Not much new

This week, I have had a lot of appointments - wound care, acupuncture,physical therapy, therapy, and home visits with two of Eddie's middle school teachers.

The hone visits went well. It will be hard forEddie the first month or so, but he eventually get the hang of it.

The arm radiation wound is leaking a lot, but part of that may be due to the fact that physical therapy is working to move the lymph fluid upmyarm. If it drains out, that is fib with me. She is also streching my right arm and I started some strength training. I think that is why my right arm hurt more yesterday.

Constipation is an ongoing problem, but my acupuncturist, Brodie, gave me some more herbs that will helpfully help.

I think I have made the decision. To go with COBRA until the end of the year. Then I will move to OMIP(Oregon Medical Insurance Pool). OMIP doesn't cover acupuncture and has a $1500 deductible on top of the premium, so it ends up being a few hundred more than just paying COBRA and getting reimbursed for acupuncture. Acupuncture is very important to me and would like to keep insurance for a few more months to get me over my current pain/constipation/energy hump.

Hope everyone is well!

Haven't fallen off the face of the earth

I have been busy the last couple of days. Went to Eddie's swim lesson, then lunch with friends, then two appointments. Overdid it in the heat.

Today, I had an eye appointment and the doctor kindly changed out my contacts for me since my fingers are shaky and numb. Offered to do it again next month if I need it.

Then I had a nice long visit with one of my oldest friends, Paula. We have known each other 25 years. Her visit buoyed my spirits. She took me to my appointment, too.

It got too hot today, so dad and Scott will put our air conditioners in tomorrow as I can't survive the weekend in that kind of heat.

Still trying to find a balance with the new fentanyl patch dose, dilaudid, and constipation. Haven't hit the right balance yet.

Lymphedema in my arm is worse in the heat.

Two more arm radiation appointments. I think I am getting more energy, but it is slow work.I have much to be thankful for, including a wonderful care team, friends, family, and colleagues. Thank you everyone!

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!

A new symptom

After a weekend of rest from radiation, I hardly have any nausea. I do, however, have more pain in my necks and shoulders, mostly left but some right, too. So sometimes I take another dilaudid, which is in acceptable limits. It says to take one pill every 1 to 3 hours for pain. I usually take one every four hours. But last night, aboutn3am, I took dilaudid, the anti nausea med. And Tylenol and ended up with bloody urine since about 4:30am. Thisnhappened twice last week, too, so I stopped taking Ibuprofen (did take a dose yesterday afternoon). I hope it is just a combo of meds on. Nearly empty stomach, ut will talk to the nurse today, especially if the bleeding persists.

Only three more sessions of WBR. And 16 more of the arm. Hope the arm pain starts fading more later in the week. I think if I can get through this week, I should start going up on the energy front. Now, I eat, watch TV, rest, sleep or nap, and rest.

Eddie is home and I am glad for that. He stutters less here than with his dad and seems to enjoy just being his own company. My folks have said that they will try to take him on some outings a couple of times a week while I rest from the treatments.

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.

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.

I'm Okay

Hi everyone,

My nausea is slowly going away. My acupuncturist gave me some Chinese herbs yesterday that I take right before I eat that really help with any feelings of nauseousness. But it's still there, so in the middle of the night, I took a few of the tiny tea pills (that's the way she dispenses them). I also had soe diarrhea yesterday but took an Imodium and another Chinese herb mix that should help with that.

I am drinking about three cups of ginger tea. It's modified a bit from a recipe found by a friend of mine and from a recipe given to me by my acupuncturist. Here is what I do:

1) Take ginger root and grate about 1 tsp. full.
2) Steep grated ginger root in hot water for about 10 min.
3) Strain the ginger out of the hot steep ginger water.
4) Steep one bag each of decaf green and peppermint tea and steep for another 10 min.
5) Add a couple squirts of lemon juice.

By the time you add the lemon juice, the water is more warm and I drink that.

I drink that before a meal or before I take the antibiotic.

So, the nausea is dissipating, slowly. That could be due to the reduced dose of antibiotic (I know I'm taking a risk, but I also assume the dosage prescribed is for a white male of about 180 pounds, not a half-Eskimo of 135 pounds. Medication also affects me fairly strongly - I'm sensitive to it. So, I assume it's okay. My chest tumor site and sutures and the skin graft site show no sign of infection. And the other areas under my armpit continue to heal.

I am taking my anti-seizure medication religiously (twice a day) and not taking Tykerb.

I also canceled my Herceptin treatment for today.

I know I'm taking a risk by not taking Tykerb or Herceptin right now, but I guess in the name of detoxifying from the surgical drugs, the antibiotic, the targeted therapies Tykerb and Herceptin, and the anti-seizure medication, my liver needs a break. So, I'm giving it as much a chance as possible to detoxify.

I plan to begin Tykerb again next week, after I'm off the antibiotic. I assume by then that most of the surgical drugs (anesthesia, etc.) are out of my system. Tykerb will make me feel like I am getting that protective effect on my brain.

I also did have one session of whole brain radiation (WBR), that should help with any potentially growing brain mets.

I will have Herceptin again next week.

I see my radiation oncologist next Wed and ask her some questions about how much WBR increases my chances of no brain tumor growth. Also, I want to ask her how long after surgery do they schedule such treatments. I wonder about doing WBR now because I think the swelling also contributed to my nausea; if there is swelling, I have to go on steroids again and I think that the steroids really affected my digestive system and it hasn't recovered. (Another drug I am still detoxifying from.) But I figure the more I can detoxify, the more able I can tolerate WBR and potentially steroids. So, at this point, I won't start WBR (if I do it) until after we get back from our little vacation to the Coast in two weeks.

So, I know I'm taking risks, but I figure if I do WBR and Herceptin and Tykerb, the treatments are more effective if I am strong and my immune system is strong. At the moment, neither is strong. On WEdnesday, I teared up at home because I just felt like every time I start feeling a little bit better, I get beat back down from side effects.

My side effects right now are three open wounds, a messed up digestive system, and a tight right shoulder and arm, lymphedema in the left arm, and some lack of sleep. This week, I tend to sleep in one or two hour chunks and wake up frequently. I slept off and on from 10pm-4am, for instance, then 6-7am. If I can resolve half of those (and I'm hopeful those wounds heal in the next couple of weeks), then I will feel better about tackling the next step.

The good news is that while my right fingers (the pointer and middle fingers) of my right hand are still somewhat numb - they are sensitive to heat - and while I have nausea, I have not had the headaches. I think a headache might be one of the main symptoms of a brain tumor.

So, I am okay. Recovering from everything. Taking it easy. But things are looking up. Finally.

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.

Today is Starting on a Good Note

First, I saw the physical therapist. In general, except for the area closest to my armpit, the lymphedema was vastly improved in just one day. One area was 3.5 cm smaller, right above the elbow. The elbow was about 1.5 cm smaller. The area nearer my armpit and under the arm may take more active treatment - it is a bit harder, which indicates that the lymph fluid may have created fibroids which are harder to break down. Gentle massage to break up the fibroids will help.

Then, I saw the neurosurgeon. I asked him what symptoms I should worry about if there were brain tumors growing and his answer "headache and nausea - the symptoms you had before surgery". And, I have neither. As for the increased numbness, he saw that the swelling in my brain will fluctuate over the next weeks and that it often takes people 6 weeks to fully recover. It's only been two. So, I won't worry about the numbness just yet. He also says my jitteriness and high heart rate may be related to withdrawing from steroids. As for the lack of ear wax, when I said that the anti-seizure medication causes dry mouth and also nose irritation and dryness, I said maybe lack of ear wax could be related to that and his answer was "that's true theoretically; but I've never heard of a connection".

So, I guess I won't worry about growing brain tumors. I start Tykerb tomorrow, I think.

I'll see the general surgeon later today, after a couple of visits from friends and colleagues.

Joanna suggested maybe we biopsy the two suspicious areas. I'll mention it to him.

I was also able to get a decent night's sleep. I slept from 10-11, then 11-1am, then took an Ambien and slept until 4am, then 4-5, then 5-6. So, 8 hours.

All in all, a good start to the day. Thank you everyone!

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.

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.

Minor Issues

First, I want to say that I think I'm doing okay in the grand scheme of things. My tumor marker is low and most of the elevation is probably coming from the tumor on my breastbone. My energy is coming back (although I didn't feel like doing anything after wound care at 1:30).I am doing more or less normal activities (well, normal for me in the last year or so). Life is sorta getting back to normal.

There are some minor issues that I'm finally getting around to thinking about now that the major issue (the wound) is resolving. I'm still trying to grow skin over the flap. It's not going to be done by the time I see Dr. T. in Portland on Monday but because I know there is an end point in sight, I am continuing to deal with daily dressing changes. It is still bleeding, which then makes me wonder about my energy, so I will continue to rest and not push myself too hard.

The other issues are:
1) lymphedema in the left (surgery) arm. The swelling is mostly in my bicep and tricep area, but on Monday, I must've lowered my arm a lot because when I got home, I couldn't see my wrist bone and most of the bones in my left hand due to swelling. I've spent most of the last few days trying to keep that left arm elevated. Now I can see my wrist and even most of my elbow, although there is still swelling just below my elbow, too. I mist have to wear a sleeve.

2) the tumor on my breastbone. I could tell that it grew after surgery. I hope that Herceptin stopped the growth, but I still have about a 3-4 cm lump protruding from my upper chest. That lump seems to have gotten more purple and blue since Herceptin, which might be death? Either that or it's grown so much that it's bursting the skin at its seems and the skin is bruised in response. I hoped that it could wait until summer started, but maybe well have to do surgery to cut it out sooner rather than later.

3) the right shoulder/arm/hand pain. I am constantly telling myself to lower my right shoulder and relax it. I keep tensing it. I also find myself tensing that right hand. It's one reason why I'm not on the computer (blogging or facebook) as much because it irritates that right arm. Acupuncture the other day helped to relax it some and I'm trying to keep the effects of acupuncture (relaxation) more in play. I think it's better, but I still get numbness and tingling in my fingers.

4) the P.A.S. port in my right arm. The catheter seems to have moved around before and after surgery. There's a slight buckle in it, near the port, where the catheter makes a kind of "s" curve. I can also feel the end of it in my chest - all the skin around that area is tender. It feels swollen to me. And, while I can stretch my arm out horizontally, I can't stretch it out overhead because it starts hurting. I have a suspicion that things shifted somehow. I really want this port taken out. If it gets as painful in my next infusion as the last time, I will talk Dr. K into taking the damn thing out. I don't think I need it after all . . . I don't plan on having chemo again anytime soon. Just the targeted therapies (Herceptin and Zometa).

So, several issues related to my upper body. I hope to gradually work on each of them so they can resolve. : ) Happy Friday!

Transfusion Helped

As I mentioned in my last post, I had a transfusion on Friday. This past weekend and the last two days, I have noticed that it has definitely helped.

On Saturday, I was lazy through the morning, but after lunch, I went to urgent care for a dressing change and then my folks and I went shopping in Albany. I was specifically looking for button-up shirts since I can't lift my arm above my head and put on t-shirts. I still can't wear my zip-up hoodies either as the sleeves are too tight. We got home about dinner time and I managed to keep going through dinner. Then I rested.

On Sunday, after being lazy in the morning, I then ran errands to my office, then picked up Eddie at his dad's, then I went to Urgent Care, then Eddie and I went to the park before dinner, then I had dinner. Then I rested.

On Monday, I was busy from 8 in the morning until about 6:30pm (I worked for awhile, then wound care, then lunch, then met with my colleague K., then picked up Eddie, then did a presentation with K., then stayed around for the reception). I collapsed by then - I was really tired during the reception. The presentation did generate some interest with a few people, so I guess it was successful.

Today, I went to the office for a bit, then wound care, then my class for two hours, then lunch, answered some emails, then had a meeting, picked up Eddie, and from the afternoon until now, I've been sitting in the living room. This is partly because since I came home from the presentation yesterday, my whole left arm has been swollen with lymphedema. I've spent yesterday evening, through today and now this evening, I've been trying to keep my hand and forearm elevated so that the swelling can go down. My left bicep has been swollen since surgery. I figure that once the wound clears, then I'll worry about decreasing that swelling, but I might have to start wearing a sleeve or something before that.

So, even though I am tired now, I am glad that I can have more or less normal activities during the day. I'm happy about that. I am also able to walk up stairs or walk several blocks without losing my breath. Thank goodness for the transfusion.

It's now sunny out. It's supposed to be really sunny and warm tomorrow, with a temp of 70 predicted. Yay! Spring is finally here!

Rib Pain

While I had a good week-end, I did have some pain in my ribs that flared up Friday night, was kinda bad on Saturday, and started to subside on Sunday.

On Saturday, it kinda hurt to breathe. It was a constant pain that affected my whole demeanor, I think.  Between the rib pain, sensitive teeth, arthritis in my hands, plantar fasciitis and the swollen lymph nodes, I really felt old. 

I wondered about the rib pain - worried if cancer got into the liver - but I also considered the fact that lymphedema had increased, causing more pressure on my ribs. So, I tried to do some self-massage to get the lymph in the right area moving and I wore an Under Armour shirt to bed (sorta works like a compression sleeve). 

Since the pain resolved relatively quickly (I still sorta feel it, but I can go about my daily activities) after wearing the Under Armour shirt, I decided that it was lymphedema.

So, that was the focus of my acupuncture treatment today.  She did "spooning" (gui shui?) by rubbing massage oil on both of my shoulder blades and applying pressure using a spoon.  The right side was really really tender - and I kept flinching away because of the real and also the anticipated pain.  Once I relaxed some and tried to do deep breathing, I could tolerate more.  It is designed to release toxins and release and move the edema. 

Life with cancer . . . there's always something!

A lazy Sunday morning

So, I'm catching up on blogs and facebook this morning while watching my son race people from other parts of the world on Mario Kart for the wii. Earlier today and yesterday, he was racing someone from Japan and maybe someone from the Middle East and also people from the UK and France. He enjoys racing real people, not just the computer.

I am about to type up what I wrote at Wacky Bounce yesterday - yes, I actually wrote about two more pages for my summary of interviews! Yay! Writer's block is gone! I've decided that what I need to do is to take Eddie to Wacky Bounce more often because then I don't have access to the internet and from the TV, which tends to distract me from work I need to do.

The pharmacy in Portland didn't send the Tykerb that I take - I even called them on Wed or Thurs and made sure that they knew that they should be sent out and the woman on the phone assured me that she would see that the medication was sent out that day. Puzzling. They're not open on Sunday - at least I don't think so - so I need to wait until tomorrow. I hope I get them by Tuesday.

I think I may have pulled a muscle under the reconstructed right boob in volleyball last week. I reached up for some ball and I felt a tweak. I only really feel something when I lift my arm in certain directions. However, it seems that I have had a little more achiness from lymphedema around my right side (under my armpit and around the side toward the back) and around my right shoulder blade. Achiness isn't the right word. I just feel that it's more swollen. Also, there's a spot on my right shoulder blade that feels like another pulled muscle. Or something. So, I've been trying to stretch it throughout the day to try to get the lymph flowing more freely and I have been doing my qigong routine, too.

In the meantime, I'm reading a new book, Reinventing the Body, Resurrecting the Soul by Deepak Chopra. It's about mind-body-spirit healing, like many of his books are, I guess, although this is the first time I've read any of his books. The one thing he said that I really liked, though, is that we need to stop thinking of our bodies as finite, material objects, but more like the interface between the visible or material world and the invisible, spiritual/energetic world.

My visualizations about the lung tumors are something along the lines of talking to the tumor/cancer cells and saying things like, "well, if you mutated from normal to look like this angry mass of cells, then you're able to mutate back to normal tissue". In other words, I imagine the healthy lung tissue around it coaxing and absorbing the diseased tissue - not so much in an effort to kill it but more to tell that tissue that it can still live in a healthier and longer way if it mutates back to normal behavior. I sometimes imagine the tumor cells as a young, terrible-twos toddler; Eddie never threw many tantrums, only a few, but when he did, I just sat down and held him in my lap and hugged him even as he kept flailing around. It calmed him down. That's what I visualize for the tumors. Encouraging normal behavior through a loving but firm hand.

What's on tap for today? Well, typing some stuff up, then going to K-Mart - mom gets these coupons for family and friends day where we can get some good discounts - then later, dad is going to help me put plastic on the windows in an effort to save on heating costs. And, another trip to Wacky Bounce.

Happy Sunday everyone!

Treatment Updates

I still haven't started radiation treatments yet. I'm not all that eager to start, but I will do them because there are still a few hard nodules under the skin, which are presumably little tumors growing up from the lymph channels. I may, however, not do the full six weeks, depending on how my body responds to them. When I asked the rad onc about doing less to begin with, her reply was that it would be 3 months before she knew whether or not the radiation treatments worked - in other words, we could do less treatment, but since it takes awhile for everything to settle down, we wouldn't know whether or not there is still cancer there for 3 months. And, if it didn't work, then I'd have to do the radiation treatments again. Medical science just doesn't know or hasn't studied whether doing less would be just as effective as doing more. So, they stick to the standard treatments.

But my thinking is that the medications I'm on - Xeloda and Tykerb - have or are sensitizing the cancer and it will be easier to kill with radiation. I also take a five mushroom pill (3 of which have anticancer properties), melatonin (which has been shown to stop and/or reduce breast tumor growth in mice), and turmeric (shown to be effective for skin disorders and studies have shown it to stop tumor growth in melanoma). So, I guess I think doing a little bit of radiation will tip the balance in my favor - kill the suckers - and then the meds will be able to do their work.

The open skin wound continues to heal. I've recently started putting turmeric paste over a larger area than the original open wound - the skin over the implant was dark - and now the whole area is weeping more. I need to change the dressings twice a day. The way I see it is that my body is expelling the cancer through the fluid drainage.

I don't have as much lymphedema over the right ribs as before - I do some lymph massage everyday - and interestingly, the whole area is fading again. The area was getting redder AND more swollen after I painted my bathroom, so my guess is that a lot of redness is from the lymphedema, not the cancer. But as I said, there are a few little nodules that are little tumors, so I will submit to radiation, too.

Have a good Tuesday everyone!

Update on Alien Hickies : )

I forgot to mention yesterday that on Monday night, after I had the "cupping", I slept really really hard - two four-hour stints, which is unusual for me. Last night was more my typical night - I think I woke up 2-3 times. Part of what my acupuncturist is trying to do is to help my body "retreat" (including sleep) so that it could heal. I guess what I'm trying to say is that while my neck looks funny, I think I had a better night sleeping overall because of the cupping.

And, my skin is continuing to heal, although the open wound seems to be weeping more. My guess is that because the wound is still open, and as I do lymph massage underneath the implant, I might actually be massaging the backed-up lymph out of the wound - I'm directing the lymph fluid down and toward the center of my torso, but backed up fluid could really go anywhere to drain and the open wound is a path of least resistance.

Since I've been doing lymph massage in that area under the implant, it seems that the red is starting to fade again (it had gotten more red after I painted the bathroom). Both my massage therapist and the radiation oncologist asked whether or not the red rash was really cancer cells or whether it was red from swelling/lymphedema. It's probably both and no one really knows. This just really shows the limitations of our knowledge of what's going on here.

Still no word yet on when I start radiation. It looks like it may be next week. I do think I have a couple of new little skin tumors growing - hard little nodules under the skin - so I think radiation is the best course to get rid of that.

He He He

So, why am I chuckling to myself? Well, I'm messin' with ya. I decided to change my template for the heck of it. Got tired of the little dots. Wrote a new title description. What can I say? I like to change things up once in awhile. As I play with blogger more and more and I'm getting more proficient, I figure, "Why not? It's my blog, after all?" He he he.

As you can read, I'm doing fairly well. My lower back is still sore - the massage helped on Friday, but the back still aches. I think I may have mentioned that I overdid it in painting the bathroom last week-end. Not only is my back sore, but I ended up with more lymphedema in the area of the red rash, under the tissue expander, and above my right ribs. My massage therapist did some lymph massage there and she showed me what to do. So, I have decided to continue trying to drain the lymph in that area.

Now, conventional thinking is that when a person has cancer in a particular area, it's better to keep it contained in that area. In my case, since we know cancer is in that area, we should NOT do lymph massage because if we do, that encourages lymph flow and hence more cancer cells circulating in my body. By not doing lymph massage, we keep the cancer relatively contained, and then it'll be easier to treat.

However, as I discussed with Dr. Kenyon a few weeks, we know that the cancer is already elsewhere in my body - it got to my bones. So, why not decrease the lymphedema? As I discussed in an earlier post, when tissue has had radiation, it scars the blood vessels (and I think the lymph channels, too), which means there is less blood and lymph flow in that area. I think that if there is more fluid than the system can handle, it creates traffic jams and then the meds cannot get to the cancer cells to kill them. (And, BTW, Dr. Kenyon thought that my thinking sounded just as logical as conventional thinking as conventional medicine really doesn't know the answer to the question. But remember I'm not medically trained.)

By decreasing the lymphedema and encouraging more fluid flow, I am encouraging cancer cells to start flowing through my body. But I also allow the meds to have better access to the cancer cells since the meds are also flowing through my system.

My massage therapist (who was careful to say she really doesn't know the answer but was just thinking out loud like me) also felt that maybe that area was still red and looked like a rash because the lymph fluid was all backed up and not able to flow. In other words, she questioned whether or not it was cancer causing the swelling, but rather lymph fluid getting all jammed up.

At any rate, I figure I can try this and see how the rash responds. We do know that the meds haven't quite been doing the trick in that area without the lymph massage. So, it's another experiment. I figure I have nothing to lose, since I am taking meds that are supposed to kill cancer cells when they encounter each other. I might lose some containment of the red rash, but it's a risk I'm willing to take since I may be able to opt for more aggressive treatment down the road. But I may just save myself a lot of grief with the radiation AND allow the meds better access to the cancer cells by doing the lymph massage. I'll let you know what happens!

My Impressions of the Rash and the Radiation and Now the Back Pain

I am feeling somewhat better today about the prospect of radiation. I am hoping that the rad onc agrees to go slower and/or do less radiation, at least initially, and see how my body responds. This is in the hopes of alleviating any potential problems with open skin wounds and/or losing the implant. I'll see what she says next week.

I think, though, that perhaps I shouldn't have been so surprised about the fact that the rash wasn't disappearing. The area has had previous radiation, and as I explained earlier, tissue that has had radiation tends to have less blood flow.

Okay, so this area probably has less blood flow and less lymph fluid due to the radiation, so it's harder for the meds (Xeloda and Tykerb) to get to the cancer in the lymph channels. If the meds can't get to where they can kill the cancer cells, then it seems logical that it'd be harder to get rid of the rash. So, if the meds can't get there, then we try radiation which can probably kill the suckers.

The lymphedema in the area of the rash also seems to be increasing. Dr. Kenyon felt around and it doesn't seem as if the area is trying to grow a tumor. The increased swelling may be related, instead, to the fact that I spent two full days last week-end painting my bathroom. This involved a lot of reaching, cleaning, scrubbing the cabinets, taping everything, and then painting one coat on all surfaces, and then doing more painting over that for the stripes and the random brush strokes.

As I am right-handed, this means that the right side got a work-out - certainly more activity than it has seen in a lot of months. So, the body has to adjust and that just might indeed mean more swelling.

I remembered this morning that my massage therapist said to wear under armor - I've been pretty good about doing that except in the last week. So, I wore it again today and will see how the swelling goes.

In the meantime, yesterday, after hearing the news about the radiation, I went to pick my son up from school. I was in the car about 20 minutes - driving to and fro - and when I got out again, WHOA! My lower back felt like it'd gone out of whack. It feels so tense and tight. I mentioned it to my colleague and I initially told him that I wasn't sure what I did - only get out of the car -and then I told him about painting last week-end and his reply was that sometimes, your back might wait a few days to bug you after doing activities like painting.

Anyway, my thinking is that I overdid it last week-end, but after hearing the news that I'd have to do radiation - and I really don't want to - caused me to tense up so the back responded by kinda locking up like it has.

Luckily, I was able to get an appointment with my massage therapist tomorrow. And, the cancer center in Albany (about 10 miles away) was able to fit me in for another massage (free of charge) next week.

Again, thanks to everyone who continue to read about my journey . . . and for commenting on the blog! I know you're reading it because I can see it on my site meter! Hope all is well with you.

Doing Okay, Despite Three Needle Sticks

I am beginning to get more sleep these past few days - I've had at least 6-7 hours in the past 4 or 5 nights and I even had one night of 9 hours. The sleep does wonders for my mood and energy. I have upped my dose to 8mg of melatonin - studies indicate that 75mg can be taken daily without any ill effects, other than feeling drowsy! But that's the point, right?

I also had my Zoladex injection today - that's the pellet that goes into my abdomen and is slowly released over a 28-day period. It shuts down my ovaries. No problems, there. But today was also a day for blood to be drawn for lab tests. Dr. Kenyon wants them drawn every two months. I warned the nurse, Joan, that my veins on the left arm are hard to stick. She found out the hard way. Anyway, I have three needle marks in my left arm. Sigh. That's a long-term side effect - scarred veins- of the adriamycin and cytoxan from five years ago. And, they wonder why my blood pressue goes up whenever I have to have my blood drawn.

I also started Xeloda again this morning. So far, so good. Still seeing improvement in the skin on the right side.

But, I may have some lymphedema from the surgery. I didn't realize until about 2 weeks ago or so that my back - around my shoulder blades and ribs - was tender until Scott tried to give me a back rub. He put a little bit of pressure on that area on both sides and I just jumped. I ended up concluding that I may have some lymph fluid backed up from surgery. I checked with my friend, the surgical nurse, and she said that there shouldn't be any pain from the drain areas, although they are still not completely healed up. And, Debbie, my friend Tammy's sister, who works at the hospital, said lymphedema on the back is a side effect post-mastectomy. I will mention it to Dr. Kenyon when next I see him. In the meantime, I had a wonderful massage from Mary Jane at the Heartspring Wellness Center. Mary Jane (who my friend Don just raved about the other night at cards) did lymph massage on my back, after Brodie (my acupuncturist) rubbed it with a scraper implement last week. I think it helped. Mary Jane also said to wear Under Armor (you know those tight shirts that you see football and basketball players wear under their shirts?) to try to help the lymph fluid move a little bit better. So, I found some of those at Joe's (still G.I. Joe's to me - I know they are getting away from the military connotation of G.I., but maybe if they kept the initials but made them stand for something else like "Game Innovators" or "Got Implements", it'd be easier on those of us who grew up with "G.I. Joe's"). We'll see how they work!

Oh, I forgot to wear green today. Luckily, I had a beaded bracelet with green on it that works. Happy St. Patrick's Day