Wednesday, April 30, 2014

The Plan (for now)

I am hesitant to even put the plan out here since it seems to be constantly shifting, but as of today I am set to get the port in tomorrow and on Monday, I will start treatment with rituxan, or rituximab. This is a drug that will “de-bulk”, or break up, the cancer. I’ll do this weekly for a month then now is looking like I may then be in the hospital for a course of cladribine + rituxan but am going to take it a step at a time.

I got my counts checked again this morning and then have taken a step change down (which Chad and I thought was likely the case from the way I have been feeling!).  My white blood cells, which fight infections, are below 1.0 now (normal is 3.8-10.8). My neutrophils, which fight bacteria and make up over half of your white blood cells, are less than 300 (normal is 1500-7800). I know the drill and have had suppressed counts for so long should be okay but the further down they go, and longer they stay down I also know the chances of me getting an infection go up. The last time my counts were this low I was told they were too low to get discharged from the hospital which is a bit unsettling. I am going to be hanging at home with the germs my body is use to more and more…

Other news at our house… Katherine continues to treat us to singing “concerts of a lifetime” while Chad and Margaret are working on perfecting being Katherine’s back-up singers as minions from Despicable Me  (who apparently only say the word banana so all the emotion comes through the tone of their voices). 

Monday, April 28, 2014

Plan or no plan that is the question....

And I honestly am not sure about the answer...

Went to my doctor today and we talked through a plan. I'd get the port in on Wed and start rituximab on Monday. It is not chemo but a drug that attacks a protein in HCL and breaks down the leukemia. I'd do this drug weekly for 4 weeks outpatient, watch my counts then chemo plus more rituximab.  We figured the first round would buy us some time to let the NIH tests run their course since even if I don't do a trial now the next option (or any after that) would need to be trials through NIH.(It has become clear this doctor at NIH holds the keys to my longer term survival!!)

Chad and I came home feeling better and then I got a call from the doctor at NIH. The tests were back. He thought I should start on rituximab only. Sounds great - consistent with what we had already decided with my doctor here. Then he started asking me questions since he just got my blood work history from Dec through last Monday. When he understood what my counts were upon my original diagnosis and that I was transfusion dependent when I started chemo he got a bit of a different opinion.... so, have asked for the rest of the blood work records and other key tests to get sent to him tomorrow.  Regardless I think we will start with the port to make the bi-weekly plus blood draws and treatments easier. My poor veins and arms are shot so actually am excited to get a port (as crazy as that sounds!).

On a sad note, our fish (yes, the fish we just bought yesterday) died today. Poor Bob and Fluffy did not fair well at chez Withers. I've told the girls I think they may have died from sadness over their awful names (they were dalmatian mollies). Katherine's response was "No, Mom, they just did not acclimate well".  Bob and Fluffy have had a bit of a fish funeral and have been sent out to sea.

On a positive note, the plumber replaced the damaged pipe and we no longer have a leak in the basement. He even cut up the old copper pipe so Chad and the girls could take it to the scrap yard and see what they can get for it (another side effect of watching too much Rehab Addict on HGTV!!).

So we have resolved the pipe, no longer have fish and just need to fix the mom!! We might have a plan, or might not, after the big pause at the 11th hour 2 weeks ago and the evening call from NIH will believe it when it happens but fingers crossed things will move ahead this week.

Sunday, April 27, 2014

This week at the Withers...

I am feeling both physically and emotionally ragged. Physically, I continue to get progessively more tired and weak from the leukemia. I had 14 vials of blood drawn on Monday and they arrived at NIH on Tuesday. Giving up that much of my blood wiped me out. I usually get a bruise right away but this time my poor vein had no blood for a bruise for a few days - now the bruise is in a line along the vein. Also, despite the weather getting nicer there are colds and viruses that are making their rounds. We have avoided the worst of them so far but they have not totally missed us. I'm being much more careful about where I go and what I eat, but had a man in line behind me at Kroger today coughing that made me nervous!

Chad and I are both feeling drained mentally and emotionally. It feels like we have been in the starting blocks for a week and a half just waiting for the gun to go off.... 

My blood and medical history all arrived at NIH on Tuesday. By Thursday I'd talked to the doctor at NIH and he was thinking my strain of the disease was a more chemo resistant one and thought he'd have the results back by mid-day Friday. Mid-day Friday talked to him and the key tests were not back yet but he thought he'd have them by end of the day... then got a call to say mid-day Monday.  So hopefully tomorrow but am trying not to get my hopes up, but at this point am planning to get the results one day and then start chemo the next.

In other news in our house, we realized we had a leak coming in the basement. The girls were totally geeked to be able to help Chad "demo" the drywall. This revealed a very old (if not original) copper pipe that had clearly been leaking for awhile. The plumber came out and said it was a long job that needed to wait for next week and one that required Chad and the girls to do more demo. So this weekend they have hacked away at drywall and pulled out the built-in cabinets. Margaret enjoyed it so much she just hammered some wood for awhile (which cracked me up because she is also our child that cannot walk by our living room without stopping at the piano to play some amazing classical piece with a very light touch - almost always when she should be doing something else (like setting the table, packing her backpack for school, etc.).

Yesterday I realized I was going to continue to feel worse and Katherine had fortunately let us know early she needed a dress for elementary school graduation. She originally wanted to wear a dress my mother brought for dress up... which looks nice on her but it is short, black on the bottom, gold sequins on the top and spaghetti straps so not really the ideal outfit for a morning graduation from primary school. So, we ended up at the mall at the department stores. She knew what she wanted. It was much more than  I thought I would spend when we left but at the end was so ready to get something and have it done (and thought about how it only cost more than about a day of tuition...) so we got it. The dress Katherine picked out is a simple sleeveless white dress, that she looks and feels good in... and I was thankful that she has skipped the juniors department so far!!

This week we also pulled out an aquarium that you plant things on the top of that grandparents gave us for Christmas. Chad and the girls have just arrived home with two dalamation fish. The girls are very excited. Apparently they got a girl and a boy and we might have hundreds of baby fish soon. They said the shop said we could bring the babies back for store credit... 

So I guess you can sum  up this week to say we have both a cancer- and anxiety-ridden mom, an exposed wall in our basement with a leaky pipe and two new fish that will likely have many babies soon --- what else could we ask for!! 

Sunday, April 20, 2014

How am I feeling...

How are you? This is a seemingly benign, common question, but it is a really loaded question for me these days. My automatic reaction is "great", or "fine", but "hanging in there" or "good under the circumstances" is probably more appropriate.  One response seems to be true all the time these days is that I feel very tired pretty much regardless of the time of day. I am consistently the first to bed in our house and last up in the morning, and if I can get a nap in I do. I know it only gets worse from here but we bought new sheets over Spring Break so my bed is a very comfy place to be!!

It was nice to have this weekend without recovering from a big procedure and bracing for chemo. My neutrophils are technically dangerously low meaning lots of food restrictions, can't garden or be around flowers, and should not be in crowds (i.e., rooms with more than 8 people). My doctor and I agreed a couple weeks ago that we were both comfortable with me continuing life as usual with me doing what I can to limit my exposure to pick up an infection my body is not prepared to fight. I go in tomorrow morning to donate what feels like a huge amount of blood to science. I will also get a quick read on my counts which I fear are not good and mean more restrictions.

Friday the FedEx enveloppe arrived from NIH with 13 vials they need to have filled and FedExed back tomorrow. They are also requesting a CBC and Differential from tomorrow which will mean a minimum of 14 vials of blood. I am not long on good blood these days so am planning to have this make me pass out.

NIH will be able to definitely confirm I have plain-Jane hairy cell (HCL-C) and not a variant (HCL-V). So far my diagnosis has been HCL-C. If it turns out it is really HCL-V then that would explain why my duration of response to cladribine was so short and would cause us to change course on plans for treatment.

I think there are three options now. The plan in each case is to do the treatment at UC but as a patient registered on an NIH trial....
- pentostatin and rituximab (which has been the base plan)
- cladribine and rituximab (not excited about this option)
- rituximab alone, anticipating that it will not work so I can qualify to get montetuxemab after.

I am totally unclear on what the tests from this week will show that will help us re-make this decision. Hopefully will get more clarity over the next couple of days.  My children are definitely (unknowingly) keeping my mind off the leukemia. Margaret has been quizzing me about what cabinets, countertops and back splash I want in our kitchen. (No, we are not planning to remodel any time soon - she has just watched too much HGTV!!) We had a good hang out weekend, just wish I had a better idea of what was going to happen beyond tomorrow!

Thursday, April 17, 2014

Change in Plans

I had forgotten how little control I would have over cancer and getting rid of it....

Yesterday I got three separate calls confirming the time, location and pre-op protocol to make sure I was set to get the port in. Then my work group surprised me yesterday with an incredible send off. Everyone dressed in orange (the color for leukemia) and showered me with everything I could possibly need and more through my treatment. They really overwhelmed me with their generosity and support. I had set my out of office message and was ready to get this phase of treatment going.

Then a little after 5 my doctor called. I have to digress here for a second... so you know it is not a good sign when your oncologist calls and says "Hi, it's Steve. Calling from the landline which is why a different number came up."  First warning sign is that my oncologist and I are on a first name basis we talk so much. Second bad sign is that he usually calls me on his cell so I did not immediately know it was him (but did know it was someone from UC) and he knew that as well.

Anyway, back to why he called. He finally had gotten to talk to the director of research for hairy cell leukemia at NIH (National Institute of Health). They have a system in place where they FedEx vials for blood and then we FedEx them back. Then because NIH is federally funded they can run tests that no one else can (i.e., they are not bound strictly by what insurance will cover so they can actually run the tests the doctors think will be helpful). So we decided that it makes sense to pause our base plan for a week (or likely two) to get this analysis done,and  get more data on my leukemia to help make sure we pick the most effective treatment.

The doctor from NIH called me on the way home and we talked for about half an hour. The first test they will run is a screen to confirm I have classic hairy cell versus a hard-to-detect variant they may not have shown up in the normal bone marrow biopsy analysis. I clearly got the sense I was an interesting case as a young woman with a rare disease that disproporitionately effects men and usually has  a more durable response rate to the treatment I received (median remission time is 10 years). Anyway, NIH will run lots of crazy tests then we will  re-open the conversation on treatment plan, location and protocol. I know it is better to get this information now but it is hard to know I have so much cancer inside me and to wait to get started on the process to get rid of it.

Chad and I are looking at this like a "stay of execution". We are going to squeeze a date night in this weekend. I should be feeling better than we thought for Easter and he and I now have time at work we were not expecting today and Monday. So have to look at this as good but hoping for a quick turnaround from NIH. So far they have been very efficient and they emailed the consent forms and information on what they needed last night. I'll get those back to them this morning so they can get the FedEx box to me Friday, and blood draws can happen here on Monday. Likely will be end of next week before any new news...

Monday, April 14, 2014

A plan, and the girls

More meetings today with my doctor, and we have a plan. I am set for surgery on Thursday to have the port put in and then on Monday chemo will start (pentostatin). I will get this drug every other Monday for 3-6 months followed by a course of rituximab (not sure how often or how long yet). My doctor is still working to get ahold of the doctor at NIH to consult but based on the doctor's input Friday and our discussions today this is the plan. My doctor described doing the clinicial trials today as the preference from the medical profession's standpoint to gather more info but he said it was also like "taking a hit for the home team". Neither Chad nor I feel like we are to that stage yet.

We told the girls tonight that I would get the port on Thursday to help the doctors draw blood so they did not have to stick me with needles every time and to give me the special medicine which I would start getting on Monday. We talked about how I could loose my hair and how weird that would be. They wanted to make sure they could help me pick out a wig but tonight they were as they have been so far - which is really totally okay with it. I think they remember I was sick, got medicine and got better so that is the plan. We taught the girls to play hearts an euchre over Christmas so luckily we have a good sedate family activity we like to do together.  Hopefully I can at least feel up to this activity over the next few months.

We are watching for signs of concern from the girls but so far they've handled it all really well - perhaps too well!

A few months ago, as I was tucking Margaret in for bed she started sobbing. I asked her if something happened in school, if she was feeling okay, and finally I asked her if she was worried about me. She blurted out "what if the leukemia comes back?" I held her close and told her that was why I volunteered for the LLS and ran to raise money for research. I told her I had good doctors and there were good medicines out there and they would do everything they could to make me well. Chad has been checking with her to see if she has been worried, and she said she was awhile ago but she ahd talked with Mom and now she knew that I had good doctors and medicines and would be okay.

Katherine has seemed totally OK - her biggest issue over the past week was being frustrated and angry that she isn't getting a cell phone for 5th grade graduation.  Apparently 'all' the other girls were getting one - which later turned out to be one getting one and all the others hoping to parlay that into devices of their own...

So the girls are good. Better than Chad or I am but so far we are all hanging in there. I am feeling okay just very tired which I know will get worse. We were able to enjoy the nice weather this past weekend. We are bracing for what we desparately hope is the last blast of winter. This time around since I am out patient at least I will get to go outside which I think will (at least mentally) really help.

Saturday, April 12, 2014

Lots more info .... no decision yet

We had a change in plans this week and got a call late on Thursday from my doctor's office saying they wanted me to go up to Columbus to OSU to meet with the hairy cell leukemia specialist. We literally spent all day yesterday there, and came back wiped out, but with a better understanding of the treatment options.

The doctor in Columbus is a sage, older doctor who has studied hairy cell leukemia (HCL) for most of his career. Given how rare this type of leukemia is he is one of 3-4 doctors who have seen lots of cases. He is very well networked too with the other top doctors. We determined yesterday that given how short my remission was following my first treatment (which is also rare) I qualify for most of the clinical trials out there.

One drug in trial  is more of an experimental drug that has a side effect of skin cancer so that one is at the bottom of our list, but there are a couple others that are interesting. We are leaning towards the other traditional chemo treatment, pentostatin, to start with for 3-6 months followed by a target treatment drug, rituximab, to give the HCL the old one, two punch. There is a trial with these 2 drugs related to the sequencing of them that I may do, or may just follow the protocol. This type of treatment would be outpatient here in Cincinnati (unless I get a bad infection or get a fever then I am back in the hospital) once every 2 weeks for 3-6 months. It comes with many of the lovely standard chemo side effects (nausea, hair thinning/loss, extreme fatigue). On the hair thing, I wish I knew if it would fall out now and then I'd just go get a sassy short cut to start from ... so am debating this and may be rocking a new "do" next time you see me!

The other drug in trial, Moxetumomab Pasudotox, is like a stealth bomber and targets a protein in HCL and goes after it and kills it.  It does not have the side effects of chemo (hair loss, sever immune suppression) but it has other side effects and (I think) would require me to get treated out of NIH in Bethesda.

We meet with my doctor Monday morning to talk options and make a decision. The doctor at OSU said I did not need to start chemo this weekend but he would not wait and would start this week or next. So no decision on the course of treatment yet but should hopefully know the plan on Monday and when the "fun" will begin.

Thanks to everyone for all of your support and offers for help!! We will keep you posted.

Monday, April 7, 2014

On again, off again

So my doctor called me beginning of last week with the results of my bone marrow biopsy. He said they were great. He was looking at a report that said "normal celluarlity" with cancer cells less than 5% of my bone marrow. Really?!? So why are my counts so low?!? No answer to that question.... but everyone said I should be excited, but it was bugging me my counts were so low and there was no explanation.

I went online and was pretty sure I must have an auto-immune disease (Lupus actually fit except for the rash on the face). Then I set it aside and was blissfully ignorant of what was around the corner for me until Sat night when I was looking at gmail and saw an auto message from "My UC Health" that said new message. That was kind of weird because I thought my test results were in and my next appt was not until 4/30. So I went to check and what I saw was the final pathology report. I read it, then I re-read it, then I had Chad read it. It was definitely a different report than what my doctor has seen. It said "extensive presence of hairy cell leukemia" with 80% of my bone marrow cancerous.

I had a bone marrow biopsy a year ago a day off from the one this year. Turns out my doctor gave me the results from my biopsy last year, last week - different year, different result, and, yes, round 2 is on. My doctor has submitted applications for clinical trials at NIH today, tomorrow they are getting submitted for OSU. We reconnect with my doctor on Friday to decide course of treatment and next steps so I can get chemo going before my counts drop off much more and the risk of toxicity increases.

So... we got some spring cleaning done this past weekend, sleds put away, deck furniture cleaned and out of the garage and some flowers and veggies planted in the garden (hopefully not too early!). Hopefully will know what is in store on Friday and can make a plan and enjoy the next few chemo free weekends before that "fun" begins again.