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.

My Brain Got Zapped Today

I just got my brain zapped. Yep, whole brain radiation started today.

I was apprehensive beforehand. But talking to people when I got there - asking about side effects - calmed me down. They had to do a "set-up" first to be sure I was positioned correctly and that took a little bit of time. At first, the tech didn't say what she was doing when, but when I asked her to tell me what she was doing and why, I was able to calm down. I thanked her for telling me.

Then, once the doc okayed the set-up, I got zapped. About 20-30 seconds on each side. Fairly quick. I don't even need to take off my contacts. Most people only get scalp redness (alleviated by aloe vera gel) and some fatigue.

Already got the fatigue but that seems better the more days I have since surgery. The social worker said, "gosh are you ready to start this today?". When I said that because my family had already scheduled time at a house at the beach - July 16 - and that this was the first day the neurosurgeon released me to start radiation - the 14 scheduled sessions have to begin today, she understood. She then said, "boy you're strong!"

Yeah, I guess I am. I get a lot of support at home and that really really helps.

I am more tired today than yesterday, though, as I couldn't relax my right arm and shoulder. I think it was because I spent a few hours gluing tiles to my most recent mosaic. It's better now, though. I do have some increased swelling in the front of the right shoulder due to the surgery and the nurse said that I could probably start taking Ibuprofen if I wanted. I guess I should check with my docs first, to make sure it isn't contraindicated with the anti-seizure medication. On second thought, I think it is. I do think I got some sleep, finally, and my arm relaxed partway through the night. I'm not going to use that arm much today so that I can get a better night's sleep. I will, however, try to stretch it more.

Tomorrow, I have four appointments - wound care, physical therapy, acupuncture and then radiation.

That's pretty much my life with wound care twice a week, physical therapy twice a week, acupuncture once a week, and regular therapy.

I feel so much better now that WBR (whole brain radiation - for ease of typing, that is the abbreviation I will use henceforth) has started and I know what to expect.

Had some diarrhea, too, today, but as that is a side effect of three of the prescription meds I am on (anti-seizure Keppra, anti-cancer Tykerb, and an antiobiotic Keflex), it is to be expected. I took an Imodium after breakfast and I feel better now. It seems that one 2mg Imodium tablet lasts me two days. So, tomorrow should be better.

Yes, I have a lot of things going on - treatment, side effects from treatment, treatments for the side effects, wounds, etc. - but it could be so much worse. I watched Extreme Makeover Home Edition last night - I don't have it nearly as bad.

And, yeah, I finally got hold of a real person at the Standard about my short-term disability claim this morning. While in radiation, they called and said that they are processing my claim and should have a determination this afternoon or tomorrow. Turns out  my old analyst was on vacation so I politely but  firmly requested another one as I have had much difficulty getting hold of her. It pays to call and follow up on things like this. Nice to know that I should know something by tomorrow morning.

I am on a different computer than my iPad - so I will post some pics that I've been promising for awhile! Definitely feeling better this afternoon than this morning. I promise I won't overdo it, though!

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!

Revisiting Herceptin Side Effects

I love having this blog. Occasionally, I will use the "Labels" in order to look up some topic that I've written about before. I decided to see how Herceptin affected me 14 months ago, when I first started taking it.

Fatigue - check

But also, there was a post from a year ago where it said that after a few days, I begin to get really hungry and want to eat a lot. I figured my body wants the energy in order to remove the dead cancer cells from Herceptin as well as to heal.

Great Appetite - check

No word yet from OHSU. Still no official date for my surgery. I'm not going to fret . . . it will happen when it happens. I want it to happen sooner, of course, due to the pain, but I think I'm getting a good system for pain relief going.

Have a great week everyone!

Abraxane Side Effects

I think I mentioned in a blog post a couple of days ago that one of the side effects I am experiencing is stomach cramping. When you read the list of potential side effects, they say "stomach upset" or "stomach pain", but in truth, it isn't painful. It just feels like a tightening or spasming of the tummy muscles. It's not even uncomfortable. Just weird. [WARNING: don't read the next sentence if you're squeamish.] And, I have some diarrhea and/or soft stools.

I should also say that I think I've lost a few pounds since starting Abraxane - maybe 4-6 pounds or so. My appetite is about the same, so either my body is using a lot more energy to whisk away the dead cancer cells or my body isn't absorbing the food I eat as well as it should. It's the latter, probably. I haven't minded the weight loss because I felt at least 15 pounds or more over my ideal weight. I'm about 11 or 12 pounds less than I was in June. Partly because of the recent weight loss due to Abraxane, but also because I think I've lost some fluids from the skin wound - I have less lymphedema than I did in the summer. Dietary changes have also contributed, like cutting out white flour recently and dairy products and I'm really trying to decrease my sugar input. I also haven't been drinking as much beer since summer. If I lose more than 5 pounds, I'll get worried. But losing another 5 puts me at the ideal weight for my height and bone frame.

So, I told my colleague, S., about my stomach cramping symptoms and wondered why. S. knows how to get into the medical literature that reports actual studies.

He told me this morning that it turns out that Abraxane can destroy the inner lining of your stomach. He suggested that I take Probiotics to help with digestion and to increase the good bacteria in the stomach. And, maybe occasionally take Mylanta or something like it.

I then mentioned it to a friend and colleague (K.) at lunch today and she suggested a supplement called "GI-Encap", which repairs the lining of the stomach. She also mentioned something called HMF-Intensive, which is a probiotic.

So, I will be adding those two to my supplement repertoire. At the moment, I take 1) CoQ-10 (helps your cells work more efficiently for more energy; may also have anticancer effects), 2) Vitamin D-3 (I had low Vitamin D levels and it also has anticancer properties), 3) turmeric (anticancer properties), 4) Chinese herbs (a five-mushroom blend (anticancer), Ji Xue for building blood, Rehmannia and Scrophularia also for building blood (I think), Shen Ling Bai Zhu Pian (to help my body digest the Rehmannia and for digestion issues generally)), 5) melatonin (anticancer properties), plus a 6) Chinese herb for sleep. I also picked up 7) Zong Gan LIng at the co-opera yesterday for "advanced colds". The latter helps with symptoms and also helps to get over your cold more quickly. I started taking it yesterday and I have to report that it really does help relieve cold symptoms, but without leaving my mouth dry from the antihistamines in western cold medicines or making me feel zonked out or tired. I feel normal and there's less stuffy/runny nose and post-nasal drip to worry about. I also think that my cold is already a lot better.

Having cancer isn't cheap. That's where a lot of any "disposable" income I might have goes to. I'm not complaining, mind you, because in general, I have been feeling fairly well lately, with good energy, no pain, etc. But thank goodness for good health insurance and for a full time job.

Pictures - Thinning Hair to Bald to HATS!

This past week, my hair started falling out.  The nurses said that some people only get thinning hair with treatment, so initially, when I started seeing a few strands on the pillow on Tuesday, I just had it cut short and spiky on Wednesday in case I kept some of the hair.

Front view

A side view

But the next day and Friday, more and more started falling out.  It's starting to look rather thin.

Thin Hair!

On Saturday, I met some of my former students (now friends) for coffee.  I got a bite to eat and had some leftovers that I thought I'd give to Cat, but when I looked down on my plate . . . I saw a strand or two of my hair in the eggs!  Yikes!  It was falling out like crazy.  Soon, it looked like I had mange!  I decided then and there it was time to shave it all off.  But first, the search for hats started:

Cat in the Hat

Cat and I went to Goodwill.  She helped me pick out two, plus several scarves to keep my neck warm.  Cat was looking for Halloween costumes.  

After Goodwill, I picked up dad and we went to Kohl's in Albany.  I found a couple of cute hats, a scarf, a pair of gray cords, a cute charcoal gray jacket, plus some clothes for Eddie, mom, dad, and Scotty.  (Hey, things were on sale and I had a 20% off coupon.)

Then, it was off to Lebanon to see Amy and Josh, who had a few hats to give me.  I asked if they had an electric razor - they did - so I asked Josh to shave my head.  We went into the back yard and voila!

I'm bald again!  Thanks, Josh, for shaving my head!  No more finding hair in my food!  : )

Now I'll model the hats . . .

Goodwill Hat

Amy and Josh hat

Kohl's Hat

Another Kohl's Hat

Amy and Josh Hat

Amy and Josh Hat (although Heather claims it's hers!)

Another Amy and Josh Hat

Another Amy and Josh Hat

Goodwill Hat

This is a hat Joan gave me eight years ago, the first time I lost my hair to chemo.  She bought it in New Orleans!  Thanks, Joan!  It's one of my favorite hats!

Seriously, I don't mind being bald.  For the most part, the side effects of Abraxane are doable.  In fact, I feel emotionally happier and lighter than I have for months.  Literally, months.  Then again, maybe I feel "lighter" because I have no hair up there!  Ha!!!

Abraxane Side Effects

I've had two Abraxane treatments so far. In terms of stomach/nausea/digestive problems, I seem to only get a gurfly stomach that night. Also, the anti-nausea meds cause some constipation, but that goes away after a day or two.

The biggest side effect is fatigue. This is explained by the fact that Abraxane affects your blood counts; when they tested me last week, I was anemic. My red blood cell counts (total red blocd cell, hematocrit, hemoglobin) were low, especiallyt he hemoglobin at 8.3. They were potentially thinking about giving me a blood transfusion, but my doctor thought I was still okay.

But I have certainly been fatigued. I exacerbated my fatigue with staying up too late on Friday and Saturday nights. Friday, I went to a grad student's house for dinner, but they didn't eat until 9pm, so we didn't leave until 10pm. And, Saturday, I was at Puttin' on the Pink all day. Sunday, we spent five hours at Bauman Farms in Gervais. I spent the last hour or so in the food tent while Eddie hung out with his cousins in the Dark Maze and then the Obstacle Course and the inflatables, which were all close to the tent. It was at the end of the day, so there weren't as many people. I got to rest and Eddie got to play. Also, dad drove up and back - a huge thanks for that! Thanks, dad!

I got to bed early enough last night, but I'm still fatigued. I got through class, but partly because I could lay down on the couch in my office and read and prepare for class.

I also feel that at least one or two of the lymph nodes and maybe some of the satellite lesions are smaller (lymph nodes) or softer (satellite lesions), which I think indicates that Abraxane might be working.

That's a good thing.

Tired

I had insomnia last night - couldn't get to sleep until almost midnight and then I had to get up at 6:30. So, I've been tired all day. About 11am, my tummy felt a little gurgly. I didn't feel nauseous, just like the stomach was a bit too active. So, I took Phenergan and it was fine. I woke up a couple of times and at 5am, it was gurgly again, so I took another one.

I took Eddie to school and then came home and napped twice for about 30 minutes each time, then I took a shower, had lunch, then rested - maybe napped again - then picked Eddie up from school.

I wanted to go to qigong tonight, but I took Phenergan right before dinner (they said to do it about 30 min ahead of time, but I didn't) and my stomach felt a little upset again, so I rested yet again - maybe napped about 15 min here and there.

I've got stuff to do, but I can't seem to concentrate on it. I'd like to pay bills, read, do something that makes me feel productive, but it seems the most I can muster is updating my blog and posting on Facebook!

Here's to a more normal day tomorrow. Then again, I get the P.A.S. port inserted. So, I may be a little knocked out from the meds/sedatives they give me to do that. Maybe by the week-end, things will be back to "normal".

Relearning Old Lessons

Acupuncture was good for me today. I let out a lot of emotion. B., my acupuncturist, said that I am feeling pain because my body is trying to catch my attention. My task is to figure out what the message is. One message, I think, is acceptance (of the limitations I now have from this disease) and to be okay with uncertainty.

You see, I had this expectation that I would have less swelling in my lymph nodes by 8 weeks post t-cell infusion because that is what happened to the guy who had advanced melanoma. His tumors disappeared by 8 weeks. My 8 weeks are up this Thursday and it's not happening. So I am frustrated because I want to go back to being "normal" with the ability to do all sorts of things like travel. In other words, I want to go back to being busy busy busy.

But the turtles in Hawaii were telling me to slow down. I keep forgetting to do that. Perhaps the pain is reminding me to slow down. To realize that while work is important, then rest of my life is important too and I need to nurture myself and my family just as much.

So B. told me that I should probably get rid of the expectation and let the universe do what it needs to do in its own time, not mine. And to not measure myself in terms of my colleague's output, but slow down. Get off the academic merry go round, so to speak, and just do things in my own time. To accept my limitations (I.e., not do as much as my colleagues) and to accept that maybe I should stop playing softball and be okay with that.

And, to accept that whatever is causing the pain is what it is. I don't need to know why, just realize that "it" is there and to be okay with not knowing. I need to go back to living in the moment. I need to write gratitude lists again. I also need to be okay with uncertainty.

In the end, I am projecting into the future again - thinking about the "what ifs?" and "why" but when you worry like that, you are not enjoying the time you have today. When you constantly wonder why, you forget about all that you are thankful for.

So, thank you for the reminder, B. And thanks for listening, R. And thanks to all my cousins and all the other people who took care of me in Alaska. A big thanks to my parents for taking care of me when I came home. I am sorry that I have been such a pill. Thanks to my son for reminding me what's important.

And, dad, I will try yet again to slow down! LOL

Back Home

I arrived back home yesterday from Alaska.  The last few days I was there, I didn't have great internet access, so I wasn't able to blog.

Overall, it was a good trip. I learned a lot - some in casual conversation with my cousin and with others so I didn't write it down (but maybe that's best as it was political) - and had four good interviews.  I went to Unalakleet, a place I had never visited before.  I have to say that this village (around 842 people) was, on the whole, fairly healthy compared to a couple of other villages I've been in.   There was a lot of construction going on - they were building a seawall (in case of coastal erosion) and paving the roads. Lots of people were fishing, for themselves and when they got enough for themselves, they also did some commercial fishing.  People were berry picking, too.  Blueberries and salmonberries (also known as cloud berries).  Nome had lots of blueberries, too, but hardly any salmonberries. 

The people in Unalakleet were very friendly, too. I went to the Peace on Earth pizza place for dinner on my first night, and while walking home, a lady (D.) on a 4-wheeler stopped and said, "are you Deanna?" and I said "Yes I was" and she said that someone on facebook told her to say hi to me.  Then, D. said,  "Do you want to come to my house?  I'm going to have dry fish, seal oil, and sura (willow leaves)."  Even though I already ate, I said, "Sure!"  I'm not stupid, you never turn down niqipiaq (Eskimo food or "real food") when it's offered to you.

D. spoiled me.  We ate dried salmon (humpies), miziGaq (seal oil) sura, tugiyuq (sea lovage), masu (Eskimo potato), plus maktak (whale blubber, which I never got used to) and a couple of other things. Mmmm mmmm good!

It was really nice visiting with D.  She talked to a lot of elder ladies about skin sewing and is trying to pass this skill down to the younger generations. She is also really interested in archival documents and photographs - she had even heard of Father Bernard Hubbard, the "Glacier Priest", who took lots of pictures on King Island and about 20 hours of film, from 1937-38. 

The next day, I went to Peace on Earth (free wirelesss internet) for lunch and then I got hold of an elder to interview - she brought me some dry fish, too.  At Peace on Earth, about 12 military guys were waiting for their pizza - Air Force, Army, and National Guard troops, who were doing some training, I think, in their helicopters.  They flew in for pizza and then wanted to fish a little bit before moving on.  (I thought it was ironic to be sitting at a place called "Peace on Earth" with military guys.)

After the interview with the elder, I went to D.'s for dinner - she prepared fresh caught trout and also king salmon and halibut, with a salad, andfresh baked bread.  Yum!!


The next day, I was to have an early morning interview, but I think my interviewee forgot.  I went back to bed to sleep in.  I've been sleeping a lot - I think the pain meds make me drowsy. After lunch, I interviewed another board member and then went to visit the President of Bering Straits Native Corporation - who then invited me over for dinner. 


Both talks went well, then I went to dinner and afterwards, T. (the President) and his wife (R.) took me for a drive on the only roads around Unalakleet.  That was cool.  Saw where there used to be an old Air Force base, that was decommissioned in 1984 (? or was it 1976?).  There was a nice view down into the Unalakleet valley. 


The next morning, I visited T. again - got a second more substantial breakfast - and then back to D.'s house to pick up dry fish (she wanted to send me home with some).  Then, I flew back to Anchorage.


The only thing that marred my trip was the pain and/or nausea that I had.  I started a pain medication just prior to my trip - the swollen lymph nodes under my left armpit started giving me constant pain - and for a day or so, I ended up with nausea, just prior to flying to Unalakleet.   I think I had too much caffeine (diet pepsi) and maybe not enough food.  I started getting nauseous on Monday afternoon (had visited an elder whose house reeked of cigarette smoke) and I couldn't shake it the whole rest of Monday and even the next morning, I felt nauseous.  So, I made sure I ate lots of bread, less caffeine, and then was able to fly to Unalakleet.


But by Thursday/Friday, the pain pills weren't working as well.  I would take one and it would work until about 5 hours after taking it - I could take it every 6 hours.  But I started feeling constant pain about an hour after taking it.   By the time my cousin picked me up in Anchorage, the pain was really bothering me, so after dinner, she took me to  the Alaska Native Medical Center's Emergency Room.  In the end, they said I could double my dose of the pain medication, Ultram (tramadol) (or start taking a narcotic) and I could take Tylenol in-between times if I needed it. 


I had an early flight home on Saturday - I felt okay, just tired, so I slept most of the trip.  Made sure I ate breakfast.  But by the time my folks picked me up, I was nauseous again from the pain pills.


I spent most of my time yesterday resting, dozing, and just eating small amounts.  The nausea is mostly gone as long as I keep some food in my belly.  I slept about 9 hours last night and then got up and had breakfast.  I picked up my son from his dad's (yay - soooo good to see him!  I really missed him!!) this morning.  But now I'm tired again. 


I think with the pain pills that I need to take a double dose, then six hours later, a single dose, then a double, then a single.  For now, that seems to work.  The double dose keeps the pain away and then the single dose kinda keeps it away but I get less nausea. 


I'm supposed to have Herceptin tomorrow, but I think that that triggered the increased pain, so I'm going to cancel tomorrow until I see Dr. K on Tuesday.  I'm already tired of the pain.  The swelling isn't going down. Something's got to give . . .

A New Symptom?

Yesterday was my son's "Wipe-out Kids' Edition" Birthday Party.  I will write another post about that adventure.  But it was quite warm out (about 96 degrees) and I was in the heat from about 12noon or so until about 6:00pm.  Eddie's party was from 2-4pm, but then some friends stayed to hang out in the shade.

But last night, I took a cool bath to wash off dirt and sweat and I noticed that the area around my right groin was swollen.  It was raised about a half inch from normal.  The whole swollen area was about 4-5 inches long and 2-3 inches wide.  It felt a little squishy so I presume it was fluid/lymphedema. 

Dang.  Lymphedema?  In my groin?  My only guess is that the lymphedema which is in my right scapula area (around the shoulder blade) had migrated down to the groin via gravity but was not able to drain for whatever reason.

So, I stimulated the lymph nodes around the groin and did some squats and stretches in an attempt to move the lymph in that area.  By this morning, the swelling is down quite a bit, but I can still tell it's there.  That area is now somewhat tender. 

Also, the last few nights, I have not been able to get comfortable when it comes time for bed.  The swollen lymph nodes in my left armpit kinda throb with pain.  When I pay attention, it's almost continuous.  I started taking an extra dose of Tylenol about mid-day - before I only had 2 extra-strength Tylenol in the morning and 2 at night. 

I had a Herceptin treatment on Monday. My guess is that maybe, just maybe, the extra pain is caused by blockage in the lymph system, causing most of the Herceptin to kinda pool in the area of my armpit and upper arm.  Dr. S from UW said that a lot of the t-cells (Herminator-2) cells are congregating in the lymph nodes there since my injections go in that left arm.  It makes sense that the Herceptin would do the same since my Herceptin goes in that arm as well.  That's my interpretation anyway.

I'm calling my oncologist, Dr. K., tomorrow and will report on the lymph in the groin and also the pain in the left armpit and see what he says.  I may ask for a prescription for pain pills and will also make sure that it's okay to travel.  I am supposed to leave for Alaska on Tuesday for an 11-day trip.  I choose this time to go because Eddie is going back east with his dad. 

I'm really going to miss him.  I wish he wasn't going to be gone for that long.

Lymph Node Update and Camano Island

Before I head out to Camano Island and my next visit to UW, I wanted to report on the status of my lymph nodes.  They are still swollen and it *may* be slightly smaller.  Hard to tell.  I still have a handful of those other little nodules around the swollen area.  So, mainly, no real changes.

I have my next appointment at UW on Thursday the 15th.  I will have a CT scan and a booster vaccine.  I guess I'll know more after I get the results of the CT scan.

The good news is that Eddie and I leave tomorrow morning, after his swimming lesson, to head north to Camano Island (no, not north to Alaska - that's later this month), which is one of the San Juan Islands, located about an hour and a half north of Seattle.  We will stay with the mom and stepdad of one of my friends from high school, C.  C. and I worked together at Tastee Treet back in the day.  We figured it had been 28 years since we saw each other - and were lucky enough to reconnect on Facebook.  C. is an ovarian cancer survivor and her mom had breast cancer five years ago.

C. brought her boat (for skiing and crabbing) with her, to park at her mom's house.  We plan to go out on the boat, enjoy C.'s cooking (she owns her own restaurant in Tehachipi, CA), and chill out.  C.'s mom and step dad have a wii and C's stepdad has a Harley and said he'd give Eddie a ride if he wanted.

I  am sooooo looking forward to it!

Saw My Oncologist's NP today

I saw my oncologist's nurse practitioner today, to ask about the other little nodules I have near the swollen lymph nodes.  H. thought that they were also part of the lymph system and that they were swollen because of "congestion" or as a kind of spillover from the larger nodes.

H. measured the swollen nodes, took a picture of them and then just asked how I was doing otherwise, and what the plan was in the near future.

As far as I know, it's stay the course with Herceptin, until I'm done with the major portion of the clnical trial.  If the caner is not under control yet, then Dr. S from UW thought of maybe starting Avastin.  But, in the meantime, all I'm doing is waiting to see what's happened after "hermination" (the t-cell infusions).

I do think that the swelling in the lymph nodes has gone down a little bit.

I also had an echocardiogram today.  No news yet - I presume I'll get a report next week some time.

No other news, really.  Have a great 4th of July!

Lymph Nodes Spawning New Nodules?

Yesterday, on my way to softball, I felt around behind the swollen lymph nodes - I have some swelling that's behind my shoulder (maybe the latissimus dorsi area?).  And discovered about 5 or 6 smaller (maybe half a centimeter) nodules surrounding the larger swollen lymph nodes.

What the heck?

My guess is that these are all regular lymph nodes that are also inflamed because the fight between the Herminator-2 cells and the cancer cells is going on there.  Call it a skirmish on the outskirts of a bigger battle . . .

I'll call one of the study doctors on Monday and see what she says . . . maybe even my own oncologist as well. 

UW Clinical Trial - Visit 7

Apologies for not posting sooner.  It's hard for me to post when I'm traveling . . .

I received my Herminator-2 cells on Thursday - all 16 billion of them!  They weren't sure if that was the most that anyone received in this trial - or the second most. At any rate, it was a lot!  : ) 

They said I might feel flu-like symptoms, namely chills and a fever.  It didn't really hit me until later (I got my t-cells from about 2:30-3:00pm) - not really chills.  I just felt chilly and then I felt my forehead about 9pm and decided it was warmer than usual.  So, I took Tylenol.  I took some again the next morning and then mid-day, but didn't really have a fever after that.  I have only been taking Tylenol since then mostly for the pain in my lymph nodes.

My lymph nodes became a bit more swollen and that whole area is red - with even a bit of bluish-purplish areas.  That's a good thing.  It means the Herminator-2 cells are at work in those lymph nodes releasing cytokines and hopefully killing those cancer cells.  I'll keep y'all posted about the status of these lymph nodes.  My hope is that they start shrinking; they said that it might take a couple of weeks.

I asked Dr. S how they would know whether the t-cells (Herminator-2 cells) they harvested from me where the ones that my body started creating after I received the anti-Her-2 vaccinations.  Dr. S replied that they don't know for sure.  However, they do measure something (wavelengths?  frequency?  something?) in my blood before I get the vaccines and they measure it afterwards several times.  I guess this wavelength?/frequency? changes when there's these t-cells.  But I won't know about these for awhile. 

So, fairly minor side effects. I have been having trouble with the bottom of my feet these past few weeks - my heels feel bruised and that tenderness extends up into the arches of my feet.  I think that it might be plantar fascitis. I talked to my physical therapist about it and she said to do runner's stretches for the achilles.  So, I've been doing that and massaging the tenderness.  They did say I might have muscle aches.  Is it due to my shoes?  I wore Keens all winter.  Starting wearing Chacos more regularly a few weeks ago. Could it be the Chacos?  Hell if I know.  I just know I'm tired of the achiness. 

I played softball today, though.  My left big toe wasn't as sore in my shoe as last week.  And, I could throw without tweaking my shoulder.  I batted 3 for 4 today and my team won 19-6!

UW Clinical Trial - Visit 6

I forgot to post about my last visit to UW.  In the end, it was a bit of a bust. I  hadn't read the protocol for awhile.  And, the study staff did not remind me of one important fact:  when I received my t-cells, I could not get Herceptin within six days of my t-cell infusions.  So, last Monday, I got Herceptin.  On Thursday, I informed the UW study group.  They replied that I couldn't get my Herminator-2 cells that day.

Damn.

I kinda kicked myself - but on the other hand, I hadn't read the study protocol in a couple of months.  I also hadn't referred to the calendar of visits they gave me.  They also didn't say anything to me.  I don't, in fact, remember anybody saying that I couldn't take Herceptin when I got my Herminator-2 cells.  And, they didn't remind me that I couldn't last week or during leukapheresis. 

So, a miscommunication on their part. 

But they also said that I would've received the maximum dose of Herminator-2 cells for t-cell infusion #2.  Apparently, the lab is doing a great job in replicating my Herminator-2 cells - either that or I produced a good number of them or some combination of the two. 

So, they expect that I should get the maximum number of cells this week.  Which is about the same amount - or more - than some other people.  And, they could use the cells they made last week for study purposes.

So, all is not loss.

Except that I don't have Herminator-2 cells that my own body produced to kill the cancer.  Crap.

But I will make sure I get all the Herminator-2 cells that I can get this week.

Live and learn, eh?

In the meantime, there are indications that the first infusion of Herminator-2 cells are doing what they need to be doing.  The doctor, Dr. S., said that the swollen lymph nodes under my left armpit might get even more swollen.

They are.  The swelling is red.  I can feel the heat radiating from them.  Dr. S saw this and said that this is the reaction they want:  an inflammatory response, because the Herminator-2 cells were infused in my left arm and they traveled to the left lymph nodes, where they encountered cancer cells.

So, the inflammation (from what I gather) is caused from the Herminator-2 cells fighting the cancer cells that are in my lymph nodes.

Go get 'em. 

I like my new bedroom . . .

I spent most of yesterday "putzing" in my room and getting it back in order after repainting it last week.

I'm happy with how it turned out.  It feels like the room is larger (lighter, warm colors) and also lighter.  Like a weight has been lifted from it.

I am mostly tired after my trip north last week-end. My stomach still felt a bit unsettled, even until yesterday, so I ate smaller meals.  Also, this may be TMI for a lot of people, but in the interest of reporting side effects, I figure I needed to put this out there:  I did suffer from constipation, which was a side effect of the antinausea drugs.  I think my digestion system is finally getting back to normal.

Tomorrow is my next treatment for Herceptin and Zometa. I'll try to work in the afternoon.

Today, I'm going to take some stuff that we've been storing in Eddie's room and move it to the garage because now the garage has room after dad built the lean-to/shed storage on the side of the house.  I'm doing my best to declutter my living spaces - and in a week or two, I start decluttering my work space!

I'm supposed to play softball this afternoon, but it's sprinkling here, so I bet the games are called off.

I'm Home

I'm back home from Seattle; my stomach is feeling a little unsettled from the Cytoxan on Wednesday.  I didn't take the anti-nausea meds after yesterday morning and they said my stomach might be queasy for 48 hours.  I wanted to get off the meds, though, as much as possible.

I received my Herminator-2 Cells, all 1.465 billion of them, yesterday afternoon.  I am not having any side effects (which would be fever and chills and muscle aches) from that infusion.  Yay!  I may, however, end up with lymph nodes that are more swollen on that side, particularly since that's the side I get my infusion on.  But it seems the same now.  I'll let you all know if it changes.

Otherwise, I'm just tired.  My brother snores - very loudly - and I couldn't get to sleep last night or the night before, so I'm low on sleep.  That'll be rectified tonight as I'm in my own bed.  Yay!

Tonight, I take Eddie to his school's carnival.  I'm soooo glad the sun came out for it.  It's the first real sun we've seen in days and days.

Anyway, have a good one.  I'll keep you updated.

Countdown to Hermination - 1 day

I'm sitting in my hotel room in Seattle - watching the news that Ken Griffey Jr is retiring (we were just at the Mariners game last night - they won 7-1).

I had my CT scan yesterday, but I wasn't able to get the results yet.  We had P.F. Chang's for dinner (yummy) last night and then went to the game.  Both Kevin (my brother) and I were really tired, but happy the Mariners did so well.  We walked to the hotel room from Safeco Field - about 45 minutes.

I'm feeling a little bit woozy and tired but it could be worse.  I think the anti-nausea meds are working.  I have a bit of a headache, which is a side effect of one of the meds I'm taking (I think Zofran, the anti-nausea one).  I am also taking a drug called Mesna, which is supposed to help protect my kidneys and bladder from the chemo drug I had today.  I also have Compazine in case I feel really nauseous, but so far, so good.  I do feel a little bit "urpy", meaning that I have a bit of a gassy stomach.  But again, it could be worse, so I'm happy.

Hermination is tomorrow - my appointment is at 1pm.  They say I may feel like I have the flu - feverish and with chills.  But if it does what it's supposed to do, yay!

Okay, our neighbors just showed up and they are noisy as hell.  I'm gonna call the front desk.  Sheesh.

A good few days - with some Herceptin side effects

I had my latest Herceptin treatment on Thursday - and felt fairly good the rest of the day. Maybe a little bit of tiredness but not the eye-droopy fatigue I've felt before. I went into my office and printed some stuff off to work at home (not that I've touched it).

Friday, I went on an all-day fieldtrip with Eddie's class. We went to the State Capitol in Salem, then the Mission Mill Museum, and then the Pioneer Cemetery. We walked up to the top of the tower - where they have this huge golden statue of a "pioneer" which can be seen for miles. It was pretty cool but over 100 steps up. We had lunch in the plaza in front of the Capitol.

Mission Mill was interesting but rather than teaching kids about how mills used to work and how wool was made, she kept whizzing the kids through the exhibits (we had a "task-mistress" for a tour guide who kept saying, "okay, we're power walking!" - followed by a really brisk walk to the next exhibit where she'd start talking before we all got there. Then, since the people at the back didn't hear the beginning, we didn't know what she was explaining! That's not a good tour guide - that's giving the tour but not paying attention to your audience, which my students in folklore know is a crucial part of any kind of oral performance. Some of the parents, including me, would salute behind her back - mean, I know, but criminy!)

Then, after a snack, we went to Pioneer Cemetery and saw the headstones for people who died over 100 years ago - some as early as the 1850s, maybe 1845. Eddie had fun because he and the other boys started chasing the girls. : )

Then, we got back to Corvallis around 5pm. I had a great time visiting with the other parents (there were 8 of us and 14 kids). We got caught up, joked, helped some with the kiddos, and just enjoyed the day. We had high clouds, but by the end of the day, it was in the low 60s with some sun peeking out here and there.

By the time I got home, I was really tired. Took it easy by watching TV in my bed. My feet were achey from all the walking.

Yesterday, one of my friends from UAF was in town - she'd come down here to interview a few people in Salem and Portland, then went to Newport to visit an old friend of hers, and we spent a few hours hanging out. We went to Farmer's Market (with my folks and Eddie), then the New Morning Bakery for lunch, and then K. and I went to Fitton Green for a short hike. It was chilly up top with a stiff wind. We got back into town and I showed her all the flowering rhododendrons around the MU Quad and then Central Park, and then we stopped at Trader Joe's - she had to pick up some stuff for a friend. And, then she was off to the airport. It was great to visit with her - it's been a couple of years since I've last seen her. I love hanging with old friends!

I was tired again yesterday evening - just took it easy again watching movies.

Today? I got a good night's sleep - we may go to Home Depot to get supplies for a side shed, I want to grout my mosaic, I need to go to softball practice and sign the roster - I might go for a walk with a colleague. So a full day is in store, putzing around, doing errands, etc. It's supposed to be 70 and sunny. Got to get out and enjoy myself!

Overall, I haven't quite the fatigue I had with previous treatments. I'm still tired, but not the droopy-eyed fatigue. I still have the swollen lymph nodes - I thought there had been some decrease in the swelling last week, but now it's about the same. I'll call tomorrow for my tumor marker results from the other day. I credit the new herbs that Brodie gave me - they do seem to help with my energy level.

Happy Sunday!