Being Strong, and Choosing Hope

Occasionally I've had people say to me, "I could never go through what you have, I'm not strong enough!"  Or, "You are one of the strongest people I know."  I've never quite known how to respond to these types of comments, but I've usually tried some form of response that goes along the lines of a quote I once read, "You never know how strong you are until being strong is the only option you have." 

Though there is truth to the quote above, it's not all there is to finding one's strength.  I have watched and learned from my mother, the strongest person I know, and after seeing her incredible strength through a trial I don't know that I could endure, I've come to the conclusion that being strong is not just an accident of genetics but a combination things.  Being strong comes from the trials that have led up to where we are currently, and a blending of choices- choosing hope, optimism, and choosing to have faith in Jesus Christ and His ability to strengthen us.  "I can do all things through Christ which strengtheneth me." -Philippians 4:13

My mother is the strongest person I know.  She has MS and faces trials on a daily basis that would make anyone want to give up in despair. I am impressed and strengthened to watch her determination each day, through every new trial she faces.  I am inspired and motivated in my own life when I see her finding joy and choosing optimism in an incredibly difficult time.  My mother is part of the combination of things that bolsters my strength and enables me to face this latest trial with a smile on my face, peace in my heart, and hope and optimism for the future. 

"Hope... is like the beam of sunlight rising up and above the horizon of our present circumstances.  It pierces the darkness with a brilliant dawn.  It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father."

    -President Dieter F. Uchtdorf      

Strength also comes from the goodness of others.  I and my family have been the beneficiaries of countless good deeds from those around us.  The generosity of friends and family through letters, emails, packages, texts, donations of food, babysitting, time, energy, and money have been overwhelming.  My love and hope, my feelings of optimism are increased every time I receive a selfless offer of babysitting or someone dropping by to clean my bathroom or drop off dinner or getting a letter in the mail or a note on Facebook, the examples are endless.  My husband once said that he can look back in our lives and see God moving in different events to get us through and to where we are now.  He and I look at our lives today and see God moving through each person and each event that blesses our lives on a daily basis.  We are very fortunate to have the network of friends and family supporting and strengthening us every day.

I write this post because I have felt deeply the need to thank those of you supporting us through this time in our lives.  Though it is a difficult time, it is not an unhappy time. There is hope and joy surrounding us every day.  I know we have a lot of friends and family out there helping us, I feel the prayers and fasting from people's efforts near and far, and am incredibly grateful.  It's been a humbling experience to need the help of others and to have it given so willingly and in such abundance.  These words don't seem to adequately represent how I feel, but they will have to suffice:  Thank you, so very much, for all of the love and support sent our way.

Adcetris Chemo Treatment #1!

I had my first Adcetris/Brentuximab treatment on Thursday!  I was both excited and nervous for the experience, not sure of what to expect.  It turns out the worst parts of the whole day were the 3 1/2 hours of waiting and the nurse hitting a nerve in my hand when she put in the IV!  It felt like a knife sawing into my thumb... yes, it really hurt that bad, though I'm sure Adam and the nurse thought I was being a baby about a little IV :)  The chemo itself was completely uneventful- thankfully I didn't feel a thing!  I did get tired, but I think that was from the premed Zofran (anti-nausea).

Before getting the chemo I needed to visit with the doc- I had to wait nearly 2 hours before seeing him for only 2 minutes, and had to stop him from flying out the door before he answered my questions!  Seriously, I'm getting used to it, it's now more of a joke when I get a rough 15 second physical exam (the stethoscope is literally over my heart for ONE heartbeat before it's taken off) and I'm pleasantly surprised if I get in and out of a visit with Dr. Goy in under 2 hours! :)  He IS supposed to be the best, and he is incredibly busy, so I'll stick with him and just be sure to keep a sense of humor about it.


After seeing the doc I visited with one of the case workers for the bone marrow transplant.  She discussed how my brother's bone marrow will be tested- each brother will be sent a swab kit where they swab their cheeks with big Q-tips and send them back to a lab.  Pretty easy huh?  Each of my three brothers has only a 25% chance of being a match, so let's pray that at least one of them is in that percentage!  And if they're not... well, we'll deal with that IF we have to!

First Chemo!  Forgive the poor quality, we forgot a camera so we only got a shot from Adam's work Ipad.    I am really trying to show my scar there and not trying to flash anyone... Sorry it kind of looks that way at first glance! :)  Isn't that a great looking scar though??  It's only 2 weeks old!  Thanks to Dr. Elmann for putting in the extra effort to make it look nice!  

I went into the infusion room and waited another 1 1/2 hours for the chemo to be mixed and brought up. After an hour of waiting and sharing nearly a full box of Saltine crackers with Adam the nurse told us the "chemo order scan didn't work" so we had to wait for the order to be re-scanned and sent up to the room.  I was a little upset, mostly because this is not the first time that's happened- though last time it happened I was waiting for blood and about to miss Mykelle's Joy School Christmas pageant, it brought back a lot of bad memories of that day.  However, I also have a really good memory of that visit- do you remember Mary, the doc's assistant (I think she's officially a nurse practitioner, but I'm not sure) who literally RAN to get the blood for me so I'd make it on time?  I will love her forever for that, she always goes above and beyond to make me feel good about my treatment and even called me at home (with Dr. Mato, another fave of mine) to check on me after this last diagnosis.  There are a few people at the John Theurer Cancer Center I have been really impressed with who help reaffirm my choice to trust my health to them.

As far as post-chemo side effects, I've been feeling great!  Friday and Saturday were virtually normal days, though I tried to take it easy (aside from the kid's music class, a birthday party, moving, painting, cleaning, and trying to finish a blog post...)  I have had some mind fuzziness, but that is often hit or miss due to the transplant last year, so I'm not sure how much of that is connected with the new chemo.  Today I've felt really tired, I slept in 2 hours which I almost never am able to do, and have continued to feel tired all day.  I know the side effects are different for everyone, and they do have a somewhat cumulative effect, but I have been worried that NOT feeling side effects means the drug isn't working.  I don't know if that thought holds any water but it still concerns me.  Adam suggested I'll hopefully start feeling crappy and then I can be happy.   Maybe I shouldn't be complaining right?  Anyhow we won't know whether the drug is working or not until the scans in April so I need to stop worrying!


I have a check-up this week and will have a couple weeks off until the next treatment on March 15.  In the meantime, Adam is turning the big 8 on Wednesday (leap year baby!) so we'll be celebrating his eighth ever birthday in 32 years and I'm hoping to get my new house unpacked and made into a home to be ready for visitors!  Aunt Taryl is coming on the 12th and Adam's mother and sister and her husband are coming on the 17th.  Maybe I should just leave the unpacking for them to help with... :)

Reviews of Adcetris, aka Brentuximab Vedotin, aka SGN-35

I've been doing a lot of reading up on the new drug Adcetris (FDA name Brentuximab Vedotin and trial name SGN-35).  I am scheduled to start treatment next Thursday and am SO excited, even more so after searching the internet for more info.  

I'm reading some really great things about this drug!  I've already written about Adcetris on my family blog and how it is engineered specifically for Hodgkin's Lymphoma patients who have already failed chemo treatment AND an autologous stem cell transplant (from self).  Fitting my situation perfectly!  The average person taking the drug who has refractory Hodgkin's Lymphoma has done 9 treatments (each 1/2 hour long, 3 weeks apart).  Peripheral neuropathy (numbness in hands and feet) seems to be the most annoying side-effect and the main reason why treatments are stopped, because patients can reach the point where the neuropathy can prevent use of the hands and might not completely reverse itself (though it usually does over time).  

I was surprised to find the cost of EACH dose of Adcetris is over $13,000!!  Multiplied by average of 9 treatments... over $100,000 drug!  Crazy.  What a wonderful thing it is to have insurance!!  On top of this treatment I'm up for an allogenic bone marrow transplant which can run $150,000-$200,000.  I'm astonished at the insanely high cost of all this medical stuff.  

The biggest potential downfall of Adcetris is its ability to reactivate a virus that up to 59% of the general population is thought to carry (at least according to Wikipedia, for what that's worth), PML- a brain deteriorating virus.  Wow!   I have been tested for the antibodies that would suggest I am a carrier of the virus and will find out the results of that test next week.  From what I've read there have been two deaths from this virus being reactivated so there is a warning on the drug now but I also think it's not a huge threat.  My mom was taking Tysabri for Multiple Sclerosis and it carries the same warning on it.  As far as I know she is not having her brain eaten from taking the drug! :)

I had a tough time finding personal accounts of this drug as it was approved so recently and the trials were quite small.  I am making this post not only for friends and family to read up on other personal accounts of the drug if they want, but also to help others in their search for reviews of Adcetris because it was difficult for me find.  

http://lymphomahodgkins.blogspot.com/2011/03/my-sgn35-experience.html

(some of the comments at the end of this post are interesting reads)

Beating Cancer While Staying Fabulous 

Holding onto Hope

I hope these cancer fighters are okay with me sharing a link to their blogs (I didn't ask first...).  I love that these people are documenting their fight- I think we could all benefit from reading each other's stories!  

Action Plan

It's as we expected, the cancer is back.  The docs were great, they were very comforting, truthful, and optimistic.  Obviously it's quite a serious thing to have the cancer come back so quickly after chemo and the transplant last year.  However, the docs were optimistic that the cancer did respond well to the chemo last time and they have wonderful things to say about the new drug Adcetris.  

I will be starting chemo next Thursday.  This chemo drug is only a 1/2 hour infusion which means I should only be at the hospital for 5 or 6 hours, rather than the days at a time chemo I had last year.  The new drug sounds really exciting- it's designed to attack only cancer cells rather than the traditional chemotherapy approach that attacks all fast growing cells, both cancer cells and healthy cells.  Adcetris is a highly toxic chemical that attaches itself only to certain markers (CD30) on cancer cells and it goes inside the cell and kills it.  Amazing isn't it?  And it was only just approved in August 2011 specifically for Hodgkin's Lymphoma patients after a failed stem cell transplant.  I guess on the bright side of things the timing couldn't be better!  

The plan is three chemo infusions, one every three weeks and then more testing to see if the tumors are responding well.  If they are, I will likely do a few more infusions of Adcetris with the hopes of getting a complete remission before going in for a bone marrow transplant.  My wonderful brothers will be tested to see if they are a donor match and I will hopefully be receiving one of their immune systems sometime soon.  

In the meantime, the side-effects of the new drug should be comparatively mild and I will be able to go on with everyday life!  Which means moving this weekend and continuing to teach Joy School and Primary and trying to keep my husband and children happy!  It feels so odd that this treatment is stretched out over so many weeks when last time everything was rushed and crazed.  One week I was spending days at the hospital for chemo followed by a week of feeling awful with 3 or 4 appointments at Hackensack only to go back in for more chemo the next week.  Maybe I should be knocking on wood... wouldn't want to jinx this time around! :)

Updates

Okay.  My last post was supposed to be the last one on this blog, as it was titled "Moving On."  However, since that post, I've had two biopsies and am currently awaiting the results from the second one on Wednesday from the oncologist.

In debating whether or not I should even post on this blog I considered the possibility that cancer will never be completely separate from my family and my every day life.  However, I do hope that my specific experience with cancer and all the crappy stuff that goes with it can help someone else, and that someone may not want to read about my every day life.  And, I really don't want to detract from posts about my family or my kids by posting about me and being sick.   I would hate for them to look back on our family "album" and only see depressing stories of being sick.  It's kind of nice for me actually, to have a place where I can document everything, and then push it out of my mind.

So, back to the health issue.  In August 2011 I had a "dirty" PET scan.  The docs thought it could be cancer, but might be an infection my body was fighting off.  So we waited 6 weeks.  In October, another dirty scan, so we decided on biopsy number  3, under the right armpit, to see what was going on.  The node came back non-cancerous, but I was told it still could be, especially since they had such a small piece (1cm node).  Great answer huh?  So it's not cancer, but it could be.  Huh?  So let's wait another 3 months!

Christmas came and went, had a wonderful time with family and really enjoyed being in Utah.

January comes and another dirty scan.  But this time, there's more activity, and they want to go into the chest cavity to take out a "golf ball sized" part of the Thymus that is quite swollen.  Okay, so another simple biopsy right??  Um, no.  This is what I had done:
    Left Mini Thoracotomy
    Anterior Mediastinal Dissection
    Frozen Section
    Pericardial Patch
Yeah, do you even understand those words??  Obviously I didn't, which is why I had the doctor write them down for me! :)

I was in the hospital for 3 nights with a tube hanging out of my ribs to drain the area around my heart.  And because I was hooked to a tube on one side and an IV on the other, I had no privacy (those hospital gowns might not be so bad if they covered 1/2 as much and were as comfortable as a Snuggie...)  Well, I don't need to go into all of the details, especially the ones surrounding the pulling/yanking of the tube out of my chest and that being the creepiest grossest feeling ever...  I'm out now!  Made it home about 4PM.  I can barely breath and I'm in some pain but happier than being in the hospital that's for sure!

Not bad huh?  I think it will heal quite nicely!

I should hopefully get some results on Wednesday.  The docs now think it's "almost certainly" cancer and the scans look "highly suspicious" for cancer recurrence.  Of course I would rather hear that it's not cancer, or it might not be cancer, but I am really sick of WAITING for an answer.  I hope they can tell me one way or the other.