Monday, February 22, 2010

Scene of The Crime

I kind of skipped over my feelings about going back to Seattle in my previous post. The truth is it is all very heavy on my heart. I am anxious for my BMB results. I am anxious about what kind of year two they have planned for me. I am anxious that year two may not be that much more restrictive than the last.

It really feels like going back to the scene of the crime. I have been thinking about what my day was like a year ago constantly for the last several weeks. What tests was I doing? What news was I receiving? How was I holding up? How crazy was I driving my family and friends?

A year ago was the hardest time in my life, ever. I have not reached a point of not recalling so vividly how unpleasant it was. I have yet to share the nitty-gritty of transplant. I suppose I have not been ready. But I will be someday.

This is also why I could never stay at The Pete Gross House again. And why I can't stay at the new long-term follow-up housing facility. I just can't be immersed in it 24 hours a day. They offer short-term housing for people who are back for their anniversary follow-ups. But I can't see it, feel it, smell it, and be in it again. Ever.

The Seattle List

It is exciting, in a way, to be going back to Fred Hutch and all it signifies. It is very triumphant that I have made it this far. And we are exciting to be preparing "The Seattle List". It is a comprehensive list of questions and topics to review with them. Most are desires for lifted restrictions, or at least not as oppressive.

It is very challenging to follow all the rules! Hopefully they will be significantly modified after this one year anniversary mark. I am looking forward to some normalcy and fun when I am feeling well and have the energy!

So please pray for me, or send positive thoughts. My life seems so on-hold and I want it back!

And Again...

Again, sorry to leave you hanging! The last week has been filled with the musical chairs of family sickness. First Brennan and Craig with a cold two weeks ago. Then John Paul last week (it was only a three day week at school and he was home sick, along with five other classmates) then it was my turn. Ugh, my immune system is still so weak. It sent me to bed for three days. A common cold....

I had to cancel three big medical appointments: dentist, surgeon, and oncology. I will reschedule them today. They were all significant and it may be hard to get back in this week. But sharing a cold in the dentist's and assistant's face, and especially into the Cancer Treatment Center (surgeon and oncologist) is just not happening. Most everyone else in there are also immuno-compromised from treatment.

So here's the update:

1. My incision has made some progress but I am not sure if it is enough. I do not know if it will satisfy the surgeon and avoid a second surgery. When I saw her last week, she said if it was not healing significantly by last Friday's appointment, which I had to cancel, that she would need to take me back in the OR, "clean it out" and re-suture like crazy. She said this almost never happens, but as a breast cancer surgeon, the only time she sees it happen is with patients who have had a lot of chemo and other heavy medical issues. Plus I am immunosuppressed, which really complicates healing. That's me! So I have been packing it, continuing my antibiotics, and waiting for miracles....

2. I STILL don't know the final results of my bone marrow biopsy. Apparently Seattle is holding them and all will be revealed when I am there in two weeks. I think this is rather unfair. But I guess it's part of how they get us transplant patients to make the trip back.

Monday, February 15, 2010

The Medical Issues of Others in The Robertson Household

I will be writing soon about others in my life. It just has taken awhile to update you on my issues from the past two plus weeks, and I am not yet done! So here is a break from reading about me.....

John Paul's nosebleeds continue to be a problem. He's seen our PCP (you rock yet again, Dr. LaSalle) a couple of times about this. She has recommended, and we have done, all the standard efforts to reduce his bloody nose frequency. They did become less frequent for awhile, then returned with a vengence in mid-January. Dr. LaSalle had recommened that if the frequency spead up again that we get a CBC (Complete Blood Count) to see if that gave us any clues. This, of course, was something I did not want to do. A blood draw is naturally terrifing for a 7 year-old. I also had an irrational fear that it would show he had leukemia (even though my leakemia is not hereditary. But doctors had told me that the chances of either of my children inheriting Factor V Leiden from me was slim to none, and that both getting was almost statistically improbable, and they both did). But after a four inch clot came out one morning, I threw in the towel and told myself to get a grip on my fears and do what needed to be done for my son.

He was a trooper at the blood draw but scared none the less. Children naturally fear if they lose blood or blood is taken that they will not have enough blood left in their body. Oh, it hurts to see your child in fear and hurts a little more to know that your decision as a parent caused it.

We did it last Thursday so the results were in when I saw my PCP on Friday. Much to my relief, nothing was terribly askew and nothing hinted of leakemia. So next is an ENT, who he will see next week. Poor baby.....

Then there is our dog, Lucky. When we got home from our overnight in Idaho two weeks ago (read on for details), we has really limping. By the next day he could put no weight on his left hind leg. Once again I threw in the towel and took him to the vet. (Going to the vet always signals a big bill in my mind.) $150 later I am told he has either torn or blown his ACL. For a small fee of $450 we could get x-rays to confirm that. Then start meds, then repeat $450 x-ray series. Then most likely a $3000 surgery. They graciously allowed me to skip x-rays and start meds then come back for a re-check. For the next two weeks to come, Lucky needed his meds twice a day, had to stay inside, must go out on a leash to do his business, and could not run, jump, play, etc. At least I have made it through the first week and he does seem somewhat better.

Our cat, Pepper, also has a chronic problem. I won't bore you with the whole story but I threw that towel in the next day. We only get charged for a re-check but she now needs a special compound medication. It is ready the next day at the compound pharmacy. I am sure there is a mistake when I pick it up. Nope. But she doesn't get much better so I am to pick up a new compound medicine for her tomorrow.

So much medical crap easily rocks the stability in a family. So I am literally praying for everyone in my family regarding their treatments and follow-ups. If you have time, please throw in a quick one when you pray. The edge is within view.....


Okay, just a couple of more holes for me to fill in on the latest in the medical front.

Last Friday I saw my Primary Care Provider (PCP), who I see at least once a month. This scheduled monthly visit allows me to work with a terrific doctor (Love you, Dr. LaSalle!), who follows up on everything and essentially coordinated my care. She allows me to take care of alot of things by phone with her, which I greatly appreciate. But monthly face-to face is very helpful.

Interestingly, one of the main things she does for me is be my insurance coordinator. I cannot see a specialist, get anything other than a routine tes, and even think of a surgery or procedure without advanced authoriztion from my insurance company. Being my PCP and having to deal with my insurance company is no small task. Yet she keeps me, and cares about me. We have even become friends of sorts. Our children attend each other's birthday parties. She is a good woman professionally and personally.

Okay, back to last Friday. We go over the results of my way-too-many recent tests. We cover the refills I need. We discuss the notes that my Specialists have sent. We review my mental health (A new post to come). Finally I ask her to check my surgery incision because it is bothering me.

It is infected. Not good news for anyone but as an IS (Immunosuppressed) person, this news is scary. Believe it or not, a simple infection can possibly kill an IS patient. I go to the pharmacy on the way home (I am there at least once a week) and pick up my heavy-duty antibiotic.

That night the area is really hurting me. I take off the dressing to look and it has ripped about half open. Uh oh. I put a new dressing on and decide to think about it.Maybe it will go away if I don't think about it. Saturday morning I call the breast surgeon on call and you probably can guess what she said. I ignore the instructions, go to John Paul's baseketball game, hang out with the fam, and head off to get a haircut and then go to Mass. By the time I get to the hair salon, I am REALLY hurting. I go to the bathroom, peel the dressing back, and now it is totally open. And icky stuff coming out. I skip the haircut and call my Catholic sponsor Tamme ( a great story to post later, and it's not the AA type of sponsor) and tell her I won't make it.

I go home and hang out, watch movies, suffer and worry.

Sunday was a long day.

I see my breast surgeon at 1:00pm today. I don't know if I can sleep anymore, which is not that unusual in itself, but I am seriously hurting. I have developed a significant aversion to hospitals and avoid going there, even the ER, if at all possible. Who doesn't right?

I will probably get in trouble. It's not the first time......

Saturday, February 13, 2010


Yesterday I found out that the pathology from the breast nodule removal was NEGATIVE!! As my Aunt Sue said, "Sometimes Negative is good!" Ah, I am savoring this success and step in the right direction. Congrats to me and to all of you behind me!

Some of the test results are also back from the BMB. So far, so good. At this point I am waiting on a very specialized test to detect the presence of the Philadelphia chromosone. If that is there, then the leukemia is around the corner. If not..... A girl can dream, can't she?

I have also undergone a bizillion tests in preparation for my Seattle check-up. While they are "normal" as for a non-transplant person, they are "normal" for me for the most part. A few have been disconcerting and we'll be game-planning in Seattle. But no crisis. Hooray!

I had a substantial improvement in my Lung Function test. For what it's worth, I went from a score of 50 to a 74. 80 is the normal range. Holy cow! More good news!

I am looking forward to my medical schedule (which is also most of my social schedule, unfortunately) slowing down. I have had up to three appointments a day. It is also rather expensive with co-pays and over-allowables. Someday I will enjoy not being such a complete financial drain on my family. I plan on writing a post about my average monthly medical costs someday. Some of you have mentioned that you are curious as to what it costs to be me. Expensive sums it up. But better than dead.

Another progress report is that I am now down to 38 pills a day. This is 20 less than immediately post-transplant. And I am line-free, so good-bye PICC's and Hickman's.

Finally, I have successfully gained five pounds back. I am not up to 97!

I know I said finally, but I would like to close by thanking all of you who have prayed, supported, and helped me and my family through thios latest round of medical events. I literally couldn't do it without you!

Tick tock, tick tock....

I was doing the tick tock, tick tock leading up to the BMB and surgery. I had several days of time in the present, then back to the tick tock, tick, tock of waiting for the results. It sometimes seems I am always in a countdown to some medical issue or the waiting game for results. I dream of not having this cycle at all and am hopeful that after my Seattle trip that there will be more time inbetween.

And Off We Went

The day after surgery was a BIG one, long planned and much anticipated. John Paul played in his first official basketball game. And it was a double header. He and his team, The Orange Beavers (kind of like what all the first graders' permanent front teeth look like right now) did a terrific job! It is interesting to me how the refs basically let things move on as long as the players are in motion and not heinously out of bounds. No scores are kept but everyone watching is taking mental note. It is too funny how competitive we are as parents, checking our players out to see if they have a "future". Some other teams were even keeping their own stats. Of first graders. Crazy!

We hightailed it after the game over to Idaho and to Triple Play in Hayden. It is a pretty cool indoor water park with attached bowling, laser tag, putt-putt, and arcade. It is also oh so conveniently attached to a hotel..... We get checked in and off to the party room to celebrate Gabriel's 5th birthday.

Keep in mind this takes some significant navigating for me. Because I am on immunosuppressants to prevent rejection, large crowded places, especially full of kids, is not on my approved activity list. But some things are just worth throwing caution to the wind, right? So a quick in and then a quick out after pizza, ice cream cake, and gifts. I would have had to spend the rest of the day in the hotel room anyways because of "Germs". So I'm back in the room, hiding from kids and people with germs, ice packing my boob surgery site. I take my good times on the road....

Craig went with the boys to join the others in the water park. They had a great time as expected. I am naturally jealous but at the same time very pleased that they had so much fun.

I am up and down all night, the usual for me, plus some extra with the surgery discomfort. I think I was so pissed and irritated that I had to have the surgery that I forgot I was having surgery. If that makes any sense. Surgery hurts.

Free hot breakfast, with lots of kids. It's not so crowded if you are there at 6:00 am when they open. We immunosuppressed people know all these tricks. BUT....we immunosuppressed people are not allowed to eat mass produced food, that is sitting out where people can put their germs in them, and sitting for who knows how long at possibily the wrong temperatures. Huge danger zone! But I was hungry, it was free, and I needed to take another pain pill.

Next we get over to Kootenai Medical Center to see Keri and meet Liam. Children, of course, are not allowed to visit in the hospital, so Craig and I took turns going in. My turn involves breaking my immunosuppressed rules, again, by even entering the hospital. You would be amazed at how many germs are in hospitals. Not just the sick patients. So hand sanitizer in hand, mask on, I go up to Maternity. I am promptly stopped as the nurse thinks I am sick and she is going to kick me out. I explain the situation and the she lectures me about being in the hospital "with my condition". Thanks for the concern.

I must wear the mask around the baby but I did break the "three feet" rule. I did not touch the baby or hold the baby. These particular rules are derived from neither I nor the baby have an immune systems. Neither of us have our vaccinations yet. We are at present a two-way germ infection. But I am looking forward to breaking those rules too someday.

Keri is beautiful. The baby is beautiful. And both are doing well. To my surprise, I cried when I met Liam and saw Keri holding him. It triggered a cascade of emotions.

On our way back to Spokane, we stopped in Spokane Valley for the boys to attend a birthday party at Chuck E. Cheese. Okay, I give in on this one. No way, no how. A stay in the car while Craig takes the kids in. But.... that morning Brennan woke up sick with a cold. John Paul had a great time.

Now I have to avoid my own child who has LOTS of icky germs. And as a Mom, all you want to do is love on them and console and comfort. Ugh, this is all so hard! He ended up home from school the next day too. And then the day after that Craig was home sick with the cold. Talk about having to isolate and avoid.... All the standard immunosuppressed rituals began and continued. I won't bore you with it, but it's quite an undertaking.

The super Bowl took up the rest of the afternoon. GO SAINTS!!!!!!

Good news is that we are all healthy now.

February 5 Was A Busy Day!

Two of my dearest friends already had Friday, February 5 reserved! I certainly wasn't going to allow a little surgery to get in the way!

I am pleased to share with you that Liam Garr-Coles entered this world at 9:00 am that day. Keri gave birth via c-section to a handsome and healthy baby boy. My sincerest congrats go out to Keri, Gordy, and their daughter, now a big sister, Jessi. Although I didn't get to visit Keri and Liam until later, it was a day of celebration.

February 5 is also the birthday of the son of another one of my best friends, Belinda. Gabriel turned 5 that day, now sharing Liam's birthday.

Many blessings to both families!

And That Was Only Thursday....

Why not get all the suffering done at one time? So the day after my BMB, I had surgery. Long story short, I had found some nodules next to my mastectomy scar, in the area my original breast cancer was. A couple of doctor appointments and an uncertain ultrasound later, I was headed off to have the nodules removed.

The surgery time was pushed back several times, but late Friday afternoon my breast surgeon (kind of weird when one no longer has breasts) created a new incision and removed the nodules. Unlike the day before, they had the meds to push my blood pressure up and I remember none of it and escaped the apin. Thank You Dr. Anesthesiologist!

Again, after the requesite juice, toast, pee, and IV removal, I was on my way. No pain at all. Until all the local wore off a few hours later...

Lots of ice packs and a couple of pain pills over the next few days. But they were good days and worth not following doctors orders to take it easy, right?

What Does One Wear?

Oh, I forgot to tell you about an interesting dilema. I always struggle with what to wear to BMB's and other tests and procedures. "Comfy Clothes" are required. But does that mean sweats? Yoga pants? Old jeans? Is this for my comfort or so they can get me dressed more quickly and out the door, freeing space for the next patient?

This time I wore my black Nike yoga pants, my black Nike wicking shirt, and my white Danskin zip hoodie. White socks with black sneakers. Thanks, Denise, for this comfy outfit!

But Life Does Go On

So I didn't stay "Closed" for long.... Still just as stubborn, just as determined that I can cut corners, cheat on the rules, do it my way, etc..... Just because I am in the midst of a medical event or crisis, life does go on. And I want to be a part of it!

So, going back a bit. Bone Marrow Biopsy. John Paul decided that morning that he really wanted to come with us and see where I was going, what was going on there, who did what, etc. So I called and got permission for him to come. The rules for the Chemo Suite, where the bone marrow biopsy procedure room is, are that no children under the age of 12 are permitted. So long ago, I embellished this a bit to tell the boys that no children under 12 were allowed at the Oncology office. Seemed like a good idea to me. I really don't think they even need to see all the patients, in varying forms of despair and illness, in the waiting room. And the patients don't need my kids staring at them or making a ruckus, as boys tend to do.

The Chemo Suite is this mysterious place off the waiting room. The doors are always closed until someone comes out and ominously calls your name. It's not fun back there. You know you are in for it as you pass through the doorway. Blue suits galore. (In Sally Land and the cancer world, the blue suit means you are about to get drugs to almost kill you. Chemo+blue suit.)

So John Paul is allowed back with me as I settled in to my pre-procedure cancer suite treatment chair. (Being back in these chairs always turns up the anxiety a notch. I have already spent too much time in them. I did all my breast cancer chemo in them. I tanked out in September in one of them and left the Chemo Suite on a gurney for a joyful ambulance ride to the hospital. Well, that's another story.) Quickly I am surrounded by a couple of nurses and a couple of lab people. An IV needs to be started, so my arm is hot-packed to get a compliant vein. (I only have one arm to choose from as my other is off limits due to node removal with my mastectomy.) John Paul is rapidly overwhelmed. So when the head nurse says he can't stay (despite permission to do so), this is not a bad thing. He and Craig go off to the waiting room to wait for me to do my thing. Five minutes later John Paul announces he is ready to go back to school. Craig takes him.

I am proud of him to have the courage to go and to want to see what he needed to see. It seems part of his jouney that he needed to know, needed to see a little of where I am always going. But school is a far better place!

Anyways, so IV is in, then 20 plus vials of blood drawn. This is a part of the tests past the ying-yang that I am going through in preparation for my Seattle trip. They are testing EVERYTHING it seems. Then there is a monthly CMV test kit (CMV is a virus that I got from my donor. Don't panic: I am fine.) Then there is the quarterly Respiratory Study I agreed to participate in. Nasal swabs and throat swabs. I prefer to do this myself. Okay, now we are ready to prep for Biopsy.

Transfer into BMB Procedure room. Questions, answers, blood pressure cuff on ankle (can't use arms due to mastectomy), my repeating I would like enough drugs so it doesn't hurt and so I won't remember it. Heart monitor on. Nurse is ready. Lab techs in to open and prep collection kit. Petri dishes, slides, tubes. REALLY HUGE AND LONG NEEDLE prepped. Anxiety brewing.

Then we wait. I read a trash mag while laying on my stomach.

Doctor is ready. I get my drugs and BMB begins. My blood pressure is dropping so drugs stop. I beg for the drugs or for the doctor to stop. I get neither. Pride is gone and I am now crying from pain. I HATE BMB's!

They get their marrow. They get their chunk of bone. (This is all done on your hip bone in your lower back.) I am still crying and want to go home.

I am thanking God that John Paul is not here. Bad decision on my part.

I drink my obligatory juice. I eat my obligatory crackers. I pee. See ya.

Thursday, February 4, 2010

And Here We Go

I officially am "Closed" starting this morning. My bone marrow biopsy is at 11:00 a.m. I always choose to have sedation which makes a rather unpleasant procedure much more tolerable. When I had my first one, on July 11, 2008, at my six week breast cancer post-chemo follow-up visit, it was awful. A huge long needle is inserted through the hip bone to extract both marrow and a piece of bone. It is painful and the tugging sensation is enough to put me over the edge. Why be aware of it, why feel it all and remember it, when sedation is available? My hat is off to the troopers who can do it.

Today I add a new circle scar to the collection I am gathering on my hips. "Right or left?", they will ask. I think Left today.

BMB's naturally cause me a fair amount of anxiety because they are both icky as well as diagnostic of where my leukemia status is. It takes about a week to get all the test results in. The marrow is analyzed on a cellular and molecular level so there are a lot of tests performed on the samples. The tests have very fancy names.

So The Waiting Game begins yet again....

This BMB is in preparation for my One Year Anniversary of Transplant. Can you believe that?! I will write more about this later but I am officially preparing for my Anniversary Trip to Seattle in March. So in addition to the BMB, they will draw about 15 tubes of blood today for a zillion of tests that Seattle has ordered as well. So I am fasting today too.

So in addition to being officially "Closed" I am also officially "Nervous" and officially "Goofy" from sedation today and anesthesia with surgery tomorrow. Let the good times roll!

Tuesday, February 2, 2010

The Clock Is Ticking

The Surgery Countdown has hit me hard. I conveniently forgot I have my Bone Marrow Biopsy on Thursday, so I will be down for the count after 11:00 am...... So what can I cram into today and tomorrow? What is most important?

Ah, the eternal question. It is difficult for me to decipher what is important versus what is priority. It all snowballs into that constant sense of being WAY far behind and disorganized.

I am not writing well right now. Be back later.....

The Staircase

"Faith is taking the first step even when you don't see the whole staircase."
Martin Luther King, Jr.

Have you ever been to the Winchester Mystery House in San Jose, CA? If you have, I think this is my destiny!

Monday, February 1, 2010

Residual Breast Tissue Lumps

So when I went to my GYN appointment for the regularly scheduled colpo, I mentioned to my doctor (Highly recommend him: Dr. Shawn Barrong at Northwest OBGYN. His nurse, Denise, also rocks! They delivered both my beautiful boys.) that I was feeling some lumps where my original breast cancer was. My theory was that I had lost so much weight that I was feeling scar tissue that had always been there but that I just couldn't feel.

His response after palpating the area was that I should go back to my surgeon. He, unfortunately, retired last year (Dr. Cammack, I will always be a fan!). So Dr. Barrong ordered an ultrasound. My busy schedule over the next few days (yes, really) resulted in my having it done mid-week the next week. I lucked out and got a breast imaging specialist, who said he did not think it was scar tissue or fat. Frankly he didn't know what it was. But with my history, blah, blah, blah, I should just get the nodules taken out.

So, back to the Oncology Sort of Afternoon, the doctor says I should go see Dr. Martinez, a Breast Surgeon, and that she will call and get me in. Less that 48 hours later, I am in a huge, albeit nifty, robe at my new surgeon's office. We agreed that it's better to just get the nodules out, whatever they are. They will need to come out before reconstruction surgery regardless.

Surgery is this Friday, February 5. Ugh.

I am going to skip my feelings about all this for now, but basically I am disgusted. Perhaps I will feel more expressive later.

So now I am to begin all the preparations that need to take place. I kind of have developed my own "Getting Ready for Medical Crisis" checklist, from grocery shopping to changing linens, to school rides and more. Thank you, in advance, to all of you who will undoubtedly be there to help us out once again.

Craig and I know the drill. We have told the boys that it is a surgery to help get ready for my new boobs. They think it's funny......

An Oncology Sort of Afternoon

I think I left off in the middle of the day last Monday.

So I came back to Spokane from the Pain Management Clinic in Coeur d'Alene, Idaho, for my afternoon appointment with my Oncologist. These appointments do tend to be either a morning or afternoon event, in "expect to be there for as long as it takes." And this one was quite the appointment! First there was my colposcopy results to mull over. Then my most recent hospital visit earlier this month to discuss. Medication lists were updated and necessary refills/adjustment determined. And since I am ignoring the colpo/gyn problems for now, there were still two huge items on the agenda:

1. Residual breast tissue lumps

2. Transplant anniversary trip to Seattle

And these two weighty items get their own posts, my friends.

Other than that, it was a day like any other day......

John Paul's First Gig

My handsome and reverent boy is on the home page for his school, All Saints. I guess this is his first gig/photo op. How proud am I?!

Take a peek if you have time, at

(I tried to post a link with no success, so I leave the work to you!)

I do have to say, all kidding aside, John Paul's spritual development constantly amazes me. His journey has become a part of my journey, and he inspires me daily in his knowledge and thirst for more.