Friday, June 29, 2012

The Redemption of Dr. B

Today I lugged a heavy bag into Dana Farber. It was filled with magazines to read, puzzle books the Bunco girls gave me, my iPad, paper (no pen, I had to mooch that off Kelly). I brought this ridiculous amount of stuff because last time we had to wait 2.5 hours to see the first doctor, and ended up spending the entire day there with a lot of waiting. Today we were in an out from all my appointments in a total of 2.5 hours.

My PET scan showed fairly stable disease, which Dr. S and Alex had discussed with me earlier in the week. They also discussed their "tentatively definite" plan, which was to stop treating the cancer in my liver and take time out to treat (and cure) the cervical cancer with radiation and low-dose chemo. The reason is the next most likely treatments for my liver are targeted for my liver only, and no one wants the cervical to advance, so this plan would take the cervical component out of the equation since it is highly treatable with radiation.

So...first up was Dr. B. I must confess, if today was the first time I met her, I would have raved about her. She was engaged, clear, and took ample time with me. She signed off on the plan immediately, but did ask for another cervical biopsy to be performed (yeah...) to try to confirm that the two cancers are in fact two cancers. I also need to get a mammogram (double yeah...) because of a bright spot on my PET.

Next we went to see Dr. Chan. I was hoping to hear what she wanted to do to treat my liver in the fall once the cervical was taken care of. Unfortunately I did not get my answer. I will get an MRI towards the end of my radiation treatments to see what happens to my liver tumors without treatment, and then she will make a decision. What I hope, hope, hope for is that the MRI will show stable disease once again.

I am on the schedule for Tuesday to start radiation, and they are working to get me into chemotherapy too. I am most pleased to not have to wait to start treatment.

The main side effect of radiation is the increased fatigue. I will have 6 weeks of external beam radiation. Week 6 falls the same week as my 1 mile open water swim. Think they will notice if I wear fins (that might not be legal) or hold on to someone's ankles (also not legal...)?



- Posted using BlogPress from my iPad

Wednesday, June 27, 2012

Quick Update

I complain about a bizarre PET scan experience and then don't bother let anyone know how the follow up scan went...we'll add this to things that are part of my charm.

I was able to get my PET/CT scan on Monday. It took about 50 minutes to get my port to act as it should, but once that was taken care of everything else went well. I talked with Alex and met with Dr. S on Tuesday about the results of the scan and, in Alex's words, have a "definate tenative plan" of treatment, dependent on the Dana Farber doctors signing off on the plan. I will go see them (my not-so-beloved, but I am trying to go in with an open mind, Dr. B, and also the stellar Dr. Chan) on Friday in Boston.

If you have a spare pair of fingers, could you cross them in the hope that this time around the plan of treatment from Dana Farber comes a bit faster than it did last time?



Monday, June 25, 2012

The 23rd

At first, weekends were the hardest. Every Saturday night I would be reminded that "one week ago" or "three weeks ago" I screamed Kelly's name twice and then called 911. Sunday night at 9:05 brought tears for weeks and weeks.

The date, the 23rd, is a painful reminder ~ an anniversary that I wish we didn't have. I try very hard to stay busy on each 23rd, but no matter how busy I am, the memory creeps in. It plays over and over...trying to find what I could have done differently. I have been told this is a hallmark of a traumatic memory.

Recently I could only remember what Cora looked like when we were in the pediatric ICU and then later, at the funeral home. I couldn't remember her at the hospital when she was born or at home. I was absolutely devastated. It passed, but it was horrifying to me. What parent can't remember what their child look liked without a picture?

In one of my drawers I have a little box that Cora's last PICU nurse gave to us. In it are two little hearts with impressions of each of Cora's hands. I am grateful to have something physical to remind me of her.

We lost Cora 8 months and 2 days ago, on Sunday, October 23 at 9:05 PM.

Thursday, June 21, 2012

Ridiculousness

Today was my PET/CT scan day. Those of you who have been reading for a while know how much I love PET scan day. You may also know I have crap veins. This combination normally makes for a thrilling day. But today was extra thrilling.

For the PET scan I need to be injected with a radioactive isotope and for the CT scan I need to be injected with a contrast agent. (I am not sure if agent is the right word...I need to be injected, that is the important part.) My first tech looked at my veins and threw in the towel before even attempting to put in the IV line. My second tech first decided to try the inner forearm, no go (and can we all say "ow?"). She then tried my wrist ~ the nice, bony part that feels GREAT (is the sarcasm coming through?), with a needle and then the saline test to determine that one was also a no go. She then decided to access my port. I had no numbing cream, but since I had already been there for an hour, I said to just go for it. Another GREAT feeling, but I thought, "They are in, we are good to go." Um, no. She couldn't get a blood flash, which meant she couldn't use the line.

Awesome.

Dr....um, I don't even want to use his initial because it is rather uncommon and he was a really gem (the sarcasm is coming through, right?)...so, Dr. Um says that I can drink the radioactive stuff, get the PET scan, then go to the hospital, have the cancer center folks access my port and then get the CT scan done at the hospital. Sigh. A royal pain, but I want this thing done so I agree.

My advice: don't drink the radioactive stuff. It is nasty. Oh, and after I drink it Dr. Um tells me I now have to wait 90 minutes instead of 45 minutes before they can scan me because of how the body reacts. Super. Not like I have children that I need to go home to or anything.

Three hours after I arrive at the PET scan place I make it to the scanner. Woo hoo! The scan starts, back and forth, back and forth, then it freezes in one place for what felt like 20 minutes, but was probably closer to 10. The PET scanner failed mid-scan. They pull me out, reset everything and in I go again: back and forth, back and forth, then it freezes.

The scanner failed again. Engineers were called in. I am now rescheduled for Monday.

Ridiculousness.

Tuesday, June 19, 2012

Anger

Every single day I fight the anger.

Over and over people tell me how strong I am. The only way I feel strong is that I don't let the anger win. But it is there...I can't get rid of it, but I try not to let it win.

People tell me it is okay to feel angry...that I should feel angry...that given what I am going through I am "allowed" to feel angry.

The thing is, I don't want to be angry. It isn't me. I am not an angry person by nature. But now it just simmers up. A therapist I know told a story of a woman who dealt with her anger by going to garage sales and buying dishes. She then stacked them in her garage and when she was angry, smashed them. I love this idea. But then I think about the clean up and the potential for missing small shards and the small, frequently barefoot children, and cringe at the idea. But I need to find something like this...quick and effective, but that does not involve shrapnel.

Sunday, June 17, 2012

Father's Day

When I was 5 or 6, my parents had an in ground swimming pool put in. At the time (and even now) it was the most amazing thing ~ a pool in our backyard! That first year with the pool I used to cling to the side to go around the whole pool. My fingers would be all torn up from the concrete, but I didn't really care - I was in the deep end! When I got a little older, my dad would race me. I must have asked him about 20 times a day (conservatively) to race me because no one else would. He would oblige and somehow, even when I was little-little, I would always win. And there was never a doubt in my mind that I beat him fair and square.

My mom used to work the 3-11 shift at the hospital sometimes, which meant my dad was in charge of my brother and me. Quite often on those evenings our meal was Kraft Macaroni and Cheese and also quite often on those evenings, I was a troublemaker. In order to make dinner and keep me in line, my dad would put me up on the kitchen counter. I tried this same strategy with Kyan. It was not effective... (How did you get me to stay up there, dad?)

My dad worked long hours and all sorts of less-than-ideal shifts, which meant that he wasn't always home for dinner. But he was there for me for all of the important events and would go out of his way for me whenever he could. I went to college about 4 hours away from home. Once a term he would drive out after work on Friday to pick me up, I would then drive us home. On Sunday we would reverse the trip, going to work after I was dropped off. And on those trips home, I think I had one meal with my parents as I was trying to squeeze in time with all of my friends. Yet he never complained about me not spending time at home after taking all that time to get me there.

I was blessed with a very patient dad. He rarely lost his temper, didn't slam on the imaginary passenger brake when teaching me to drive, and all those years ago when he discovered I had a tattoo on Father's Day (sorry about that timing), he took it in stride...pretty much.

When I was very young, I thought all dads were like my dad. Now that I am older and know differently, I wish all dads were like my dad, because then all kids would be as lucky as I am.

Happy Father's Day, Dad! I love you very much.

Thursday, June 14, 2012

Mommy & Me

When Rory was about a year and a half old, I registered the two of us for a Mommy & Me class at the preschool I wanted to send him to. I really am not sure why I signed us up ~ I think I wanted to get out a little more, and have some one-on-one time with Rory. We met every Friday morning for about 2.5 hours ~ lots of playtime, circle time, craft time, and ending with The Big Green Monster story each week.

The next year I emailed the teacher, Jill, to ask if Kyan and I could join the class mid-year and she said "If you are up for it, join us now." So I did. Ky was the youngest by quite a few months, but he got the hang of things. Except for the craft projects...he tasted every single paint color used during the year. Every. Single. One. He never seemed to enjoy it, but he kept trying!

Through these classes I became friends with the other "moms" and Jill. After our kids were done with the class, we kept up via emails, Facebook, the occasional summer get together, and preschool pick ups and drop offs. When we announced we were having twins, they celebrated with me (and questioned my sanity with having 4 under 4...). When we lost Cora, some of the first people at our door were my Mommy & Me friends, and those friends are still at our side today.

A while back I was talking with a friend about how sometimes support comes from sources that seem unexpected or somewhat surprising, but when one really thinks about it, those sources make perfect sense. Without a doubt, this is how I feel about my Mommy & Me friends ~ our friendships grew so naturally the strength of them surprised me.

Much love to all of my Mommy & Me friends ~ I am so glad for our Friday mornings together.

(I am also glad for Jill choosing washable, non-toxic paints...)





Tuesday, June 12, 2012

The Schedule

Since January, I have living in a somewhat schedule-free zone. My schedule has been about running the older boys to and from school, or speech, or Y classes. Other than treatments and swimming, my days have been pretty loose.

This has lead to me doing an amazing job of shifting stuff around into piles on our kitchen island. Sometimes the piles are moved downstairs to my desk. Once in a blue moon, filing occurs.

In other words, I haven't gotten much done. I used to be really good at having set amounts of time to do things, and I would get them done. A schedule! Whether it was work, a project, paying bills, I would know when I planned to do it and it would get done.

I decided Monday that I needed a schedule. My Type-A, Where is My Plan, personality needed a schedule. Even if that schedule involved resting for a little while in the afternoon. Monday started out a little slow (there was stuff that needed to go into piles!). I still was able to spend lots of time with the boys, which has been the best part of my schedule-free lifestyle, but I was also able to start on a project, as well as fit in my half-marathon training and a short swim. It was nice. Felt kind of normal.

Saturday, June 9, 2012

The Challenges of the Ordinary

Yesterday I went to plant flowers at the cemetery with my mom. I wore flip flops rather than sneakers (gardening is not my forte), so as my mom dug up the sod, I gathered it into a bag to walk over to a nearby field. The first two trips were fine. I noticed I felt a little weak, but I was okay. The third trip was okay, but the bag felt really heavy. The fourth trip was not good. I emptied the sod onto the field and felt like I was going to pass out - world spinning, unable to focus, dizzy beyond dizzy.

At this moment my two thoughts were:
(1) I need to get back to the car because my mom won't be able to drag me from this field (and)
(2) I cannot be the stage 4 cancer patient who passes out in a cemetery field. That is just bad form.

I did make it back to the car, sat down, de-dizzied (yes, I made that up), had some water, and proceeded to feel quite worthless as my mom planted the flowers while I filled a watering can a few times. We then left my car because I wasn't in shape to drive (my mom and father-in-law had to go back to get it). Once we got home, I called Kelly to come home, but also had 3 out of 4 grandparents over to help with the kids and me since I was in bed, pretty much out of commission.

Can I tell you how nuts this whole situation made me? Not being able to do the most basic of tasks? Not being well enough to watch my kids solo? Feeling cruddy enough that I needed a caregiver? Frustrating does not even cover it.

Wednesday, June 6, 2012

Who needs a plan? Oh, right...me.

Today was my final day of chemo. Dr. S is pulling me off my treatments unless my PET scan in a few weeks shows some major changes (which based on clinical signs seems unlikely). He feels the cost/benefit is not worth it and we need to look into other treatment options.

The source of those other treatments: an appointment at Dana Farber with Dr. B (trying to keep an open mind) and Dr. Chan. When that appointment will be is unknown. Dr. S's scheduler is working on it and trying to get me to see both doctors on the same day within a reasonable time frame. My version of reasonable and their version of reasonable are likely to be very different...

As of right now, there is no official "next step" to my treatment plan. Once again, I hang out in Dana Farber limbo, waiting for them to decide my next step. It is a frustrating place to be. I am considering going to Johns Hopkins instead, and have broached the topic with both Alex and Dr. S. Dr. S would like me to go to Dana Farber one more time, and then consider going to JHU. He would support going earlier, but his recommendation was DF first, then onto JHU.

I must admit to being pretty bummed about this situation. I wish my treatment was working to a degree that I could keep on with it, since I am tolerating it fairly well. But that is not the case, so we need to find something else that will work.

Tuesday, June 5, 2012

June 5

Today Kyan, my middle child, my primary source of gray hair (when I had hair), my sweet smiling boy, turned 3. As many parents know, these things sneak up on us. Wasn't he just born? Just learning to walk? Just climbing on his first high surface and nearly sending me to a cardiologist? Not that 3 is old, but time flies.

Those of you who have met Kyan know that he has the best laugh. A big belly laugh that gets deeper with age. This video is a little old, but it will give you the general idea. This laugh is one of those things that when he does it after being naughty, I have to fight the urge not to smile or laugh. I don't always win that battle.



Kyan's favorite toy is Matchbox cars. We must have at least 200 (many hand me downs from his beloved cousin, Aidan). He plays with them all. He got a few new ones at his family birthday party on Sunday and he can pick those out of his collection. He organizes them by color or by type of car. He has races and crashes them, and for some reason many fly off our kitchen table. Speaking of the table, when we bought a new table I researched and researched to find one made of hard wood that was pretty kid-resistant. I forgot to research Matchbox car resistant. Let's just say our table has a "distressed" look it did not start with.

Ky is becoming a great big brother to Crosby and a wonderful little brother and playmate to Rory. Crosby sees Ky and his face just lights up. They both share a love of books, and it is fun having both of them in my lap while attempting to read a book. Rory very much wants Ky to learn to play his games - both outdoor and indoor. Kyan is interested, but not quite there yet. But, there are moments we see the glimmer of their brotherly friendship shining through.

I can't believe it has already been 3 years with my adorable little nugget, Kyan. Happy Birthday, Kyan! You have brought so much laughter and so many smiles to our home ~ I love you!

Monday, June 4, 2012

Child Care

Some things Kelly and I need to do are very practical: putting all of the bills in his name, listing my usernames and passwords, explaining the filing system to him that doesn't even really make sense to me. But then there are the more emotional things, and those are the ones I tend to put off for the longest time.

We recently hired a part-time child care provider. I can't even describe how difficult it was for me to make the phone call to do that because I feel like I am giving up the most precious thing-time with my children. The logical part of my brain tells me that having her here will be a good thing. She will be here when I am most tired, and she will have time to get to know everyone and our routines. The emotional part of my brain disagrees. I am not ready to accept non-family help with the boys. Then I realize having her here will help me enjoy more time with each child since I will be able to have more one-on-one time with each of them. And having her here will help me from being so tired, so my time with the boys will be improved in that sense as well.

I think the thing that makes me 'okay' with this is that the woman we hired, Jamie, had the option of another job. We were very direct with her...this job, working for us, will have a lot of difficult days. And she chose us. Clearly she is made of tough stuff, and we will all need that.