Looks Like WBR After All

Yesterday was my birthday - I'm now 47 and expect to have many more birthdays!

I am doing okay. I think the time at the coast helped me regain some of my mental and physical strength. I might have slept a lot, but I also took long walks on the beach, too.

I saw the radiation oncologist - the one who does gamma knife in Portland - and he suggested that I do whole brain radiation at this time. It is because of the size (about 3.3 to 3.5 cm by 2.2 cm), the irregular area of it (it is not perfectly round), and because there is a cystic component. The good news is that it is not next to the area that causes nausea or vomiting. He also didn't think I needd to start right away. But I decided to go ahead and start next week.

My digestive system is healing. I don't get the cramps like I used to in my stomach. I still just have diarrhea and the only time I really have any nausea is with Tykerb. So, I am off of Tykerb for a few weeks.

I am only going to do 10 treatments of WBR. I have already had 2. They want to do 13. I'm doing to stop it at 10. I also want to start with a lower dose next week - 200 rads (or whatever the measurement is). The usual at this point is 250. But as I've said before, I think the standard doses are for women (or men) who are bigger than I am. I want to see how well I tolerate the treatment.

In the meantime, through the weekend, I will stay on antibiotics. This is because a new wound opened up under my arm - where an area grew. It also bled a lot when I took the dressing off yesterday. So, I took all three Keflex (only took 1 a day for the last week and a half) yesterday and a Flagyl. I want to try to take all three through this weekend to see if that clears up that infection. I saw the wound care nurse yesterday instead of today. I won't take the antibiotic when I start WBR next week. The area where we're trying to grow skin is 2.5 x 0.5 cm, down from 3.5 x 1.0 cm last week. So, that's healing. The chest wound is also healing.

I guess I'm okay with the decision. It will all (or most of it) will happen while Eddie is bak East with his dad.

All in all I broke even at the casino. Pretty good for several days of playing. My sister, though, won about $300. She stopped when she won. Smart girl.

My parents got me a card and flowers. My son also got me a card and a gift certificate to a local coffee place. We treated ourselves to yummy summer drinks there yesterday, after his appointment. I also got a card from my oldest friend, P., who I need to write an email to. I got a card from my supervisor, too. That was cool. Plus over 100 well wishes from Facebook friends. My cousin and her husband are visiting last night and today. They head on up to our cousin up north later this afternoon.

My biggest problem is that I can't seem to relax my shoulder and arms enough. I'll relax them to go to sleep - and will sleep for a few hours (last night about 5 or so), but then I can't get comfortable again. It seems that laying down is the only way to relax them, so I tend to nap a lot.

I will meet with my grad student later today and see about getting her started on a couple of projects. A friend of mine also moved into my office - it will be interesting to see how she moved things around!

Have a good Friday!

Updates on Surgery/Wounds and Anxiety/Sleeplessness

The night before last, I think I got maybe 3 hours of sleep. By the time I got up - and talked to my folks - I was weepy. Frustrated. Anxious. Uncertain. Pain in my right arm/shoulder

The anxiety was due to the fact that I was to meet with the radiation oncologist about whole brain radiation. I showed her some info I found. And while she agreed that there are docs who would argue against it until something new crops up, she's in the camp (since it seems my disease is controlled from the neck down), that would want to treat my brain more aggressively so that no more tumors crop up.

I am still on the fence with that decision. But she agreed that a follow-up MRI, to see if anything is there, is warranted. So, I have an MRI scheduled on Monday and then I will feel that I can make a more informed decision.

On the one hand, two of my right fingers and thumb are still numb and tingly. I am a bit wobbly on my feet, but there are explanations for why that is (post-surgery/medications/etc.).It could mean there is still some swelling on my brain, not necessarily tumor growth. An MRI will help us answer that.

As for the anxiety and sleep, the radiation oncologist thought I should have Ativan, but I told her that I still had a bottle of Valium (that I hardly took) from a couple of days prior to finding the brain tumors. She encouraged me to try that last night, so I did. I figured that I got maybe 7 hours of sleep last night and I must say I do feel less anxious - at least, my shoulders aren't lifting as much as they did and my right arm/shoulder are less tense and painful.

I am also taking Tylenol regularly, which also helps.

As for the surgery, about 85% of the skin graft on the chest wound succeeded. It is draining fluids, still. But no sign of infection. There is quite a depression there - about the size of an egg. On the boob side, it's maybe 3/4 of an inch deep and on the breast bone side, maybe 1/2 inch. In other words, a big crater in my chest, but preferable to a draining tumor.

The donor site is nearly healed. The surgeon said that he's never seen anyone heal that quickly. He attributed that to my immune system, but it could also be the antibiotic ointment I used on it daily.

As for the lymphedema on my left arm, the area nearest my armpit has gotten bigger. The physical therapist also noted that it was red and thought there might be an infection brewing. So, I talked the surgeon into prescribing IV antibiotics for when I get my Herceptin treatment tomorrow. IV antibiotics will be easier on my digestive system.

I also saw my acupuncturist, who saw my anxiety and also noted the fact that my digestive system is still not right or healed. So, my treatment was based around that - she said my liver is carrying a lot of heat, which means to me that it's processing a lot of the medications I had in my system. So, to keep things simple, I take the anti-nausea Chinese pills and will take that until I feel my digestive system is more healed.

So, I am better today. (I didn't post yesterday since I felt so yucky.) Still a bit wobbly on my feet, but I am taking daily walks down the hill from my appointments (about a mile). My stomach is still cramping after I eat. But I have the next couple of weeks to heal from all the meds before starting anything more aggressive (if I do).

I have Herceptin tomorrow and Zometa, plus the antibiotic.

Yet Another Wound Update and Nausea Update

There's some continued good news on that front. The armpit area, where we are trying to grow skin, went from a trapezoidal area of 3.5 by 1.5cm at one end and 1.0 at the other end to 2.3 by 1.3 at one end and 0.8 cm at the other.

The one open area (that opened up prior to surgery) went from 0.6 x 0.4 cm to 0.5 x 0.3 cm.

The other two wounds (the chest sutures and the skin graft donor site) have no sign of infection.

There is a hard lump that appeared, on the arm side opposite the open area where we're growing skin. The wound care nurse said that it looked like scar tissue. The fact that the lymphedema (on the upper arm, nearest the armpit) seems more swollen made her think that this area of scar tissue arose because of increased swelling.

Increased swelling is due to how I'm wrapping my arm, but also because of the increased heat.

I also feel less nauseous. I walked home from wound care today (maybe under a mile). I'm doing more and feeling better. I feel more like my own self. Thank goodness. I hate nausea.

Wound Update

I saw my wound care nurse yesterday. The leg graft is healing. No sign of infection in the chest wound and the drainage is fairly minimal.

The big wound in the armpit went from a trapezoidal size of 4cm long by 2cm to 1cm wide to 3.5cm long to 1.5 to 1cm wide.

The four areas that were open are now healing. Three are almost healed. The fourth was about the same size (0.6 x 0.4cm). The fact that they are healing is probably due to the antibiotic, indicating that there was an infection (rather than cancer in the skin) in there of some sort. Being on steroids affected my immune system and delayed healing.

I am hopeful that within two weeks, I won't have any open wounds. I won't hold my breath, but things are improving, slowly but surely.

Oh god. Nausea

I still had nausea through the evening and night and this morning. I've been taking zofran pretty regularly and mom and dad got ginger root at the store yesterday and I've had ginger tea twice - a friend of mine sent me some recipes for it - of a way to prepare it. My acupuncture also suggested it, so I figure it was time I tried it. I think it's helping.

But the only medication I had last night was the anti-seizure med - no Tylenol, no Tykerb, no antibiotic. I did take the antibiotic this morning, but will ask the surgeon if there is a gentler one I can be on.

I think since the nausea is continuing that there must be some swelling in my brain. The docs want me to take a steroid for it, but steroids delay healing.

The antibiotic is healing the wounds - and keeping infection at bay - but it gives me nausea.

Tykerb can help protect my brain, but may contribute to the nausea.

I also haven't taken my Chinese herbs last night or today.

My acupuncturist said that I am probably still detoxifying from all the chemicals in my system from the surgeries plus the meds I take. So, my system is overloaded.

I feel like I'm damned if I do and damned if I don't. None of the choices (Tykerb can help prevent brain mets, but can cause nausea; Tylenol helps with pain in my shoulder but probably doesn't help the nausea; some of my Chinese herbs can help my immune system and fight cancer, but I'm afraid I'm giving my body too much so I'm not taking them; antibiotics appear to be helping heal the wounds in my armpit but gives me nausea; WBR can kill any stray cancer cells in my brain but can lead to swelling and nausea) are appetizing (pun intended).

I don't know what to do.

I sorta feel like I need to detoxify my body right now - which to me means to take the minimal amount of chemicals and get over the nausea and get the surgical drugs out of my system - before I do anything else. Then begin adding things again next week, after I'm off the antibiotics. The only two things I don't want to take away are the anti-seizure medication and the antibiotic.

There's a part of me - because of how I've reacted to the WBR with nausea (which may be due ot the meds but maybe not) - is to refuse WBR for yet a few more weeks. I know that increases my chances that a tumor can start growing but I also think that once I get off the antibiotic, I can take Tykerb. I was doing okay with the anti-seizure med, the Tykerb, and Tylenol.

What to do?

Updates on Wounds and Medical Appointments This Week

Let's start with the wounds in the armpit: I think the skin has continued to grow in (slowly but surely) in the main area. There are four other spots that aren't healing but aren't growing either. I suspect that there's cancer, but now that we've lessened the tumor load in my body, maybe my immune system and the other systemic treatments (Tykerb/Herceptin) can begin shrinking them.

The chest wound, where the tumor was removed, is draining fluids. But already, since Thursday, the drainage is less. I am wearing a JP drain, but expect to get that removed on Wednesday as there was only 15ml of drainage in 14 hours.

In place of the chest tumor, there are incisions - and stitches - about 2-3 inches long at the top and at the bottom where the surgeon was able to close the opening. He also put in a "stent" which I thought meant something like a "shunt" - a metal tube or something. But what it is is a wad of gauze that is pressing down on the wire mesh and the skin graft in the hopes that the skin graft takes. He expects that about 80% of the graft will take. The stent won't be removed until July 5th or so. I am on antibiotics for 10 days so hopefully an infection won't set in. Already the drainage there is less although there had been a lot of blood and fluid there for a few days. I changed it last night and I think I found the right combination of getting the right amount of gauze/ABD sponges to catch the drainage and keeping the areal coverage of it relatively small. I already think it sticks out less then uniboob, so it's a huge huge improvement.

On occasion, my right thigh, where he took the skin graft, hurts, but that's only when I've been immobile for awhile. If I keep moving, it stops bothering me. I should change that dressing as it is already sticking. I might get brave enough later to replace it with the transparent suresite dressing - which doesn't stick when there's fluid.

As for the lymphedema in my left arm - I don't think it's getting any better. It's hard to wrap up high enough on the left arm to shrink the largest fluid retention - nearest the armpit - and sometimes, I don't wrap tight enough. I am already tired of the damn thing, but it is what it is.

I have 13 medical appointments this coming week. Five for radiation, two with wound care, two with physical therapy, one with the surgeon, an appointment for Eddie, one with acupuncture, and then an infusion with Herceptin/Zometa.

But given all of that, I feel really hopeful. Even my surgeon yesterday said that I am making him a believer in alternative and immunotherapies. As far as we know all the gross/large tumors are out of my body. Now on to the business of keeping anything else from growing.

Thank you all again for your continued love and support!

UPDATE: Much better now

I called my surgeon's office and alerted them about the fact that the chest tumor is bleeding, so I went in to the lab and had blood drawn - and a "type and cross", which needs to be done if you need a transfusion. They double-check your blood type and other antibodies so they can match your blood type to their available blood. So, now I feel better that if I need blood during surgery, they have the necessary information to do so.

I also had a long conversation with the pre-op nurse today and asked about how to clean with Hibiclens. I feel more prepared now about what to do prior to surgery on Thursday.

I also talked to a nurse at my oncologist's office about the diarrhea since it was worse today and extended into the afternoon. I am now taking Imodium and am on a diet that is only easily digestible foods - no fresh fruit and veggies, etc.

I saw the physical therapist, too, today. My arm is about the same as it was the day after I started the compression wrap. I have a couple new strategies for wrapping. She did note, however, that the area at the top and under the arm (nearest the armpit) was 2cm bigger and seemed warm. That indicates inflammation, which might either be my immune system fighting an infection - or like the "inflammatory flare" I had after the Herminator cell infusion last year. She did say that if it was an infection there, I'd feel more pain, which I don't. So, we're just going to watch it.

I should also note that the area around the chest tumor is more red - and some spots are darker. The physical therapist also saw that it seemed redder. So, there might be inflammation there as well. I noted that it also seems bigger so I tend to think it's acting like the left armpit, which became more inflamed after the Herminator infusion.

I think both signs of inflammation are my body's attempt to fight the cancer with whatever Herminator cells I might have. I think the Tykerb is causing the inflammation. And, that's a good thing. I guess I think that it's my immune system fighting the cancer rather than a bacterial infection because I don't have a fever or feel otherwise sick.

I am feeling very tired even though I got about 7 hours sleep. Probably a combination of lack of sleep over the past week in combination with the diarrhea - lots of diarrhea can lead to fatigue.

I am drinking lots of fluids, though. I don't want to get dehydrated on top of everything else!

One of my grad research assistants stopped by today and brought lunch. We thought we might go out to lunch but with my reluctance to go out in public, she agreed to come over. I gave her some work to do for me.

I made my phone calls except that I couldn't get through to the disability insurance company "We apologize for the wait. We are currently experiencing a high volume of calls." blah blah blah. I was on hold with them twice for 15-20 min before I gave up.

I am hoping I get a good night's sleep tonight and that the Imodium helps because I really want to take Eddie and his cousin to a water park that just opened up north of here. I think it's important to take him out and about. My brother will go with me to help drive and to go into the water with the kids as I am unable to because of the wounds.

I feel much better now. Did things to relieve my anxiety and worry; I have my grad student working on some stuff for me (Thanks, R.!); am doing something about the diarrhea. Thank you for letting me complain. I feel better now then I did. And, thanks, R., for bringing lunch by!

Going Out In Public

I have found myself very reluctant to go out in public in the past week or so. I've thought about this in the last day or so and I think I know why.

The neurosurgeon shaved my head last week - to even out my hair - so I'm back to wearing hats.

I also wear a compression sleeve on my left arm.

Then, there's unicorn boob (chest tumor) that sticks out about 1 to 1.5 inches near the center of my chest - it sticks out father than the TRAM flap.

And, then, there's the diarrhea that seems worse in the morning. As I type, my fingers are a bit shaky.

Finally, I have been preoccupied since Friday about skin mets - I think that the areas that aren't healing have cancer cells in them preventing growth. So, I've been doing a little research trying to figure out what I can do post WBR (whole brain radiation) to get that under control as I want the wounds to heal.

I am really sick and tired of wounds. I have two of them right now.

For some reason, the compression wrap seems to bring the most questions from strangers. With my friends and colleagues, I just have to say, "I'm wearing this so that I can decrease the lyphedema". But with strangers, it invites more questions about why I have lymphedema. On Friday, the clerk at Freddies then went on to tell about her cancer scare and how she's got to go in for a biopsy soon - it wasn't breast, but another organ. I don't want to talk about or comfort someone else right now. I'm too preoccupied about what's going to have to happen next.

My dad has told me twice not to worry too much into the future - just get through this week's surgery and the WBR beginning next week. But I sorta feel like I need to look up options so I can bring them to Dr. K on Wednesday. I want to be prepared for the next leg.

I am so preoccupied that I haven't felt like working on mosaics or the blogger analysis. I am also worried about getting another infection on the chest tumor site after surgery - I am to shower with Hibiclens Wed evening and Thurs morning, but I can't shower because of the wound in my armpit. So, I need to talk to a nurse about how to adequately clean (because while I showered the night before the April 1 surgery - or that morning, I only did it once and I don't recall really using that stuff very much, so I'm afraid that's why I ended up with such a huge infection afterwards). The chest tumor also bleeds when I change the dressing, so I'm worried about needing a transfusion.

So, I guess I'm full of anxiety and worry. I will call the surgeon today about making sure they are prepared for a transfusion. I will call the admitting nurse about showering with Hibiclens. I need to call Disability and see what is going on with my claim, I need to change an appointment and preregister for the surgery.

Once I make all these phone calls, I hope I can settle down and do something more positive and productive.

Oh, one thing I found about the skin mets - I will probably have to do a taxane. I found a bulletin board where someone posted a Japanese study that included a drug that I've not heard of but is an estrogen blocker with paclitaxel. I think there were only four treatments of the latter and 120 days of pills with the former (called toremedine, I think), but in the case they treated, the skin mets disappeared and stayed away from the woman for two years as of the writing of the article.

Writing about it all helps. I don't mind visitors coming to visit me at home. I just don't feel like going out in public and talking to complete strangers about what's going on with me. Maybe once unicorn boob is removed, I'll feel more up to doing something outside the home.

Wound Update and Reading Outside

When I changed the dressing on the chest tumor last night, it seems wider, not really longer. But it seems that there is more necrotic tissue on the top layer and it was bleeding some.

I can't wait to be rid of the damn thing. I'm not sure if my concoction is helping or hurting.

As for the area where we're trying to grow skin - it's a bit smaller from Tuesday - about 4x2cm where it was 4x2.5cm on Tuesday. So, some improvement.

The three little areas where there is either an infection and/or cancer - they haven't healed more but they also aren't any larger - they are 1cm in circumference. The wound care nurse put silver nitrate on them again. If it is cancer, let's hope Tykerb can get to those spots and kill the cancer so the damn areas can heal.

Since I didn't sleep as long as I wanted Thursday night, I was pretty tired Friday afternoon. While Eddie played in the backyard, I read a book - "Water for Elephants" - loaned to me by a colleague. I was able to finish the book yesterday evening. It was a good book - seemed a short read, though. As an anthropologist, I enjoyed the inside view of circus life circa 1931. I spent a lazy evening resting and ended up with maybe 7 hours sleep last night.

It's cloudy and cool at the moment, which doesn't bode well for our yard work party. Let's hope it warms up! Three different wweather sites call for rain most of the day, showers this morning with sun breaks this afternoon, and the third, cloudy through the morning and early afternoon with showers starting again about mid-afternoon. Who knows? Wish us luck!

Wound Update, Compression Wrap, and Medication Side Effects

Today, I first saw the wound care nurse. The largest open area in my armpit is 4x2.5cm. But a few days ago, near the incision line in back, it started draining again. It had developed a "postule". The wound care nurse feels that this may be a minor staph infection, so she put silver on it and we covered it with the antimicrobial silver gauze.

The two smaller areas that do not have skin near the bottom of the wound have developed red raised areas. It may be infected, too. But it may be cancerous lesions forming. She doesn't know for sure. But in case it was hypergranulation, she put silver nitrate on the two areas (which kills the tissue). I think she also put some silver nitrate on the postule. We will monitor the area and sew what happens over the next few days.

I then saw the physical therapist and I caught her up on all that happened to me in the last couple of months. She put a compression wrap on my left arm, extending from the base of my finger to my shoulder. I need to keep it on for at least 22 hours a day to try to get the swelling down. It was a good 5cm or 2 inches bigger than it was last year. It's just a little bit uncomfortable around my elbow.

The interesting thing the physical therapist told me was that lymphedema is protein-rich fluid, that encourages bacterial infections. So, it's highly likely that the areas that are raised and the postule are little bacterial infections. I will tell the wound care nurse that on Friday. That made me feel a little bit better.

I was a little shaky and jittery all day. It's a side effect of the anti-seizure medication I am on. But I think it was complicated by the two Benadryl I took in the middle of the night last night which can "cause hyperactivity in children". So, I don't think I will take that any more. I will ask my neurosurgeon tomorrow about drug interactions.

My fingers are still numb and now my ring finger and my left thumb are a little numb as well. I will talk to the neurosurgeon about this. I noticed in April that my ears had hardly any ear wax. I had some last week, but not this week. This makes me wonder if there is something new growing in my brain. I also got the call today that my Tykerb will be delivered tomorrow, so Thursday, I will start taking it and hope that it gets to where it needs to go in the brain. Nip whatever it is in the bud. I also wonder if I could decrease the anti-seizure medication dose since I seem to be getting some of the less desirable symptoms, like some lack of coordination. But I will also ask him what symptoms I should be aware of should more tumors develop.

I also see the general surgeon tomorrow afternoon to see about removing the chest tumor. And between the neurosurgeon visit and the general surgeon, I will have two visits - L, a colleague from Fairbanks, and A. who is also bringing a meal.

So, I was a little worried today, but I was also able to do some things with Eddie at school - he had a swimming party this afternoon and I drove him and some of his classmates. Then this evening was his musical. He was the producer. I feel a little less worried because I think my jitteriness (if that's a word) was caused by the Benadryl.

I hope to get a better night's sleep tonight. I got about 5 1/2 hours last night. I will take melatonin first and then Ambien if I wake up in the middle of the night. That's what I did on Sunday night and I had a good day on Monday. I will keep you all posted - and keep putting out good energy that there is no disease progression already.

Wow - Things Happened Fast

I saw the neurosurgeon today to take out the staples. One thing I asked was about how soon I might be able to have surgery to take the tumor off my chest and what might delay that.

The answer is that radiation delays it.

Then he said that I do have another option to radiation - another surgery to remove that second tumor that is near the top center of my head.

Wow. I didn't see that coming. I wondered if it was operable and why no one ever mentioned it. I guess I didn't ask the right people or even think to ask.

He can do the surgery next week.

I am going to go ahead and get rid of the damn thing. Then I know it's gone. With radiation, we'd have to wait 2+ months to see if it worked. Surgery would let me know almost immediately if they got it all. Then radiation would be a precaution to prevent more growth rather than a necessity to kill what's there.

Wow. My head is still spinning.

But if I get it done next week, then we can contemplate next steps that much sooner, rather than "waiting and seeing". I like that idea. I also get off the steroids and anti-seizure meds sooner, which means I sleep and eat better. I can get back to "normal" sooner rather than later. Also, getting off steroids means wounds heal faster. I can probably get off steroids within a week after this surgery - otherwise, I was looking at another 6 weeks. I already feel better knowing that I will be getting better rest sooner rather than later.

Surgery is scheduled for Wednesday June 1. That will be surgery #3 in two months - April 1, May 20, and June 1. I will be home next Friday, June 3.

Wow.

In the meantime, the wound in my armpit is slowly healing. In fact the largest area that needs skin to grow was 6x8cm (about) on Tuesday and seems to be about 5x4cm today. I even looked at it for the first time in a long time and wasn't traumatized. I think I can even begin changing my own dressing. It's been a long 8 weeks since that surgery happened.

As for the tumor on my chest, I made a paste or concoction using turmeric, my five mushroom blend herb (3 with anticancer properties), and melatonin. I've put it on the last two mornings. When I changed the dressing this morning, the area seemed better. Healthier. Not so raw. Let's hope the anticancer properties in the concoction start shrinking that lump as chemo will have difficulty getting to that area from below because of how badly scarred that tissue is from surgery and radiation. Maybe this topical treatment will take care of things while we take care of the brain issue.

Wow.

Hmmm . . . Kinda Nice to be on Disability!

The last couple of days, the reality of not having to work is starting to set in. I'm starting to think about what I can do. I don't feel much like reading and I've sorta had my fill of TV the last couple of months. So, my head is turning to home projects.

I've had some shadow boxes that I wanted to do mosaics in. So, I might start contemplating potential designs today. Dad has some plans for the yard and I feel like I can spare some brain cells to helping him think that through. And, since I've spent so much time at home and/or in hospitals lately, I haven't been eating out at lunch so have saved up some money. Some of that needs to be set aside for household expenses as I ran out of sick leave and am on disability but I think I will have enough to get stuff for the yard.

I also have a plan for the tumor in my chest. That area has been radiated twice and there's been surgery so the blood and lymph system feeding the tissue is compromised. That means that chemo and the Chinese herbs I take can't make their way very efficiently (or apparently at all) to the area where the tumor is to kill the cancer cells. I decided last night the thing to do was to apply a topical ointment that could kill the cancer and heal the skin. (Cancer retards healing.) So, my plan is to take my Five Mushroom blend (three of the mushrooms have anti-cancer properties) and turmeric (effective against skin cancers) and make a salve or ointment using aloe vera gel. I will soak some drain sponges in the concoction and apply it new every day. That way, I will feel like I'm doing SOMETHING to take care of that damn tumor. We will see what happens and I will keep you posted.

My right arm is less shaky and weak today. That's a good sign. I also feel less shaky on my feet. So I think I'm on the mend - the steroids are apparently helping with the swelling. They just give me some tummy issues but I think it's being taken care of with the acid reducer tabs.

All in all, things are good. It's nice not to have to worry about work!

Whole Brain Radiation

So, today, we figured out the plan of action for the next few weeks. As you remember, I do still have a 2cm tumor near the front of the left side of my skull. Some of the swelling may be causing me to have some weakness on my right hand and arm - they feel weak and a bit shaky. I am still shaky on my feet but that may dissipate as I recover more from surgery.

I get the staples out of the incision on Friday. I will start (or restart) whole brain radiation beginning May 31, the day after Memorial Day. That should remove the 2cm tumor in my skull. I may experience more swelling (which would cause headaches and nausea) or it may actually decrease as the tumor shrinks and the swelling goes down. It all depends on how things go. I hope that I get through the radiation treatments with nothing more than fatigue.

Because I only had one radiation treatment, the radiation oncologist wants me to have 14 more sessions of daily radiation. That starts May 31 and will go to June 17. So, it looks like the next month, I will be resting, recovering from surgery and radiation, and just not doing much overall.

The wound in my armpit is healing and getting smaller. There isn't much drainage anymore, but will still have biweekly dressing changes for the next few weeks. Also, during surgery, the OR people did not protect the lump in my chest, so now the skin tissue there is degraded and draining a bit. I am not sure what we're going to do about tha damn thing, but I hope that Dr. F (the surgeon) can eventually take that lump off and patch over it with a skin graft.

I am always amazed that people keep telling me about my positive attitude. I guess I do work at cultivating one - part of my strategy is that I always figure there's someone else worse off than me. Yes, I have these brain tumors, but it looks like treatment will take care of those. I have the tumor on my chest, but we have a plan, of sorts, for that. Otherwise, it seems to me that the immunotherapy I had at UW last year is taking care of any advancement of cancer within my body. My liver and lungs are fine and I have sclerotic (i.e., scarred) lesions in my bone marrow, but not attached to my bones. The way I look at it is that I'm doing okay. I think there are things I can do to keep the cancer from coming back to my brain. We just need to get on a maintenance plan for the rest of my body. I fully expect to get through treatments and recover this summer and return to stregnth in the Fall. I'm not ready to kick the bucket yet.

I also think that my positive outlook is due to all of you out there praying for me, sending me positive energy and vibes and blessings. It buoys my spirits and keeps me smiling. Love to all of you!

Withdrawal Symptoms Suck

I am trying to wean myself off of Dilaudid, mostly because I don't really have much pain, only some muscles that keep wanting to tense up from my right shoulder blade, to my right shoulder, down my right arm, forearm, and hand, ending with tingling and numbness in the right hand.

The left surgical side hardly has any pain. So time to get off the Dilaudid. The nurse at Dr. F's (the local surgeon) feels that maybe I'm trying to do too much right now and maybe I shouldn't go off Dilaudid just yet. But I think it's time.

Since I started going to Dilaudid every 10-12 hours, I've had a headache. I also had a leg cramp in my lower right calf early Friday morning. I get hot flashes and woke up from one my cat naps last night sweating. I also got felt sick to my stomach after lunch - like right after it. We drove home from Portland and I felt sick the whole way. I came home and napped off and on for about an hour.

All but the headache are official symptoms of withdrawal, according to websites. But the plastic surgeon in Portland and the regular surgeon felt the headaches were Dilaudid withdrawal symptoms.

Dr. F's nurse suggested Valium to help with the right shoulder blade/shoulder pain. Then, a friend in Australia, V., also said Valium was used to help her wean from a pain medicine. So, I asked Dr. F and received a prescription for Valium last night. I just took the second dose. We'll see if it helps with the headache. It's okay if I don't move my head too fast. I am going to try to stay with Dilaudid every 12 hours for a day or two and then try to decrease it again.

In the meantime, I will make an appointment locally with my physical therapist about the lymphedema in the left arm. Dr. F wants to wait and see what happens with the lump on the breast bone for another couple of weeks, but if treatment doesn't shrink it, I will be looking at another surgery soon. Also, Dr. F will take out the catheter/port in my right arm since I don't really need it.

Dr. T at OHSU felt that the wound might have skin over it in another two weeks. The hypergranaulation, which occurs in several spots in the area, is causing the healing to go slower, but it's going. It even looks less red to me. I see the wound care nurse again this afternoon.

Today, I've got class and I will also meet with a candidate - right after lunch and for dinner. But I might have to skip dinner depending on how I feel.

Have a good day everyone.

Visits with Doctors

On Monday, I saw the plastic surgeon. I asked her why I still had an open wound and the answer was that the bacterial infection (bacterial colony, really) wiped out a lot of the skin graft.

The latisimus flap (the muscle near your shoulder blade) did fill in the big hole created when they took out the cancerous mass. The skin graft was to cover the whole area, but the infection wiped it out.

Dr. T was pleased with the progress of the wound after the infection. Now the whole area is nice red granulated tissue. That tissue will eventually form skin - maybe in about two weeks - but it's going to stall out because the skin can't grow up the "wall" that formed near the back of the wound. Remember when I said that it looked like a ledge? The healthy flesh coming from my back toward my armpit all of a sudden dropped down a 1/2 inch. Well, in order for skin to grow up to that, we need to create a ramp or a slope going down to the granulated tissue, so she used silver nitrite (which is used to cauterize bleeding wounds) to kill some of the tissue at the edge, so it can create a slope that will allow the granulated tissue to grow skin up to that level. There was also an area in the middle of the wound of "hyper-granulation" that needs to be killed so skin can form there. So, we're still in the process of growing tissue. At least I now have an estimate to when I no longer have an open wound. I can handle a couple of weeks. I had a vague idea that it might be months. I'm relieved about that.

Then, yesterday, I saw Dr. K, my oncologist. The assistant noted that it looked like I lost weight. I think I have since surgery as my clothes are looser. I ended up weighing 135 pounds, about 8 pounds less than I did prior to surgery. That was a surprise because when I was in the hospital, I weighed 142. Anyway, I figure I have lost the implant (good for a pound or two), the big mass under my armpit (good for another pound or two), plus I drained a lot of fluid (the whole armpit had edema prior to surgery). I told the nurse that my appetite has been great so I don't think they are too concerned.

I talked to Dr. K about the tumor near my breastbone - I have watched it grow a little bit in the last few weeks since surgery. It seems to want to grow up and out of my skin and now has a little purplish bruise on the skin above it. Also, about an inch up my arm from the port, it seems that part of the catheter comes up to the skin before going down again. I wondered if the port needed to be taken out. He thought that the catheter was okay and also decided that I should start Herceptin again to try to stem the growth of the breastbone tumor. I haven't had chemo for about 7 weeks, so I guess it's time. Eventually, that tumor may be taken out surgically. But I don't feel like thinking about that any time soon. I wonder if I should stat making a poultice of turmeric and aloe vera gel and putting it on that tumor to see if a topical application would help stem the growth? It certainly wouldn't hurt, I guess.

In the meantime, I made it through class yesterday. I asked the students where things stood with their projects and I helped talk them through their literature review. I was pretty tired afterwards - listening for two hours and trying to concentrate on what they were doing. Then I came home, ate lunch, went to wound care, then picked up Eddie, ran an errand, and then saw Dr. K. Whew. I laid down after dinner and I dozed a couple of times through the evening. I didn't get to sleep until late, though. I ran over to the MU for a snack before class and my legs felt shaky afterwards.

I made it through two busy days and didn't feel too tired. Yay! I do try to take it easy when I can. Today, I only have wound care. I might also run an errand or two. Otherwise, I need to grade papers and do some paperwork. My plan is to take Ed to school, come home and rest until I go to wound care, then go back to my office to take care of papers.

Sunny Days and Energy

On Saturday, it was beautiful here in the Willamette Valley, especially through the early afternoon. It was sunny and nearly 70 degrees out.

I had a sponge bath (no showers yet while the wound in the armpit still heals), then went Easter shopping for Ed and found a couple of button down shirts for me. Then my folks and Eddie and I went to lunch. Then, I took myself to urgent care for a dressing change. I then took Eddie to the park. I rested on the bench while he ran around with a former classmate and a new friend. Then, in the evening, he went to Nerf Gun Night. I dropped him off at 5:30pm and picked him up at 8:30pm.

A busy, almost normal day. I rested between activities.

But yesterday, it was cloudy and rainy. I was lazy. I think the only thing I did was go to urgent care. We watched a couple of movies on Netflix (Salt and one with Julia Stiles called Cry of the Owl which was strange and weird). My brother Kevy came over for dinner with me and my folks. Mom made turkey and other Thanksgiving goodies. It was good! Thanks, mom! (Scotty has been in Albuquerque visiting a friend. Ed went to his dad's.)

The doctor at urgent care, who changed my dressing both days, thought that the wound looked better on Sunday and also thought there may have been less drainage (i.e., less bleeding).

The wound, the last few days, has less serous drainage. Instead, it's bleeding more. I'm not sure if that's a good sign. I'll find out today as I have an appointment with the plastic surgeon. I plan to talk to her about why I wasn't prepared by them for still having an open wound afterwards. I will also tell them how long the wound had the infection - until last Tuesday or 2 1/2 weeks.

I also took the transparent film dressing off the skin graft donor site on my thigh. I was nervous as I thought it would stick, but fortunately, while I had to tug in a couple of places, it didn't stick or hurt. I am able to wear pants with the fabric rubbing on the area without it really bothering me.

So, more progress. I think I will be able to teach tomorrow. Finally!

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 . . .

Another Infection?

Yesterday, Dr. F removed one of the drains. I cried a lot, especially to his nurse, mostly because I saw the area under my armpit earlier that morning and saw the defect again. But the drain came out easily.

I then saw the wound care nurse - not my regular one - and she put a dressing on that supposedly wouldn't stick on the donor site on my leg. She changed the dressing under my armpit.

Today, I saw her again (my regular nurse is out of town). We found that the dressing she used did indeed stick some - but we irrigated it well to take off the dressing. It seems that where it drained, it crystallized the silicone on the dressing and that crystallized area stuck between the dressing and my skin. Ouch.

Also, this morning, I noticed that my drainage in the drain tube was cloudier. I showed it to the nurse and she felt that maybe that represented an infection deeper in the wound.

Great.

So, I will call Dr. F again so he can culture the fluid and/or the area in my armpit to check for infection. I finish my course of antibiotics tomorrow morning - and it looks like I'll have to continue it.

I'm trying not to think things like MRSA or any other major bug. I hope that's not the case. I'm hoping it's just evidence of necrotic tissue.

Sigh. I will let you know when I know.

Continued Improvement - Part 2

I guess I can say that I am steadily improving. I spent most of yesterday in the front room sitting in a chair (as opposed to on my bed), because various muscles were getting tired of being on the bed. But I found I could do it, so that's a good thing.

I went to Urgent Care yesterday so they could change the dressing under my arm. I could tell that this was not something neither the doctor nor the nurse had experience with, but they were very good at trying to help me - and compassionate, too.

I was able to change the dressing on my leg - the skin graft donor site. The wound care nurse, on Friday, covered the sensitive area with collagen and then just put a transparent plastic dressing over that. Then she covered the whole area in surgical pads and then we wrapped it in an ace bandage. It had leaked a bit on Friday night, so I changed the surgical pads and left the plastic over the sensitive area. The good news is that the plastic does not appear to be sticking to the wound, so less pain - and less time - will be used to change that dressing.

I will go to Urgent Care again this afternoon to have them change the dressing under my arm. I should also say that other than a bit of pseudomoniasis where the JP drains are, the rest of the infection on the skin appears to be gone. I do, however, still have an infection inside. I've been running a low-grade fever off and on. I am still on antibiotics until Wed. I hope the infection clears by then.

I am noticing that I need less of the dilaudid but really need the Tylenol. On Friday, I took my dose of Tylenol a couple of hours early, so then in order not to exceed my 4,000mg/day limit, I had to wait longer than six hours to get the next dose - I ended up taking a partial dose earlier and than another partial dose later and I found myself in more pain. On the other hand, yesterday, after I got back on schedule with the Tylenol, I found I could stretch the time between Dilaudid doses and not really feel anything. I could take 2-4mg every 3 hours. Through the evening and night last night, I stretched it to four hours - and I'm going to try five today. I want to start weaning myself from Dilaudid since it can be very physically addicting.

One of the mom's from Eddie's class brought over dinner yesterday - a delicious penne pasta with salad, garlic bread, and no-bake cookies. Thank you, M! An old friend of mine also sent an American Express Gift Card that I will use for something fun - thank you, P.! While I was in the hospital, one of my grad students brought over dinner for my family - thank you, J.! And, another grad student who works for me will bring over a meal tonight for us to use tomorrow. Thank you, R.! My colleagues also sent me flowers while in the hospital, which were very pretty and fragrant. The nurses said they liked coming into my room because it smelled a lot better than others. Another mom from Eddie's class took Eddie for a playmate last week and another one will take Eddie today, I think. I am grateful to all of you for your help.

So, yes, some improvement. And, that's a good thing.