

Saturday morning I woke up and just didn't want breakfast.  I turned around at about 10 and went back to bed.  At two I started dry heaving.  At four my temperature hit 104 and Bob forced me to go the E.R.  Kidney and Urinary tract infection.  I was so dehydrated they couldn't find a vein for the IV.  They ended up having to use ultrasound and then put a picc line in.  So I've been IVs for a solid three days to get my fluids up and deliver antiobiotics.  I'm still barely eating, but I haven't thrown up yet today, so that's a good start. 

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I never wrote about the meeting with my surgeon from last week.  It was a good news/bad news situation.  The good news is that the flaps of skin that now sit where my breasts were have attached firmly.  The bad news is that the seam where they join that goes into my armpit is necrotic - black, dead skin.  It's healing well underneath, but it looks and smells absolutely disgusting.  Doesn't help my appetite either.  There's still some discussion to be had, but this may put my DIEP flap in jeopardy since I didn't heal well from this one.