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.

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.

Already Home

The neurosurgeon let me go home today, for which I am very happy! I am tired, though, and can only hope I sleep. I will gradually wean myself off the steroids. Thank goodness. My stay in the ICU was pleasant.

I only have some numbness in the first two fingers of my right hand. It should go away over the next week or so. Otherwise, I already feel steadier on my feet. I will take it easy the next few days, though.

I also have to wear this turban bandage on my head. I am wearing a handkerchief over it now, as there is a spot over the crown that is not as thick and has some blood. I might put some more gauze over it and tape and then color the outside of the bandage for the heck of it. I mean, if I need to wear it for a week, I might as well, eh?

Eddie was very happy when I rode with dad to pick him up from school. I think he's glad I am home. Now, just to spend the next weeks resting and regaining my strength. The nurse practitioner associated with Dr. K's practice also came to see me. Dr. K knows I had surgery. She asked how quickly I would be released for radiation and I told her that I wanted to wait until until later this summer, that I really wanted to gain my strength back. In the meantime, I wanted to start Tykerb for it's protective effect on my brain. H. said that she would let Dr. K know and he would probably call me this weekend. H. understood my reasons for taking a break of sorts.

Glad to be home!

Now in ICU

I had the surgery yesterday and am now recovering nicely in the ICU. The nurses are great and am enjoying visiting with them. Mavis the nurse says that it is nice to have a stable and aware patient to visit with!

I will head to a regular room later today as I don't need the constant monitoring.

My is scalp is tender as then tumor was removed corm near then crown of my head. I am back on steroids, so am back to constantly eating crackers. My tummy just gets bubbly - not nauseous - so the crackers calm it and the soda lets me burp.

The nurse said that Inshould recover more quickly this surgery since I am already farther along than last surgery. I took a walk down the hall.

I forgot to askmthe surgeon if he got it all. I assume so as he said the surgery went well. Also want to ask him how long them swelling typically lasts after surgeries of the brain. Just had a CT scan. Guess I will news of that later.

I guess I get to go home tomorrow. YAY!

Surgery Tomorrow and Other News of Today

I was actually quite busy today. I went into my office to pick up some files - I needed to contact some people about various things I said I would do this summer and either notify them I would be late or I would just not do them. But with over 3,000 emails in my inbox and not remembering when or who I was in contact with, I needed my hard copy sheets so I could follow up with them.

I also made a few phone calls about things like summer salary, disability, FMLA, insurance, etc. I need to figure out what my options are, how much to save, etc. I have a post about that, so I won't go into it here.

I also had to have my blood drawn and go see the wound care nurse. I forgot to mention that there are two smaller areas where the skin is almost all the way grown over near the bottom. In other words, almost all healed. The other larger area, up under the pit, is now about 6x3.5cm (she thought it was 5x4cm last week, but it's in an area that's hard to measure; seven days ago, it was 8x6cm. So, it's growing in nicely. It's not draining as much so less dressings. Maybe another 2-3 weeks.

I went with dad to pick Ed up from school and we ran an errand before we came home.

My colleague, M, and her husband and daughter stopped by and brought dinner and visited. It was a good visit. Thanks, M, for dinner!

I didn't take a steroid today. I took one yesterday and felt like my heart was racy and I was shaky all day. Yuck! I hardly have any numbness in my fingers, so I figure that's a good sign that there isn't much swelling. No head or nausea, either. I'll let the surgeon know that I didn't take steroids . . . I don't think it will make much of a difference. I hope that I won't have to take it afterwards, but if I do, maybe I can talk them into a smaller dose.

It seems a bit surreal to me that I head to surgery in less than 12 hours. I mean, they're opening up my head. I have reminded myself that the surgeon has already done this to me once and I was okay. This surgery is less risky and will only be 2 hours rather than 3. So, I should be okay. The radiation oncologist was surprised that I was having another surgery - this whole idea about standard of care in situations of 2 or more tumors in the brain usually means that there are cancer cells running around all over in there, so the treatment is radiation. If there is just one tumor, then surgery and radiation. When I told her that the surgeon said that I was now in the latter category and wanted to do the surgery, she said that that wasn't maybe technically correct and then she asked if my own oncologist knew what I had decided. I told her he was on vacation and didn't know. I think she's a little surprised that I would just make a decision without consulting and talking to a few docs - I might've passed the idea by Dr. K but I knew he was on vacation. So, I made the best decision I could at the time. As far as I'm concerned, the sooner we can get the thing out, the better. Then I can get to healing elsewhere instead of waiting to see if radiation worked.

Thank goodness my family lives with me

About a year and a half ago, my folks and my brother moved in with me - for financial reasons.

We have worked out a system - I pay the bills (except groceries) and they take care of the house. They do the grocery shopping, cooking, cleaning, yard work. I mean, I make sure that my areas and Eddie's areas are clean but since they are here all the time, the housework kinda fell into their hands.

It's been nice not to have to worry about grocery shopping and all that. I had plenty of other things to do with work, my own appointments and Eddie's activities. I feel very fortunate.

But this morning, I realized just how unable I am to take care of myself. I mean, I am able to wash up and wander around the house and get my own food or drink.

But I am completely unable to shop or drive or run errands, pick up or take Eddie to school. At the moment, I am homebound.

It occurred to me that other people would not have this kind of live-in help that I do. I can't even imagine how difficult it would be to have to ask for help all the time. There is something about how easier it is to ask family for help. AT least, in my case. People that I know and can talk are giving me assistance.

Last night, for instance, I decided to get a prescription sleep pill. I was able to ask dad to run to the pharmacy and I had the prescription in less than an hour. Dad is also driving me to my appointments. Scotty took Eddie to Wacky Bounce yesterday.

Thank goodness for family! Thank you, mom, dad, and Scotty. It helps tremendously!

It also occurred to me that my recoveries from these surgeries are gonna take awhile. I am now about 10 days post-surgery and can't fend for myself. I have another surgery on Wednesday and I think that I can expect at least a couple more weeks of not fending for myself afterwards. I feel a bit weak standing and walking still. This morning, I woke up and my middle finger was more numb, so I took a steroid pill. Didn't take any yesterday, but I'll take one today and see how things go. I hope after this next surgery, I won't have the numbness and unsteadiness to deal with. And, I hope I can sleep when I come home. I think my recovery will go faster if I can.

And, so it goes. I am trying to be productive - but it's things like balancing the checkbook, paying bills, etc.

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.

Quic news

Remember the nausea and vomiting I thought was from Dilaudid? Turns out it was from 2 brain tumors. I have a 2cm one near the top of my head and another one that was removed this morning. I think it was also 2cm, but it caused a 4cm cyst to clog the vetricles. They started who,e brain radiation but the neurosurgeon caught the clog and cyst.

I am doing okay. The steroids make me euphoric - am feeling a little silly and would probably feel sillier if there wasn't News of brain tumors.

I Amin the hospital for q few no ore days. Hard to type with these damn linger fingernails! Once I get them cut, I will write a longer post!