Feels a bit better today

I do feel a bit better today. I even considered taking a shower from the waist down, but my brother got into the bathroom before me. My appetite is not where it should be. I mainly eat yogurt, applesauce, and fruit smoothies. I think I am maintaing my weight.

I had a CT scan on Monday and haven't heard from Dr. K. yet. That means, I think, that there is nothing urgent. I will let you know when I hear.

I have physical therapy soon and later is wound care. I tend to average 2 appointments a day.

More news when I hear.

A Much Needed Break

I saw Dr. K yesterday and after recounting all the side effects I have, he agreed I need a break, at least until after Eddie starts school, so at least a couple of weeks.

We talked about treatment options - chemotherapy - and he also looking I to the TDM-1 trial. He will think about what is next and let me know. What this means is after arm radiation, I will get at least two weeks.

My mood is already better. Tired, but now thinking of other things to do.

He increased the fentanyl patch by 12 mg a dag (now 37 mg) so I don't have to take as much dilaudid, soothe constipation and bloating can start to go away.those sgmptoms are better, but my tummy still cramps.

My CEA was 20, which could indicate both tumor growth as well as tumor death. My interpretation is both. There are spots on my chest growing, but radiation is also killing cancner cells. The CEA has. Een as high as 50. So, it could be worse.

I am relieved I get a bit of a break. I will also get a ct scan to see if Nything else is brewing -will try to schedule for next week when I am stronger.

Herceptin tomorrow

I was supposed tom have Herceptin and Zometa on Friday, butnright before my radiation treatment, my stomach got so bloated and was cramping that I was in tears the whole time during radiation. The docs wanted a blood draw, but the nurse at the radiation center couldn't get a vein so I wet to Ambulatory Infusion. The nurses there are upset I had the port taken out since it makes it harder to access a vein but the kink in the catheter, pain and loss of range of motion was too much.

The new symptom was like the one that broke the camel's back. Other side effects I have are:

- fatigue
- pain in my arms and shoulders
- yeast infection in my mouth
- constipation
- occasional headaches when the steroid wears off
- lymphedema
- arm wound is weeping lots of fluid so after awhile, my shirt gets wet
- bald
- weakness and shakiness
- numb fingers in my right hand - the shakiness makes it hard to write, even my signature

Meds that I am on to counteract side effects:
- steroids (but weaning off them)
- dilaudid
- fentanyl patch
- occasional Tylenol, for the headaches
- Valium to sleep mat night
- medication for the yeast infection
- gas-x for the bloating
- stool softener
- Chinese herbs
- probiotics
- an acid reducer

I am feeling a bit better today, although I may have stayed up too long cuz my left arm got swollen. Laying down with my arm elevated helps with the edema as well as the pain.

I am worried about getting through Herceptin tomorrow as I couldn't handle it on Friday. Just worried about being comfortable through it. I also have radiation (6 more sessions) and will see Dr. K. But I got through Friday as I was away from the house for three hours and had calmed down by the time they drew my blood. So that is how ai will get through tomorrow - one thing at a time. I think I am also supposed to get my CEA.

My dad has been great about getting my meds. Eddie has been understanding, too. And I think that I am a tad better today than yesterday. So I will continue to take things day by day. I have much to be thankful for - a supportive family, a great care team (the radiation nurse stopped by at home today and yesterday to change my dressing - send her blessings, too).
Thank you so much everyone! Life is still good. I hope to get outside some to enjoy the deck and maybe entertain visitors. Thank you all!

Being Truthful

Yesterday, I decided to be truthful on facebook and got such an outpour of support that I wanted to say thank you.

My dad says I always put a good face on everything and mentioned that no one else really sees what I am going through. In the end, this week, I have been crying a lot and worried that I am on a downward spiral. Dad reminded me that my blood counts are good, the tumors aren't growing, and I am doing treatments to keep more things from growing. My weight is stable, too.

But there are side effects, including pain and fatigue and nausea. The nausea and fatigue should start going away in the next few weeks. I am not sure of the pain, though. I hate being on pain meds, but if it means I can start operating somewhat normally soon, then so be it. I am on the fentanyl oath, but take an additional dilaudid every few hours. Dilaudid makes me tired, which is okay for continued rest.

I am not really good company right now and sorta just want to hole up at home and rest. I will let people know when I am feeling upmto visitors. Thanks to Jeanne for giving me permission to be lousy company.

As people remind me, I have been through a helluva lot these last few months. Four surgeries, pus three weeks of radiation with two more to go. I will ask my parents today to do a light massage on mt left arm to try to move the fluid into my back and lessen how fat my arm is. That might help decrease the pain. I think the numbness in my right middle finger is better, but it is hard to tell. Because of the numbness in my right fingers and the swelling in my left, I can hardly lift anything.

I just hate feeling so weak and shaky. But time heals, right? Just got to give it time.

Thank you to everyone for reminding me of my strength. I don't feel strong,but maybe now I am drawing on that strength to get me through the next few weeks.

Another big thank you to my family for helping me and taking Eddie on outings. I hope to do that again soon.

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!

Continued taking it easy

I am continuing to take it easy. Dad and Scott continue to work on the deck - it wile really cool when it's done! Mom and dad are out running errands. I am finding it harder to find movies on TV today, but they are there.

I slept okay last night, too, although my TV was on most of the night. Seems like I might wake up every couple of hours, fill my glass with ice, and eat some fruit snacks. Seems like these fruit snacks work really well for me.

I think the Dilaudid is making me constipated, but better that than feeling pain. Will get Chinese herbs to help with that.

My neck and shoulders really hurt when I woke up about 10pm last night, so I lowered my pillow and that helped for today. Still used a lot of heat to loosen up.

I get tired every time I take Dilaudid, but that is better than not sleeping.

I didn't even take a Zofran today. Let's see how ling that'll last.

It is a sunny day, but not as hot as yesterday, thank goodness. Seems to make my lymphedema worse. But resting as my doctors ordered.

A lot going on

On Monday the 25th, I saw Dr. K, the next day, I saw the nurse, on Wed, I saw the radiation oncologist, and yesterday, I saw the plastic surgeon in Portland. The end result is that there are a couple of smaller tumors growing under my left arm, near the armpit. So we did a planning session today and will start Radiation to both the brain and the arm on Monday. I have 8 more sessions of whole brain radiation and 15 more sessions of the arm. I am about ha
Way done with whole brain radiation.

30 days after radiation, I will have another brain MRI and probably a CT scan and can hopefully get on a clinical trial for the TDM-1 trial. But it is in Stockton, California and I would have to go every three weeks. That is what Dr. K is hoping for. Or I could start another kind of treatment here, like a Taxane. But we will cross that bridge when we come to it.

The tumor in my chest is growing, but as the wound care nurse said, it would probably be huge by now so it is good that I had the bulk of it taken out five weeks ago.

In the meantime, I am taking lots of drugs for side effects. Zofran for nausea (but maybe I can taper that off as the antibiotics gets out of my system), steroids for swelling in the brain which helps with headaches and nausea, dilaudid for pain (due to the growing tumors in my arm and increased swelling), Valium for anxiety and sleep, and Ibuprofen, I. Addition to Chinese herbs and supplements.

I am back to not sleeping, get weepy from the pain (controlled now with the Dilaudid), I am a little nauseous, but eating a lot and often helps with that. My appetite is picking up but it is a lot of little meals and I don't eat much. I am not very good company. I am gonna get through these next few weeks. I think next week will be the worst. Or maybe it was this week as I find the right combo of meds to control the side effects. I do think the steroids keep me from being so weepy and the pain meds help too.

It looks like my summer is shot. At least my dad, brother, and friend are building the deck. So I guess we concentrate on the back yard. I can't sit for long in a restaurant, so I am at home or at my appointments.

I am not posting much on the blog or on Facebook because my arms hurt. Maybe now that I take Dilaudid, I can post more again.

Also say Happy Birthday to my son today .. . He turns 11! Wow!

Physical therapy and MRI

I saw my physical therapist who said that now that I have been treated with antibiotics for a few days, it is okay to begin wearing compressions garments again. The Area that was red and inflamed has improved, from her perspective, but it is still red and inflamed. So for now I will stay on the antibiotic.

My son saw the dentist and all is well - no cavities!

Then I had the MRI, both with and without contrast. It wad fine except I couldn't quite get my lymphedema arm comfortable. I will get results late tomorrow or Wed. I really hope there is nothing measurable there so I continue getting stronger and let my digestive system heal. (still have some diarrhea).

Went to some friends' child's fifth birthday at a local park. Eddie played at the park and in the sand. He did the same at my friends' softball game yesterday. It feels good to get out and about.

I am tired at the moment. Got about 7 hours last night. And my right shoulder and forearm seem less tense, as does my left shoulder. I think the Valium is working! Less anxious, muscles are relaxing. Getting more sleep. It is a good thing.

Mosaic today

I had a relatively low-key day today. I woke up shaky and with some diarrhea, but within a couple of hours, The shakiness disappeared. I was tired all day, though, as I had only 2-3 hours sleep.

I worked mostly on grouting and placing tiles on my design. I will try to post pics when I can.

Eddie had a tough day at school today. I wonder just how much of his problem is due to what's going on with me. He is why I need to be around for years to come, to help him through days like this as he feels like I am the only one he can talk to about days like today.

Tomorrow, I have therapy - will probably talk about what Dr. K said. Then I get this bandage off my head - yay! My head is really starting to itch! Then Uncle Alex and Aunt Nancy will be done for a visit.

No other real news, other than I get Herceptin and Zometa on Friday.

An Outing

I woke up feeling out of sorts this morning. I didn't know what I wanted to do and then it occurred to me that I was tired of being home. I wanted to get out of the house and have a change of scenery.

So, I suggested and we decided to go to Spirit Mountain Casino and do the lunch buffet. Dad took Eddie to the children's arcade and I gambled. I lost $12. Eddie won 2200 tickets and came home with a giant slinky and giant sunglasses, among other things.

All in all, we were gone about 4 hours. It was nice to see the countryside. But I'm tired now. I don't feel much like doing anything so I'm back to watching TV.

One of our grad students stopped by with her partner - they brought us two quiches, a veggie one and a bacon one. We had the veggie one for dinner - it was good! Thanks, Courtney and Dale!

I was invited to go to my teammates' birthday celebration after their softball game today, but I'm too tired.

Yesterday, I was somewhat productive. I found a house at the coast, finally, for a handful of nights in July. I also worked on my mosaic design and rested. I think I got about three hours sleep last night.

Tomorrow? I need to get a digital file from my Humanities office so that I can finish my edits to a chapter I wrote last year. I want to get those edits done tomorrow, so I can get started on my cancer blogger analysis and write-up. I also need to pay a bill. But I might also get some more mosaic supplies and work on the mosaic.

I only have to have three steroid pills today. Tomorrow, I will take two and only one on Tuesday. Can't wait to get off that damn stuff. I really wanted to get a solid few hours sleep.

Thanks for driving today dad. It was really nice to get out of the house!

More Baby Steps

Over the weekend, I had less and less drainage from the wound. The JP drain was only collecting about 20 ml of fluid in 24 hours. So, I saw the surgeon yesterday, who pulled the drain out. So, now, finally, no more tubes coming out of me.

There's also less drainage coming from the wound. L., my wound care nurse, was able to debride most of the dead tissue from the wound. So, now I have less dressings. There is also hardly any odor (yay!) and less leakage onto my clothes. I was able to wear a shirt (a pj top, really) for 24 hours without anything getting on it. A record!

I started taking my Chinese herbs, turmeric, and Vitamin D3 over the weekend. I can't prove it, but I swear the turmeric is helping the wound heal!

I feel I can lift my left arm higher, too.

I still have a low grade fever (up to 100 once yesterday) off and on.

But I still tire easily and need to lay down after activity (like after an hour with the wound care nurse). Also, my left calf became achey Sunday evening and it only feels better after I put heat on it. (My sis said, "oh, no, maybe it's deep vein thrombosis!" which made me worry. I don't think I have many of the risk factors, other than laying down a lot and having a long surgery. My leg isn't swollen or red, though, so I don't think I have it.)

My colleague offered to take my class this week. When she came over to visit (thanks for the cornbread, N.!), I was still emotional about things. I'm not quite ready to face students. I get uncomfortable sitting at an upright chair.

But there are improvements. I might even try to wear real clothes today. Or at least, real pants.

Limits

I am finding what my limits are, in terms of pain and levels of activity. I was dismayed and discouraged yesterday afternoon and evening because I got so uncomfortable and tired and tense after a friend came to visit.

I am trying to wean myself off of Dilaudid - Thursday into Friday, I took only one 2-mg dilaudid every 8 or 9 hours. I was fine as long as I stayed home and either sat in my chair or my bed with strategically placed pillows.

But yesterday, I went to wound care and about an hour later, a friend came to visit. Around the time of her visit, it was time for Tylenol - and I ended up taking a dose of dilaudid a few minutes after she left. My friend and I sat at the kitchen table, but I couldn't get my arm comfortable. My back - where they took the lat flap - was achey. My breastbone (sternum) feels pressure. And, where the drain comes out, around my ribs, bothered me. My shoulders were tense. I was restless because all I could think of as we visited was how uncomfortable I was. I couldn't wait to get horizontal in my bed.

Granted, before that, I hadn't been in bed since about 7:30 that morning. I sat in a chair in the living room, cleaned up, then went to wound care, then sat in the chair some more. I think that may be progress.

So, I took dilaudid and laid down and napped off and on all evening.

I was worried last night because I realized that if I can't sit at the table for long - or stand - I won't be able to teach next week. I still find it hard to concentrate for long on any paperwork. I don't know how I'm going to grade papers. It's hard for me to concentrate on what I'm going to say.

I tire easily. An hour with the wound care nurse and about 45 minutes with my friend wiped me out. How can I handle an almost two-hour class? I was also running a low-grade fever (99.4 - 100) last night.

In retrospect, I probably should not have taught our department's 4-credit class. I can probably handle the Honors College class (one-credit) that I'm co-teaching with a colleague. I will probably cancel all other appointments next week except for wound care.

So, recovery is still slow. I guess, when I think about it, it is not unexpected. I was anemic before surgery. They gave me two units during surgery, but my hemoglobin was 7.5 when I came home. It's been hard to retain nutrients - I am on a stool softener because of the dilaudid, but not all my food is digested; then the new antibiotic gave me diarrhea. My appetite is fantastic - I eat a lot. I'm also eating more yogurt to help with digestion. But my body is trying to fight off infections, build new skin and tissue, and fight pain/discomfort.

The good news is that the wound is healing. L., the nurse, took off some dead tissue. The honey dressing really helped with the odor. There is less drainage - from about 90 ml in 24 hours to 60ml yesterday. L. could see good pink tissue under the dead tissue. She was happy with it.

My plan is to take Dilaudid more often (i.e., every 4 or 5 hours, maybe 6), lay down more, rest. I'll see how I feel on Monday. But I tend to think that I may have to talk to my boss about this class . . .

Near Tears - Need a Distraction

Near tears? Actually, when talking to my two grad students in the last couple of days, I've actually teared up, especially when they asked how I'm doing. One of them even told me today that I don't need to put a brave face on for her benefit!

But in truth, I put a brave face on because it makes me feel better. I'm tired of feeling sorry for myself.

I was feeling nauseous this morning - I took two of my nerve pain pills (which is allowable), but I found that it's too much for my system.

I am fatigued. I slept decently last night and so was able to operate fairly normally this morning. But by the time I got home, I felt tired. Work was a welcome distraction.

I still have a stuffy nose. And the pain pills wear off after a couple of hours or so.

My plan is to endure the next few days. I am trying to focus on the fact that by this time next week, I might be heading home. Surgery will be done with and I will no longer have a growth under my armpit.

My dad is also frustrated because he's not able to do much and when he does, he gets tired.

I think we both need to foci on what we can do, not on what we can't do, right dad?

I'm blaming chemo and getting older!! LOL

I am tired today. I guess I walked a lot. But I woke up three times last night (my norm lately is only 1 - a HUGE improvement).

I spent late afternoon and into the evening hanging out with a colleague and my grad research assistant. My colleague, T., was in town from Oxford (I visited him at a symposium in August 2009) and we had to talk about our project on ANCSA. I was supposed to meet him and another colleague at the Society for Human Ecology conference in Las Vegas in April, but the conference happens just three weeks post-surgery, so I can't make it. I'm going to send my research assistant to give my paper for me.

Anyway, we had dinner - and I had 2 microbrews - but I was home by about 7:30pm or so.

This afternoon, another friend called me to ask a favor. He asked how I was doing and I replied that I was tired because I was "out late last night"!!

He then asked, "How late?" and I said, "8:00pm". He just chuckled and said, "8pm is late for you!"

Why, yes. It is!!

Sheesh. I'm getting older!! But I think I can also blame chemo, eh? LOL

Dad's Home . . . and Fatigue . . . and Flexible Spending Accounts

Dad came home yesterday afternoon. She is finally eating more solid foods and we are all working to figure out our new roles in the household. I expect we'll continue to settle into these new roles for awhile.

I have also been experiencing fatigue in the late afternoons and evenings. I still manage to get out and about sometimes, but I'm really just gonna try to sit and relax as much as possible.

I also signed up for a healthcare flexible spending account and while I occasionally have issues with insurance reimbursements (taking sometimes over two months to get reimbursed for acupuncture) and with the billing department at the hospital or the clinic, I must say working with ASI Flex has been a real pleasure. They are prompt with the processing and reimbursement of my claims. I filed a claim on Sunday evening and was reimbursed by Thursday. A heck of a lot better than 2+ months for insurance reimbursements. The flexible spending account also allows me to claim up to the amount I contribute over the year, even if I haven't paid the full amount into the account yet. So, for instance, if I have $1000 taken out of my check over 12 months, I can claim the whole $1000 in January if I want to. What this means is that at the beginning of each calendar year, I have a $1,000 out of pocket maximum. That often means that I will get a bill from the hospital for about $1000 in March - so while I haven't paid that much in yet, I can still claim it and pay the bill. This week, I got the reimbursement before the bill was due, so now I have the cash to pay it. Whew! The money they take out of my check is also pre-tax dollars, so it lowers my total tax bill.

It's always nice to end on a positive note, eh? : )

Presentation at Work Went Well

My colleague, K., and I presented a preliminary paper on Birds of King Island today for a class on campus. We'd gone to a cabin in the woods a week or so ago, which gave me time to begin doing background research on the topic.

It's been actually pleasant (maybe even fun) to go through and read old ethnographic notes and reports on Iñupiat culture and particularly bird symbolism, art, and folklore. Reminds me of one of the reasons why I love my work! It was fun putting together the slides and finding some good images.

I think that the presentation went fairly well today. I think most of the students enjoyed it, although I saw a couple napping off to the side.

My colleague, K., had already done a lot of work on the powerpoint, so my own work was fairly easy to pull together. Thanks, K.!!!

I'm tired, though. There's a big outlay of energy for that kind of work. I also didn't sleep long enough this morning. I also think the pain takes a lot out of me. I felt fine during the presentation as I had Tylenol 90 min before and the gabapentin (i.e., neurontin) about 30 min prior. But it's been hard this evening as the meds wore off.

A good day.

P.S. Dad got a temporary pacemaker today. He had a couple of episodes last night and then again after mom left this afternoon -the ones this afternoon were bad enough that they decided not to wait. Afterwards, dad even had an appetite. So, progress!

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!

CT Scan Results and Visit with Dr. K

Or, aka, "Some Good News and Some Expected News".

The good news is that the treatment regimen appears to be working systematically, that is, throughout my body, in my system. There appears to be only scar tissue in the lungs now - *maybe* one spot that may still be a tumor, but for the most part, the areas are smaller and it looks like scar tissue. I had multiple spots in my lymph nodes in early fall - no mention of those on this CT scan. And, a suspicious spot on the liver (which Dr. K didn't think was a tumor) is gone.

So, the treatment is working at some level. That made me feel better about how fatigued I feel. I'm not quite bouncing back from the last chemo - it's getting harder to do so. Even today, ten days post treatment, I still feel dead dog-tired.

But the CT scan still shows a mass under my armpit - which I can see, so obviously I knew it was there. The good news is that the diseased tissue doesn't extend all the way down to the bone - there's a nice layer of tissue so the surgeon might be able to get 90-99% of the cancer there. Also, there's a spot that is on the scar tissue of my TRAM flap breast, near the breast bone, is apparently a tumor. It's grown in recent months, but I didn't really notice it until a month ago. It's a hard nodule about 3cm long and maybe 2cm wide. Plus there are spots in the bone marrow, but it doesn't look like there are more of them since the last one.

So, what's the plan, man?

Because February is a busy month for me with all sorts of work and fun activities, and the surgeon, Dr. F, is away at a conference around March 3-4, it looks like I will have surgery the week of March 7. That will give me three weeks of recovery before classes start March 28.

So, I have my last HAZ treatment on Friday the 28th - Herceptin, Abraxane, and Zometa. Then, I will have another Herceptin treatment upon my return from Hawaii on Feb 14th and before we go to Eddie's school tournament. Then, I'll have three weeks off of any chemo before surgery.

I'll visit the radiation oncologist in mid-February because we might do some radiation to get rid of any residual cancer in the area. And probably do radiation on the nodule near my breast bone. That may happen through the beginning of spring term.

There's some light at the end of the tunnel, in other words. In six weeks or so, I will be done - you hear that, DONE - with the wound in my armpit. I'll say that again, DONE with dressing changes in about six weeks. DONE.

Can you tell? I'm happy about that.

Afterwards, we just need to start thinking of what to do next. That'll depend on where I stand.

This also means that beginning two weeks after my last Abraxane treatment, around mid-February, my hair can start growing back. That's good because I think my eyebrows and eye lashes are definitely thinning out lately. I haven't had bushy Eskimo brows in a few months! LOL

I also hope that Dr. H, the plastic surgeon, can get rid of the dog ears at my waist since he will be there anyway taking tissue from the Lat area for a LAT flap. He may also need to take out the implant and put in another one since Dr. K and I could both see that the cancerous tissue went all the way to the implant. I hope that they make implants that are flatter - i.e., not so round - since my TRAM flap boob is flatter rather than round. He said he can also lower it so that I'm more even.

Looks like it will be a good spring for me - no wound, maybe more even boobs, no dog ears, and hopefully, NO CANCER!!! Well, there will always be evidence of cancer in my bone marrow. But let's say NO GROWING CANCER!!

Weird, Maybe a Little Freaked Out

As I said in my earlier post, I have been tired all day. A deep fatigue that I couldn't shake with caffeine. There is an ache in my shoulder - I think there's lots of inflammation there, which I think is a good thing. The ache isn't bad enough for me to use Tylenol or Ibuprofen, although I may if it doesn't go away in about ten days.

I was supposed to go play Bunco tonight at a friend's house. But in the end, because of how tired I was, I decided to stay home and rest. (I'm trying to remember what Joanna said her doctor said, if you are experiencing fatigue, that means Herceptin is working.) Then, I decided to get into my jammies and then I looked at the dressing - I saw the surgeon today and discovered that the whole dressing had pulled away from my skin on the bottom, so then I had to change the dressing.

I took the dressing off (it was fairly soaked) and then one of the larger satellite lesions - I've been watching it for a few days because it seemed like the skin was deteriorating - started bleeding. I used one sheet of a drain sponge to try to stop it and it took several minutes before it did.

Weird.

I was a little freaked out. I wondered what I should do in case it didn't stop bleeding. I'll call the surgeon tomorrow and ask for advice.

Of course, it makes me wonder things like: Will they want to do surgery sooner rather than later? What if more of the tissue dies? Will they want to remove it so that I won't have to deal with bleeding? But if they do surgery, I won't be able to fly - I don't think - and I'm supposed to go to Hawaii in two weeks.

Okay, I won't borrow trouble until I know more. But bleeding cancerous tissue doesn't seem like a good thing? Well, maybe it is, but how do you control it? I will post about my visit with the doctor later today.

Did I Say My Mood Was Good? Hmmm . . .

When I posted the other day, I stated that my mood was generally good. I have to say, though, that I have had a couple of days (today and last Thursday) when I felt out of sorts.

Both days, it was because I was tired and hadn't slept well the night before. I tend to kick myself when I don't because I see it as my fault when I can't sleep. I gotta stop punishing myself, right? So, I need to change some habits - like not eat sugar or have more than one diet pepsi each day and also to do qigong. Make all of that habit so that I can sleep better.

I also think I'm a little discouraged with this treatment regimen. The side effects are getting worse - more neuropathy in my fingers and also I had blisters on my feet from not having good shoes. My face has been breaking out - from a Chinese medical perspective, it means I have "toxic heat", which means a build up of nasty chemicals from the chemo. I've also been noticing that I have dark urine more often, particularly in the days after treatment. That means my kidneys are working extra hard to get these chemicals out of my system. I also deal with this cycle of constipation and diarrhea with a few days of normalcy after each treatment. The wound also has a distinct smell these days - which may be caused by the cancerous tissue and/or dying tissue.

And, then to top it off, I don't know if the treatment is working. It worked for two months on Abraxane and then it stopped working. I just started Herceptin about ten days ago. But Herceptin takes longer to work, my doctor says. So, I'm suffering from these side effects from chemo with no guarantee that it's working. Kinda makes a person want to refuse treatment.

I need to bear with the treatment a little longer, though, and see what happens. I think I am seeing some small signs in the wound that something's happening. The red lesion (a mini Mount Herminator) has white tissue at its tip and today, when I took the dressing off, it started bleeding - more than a drop or two. I see the wound care nurse tomorrow and the surgeon on Wednesday and will report that to them and see what they think. Also a couple of the satellite lesions toward my back seem to be getting softer and the skin around it is darker, which may mean that it's dying tissue. Soooo, I may be seeing some positive results of treatment, but I don't know for sure.

In the end, I'm diagnosing myself with treatment fatigue. I'm tired of being tired. I'm tired of the constipation/diarrhea/normal cycle. I'm tired of the neuropathy and the face breaking out.

Because of the fatigue, I have half a mind to refuse Abraxane for the next cycle. I'll go ahead with the HA (Herceptin and Abraxane) this week, but I may see if I can skip it for month 5. It obviously stopped working on its own. Herceptin alone may be doing the trick. And, if they opt for surgery, I may go off Abraxane anyway.

So, yes, I do get fussy and out of sorts. Today was one of those days. I'm fatigued and I'm tired of all the treatment side effects. But when I remember to live in the moment, I am still in a good mood. I also just have to remember all those people out there who are rooting for me, praying for me, sending me blessings and good positive energy, and I smile. So, thank you. It helps more than you know. : )