Long Overdue

Ok, I lost the beginning of my last attempt! I guess I'll refer to that as the long attempt, which is basically a whine. Anyway, my eyesight did improve and I now have corrective lenses, but my, optic nerves are permanently damaged, so the improvement is good, I'm still unable to drive and I also have the shakes, so most attempts at communication via computer usually end in me trying not to throw the computer/phone, etc out the window. Also, I am sadly awful when it comes to anything computer.
So, The YAY part of my whine is that I am now the proud owner of an ipad2 as of yesterday! So far, I love it and I think it suits my inabilities (due to both cancer and natural ineptness!). The first thing I wanted to do was update my blog, but this is going to be short becauSe I have to go to the doctor. My oncologist is retooling my current treatment plan, so more on that later.

I'm 37!

First of all, today was my last day of radiation. They made my treatment extra long, I think. I am really glad for it to be over with. Quite painful. My head is still scabbed up, itchy, bald and unattractive. Scott has been lathering on lots of aloe vera which helps for a few minutes. I know this is a milestone but it was hard to get excited about it for some reason.

Scott and Annabel and I had a great Thanksgiving at home together. Scott made white chicken chili and we watched some Disney movies on TV; Mary Poppins, part of Snow White and Sleeping Beauty. We didn't watch them all day, they were sort of just on in the background.

On Tuesday, I turned 37. It was a pretty good day. I wasn't sure how I would feel but I was pretty happy most of the day. Scott and I dropped Annabel off at school. It was their Thanksgiving lunch day. She wanted me to hold her hand to walk inside. That was very special for me because I don't ordinarily go in with her. At radiation, one of the ladies tried to give me a cupcake. When I saw my nurse practitioner, I got a chorus of Happy Birthday from she and the nurses. After school, Annabel brought me a handmade birthday card from her class. There were also lots of birthday presents and treats throughout the day. The only thing that went wrong was an attempt to go for sushi. We got there; sat down; I was too nauseated; we left. Scott picked up some Japanese hibachi instead. I threw up (at home, in the toilet). Other than that it was a really good day.

We had a small family celebration on Saturday for my birthday, our anniversary and Thanksgiving. Dad and Gail, Jeff and Suz, Kim and Karen were all here to celebrate with Scott, Annabel and me. I ate a ton of food -probably more than since I've been home from the hospital -including a slice of Magpie's cake. Yum. I hit the wall and then I hit the bed. It was great to have everyone here for a holiday. We had lots of good visiting and lots of good food. Unfortunately, Karen had to leave on Sunday. But I'm looking forward to seeing her again in December.

Next up is neupogen shots next week to boost my blood counts. We are still preparing for the PEG feeding tube though maybe it is still up in the air. I still lean towards not getting it but I will do it with the encouragement of my doctors. I have scans scheduled soon to check the cancer in my body. I have something else scheduled to check the level of cancer in my neuro system. Both those will dictate the next course of action. Other than that, I am just working on recovering which means mostly sitting in my chair. I'm starting to get antsy so I think that must mean that I'm getting better. My eyesight is still the same. Scott is working on some different ways to help me with the visual impairment since I'm not able to communicate via computer or text without assistance, can't drive. In general, I can't see, the TV, or anything else. This is probably the most frustrating part of my life.

I spoke with Shannon today about the benefit. I'm shocked by how much work is going into it, how many people are involved and how generous everyone is. I am touched. I am looking forward to seeing everyone.

www.hallraiser.com

http://www.handlebar-online.com/

Healing

Hi. Katherine’s sister Karen here. I’m taking dictation.

I know I always start with this, but it’s been a long time. I’m feeling better in the last couple days and just want you all to know I appreciate your well wishes.

On Oct 7, I had my Duke surgery for implant and lymph node removal. I spent one night in the hospital. Everything went well. Prior to any of the Duke consultations, however, I had been having lots of headaches. I was worried about that.

After the surgery, I left the hospital to recuperate a couple more days in Durham. That Sunday night, I ended up back in Duke’s ER. My headache was out of control and I was having spells of disorientation and confusion. I was a guinea pig for a week while I was there for observation and tests. They did not find anything while I was there. My tests included another brain MRI, more scans, a lumbar punch. We drove home that Wednesday after a follow-up visit with my surgeon. I got a good report from him –decent pathology –not all clear but a tiny bit of cancer left in there which we expected. My headaches were controlled with medication at that point. I felt like we were waiting a lot while we were at the hospital but we had a lot of laughs. Courtney visited for two nights. She smuggled beer in for Scott and she brought me jammies. There was also an Oodles of Noodles restaurant around the corner where we ate the whole time. The nurses there were awesome.

We spent the night in Charlotte and got home on Thursday. We tried to unpack, acclimate to being home again after all that time and enjoy Annabel’s company. I got a call from Dr. Fanning on Friday afternoon late. She explained the results of the lumbar puncture. I have carcinomatous meningitis. Essentially, my cancer has spread to my spinal fluid and head. There is no tumor. It’s free floating cancer cells.

Because of my new diagnosis, I had more consults lined up with other doctors. The plan was to install an Omaya port in my head to administer chemo to the closed brain system and also get a power port like the one I used to have for administering whole body chemo and drawing blood.

The day I saw the neurosurgeon, I wasn’t feeling well and when I went to his office for my consultation, I was in pain and throwing up, still disoriented and confused. It was very frightening to be aware of being that far away from my brain. I remember trying to talk to my doctor and the words weren’t coming out. So probably the reason I spent the next time away from my body. The neurosurgeon sent me to the ER to check in to the hospital so that I could get some pain relief. I was there for 10 days mostly unaware. I was having seizures while I was there. I had lots of visitors and caretakers.

Accompanying me home from the hospital were some mechanical asssssisstances. A wheeled sitting device, a rubber footed shower sitting device, a portable terlet – all of which, I must say are most convenient. They have been used.

Since I’ve been home, I’ve been slowly coming around. I’m going to radiation everyday right now. They’re trying to get me to have a peg feeding tube. I’m resisting but I guess I have to do it –next week probably.

My eyesight has deteriorated to the point that I cannot read, watch TV or type on the computer. The doctors are hopeful my current course of radiation and chemo will cause whatever is stopping me from being able to read, watch TV or type on the computer to go away. I am not blind but my vision is very impaired. I can see shapes. So obviously, I have an excuse for my late blog this time. I was able to go to an ophthalmologist this morning for a check-up and he says that everything works well it’s just the way it works together so we’re still hopeful the situation will resolve itself.

I have six more treatments of radiation left. This time around the radiation has been very uncomfortable. I have to lay on my stomach on the table with my head clipped in. Did I say it’s very uncomfortable?

The last week or so my head has been scabbing up in preparation to fall out. So the past few days, I’ve been sitting around picking my hair out. Today, Karen and Scott cut and clipped it so I’m in less pain now although bald with a crusty head. Yum. This project involved a sheet and a chair and some scissors and some clippers and a shower at the end…. and then a nap –the emotional stress was too much. Annabel tells me she does not like it but she’s glad to have the bag that I used to collect my hair the past few days. (Karen editorial –she would not have used a bag had I not provided a bag –it would have been all over the floor.)

Other than all of this business, I am very much looking forward to my 7th wedding anniversary in a couple days on the 20th. Scott has taken phenomenal care of me and Annabel during this time. You never know what you sign up for when you get married. He has bravely and lovingly taken charge of our family situation and I love him very much.

Annabel is in preschool now. She seems to really be enjoying it. She has a friend. She is getting sassier every day. The other morning on our way out the door, she exclaimed, “oh, shit, my sunglasses.” Scott and Karen didn’t even hear it. I told her to say “oh, no” instead. We haven’t heard it again but I know it’s on her mind. She has been thriving with all the extra attention and company we have had in the house. She’s taking great care of me too. Last night she tried to help feed me and spilled chicken noodle soup all over my shirt. She is very sweet and cute and very busy.

I’m very humbled and honored about the upcoming Hall benefit taking place on Dec 10th. It makes my heart happy and spirit glad that so many people would think of us. I look forward to seeing everybody there.

The Plan, Revised & Ever Changing

This post is LONG overdue.  I started to update several times, but never finished. 

Lots has happened since my last post and I won't go into too much detail because I'll never finish!

I started chemo in late July and had two treatments before I had the joy and privilege of going to First Descents to learn to kayak with other cancer survivors (more on that later!).  The first two treatments were really pretty easy.  I bounced back easily and didn't feel too bad on the bad days.  Despite feeling good, when I came home from camp, my counts were low and my next treatment was postponed.  Since then, I've had three more treatments, each one worse than the last.  The effects of chemo are cumulative, but I didn't expect to feel as bad as I did.  My last treatment was last Thursday and I feel like I am just starting to emerge from the haze.  My biggest complaint lately has been a neverending banging, throbbing headache.  An MRI ruled out cancer, so now I just have to figure out what is causing it and get it under control.  My oncologist has suggested that it is from tension.  What's there to worry about?  Ha, ha.

I also have a new team of doctors at Duke University.  I got a 2nd opinion there just after I came home from First Descents and have been back two times since.  My oncologist there wanted me to have a few more treatments and then come back for scans there, which happened on the 15th of this month.  My response to chemo has been good and my tumors have shrunk.  This is great news, but I will admit that I was disappointed that they were there at all.  I keep thinking that someone is going to come into the doctor's office and tell me that it was a big mistake and there is no cancer after all.  I met with a surgeon on the day of the scans and he is going to operate to remove lymph nodes on the left side.  He is also going to remove my implants and take out a chunk of skin where the rash was before chemo sent it on its way.  I will have the surgery at Duke in early October and will just have to spend one night at the hospital if all goes well.  I went back to Duke again on the 20th to meet with my oncologist there as well as the radiation oncologist for a 2nd time.  The original Duke planned involved some major radiation, but when I met with the radiation oncologist on Monday, she told me that she wants to wait and see my pathology after surgery to see whether she will want to zap me at all.  There is lots of area to cover and she can't re-radiate my supraclavicular area because it would likely cause nerve damage in my right arm and/or paralysis.  She is also worried that my cancer doesn't respond to radiation because she is sure that these tumors were growing while I was being treated the first time.  That is very scary stuff.  She also mentioned that I would probably have more chemo after surgery.  And I will cross that bridge when I come to it.

Annabel is doing great!  She keeps me laughing and keeps me on my toes.  Her favorite thing to do lately is play with her babies.  She feeds them, undresses them (I'm in charge of putting the diapers on and getting them dressed), puts them on the "bus" (lines up the dining room chairs), puts them "a sleep".  Scott also got her a choo-choo and she has been playing with that a lot.  She still enjoys painting and coloring, too.  Her favorite show is still Max and Ruby if you ask her, but thankfully, she's willing to watch a variety now and probably watches too much TV.  She is not in school....yet.  We postponed it because I thought I was going to have to go to Duke for five weeks of radiation.  Now that seems to be out, we will get her started in preschool soon.  I hate that she will start late, but I think she will like being around other kids again. 

I have lots more to say, but time has gotten away from me again and we are finally going camping again!  I have to go and get ready.  More later!

The Plan

Lots has happened since my last post.  My calendar has been full of doctor's appointments, with many more upcoming.  Most notably, I saw my oncologist on Wednesday last week and we now have a plan of attack. 

On Thursday, I will have my first chemo and the plan is that I will have 3 week cycles; I will get chemo once a week for two weeks and then have a week off.  I will be on chemo indefinitely.  My hair will fall out (again).  I am not thrilled about this, obviously, but am willing to do what it takes to knock it out.  Am I ready?  I think not, but there is nothing that I can do to get that way.  I am ready to get my cancer under control, but not looking forward to the process.  It has been a rough few weeks, to say the least.  I vascillate between trying to wrap my head around this mess and trying to keep my mind off of it.  Not sure which is more detrimental, but it is difficult to cope with my new diagnosis and upcoming treatment.  I feel like I have just recently gotten back on track with my health and am finally feeling good, so it is quite a blow to face this crap once again, knowing that I will not be feeling well and will have to learn to cope with side effects all over again.  This time around, I will be getting two different drugs, Ixabipilone and Carboplatin.  It will allegedly be more tolerable than last time because of the dosage. 

When I saw the radiation oncologist a few weeks ago (just after my last post), she was not hopeful about treating me with radiation to zap the cancer out of my lymph nodes.  She told me at the time that she wouldn't rule it out and would think about it and consult with other colleagues, but she felt that the cancer might not be confined to the areas that showed up on the PET.  She was very concerned about the rash on my chest and though I had an upcoming appointment with the dermatologist to have a biopsy, she was able to get me in to see the surgeon for a biopsy immediately following our appointment with her.  The results were back the following day and it turns out that the rash is cancerous.  It is breast cancer that has metasticized to my skin, called lymphatic dermal invasion.  Apparently, it is tough to control, but I will have 10 radiation treatments to zap the rash and hopefully stop it in its tracks. 

On Friday, I will be going to Duke to meet with an oncologist there for a consult/second opinion.  My doctor has been very supportive and helpful in facilitating the appointment and getting me there quickly.  I had hoped to find a clincial trial with PARP inhibitors, but didn't meet eligibility requirements for any that I found (with lots of help from a few different people).  By going to Duke, I will see a specialist and will then be on their radar should some new and promising treatment become available.  She will be working with my oncologist and together, we will forge ahead with a treatment plan. 

I am happy to report that I will still get to attend First Decents, the kayaking camp that I signed up for and have been looking forward to attending for months.  My doctors think it's a good idea for me to go and I hope that it will help me get my head straight for the battle ahead.  Despite my excitement, it is going to be positively brutal to get on a plane and leave Scott and Annabel behind for a whole week.  Getting ready for my trip has been a good distraction and I'm headed to the attic today to find some ski gear that will serve a dual purpose.  I love gear!  I think I'm just about all set between recent shopping trips and stuff I already had.  I'm concerned that the (unknown) chemo side effects will hit just in time for my trip, which is my chemo "off" week.  The trial nurse said that she would schedule me to come in and get IV fluids the Friday before I leave to hopefully help me out.  I don't want my trip to be fouled up with feeling foul!  I think I can also expect to lose my hair while I'm there, which I'm sure will be especially tough being away from home.  I will be with other cancer survivors, so at least it will not be shocking.

Annabel is doing great.  She is talking up a storm and singing and dancing and coloring and painting and playing with her babies and using the potty (still working on poop!) and going to "school" and camping and travelling....we have had a busy and eventful summer so far.  I am not quite sure how to prepare her for what is coming.  She was only 17 months old when I was first diagnosed and turned two a month after my last chemo treatment.  At 31 months, she is so much more aware of what is going on and is more perceptive than I sometimes give her credit for.  I am sure that she will adjust to our "new normal", but I hate thinking about the effect it will have on her.  I don't want her to fret or worry because I'm sick.  Last week, she spent two nights with Scott's parents to visit and so that Scott and I could go to my Wednesday appointments and I had a CT scan on Thursday.  I was so sad and upset, I felt like it would be hard to keep it together when she came home.  I was really worried about it, but she was just what I needed to pull myself together. 

I am not sure how Scott is able to keep it together, but he is doing an amazing job of taking care of me and Annabel and the house and the dogs and of course, work.  He has been with me to all of my doctor's appointments and is able to ask the right questions when I am too stunned to process what is going on.  He comforts me when I'm down and knows exactly what to do to bring me out of a funk.  Or hysteria, for that matter.  There has been a fair share of hysteria lately!  I could not do this without his love and support.  Cancer aside, our life together is pretty darned good.  I could never have imagined that any of this would happen, but I am incredibly lucky to have him by my side for this wild and scary ride.

To keep things upbeat, I am going to mention a few things I'm doing to fight the fight before chemo starts.  I am still going to oncology rehab to exercise.  I have missed a few days due to doctor's appointments, but I go whenever I can and do as much as I can while I'm there.  The trainers and nurses involved in the program are awesome.  They are encouraging, supporting and have been really sensitive during my diagnosis and this waiting phase.  I can't say enough good things about this program.  It really is set up to help participants to succeed in developing healthy exercise habits.  I hope that I will be able to drag myself there once treatment starts.  I have already had rough days; last week, they had to go and find some tissues for me because I cried half of the time I was there.  I almost didn't go because I knew it would happen, but F it, I am going to make things better for myself and this cancer shit is pretty raw.  Exercising while crying is nothing compared to walking around bald.  But I digress....I am also trying to overhaul my diet.  I am really freaked out about making things worse and my appetite is still not "right" from my last stint with chemo.  I will eat whatever is in front of me, but when I am left to my own devices, I can't think of anything to eat.  I am cutting sugar out, reducing the amount of meat I eat and upping the fruits and vegetables.  I rarely drink diet coke anymore and have switched to unsweetened tea or water if we are out to eat.  My favorite healthy concoction so far is sauteed spinach and roasted beets over quinoa, sprinkled with goat cheese.  Pretty impressive, huh?  I am far from where I need to be with this effort, but it's getting better.  I am trying not to beat myself up because I think most things are fine in moderation.  I drank half a pitcher of margaritas last weekend at La Paz.  That was naughty, but if you have ever had a margarita there, you would understand. 

Tomorrow, I have an appointment to get fitted for a compression sleeve to prevent lymphedema.  I HATE nude pantyhose and this will be like wearing thick nude pantyhose on my arm.  In the hundred degree heat.  I saw a physical therapist a few times who prescribed the sleeve as a precautionary measure.  I have been dragging my feet about getting it, but my hand has started swelling in the past week, so I need to get one, like, yesterday.  At this point, the swelling is minor and would be imperceptible except that I learned what to look for from the PT.  I also need to make an appointment with her as I cancelled the last one for my biopsy and haven't rescheduled yet.  I am curious to see whether my measurements have changed since I started exercising.  Just another unpleasant thing about this whole situation.  Waaaaah!  I should add that there are sleeves available that are not "nude"; just not sure that I will invest in a color or pattern right off the bat.  These things aren't cheap. 

My update might be full of whine, but I still think I have a pretty good attitude, all things considered (I didn't even write about my trip to the dermatologist!).  I am lucky to have the love and support of my family and friends, so thank you all for helping me do this!  Also, though things are not great right now, don't be afraid to ask me questions or call me.  I don't remember who knows what half the time, so remind me to update you if I don't and you want to know what's going on.  And I'll try to update more often.

Hope!

I was able to get an appointment with my oncologist this afternoon.  This is a feat and a credit to how wonderful she is because I was the last appointment on Friday afternoon before she leaves for vacation.  Up to this point in my diagnosis, I have felt sort of shuffled around and it didn't help that I had a new surgeon, too.  It helps to hear bad news from someone who you know and who knows you. 

My oncologist got right down to business.  Her best case option is sort of "outside the box".  She thinks that there is a possibility that I may be able to have radiation to stop this cancer in its tracks.  It is not a sure thing; I have to meet with a radiation oncologist next week to see whether this is an option for me.  I guess it has to do with the fact that the cancer is in a few different places.  My doctor has another patient in a similar situation that is going through this treatment right now.  This would be GREAT.  Radiation is sort of scary, but I would take it over chemo any day (as long as it does the work!). 

I also asked about the possibility of specialists and/or clinical trials outside the area.  She is working to get information about any trials that I may be suited for at either Duke or UNC, and I should hear something about this next week.  Not only did I get a last minute appointment, my doctor is going to communicate any pertinent info via email WHILE SHE IS ON VACATION.  And I already thought she was awesome.

I have this rash on my chest (left boob) that has been there for over a month now.  I had her look at that and now I need a biopsy to make sure it isn't some kind of manifestation of my cancer.  The treatment for that sounds absolutely awful, so I am hoping that it is some kind of fungal infection.  The doctor suggested this as a possibility as well, so she prescribed some kind of topical cream to use on it until I see a dermatologist next week. 

So, also, part of my pathology hasn't come back yet, but there is the possibility that one of my receptors is positive this time around.  That would be good because I would be able to take tamoxifin to keep cancer at bay; this is something that was not an option the first time around because my receptors were all negative.  I am anxious to get the results.

I feel like I got some good news with lots of possible options today.  I really expected to go in there and leave with an appointment to get another port and start chemo next week.  Really.  So it was a pleasant surprise to walk away from the appointment with hope that treatment might not be chemo for an indefinite period of time.  Because basically, if the radiation thing doesn't pan out, it is likely that I will have to have chemo for the rest of my life.  That doesn't sound so good.

It's baaaack.

I had a biopsy on Tuesday and went to the doctor today to get the official news.  The cancer is in my lymph nodes under my left arm and above my collarbone on the right side.  Apparently there are other suspicious areas as well, but just in the lymph nodes. 

The next step is a visit with my oncologist to formulate a plan of action.  She is going on vacation next week and I'm really glad that she was able to squeeze me in this afternoon.  I didn't want to have to wait an extra week to get started.  I will be having chemo, but not sure yet what kind and how often.  My guess is that it is going to be an indefinite situation and that they will just switch it up as needed.  I'll learn more this afternoon. 

This time, I plan to get a second opinion.  I have absolute trust in my oncologist, but I know that there must be someone, somewhere that is a specialist or is studying my particular kind of cancer.  Hopefully, I will be able to find a promising clinical trial.  There is a new drug that hasn't been released by the FDA yet that has shown lots of promise for people with the BRCA gene and who have triple negative breast cancer.  We'll see.

Yesterday, I still wasn't feeling great from the biopsy that I had on Tuesday.  It is hard to shake that anesthesia!  I went to oncology rehab anyway and I'm so glad that I did.  I thought I would take it easy, but the trainers only modified one exercise for me.  I did the regular workout otherwise, and left feeling good.  I know a big part of it is getting there.  The oncology rehab program lasts 10 weeks and I will stick with it if they will let me, and I can't think of a reason why they wouldn't. 

I think I'm doing alright dealing with the situation.  I think I mentioned before that at least there is less shock with this diagnosis, so I feel like my head is on somewhat straight.  Ativan helps when needed; I have had some panic attacks, but I think that is to be expected.  The waiting part before treatment is especially hard mentally and emotionally because there is no action yet.  Once treatment starts, there is at least the confidence that chemo is doing its job.  I am definitely keeping my normal pace for the time being.  Things will change soon enough.

Still no update on the fun stuff that's been going on lately!  I will get to that once this whole diagnosis thing is over and my treatment plan is in place.  I'll keep you posted!