Didn't sleep as well

I didn't sleep as well last night so I think I am going to lay down and rest again. I took two dilaudid about an hour ago and it is catching up to me.

My shoulders are extranachey this morning and I think the dilaudid is finally kicking in and helping.

I ended up with bloody urine again lad night. Now I think it might be related to diet pepsi. I had one Sunday and ended up with bloody urine through the night. Inhad one yesterday and now I am having it again. So no more diet pepsi or Ibuprofen at least for the next week or so. And more rest.

I need to pay bills later today. But rest first. My last WBR is today. Thank god. Mom wanted to celebrate but I think that needs to wait until I have more energy and maybe less pain.

I may be really tired now and not doing much. But on the whole, I think I am doing much better than many. If I can get through the next few weeks, I can start gaining strength and energy. Then the attention will be on keeping this crap under control. I have a son to raise.

I am just happy that my family is here to help me so much. Seriously. All I do is go to radiation, eat, sleep, and rest.thank goodness for family to help!

No more ibuprofen

The doc at the radiation center took my blood and a urine sample yesterday, but by the time I got there, the bloody urine has gone. We figure it is the Ibuprofen, which I took on Sunday. They alsomsaid I could take a second dilaudid pill so I age been alternating two with one to help with pain.

I cried a lot yesterday, especially at the radiation center. I can't wait for the WBR to be over. Two more sessions. Then I hope the nausea goes away and I just have to deal with the pain from the arm radiation. 15 more sessions of that.

No tears today so far. That's good.

My hair is falling out from the WBR. I expected it. Maybe in a month it will start growing out again.

Still constipated from the dilaudid. I take a stool softener and Chinese herbs for it.

Oh. I found out that I will start having to pay for my health insurance in October - $500 or so a month. And Eddie's social security benefits will also be deducted from my long term disability payments. I need to figure out monthly expenses here soon. We will be okay, but money will be tighter come October. I have extra now, so will save up. Nice to know what the finances will all look like finally so I can talk to Eddie's dad.

A Wrinkle in my Disability Plans

I had hoped to take long-term disability all next year. It turns out, though, in order to have my benefits covered, I either need to work at least half-time or pay COBRA. This is because I do not have enough FMLA left to protect my benefits. (I've been on FMLA for over a year. Long story; don't want to talk about the nitty gritty details.)

I can't afford COBRA, I don't think, with the decreased salary I would get on disability. I'd like to keep my current insurance. I could go on the Oregon Health Plan, I supposed, but I don't know how well it would work.

I really wanted to have a stress-free year where I didn't have to worry about work.

CRAP.

I really wanted time off. But I may end up teaching a course a term or something. I'll have to talk to my supervisor. Not 'til next week sometime, after I'm home from this next surgery.

Sheesh. I'll be up tonight worrying about this one, I think.

UPDATE: I found out that to pay for my own insurance out of pocket,it would cost me about $1250 for both medical and dental. Holy cow. I have half a mind just to put it on my credit card for a few months so I can rest up and not worry about work during the fall. We will see.

P.S. Why I Can Play This Summer

Another thing I am thankful for - my state benefits for work that will allow me to play this summer.

I will get short term disability checks that, I think, won't be much of a decrease in my pay. I worked enough in May and the whole year that my benefits are paid through the summer.

In other words, I will be okay financially with a little extra cash to play.

So, as I said, life is good. It would be worse if I had to worry about money. But I don't. And, for that, I am thankful!

Overwhelmed and confused!

I am close to exhausting my sick leave. I also don't have many FMLA eligible hours (too tired to explain), which protect my benefits. I was also under the misconception that if I go on Short Term Disability, my benefits would be paid for. So, I got hold of people in HR to figure out what to do. Actually, I wanted them to lay out my options for me so I could make a decision.

But someone, instead, sent me several websites to read over. It's hard for me, yet, to concentrate. So, I got overwhelmed. I don't know what to do.

I finally talked to the FMLA specialist who finally explained things that helped.

The bottom line is that as long as I work or have enough sick leave to cover half of my work hours in a month, my benefits will be paid in full. I have enough sick leave to cover my benefits for next month. I will be able to work over 50% of my hours in May to cover benefits in June, and will likely have enough in June to cover July. I also expect to do the same next fall, so my benefits will be paid through summer.

That was my biggest worry is whether or not I'd have to pay benefits out of pocket.

I also don't think I will have to take unpaid sick leave this month. Next month is another story. But I may gain enough FMLA hours in May to protect my benefits. I just have to worry about decreased salary, potentially. I don't know how that works.

But just in case, I will go on short-term disability. Even if I have enough sick leave, they will give me $25/week. That might help cover any unpaid sick leave in May. Disability can be back-dated, too. The other good news is that I haven't been spending as much money while I've been home, so now I have some reserve to cover May, in case I need it. And, if I don't, I have some cash to take a little vacation when school lets out in June!

Keeping Busy

It's been a somewhat busy week - but then when are't they?

Eddie had his Science Fair earlier this week. He received a "red ribbon award" for his project, meaning he was in the 2nd highest 25% of his class. He just didn't elaborate very much on his conclusions, which was the main reason he was marked down. But a little birdie told me that one of the judges said that Eddie's project was his favorite. His project was "Game On!" in which he tried to find out which position would give him the fastest time on Mario Kart Double Dash. His results was sitting on an exercise ball, then sitting on a stool, then standing, then lying down.

I've been working on taxes, too, in the evenings. Organizing receipts and creating spreadsheets. Ya wanna know how much I spent on medical expenses? About $7,100. This included deductibles (or out of pocket expenses), what insurance didn't pay for acupuncture, pharmacy, dressings, dental, travel to Seattle, and Chinese herbs and supplements. (Criminy, no wonder I wasn't able to pay down my HELOC very much!)

Last night, I hung out with my volleyball buddies before the game, then I watched the game, and then we hung out some more afterwards. The first evening in a long time when I felt mostly normal and could stay out that late (i.e., 9:30pm). Yay!

It's interesting. As my loyal readers know, I've been feeling very fatigued and also tired of being tired, and maybe discouraged because I could see that the tumors in my left armpit aren't shrinking as fast as I might want them to. I haven't felt really social because of that. However, this week, with the good news on the CT scan, the last Abraxane treatment (and being able to start growing my hair again), the news that I'll be done with the wound in about six weeks, etc., I suddenly feel more social, so I was cheery last night, joking around with my friends, giving them a bad time while they played. Happy to be alive, in other words.

I think between the good news and going to Hawaii . . . I'd have to say that life is good. Thanks to everyone who continues to keep me in their thoughts and prayers!

The Cost of Dressings

I mentioned last week that my wound has an 8-pack a day habit. Now, that's only the number of packages of drain sponges I use each day. But there are other dressings that I use. I decided to write this post because I told my friend in Hawai'i that I would need to bring a suitcase for all my wound dressings and she said something like, "we have a Wal-Mart here that you could buy what you need". So, I told her that I had special dressings and that I get my dressings through a wound care supply company that bills my insurance directly. And, then I flippantly added, "I go through about $100 in dressings a day". In the end, that was an exaggeration, but not by far. I use about $22 per dressing change or $44/day. So, here's what I use everyday these days:

- 1.25 oil-emulsion non-adherent dressing (3" x 3") - This goes on the open skin and won't cause further degradation or bleeding since it shouldn't stick to it. The wound is big and there's a satellite lesion that has started to bleed so I cut one of them up into quarters to put over the bleeding part.

- 4 packages of AMD (anti-microbial) drain sponges (4" x 4") - This catches all the drainage and keeps little bacteria from growing. This goes over the oil emulsion dressing.

- 1.25 Mepiplex foam dressing (6" x 6") - I use this to hold the drain sponges in place. It also absorbs drainage and the adhesive doesn't stick to the skin. Unfortunately, when it drains a lot, the fluid causes the adhesive not to work, so I can't use it alone. But it's great to cover the sensitive (i.e., degraded) skin and not cause further drainage.

- 1 Suresite transparent film dressing (6" x 8") - I put this over over the Mepiplex in order to help keep the drainage from seeping onto my clothes. This is hard on the skin, though, so I only put the adhesive part over healthier skin. This is big enough to have about 1/2 to 1 inch of transparent dressing that is longer than then the Mepiplex on each side, which helps prevent seepage.

- 2 Suresite transparent film dressings (4" x 4.5")- I cut each one in half length-wise and use these halves to give a transparent overlap to the top and the bottom of the Mepiplex to prevent drainage.

Oil Emulsion dressings (3" x 3") are about $0.55 each @ 1.25 per dressing change = $0.69
AMD drain sponges (4" x 4") are about $0.56 each @ 4 packages per change = $2.24
Mepiplex foam dressing (6 " 6") are about $9.95 each @ 1.25 per dressing change = $12.44
Suresite transparent dressing (6" x 8") are about $4.63 each @ 1 per change = $4.63
Suresite transparent dressing (4" x 4.5") are about $0.93 each @ 2 per change = $1.86

So, that's $21.86 per change, two changes per day = $43.72 each day x 7 days a week = $306.04 a week.

Thank goodness for insurance! I order directly from the wound care supply company, who then calls my doctor themselves to get the prescription or order and then they bill my insurance directly. There's no way that I could afford this on my own . . .

Loves Acupuncture!

The last couple of days have been kinda tough. I'm worried about the satellite lesions as well as my finances.

As I said in one of my posts yesterday, both the wound care nurse and the surgeon felt that I've plateaued and/or the cancer in the skin in the wound is growing again and that Abraxane may not be as effective as it had been. That's not the kind of news one wants. But it confirmed what I've been feeling for the last week or so. I also feel as if my body is not able to clear the toxins from the chemo as well as it had been - my kidneys were achey as were my leg muscles. So, my acupuncture treatment today was partly geared toward removing the toxins, partly toward giving me energy and partly toward supporting my immune system to fight the tumors. Afterwards, I feel as if a big weight was lifted off my shoulders and I felt happy. I actually felt quite chipper. I finished a lot of paperwork at work today - the final report at NSF, the IRB close out, a change of grade for a student whose final paper got lost in email, and I updated my CV. Yay!

I also realized, as I lay on the acupuncture table, why I have been feeling conflicted about talking about my finances. A couple of friends have asked if there was any way they could help. I was not sure how to answer.

On the one hand, my medical expenses have been well over $5,000 this year. This month, for instance, I've spent about $400 in acupuncture treatments. I'll get reimbursed, eventually, about $200 from insurance (they pay 70% of the actual treatment, but not the herbs). But there have been about $60 in unreimbursed acupuncture treatments and $140 in herbs. The five-mushroom blend that I take is about $65 - and three of the mushrooms have anti-cancer properties. There are herbs that help me sleep, help with digestion, boost my immunity, and for energy. I also had my out-of-pocket expenses, plus travel to Seattle (and a couple of trips to Portland for my son), plus I've had to get 2 crowns replaced ($800 out of pocket) because cancer treatment affect the level of saliva in my mouth, which means that bacteria can thrive and so I ended up with cavities under the existing crowns. While I had help with some of my expenses to Seattle, which covered about 2/3 of the expenses, I still had about $750 or more in out-of-pocket expenses. That represents about 12% of my total take-home pay this year. (I just realized one reason why I'm not paying down my HELOC as fast as I might like - a lot of my discretionary money is going toward medical bills.)

On the other hand, I have splurged on myself - buying hats and scarves, taking little trips to the Coast or to Central Oregon, buying myself a Mother's Day gift, etc., stuff for the house. So, obviously I can afford to do those kinds of things which some people might consider to be luxuries, I obviously do not need to ask readers for any donations. In other words, if I scrimped and saved and didn't spend money on things like I have, then maybe I wouldn't be as stressed out about my finances like I am. It's my fault so therefore I should just tighten my belt.

So, when people offer to help me financially, I don't feel like I can ethically accept money from them because if I can afford to buy myself a hat or a pair of pants, then I don't need the money after all. That's why I feel conflicted. Plus, in our society, unless things are really bad, it's not right to ask for money. I am much better off than a lot of people.

This is why I love acupuncture. I feel lighter and happier today. In fact, after my treatment, my left shoulder and upper arm (which had been feeling heavy) felt lighter and healthier. I plan to start putting a turmeric/aloe vera gel paste on the wound since turmeric has anticancer properties. I also realized why I felt conflicted about the finances. I'd like to ask for money, but I don't feel like I should ask for money because I have splurged on myself. Just realizing why I am conflicted makes me feel better! I want to thank my acupuncturist for helping me today! Thanks, Brodie!

Man, having cancer is complicated! Isn't it?

A Treatment Plateau?

In the last week or so, I began to think that I've reached a treatment plateau. I say this because in the last couple of weeks I have had some new satellite lesions that have cropped up around the wound and they don't seem to be shrinking or disappearing. In fact, a couple seem bigger, but that may be due to inflammation (which can be a good thing - a sign that my immune system is sending Herminator-2 cells there to do battle). I think it is inflammation because my whole shoulder joint is feeling tight and swollen and is becoming more achey. But maybe the satellite lesions are bigger because they are growing - we just don't know for sure. In the end, the dramatic changes and reductions in the tumors that I had in October and into November seem to be slowing down. Darnit!

I think I'm reaching a plateau with Abraxane because I don't have as many white blood cells - the total numbers of white blood cells is about 1/3 (or a bit more) than what they were before I started Abraxane. So there are less Herminator-2 cells running around killing the cancer cells. I had one idea which I brought to my doc's office, which was to let me go off Abraxane for a few weeks and allow the Herminator-2 cells to grow again. But as my oncologist's nurse practitioner staed, we don't know that that would work, so I risk tumor progression whereas we do know Abraxane is working at some level.

Then, to top it off, my side effects, which were relatively minor to begin with (digestive issues, acne) seem to be getting worse. The fatigue is about the same and of course I'm still bald. But the constipation seems to be lasting longer, and over the last week, my kidneys were achey, which tells me that my body is finding harder to flush the toxic chemicals out of my body. The herbs are helping - my acupuncturist put me on a new one last week, but it took me a couple of days to figure out the best way to take it. She said not to take it in capsule form, but to either swallow the powder with warm water or to steep it as a tea over night. By the time I got into a new habit with steeping it overnight, I was constipated. My face has also been breaking out quite consistently in the last week.

So, I'm already thinking of what to do next or one option is to add something to my treatment regimen in addition to the Abraxane. The UW Tumor Vaccine Group has another clinical trial for skin mets, which combines Abraxane with Imiquomod, which is an ointment that has been used with melanoma (I think). I don't want to travel to Seattle, however. I would have to be in Seattle for the first treatment for at least a week. I can't afford that right now.

Dr. D. from UW did say that Dr. K would be able to administer Imiquomod here as it is an FDA approved drug. I see Dr. K next week, so my plan is to have him call Dr. D and see if maybe I could add this to my regimen. That is, of course, if he agrees that the satellite lesions are not disappearing.

I also see the surgeon and the wound care nurse tomorrow. I will say that the overall wound is healing, slowly but surely, it's just the satellite tumors that are worrying me. Maybe the surgeon or the nurse have some ideas . . .

It could be that I'm already becoming tired of Abraxane. I am starting to get tired of being bald and the acne and the digestive issues are annoying This Friday, I will have finished three cycles of Abraxane. I will be halfway done. I think the weekly schlep to get an infusion is getting to me - even though the nurses are great. But I get tired, both literally and figuratively, of not sleeping. I think that as long as I had such an impressive response, the side effects seemed minimal, but as they get a little bit worse and I'm not responding like I was, it's getting old.

I also admit that the work stress has been greater lately - trying to put in an application for release time, a grant proposal, and changes to an article, not to mention teaching the class, grading papers, and now recommendation letters, etc. - it's been a really busy few weeks. Productive, but stressful because of deadlines. I wanted to get another grant proposal out this week, but it's not working out that way. I think it's time to lower my expectations and take a break for a couple of weeks. The point is that the work stress may be contributing to my decreased response with Abraxane.

And, there's financial stress. I keep getting statements from Samaritan Health Services - even though I've met my out-of-pocket maximum, their billing office has consistently forgotten to post an insurance adjustment on my account, so each month, I get bills for $100 or $200 or $300. This means I have to call them, tell them they are missing an adjustment, and verify that I don't owe them money. To top it off, I had my teeth cleaned a few weeks ago; usually insurance pays for this, but it turns out that my dental insurance will only pay a maximum amount each year. I reached that maximum after my crown this summer, so after the fact, I found out that I owed $200 for a teeth cleaning. So, I paid that bill, which meant less for Christmas spending. I also admit to spending more than intended for Christmas . . . so money is tight. I haven't been extravagant. I bought some presents for the Giving Tree tags. I also went to the coast for the night last weekend. I didn't spend much there, but I guess it all adds up. A couple of months ago, I think I figured out that I've spent about $5,000 in medical expenses this year. My $1,000 out of pocket, plus the trips to Seattle (even though I got about $1500 in donations, I probably spent maybe an additional $750 or so), plus over $1,000 in dental, plus acupuncture, wound care dressings, herbs and supplements and mileage. It all adds up.

Okay, enough whining. Time to live in the moment and enjoy the holiday. Let go of stress. I need my immune system to be working at an optimal level. Stress doesn't help!

Fun Times on Camano - UW Visit - Exhausting Drive Home

Eddie and I left for Camano Island after his swimming lesson on Tuesday.  We ran into some traffic in Seattle and a little through Everett, but other than smelling something around my right front tire, it was uneventful.  I'd been smelling the smell for a few days and would try to get other people to smell it, but they couldn't.  So, I figure it was my imagination.  But I smelled it again when we stopped to grab lunch in Portland, so I worried and fretted about it before deciding to stop at a Subaru Dealership in Longview.  Diagnosis?  A torn CV boot on the interior side of the tire.  The guys at the dealership said that the tear was throwing grease onto my catalytic converter, which then caused the smell.  They said that it would cost $350.  But they said it would probably be okay to drive it on to Camano Island, but that I should probably get it fixed while I was up there.

Great.  So we found the nearest dealership and luckily I could bring the car in on Thursday, when I had my appointment at UW.  Extra expenses with the car and my teeth.  It would sure be nice to spend money on something else for a change!

At any rate, we made it to Camano around 5pm and had a wonderful spaghetti rustica made by my high school friend, C., who owns her own Italian restaurant in Tehachipi.  We sat on her mom's and stepdad's deck.  It was gorgeous.  We faced east, across Puget Sound, to Mt. Baker.  Sunny and blue skies.  A glass of red wine.  Visiting and talking.  Eddie played the wii - they had Wii Fit Plus with an obstacle course that he liked to play. We played Mario Kart with C. and B.  Eddie and I slept in a tent in the back yard - it was a little chilly outside, but okay in the sleeping bags.  I got up at 4:30am to use the restroom - and saw a rim of pink lining the tops of the Cascade Mountains.  I was a little bit wired from the drive (and some caffeine about 3pm) so I didn't get to sleep until 1am. Eddie woke up at 7am and I kept him in the tent until 8am when people started stirring in the house.

Wednesday, after a lazy morning, we went out on C.'s boat. We left from Camano Island State Park and intended to eat a Langley on Whidbey Island, but there really wasn't a free place to moor the boat, so we boated all the way to Everett and had lunch at Anthony's.  Then, it was a choppy ride home.  Eddie loved it as we bumped across the water.  He would just sit with this sly grin on his face.  It was a beautiful sunny day again.  Another night in the tent.  But I slept longer - from 10:30pm to 7am. 

The next day, C. and I drove to Seattle - after dropping my car at the Subaru dealership in Marysville.  The good news is that they said the repair bill for the new CV boot should only be $200 plus tax.  Whew!  Then, off to UW.

I had a CT scan, then met with Dr. S.  She had a couple of girls who were college juniors (from underrepresented groups) tagging along with her who observed the exam.  C. sat with me and we visited about old times in high school.  I received another vaccination. Dr. S. said that they are changing their study protocol to give the CT scan at a later visit because they are starting to see that the t-cell infusions do not have an immediate response against the cancer - that it usually takes months.  She wasn't surprised that my lymph nodes were still swollen and inflamed (although I think the inflammation was back to where it was before the t-cell infusions).  She also felt the little nodules were little micrometastases.  They are inflamed now because of the t-cell infusions. 

So, I wait.  Give it another couple of months to see if the lymph nodes clear up.  I'll call on Monday for the CT scan results.

I was pretty tired Thursday night and ended up with a slight fever.  C. and I ate dinner in Seattle since we didn't finish with my appointment until about 4pm.  I was tired because they drew a lot of blood and because of the vaccination.  I hung out on the couch and C. waited on me hand and foot.  Don't I have great friends?  They also took care of Eddie.  L. and B. (C.'s mom and step dad) babysat Eddie all day.  They said he was really easy to take care of.  They took him raspberry picking (and we brought the berries home with us) and ran a couple of errands.  He played the wii and played on the computer.  L. (C.'s mom) later told me that we are raising a great kid - he was nice and polite and not high energy.  That's my boy!  Thank you, C., L., and B.!! 

On Friday, after another lazy morning, we went to garage sales, then had lunch at a local cafe, and more garage sales before a lazy evening and dinner on the deck.  Friday was a little chillier - the clouds didn't lift until afternoon.  I found a silk screen print on rice paper by C.B. Greul, a kind of fish (definitely not a salmon or trout - it's fatter) for $5.  There was a little bit of damage - like it had been rolled up in a closet and then a little bit of water damage kinda soaked up the paper since there is a faint tan ragged line along the bottom of the print.  I googled C.B. Greul and found that some of his prints are going at auction for $150-400.  Not too shabby!  I am trying to decide what to do - it's a nice print and I may keep it.  Or, I may try to get it restored and then try to sell it.  What do you think?

On Saturday, Eddie and I left our hosts about 9:45am, with the intention of meeting some friends in Portland.  I found out, however, that they were going to a mall, not the Hawthorne District, and i felt like I didn't really want to do that.  It depended on whether or not I got to Portland when they were still there.  But we hit traffic at Federal Way (just south of Seattle) and it took us well over an hour to get to Fort Lewis (just north of Tacoma) - a trip that should only take 30 min.  Gak! 

Then it was slow again from Olympia to Grand Mound because of road construction.

By the time we got to Portland, my friends were on their way home.  So, Eddie and I stopped at the Family Fun Center in Wilsonville for about an hour.  We got home about 7pm.  I was tired tired tired!

The other good news is that I found out that I don't owe my department as much money for the course buy outs from last year.  In fact, it will be a lot less.  So, when I finish my chapter for the Alaska Statehood project tomorrow or Tuesday, I'll have enough extra salary to pay down debt, put money into savings for property taxes and emergencies, and get a house at the coast next month.  That's a big relief.  Whew.  Now I just need to get to work! 

Okay, I have a Herceptin treatment tomorrow.  I leave on July 27th for an 11-day trip to Alaska.  Eddie's Wipeout Kids' Edition Birthday Party is on July 24th.  My birthday is July 21st.  So, a busy week ahead of me before taking off to Alaska! 

I am so thankful for friends.