Saturday, November 5, 2011

A Rare Bird

So Geoff and I met with the hematologist oncologist last week. Whew. What a day.

I do indeed have myeloid dysplasia syndrome (MDS) which is a pre-leukemia NEW primary cancer caused by my chemotherapy treatment in 2007. I was one of the less than 1% of people treated with adriamycin and cytoxin chemotherapies to develop MDS and had an even smaller chance of this occurring given my relatively young age. Lucky me! The chemo basically caused me to develop a chromosomal abnormality such that I am now missing a chromosome. It is called 7 q deletion syndrome and is one of the more serious forms of MDS (of course! As if it would be any other way!) My oncologist said at one point that I continue to perplex even the fine medical minds at UNCCH. How cool!

Dr. Foster, the hematologist oncologist I will be seeing, gave us "the talk." Upon receiving my consent, he advised that the prognosis for this disease is not good even by itself (median survival of 14 months) without having late-stage breast cancer but is obviously complicated by the combination of the two cancers. We asked Dr. Foster if it would be ok for me to travel and he said, very forcefully, "GO!!" So go we will!!! I took that to mean "go while you still can."

The family is headed to Amelia Island again this year to the Ritz Carlton Resort, for Thanksgiving food and time with Santa for the girls. They have a large Christmas tree lighting outside and hayrides and photos with Santa, etc. A very fun, family-oriented time for all. And no cooking!

Then, in early December, Geoff and I will scoot off to Paris for a week by ourselves. That will empty my bucket for now. When we get back I can start dreaming about trips to Barcelona or Scotland or something!! Then, for Christmas, we are due to go to Boston as a family to hang out with Geoff's mom and sisters and their kids.

After the trips, I will start treatment :( It will be an infusion treatment 7 days out of every month, which is why I cannot start this before traveling so much.

The hope is that the treatment, as well as the blood transfusions I will receive twice a month and before each big trip, will help my blood counts go up. My platelets, white and red blood cells, and hemoglobin counts have been really low and continue to drop. The transfusions help me to feel better by increasing my red blood cell and hemoglobin counts. The platelet issues require separate platelet transfusions and are more complicated and contraindicated even.

Not to be morose, but the risks I face with the low blood counts are infection (serious hospitalization kind of infection) from low WBC counts and my body's inability to fight off infection, and bleeding to death from the low platelet counts (especially internal bleeding). Then, of course, I still have the breast cancer issues going on with bone and liver metastases which present their own problems.

So, bright news, eh? I just had a blood transfusion and that did give me more energy for life :) Obviously, the situation is serious and I am getting my affairs in order, so to speak. But we still pray for a miracle every day and believe in it!!!!!

Thank you for your continued prayers! We still would love to have food brought to our house despite the food complications, if possible. It is so hard to cook right now.

I do not know what God's plan is for us but I believe with my heart and my soul that he has a reason for my illnesses. I have surrendered my life to Christ and am not afraid of what the future holds for me or my family because I know that even with me gone the girls still have God to hold onto. My hope is that, through this ordeal, the girls and Geoff will become closer to Jesus than they otherwise would. If that happens, isn't all of this somehow for the best? I know, that's a tough jump given the girls' young ages but they have to hold onto someone through this tough time.

Well, off to do something else. Thanks for listening. Sorry this is so long.

Love to you all,

For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

Friday, October 28, 2011

Bone Marrow Biopsy

Well, I'm a bit short on time right now but I wanted to update everyone about my bone marrow biopsy from the 21st. Bottom line is the pathology report still is not in. But the docs did genetic testing on the cells they were able to get and discovered that I am missing a chromosome. It is called 7 q deletion syndrome. I know right? Weird.

Bottom line, I am one of the lucky less than 1% of people who take the chemotherapy regimen (taxotere/adriamycin/cytoxin) and develop acute leukemia as a primary new cancer. Goody for me. It supposedly only occurs in women over 60. Yeah for me again. I believe it is called secondary acute myeloid leukemia when it occurs as a result of chemotherapy and/or radiation treatments.

I meet with a hematologist next week because my oncologist said that he did not feel comfortable dealing with this type of problem (although he will continue to treat me) and that I need a blood specialist. This explains why my white blood cell, red blood cell, hemoglobin, and platelet counts have been so low and continue to drop.

This is not good news, of course. We will know more after talking to the hematologist but I know how my body feels and it is not good. I am probably not up for any aggressive treatments at this point -- I just want to be comfortable. I am otherwise (hah!) healthy and that has to mean something.

We are not going to tell the girls until after meeting with the hematologist next week. No sense talking about something we don't really know anything about.

I'm off to the beach for the evening! I hope that everyone has a wonderful weekend and a great Halloween! I'm supposed to be the emerald witch. We'll see what my energy is like.

I appreciate continued prayers for me but please also pray for Geoff and the girls. They have a tougher road ahead than I do, I expect.


Thursday, October 13, 2011

Update from yesterday's test

Well I figured I'd better not make people wait too long for an update following my doctor's appointment in Chapel Hill yesterday. The blood test showed that my platelets went up to 65 from 58 but, considering the low point is supposed to be around 150, that's still very low. White blood cell count was 1.7 and the red blood cell count and hemoglobin both went down again, further explaining my present fatigue and "loopiness". So... On the 21st I will have a bone marrow biopsy (supposed to be fun, they stick a needle into your pelvis bone) to determine if 1) a new primary cancer, like leukemia or some other blood cancer, has developed; or 2) I do indeed have metastases from the breast cancer or 3) I don't have bone marrow cancer issues at all but some other problem bringing my counts down. Doc believes 2 is most likely. The benefit to knowing more about what's going on in my bone marrow is that it theoretically brings in other treatment possibilities. Dr. Muss is going to talk to the blood oncology docs at UNCCH between now and my next appt with him. Unfortunately, at this point, there are not many, if any, treatment options that are likely to improve my health picture. As I mentioned before, the docs will not give me chemo with blood counts this low because almost any chemo will suppress my bone marrow and bring the counts down even more. The only chemo that does not suppress the marrow is Xeloda which I have already crossed off my list by trying it in February 2010 and having Dr. Muss and I determine that it did not work for me. Doctor Muss also said that my body has responded to all of my treatments the way women's bodies used to respond to BC in the olden days when they did not have any treatments. In other words, everything has failed! Boy that was uplifting. So continued prayers please. The doc was shocked that I have not gotten infected with anything while having a WBC count at 1.7. He said I must have "reserves" keeping me from getting sick. This whole picture is scary to me because my father's blood counts started tanking right before he ended up in the ICU with complications from stage IV lymphoma last year. Damn this cancer!!!! More sad news -- the traveling Hosfords canceled our European cruise for next year :( Money is tight with me not working and, to be frank, if I'm not around in July 2012 I am not sure Geoff and the girls would want to go on that trip (planned entirely by me) without me. I'm supposed to go to a conference in Baltimore at the end of this month put on by Johns Hopkins about new treatments for MBC but we will see. Probably not the best thing to get on a plane with these counts. I feel like the boy in the bubble movie from the 70s..... I am living by this gem from Proverbs 3:5-6 Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all that you do and he will show you which path to take. And also Romans 8:28: And we know that in all things God works for the good of those who love him, who have been called according to his purpose. I keep leaning on the same Bible verses because I cannot memorize very many other ones ;) I do know that all of this health mess fits into God's big movie epic somehow. I don't have Jennifer Anniston's part but maybe the part of some extra on the set. I don't know what that overall plan is but I guess I don't have to know. I'd be ok with all of this if it wasn't for Geoff and the girls. Hope asked me last week why God hadn't healed me when we've been praying for complete healing of my body for years now. Now isn't that a tough question to answer. Ugghh. Love and peace, Sofie

Tuesday, October 4, 2011

Blood issues? Are you kidding?

So it's about time I updated everyone with the latest health news. Ugghh. I went to Chapel Hill September 28th expecting to receive another samarium injection to help with my back pain. Unfortunately, my blood work, which has always been described as "fine" just like I look "fine" [how can you be sick, you look fine! I hear that so often] is no longer fine.

Inexplicably, my platelets, white blood cell count, hemoglobin, etc. has been falling. The platelet count, specifically, is in free fall. It's supposed to be somewhere between 150-440 and was 58, last time they checked. My nuclear medicine doctor was willing to give a smaller samarium dose if the platelet count was somewhere near 100 (it was 89 one week which was low but do-able) but not with it at 58. BTW, your body's platelets help to cause blood clotting when you bleed. If the platelet count gets down in the tens and twenties, my oncologist said, you can start spontaneously bleeding out of your nose and gums and it won't stop. You can bleed to death, essentially.

What caused my platelets to drop? We don't know. I was told on the 28th, when my platelets were down at 58, that I probably have metastases in my bone marrow as well as my bones and my liver. With bone marrow mets, your body has a hard time getting your blood counts up (platelets, WBC, hemoglobin, etc) because there are not enough normal (non-cancerous) cells in your bone marrow making good blood. As a result, you are not eligible for most chemotherapies (which suppress bone marrow so you have to have good blood counts to begin with).

Essentially, we are worried that my platelet counts will keep going down. I am tired these days, and I mean tired. I will do one activity a day, such as walking the dog or maybe going to pilates class, and then I return to bed for the rest of the day. And it is HARD to get through a pilates class because I am exhausted by 15 minutes into the class. But anyone who knows me knows that when I give that up I am in trouble because that is my social life! Yesterday's pilates and dog walk caused me to nap for about 4 hours and spend the rest of the day in my bed! So this makes the tired of 6 months ago seem like a walk in the park.

So, anyway, please pray that my blood counts improve. We cannot even fight these new mets with chemo until my blood recovers. Although I am at peace with my disease and the possibility of going to meet my maker (there is no cancer in heaven :) woo hoo!!!) I know that my children and husband need me here. So please continue to pray -- I know many of you already are.

I go back to Chapel Hill October 12 and will have my blood tested again. Let's hope the numbers go up! I will try and report either way after that appointment.


Wednesday, August 17, 2011

Latest Visit to Scanland

Uggghhh. I hate cancer. I am sitting here in Chapel Hill at the end of a three day scan marathon. Monday consisted of 3 visits to the bone scanner with an add-on visit to the oncologist squeezed in because I was having problems with abdominal pain, bloating, and just generally not feeling well. I was supposed to get a samarium treatment this week. That got cancelled because my nuclear medicine doc feared "complications."

Tuesday was even more fun. I got a CT scan following morning fasting, of my entire body. That was followed by a visit to the MRI for a brain MRI. At least with that, when I fall asleep and twitch, my head can't move anywhere because you're squeezed in like Hannibel Lector. Every day I have been walking to and from the hospital because I am carless (for the benefit of all of the citizens of Chapel Hill!!!!).

Today,I had a visit with my pain medicine provider and my oncologist to go over the results of the scans. The bad news: It looks like I now am the not so proud owner of a bunch of small liver mets. They should not be causing me a lot of problems right now but treatment is limited -- when there is more than one like that, treatment usually involves hormonals or more chemo (yuck). Oh, and the bone mets have grown both in number and in size. So, off the faslodex and back on tamoxifen. At least I will not have any more shots in the rear.

Funny, I was all by myself today (not generally advised when you suspect you might receive bad news but unavoidable this week) and I really did not get upset to hear the news about the liver mets. I guess when the news is fairly predictable it is hard to be surprised or sad.

Coincidentally, today is my FOUR YEAR CANCERVERSARY!!!!!! That means it is 4 years since I was first diagnosed with this blasted disease!!!! So, no matter what, I've made it 4 years. Cancer can just stick it. I will have to celebrate with the family when I get home!!

God is good and somehow, this is part of his plan. We just do not know what yet.............

Love to you all!


Tuesday, July 12, 2011

Sleepy Summer

Happy Summer everyone!

So sorry I have failed to keep my updates coming. Healthwise, over the past few months, my back pain got better for several weeks following my shot of samarium (Quadramet -- the radioactive infusion I got) and now it is in the process of getting worse :( The side effect of the infusion was that it increased my fatigue. Now, I have increased back pain again and I am getting more and more tired as well. Can you say afternoon naps that last 4 hours????

I guess I should be happy, right? I'm not in the hospital or anything like that. The girls are out of school and presently are only doing swim lessons (and gymnastics of course) for two weeks. We spent a lovely, leisurely week at Bald Head Island last week. Ahhhh.... Other than that, it's been daily gymnastics team practices and whatever errands we need to run. The girls have been very patient considering we have not done a lot of fun activities during the work week. Geoff is very good about running them to the pool, etc. every weekend to burn off their energy. And we did get bikes because Hadley finally learned to ride her bike :) I've not ridden mine too much but it is fun when I do!

I will be having another shot of samarium (again, radiation) in a few weeks in Chapel Hill. It will be sometime after I go there August 3 and 4. The real risk with these shots is it increases my risk of infection. But I don't care because the back pain is worse than everything.

So, please don't worry when you don't hear from me! Easier said than done, I know. But I promise to have Geoff post on here if something bad occurs to me... that's what this blog is for, after all! In the meantime, the more I can avoid thinking about cancer, the better! Enjoy the sunshine! (we have to get one benefit from this drought, after all!)


Monday, May 2, 2011

The Beast Claims Another Angel

Hi everyone,

Happy Monday! We had a bit of a rough weekend. A woman who we used to work with at the courthouse in Wilmington lost her 26-year old daughter last Thursday to breast cancer. While I did not really know this young woman, I had reached out to her and spoken to her mother about her at length. I reached out to her and tried to get her to join our "pink posse" group of BC survivors. We also ran into her at UNC Chapel Hill Hospital when we both had doctors' appointments. What bothers me so much is that I had a lot in common with this young woman.

I don't know about the past few months but last I heard she "only" had bone mets (no organ involvement) and mets in one lymph node on her chest. This woman was stage IV at diagnosis because they found the bone mets when the docs also found cancer in one of her breasts. She did not even have as many bone mets as I do and seemed to be doing fairly well (based upon her blog) up until recently. She even managed to work at a local restaurant and earn a college degree at ECU through all of this.

I felt drawn to go to the funeral despite the fact that we did not personally know this young lady. The church was packed to overflow as hundreds of people attended her funeral. While exiting the church following the wonderful service, her mother walked up to me (and not any of the other dozens of people standing near the exit door) put her arms around me and proceeded to break down into tears. I felt so horrible for this mother who spent the past 3 years taking her daughter to all kinds of appointments and procedures. A child is not supposed to precede their parent in death! It was so sad. I have found some comfort in knowing that she is in a better place now. This young lady struggled a great deal with being in her 20's and having stage IV breast cancer. While her friends got married, graduated from college, and had babies, she went to see her oncologist and got Lupron shots (to shut down her ovarian function). While her friends dated men she wondered what kind of a man would want to date a 26 year old woman who has had a mastectomy. Ugghh.

All of this made me feel fortunate to have my husband and children but of course also scared that I could go that fast. And of course, I have a lot more responsibility BECAUSE I have 2 girls. I don't usually think about statistics, but they say that about 20% of stage IV breast cancer patients live 5 years. I'm closing in on 4 years in August 2011. I KNOW I can beat the odds but I also know that I may not. It is all in God's hands and I GLADLY surrender this stress to him. It's too much for me to handle. I recall the Apostle Paul in 2 Corinthians (forget exactly where) asking God to remove the "thorn" [illness or ailment] from his side. Lord, I pray for you to remove the thorn from my side. Heal my pain. Give me the energy to care for our children and my husband. That is all I ask. Please take good care of our Angel Kim in heaven. And ease the burden in her mother Vicki's heart -- let her feel the peace and comfort that only you can bring. In Christ's name,

Monday, April 4, 2011


Sorry so long, no post. It's been a rough road back from chemo and, unlike my chemo experience in 2007, I won't bounce back to an energetic, pain-free Sofie. But at least I am feeling somewhat more awake at 8 pm than I was during chemo. So that's an improvement. My pain issues continue to plague me and are not well-managed with all the pain meds I am taking so that is my biggest problem right now. My oncologist and I have decided to try Quadramet, which is a radioactive infusion given that sends radiation-type treatment through your bloodstream to your bones. It is supposed to help relieve bone pain caused by the metastases and is kind of like a whole body radiation without going under the radiation machine. We'll see if it helps, hopefully! If it does not provide relief, then we know that most of my pain is tissue or nerve related and we'll have to figure something else out.

In the meantime, life goes on, right? Spring is here :), the kids are busy (as usual), and it's about beach time which is so exciting! Geoff and I are going to have an overnight in downtown Wilmington in a couple of weeks (to try and make up for our brief stay at the Graystone Inn last year that ended up with me in the hospital!) Between that and our trips to Oak Island to get the condo ready for the summer we have many blessings to focus on.... and distract us from the beast that is my cancer.

Speaking of, our pastor Mike and Hugo from PC3 came to pray with Geoff and I last week. That was very nice... I appreciate any and all prayers and continue to believe that a miracle can happen! If it does not, I am sure that I am part of some plan of God's that I just do not know about yet. Either way, all I can do is make the best of it and move on.

Happy Spring to all!

Tuesday, March 1, 2011


Sorry for not posting for so long. Suffice it to say, I've been in a LOT of pain lately. Fortunately, I got the whole nausea/chemo thing under control by begging for Emend which is a fantastic, but expensive, anti-nausea drug. I also finally got Blue Cross to approve one of my pain meds, Fentora, which is about $6000 per month at my dose (for insurance to pay, not me!).

I don't know what happened to increase the pain. I went to some legal CLEs in a couple of weeks, sitting in chairs. Then we drove to Simpsonville, SC for our oldest daughter's gymnastics meet. Lots of time in the car.

I am to the point now where it's absolutely excruciating to sit in any chair for any length of time. Even to just drive across town. So I cancelled my trip to Orlando for the Young Survivors' breast cancer conference because I figured I'd just be in the hotel room anyway. It sucks.

On a high note, I joined a new ladies small group from my church that is awesome! It's during the daytime so I am able to handle the time and I have energy. Unfortunately, anything after 6 pm now for me is just not doable.

I also got to kick Avastin to the curb. Clearly, all these drugs are not working and the nosebleeds and wounds not healing (all known side effects of Avastin) really got old. Won't go into all the details of what wounds did not heal.... So it's just Taxol now for 3 more weeks. Then I am done. I want my hair back. I want some energy back. I want to try and find a treatment that will HELP me with my back/pelvis pain.

Don't get me wrong, I fight and struggle through the pain. Hot yoga is a new obsession. The only problem is that I am so tired after the class that I am asleep by 8 pm. I need to find a night class because then I could just fall asleep afterward! But it is awesome! Reminds me of the olden days and the runners' high. Aggghhhh... And I still love my pilates and walking the dog. I just have to lie down a lot when I'm not being active. Which is good.

Thank you all SO MUCH for the food and the prayers!!! We have been inundated with food. I think we can safely stop by the end of this month and by April I should be back to having SOME energy. I hope. Prayers for my next treatment would be appreciated, and wisdom to my oncologist to find something that might work. God is the only one who can fix this mess.

Love you all!

Monday, January 17, 2011

Chemo Hell...

Well, it finally happened. I scooted through my first round of chemo (TAC) in 2007 pretty well. Had some nausea and fatigue. Nothing like what happened last Thursday night.

I was literally up all night vomiting. (sorry folks, this is graphic). Probably threw up 10 times. My throat got so swollen from the vomiting that only today, four days later, can I swallow without extreme pain. I have never been that sick in my life and I hope I never get that way again. What happened? I don't know.

See, when I started the Taxol/Avastin treatment, my oncologist told me that there was only a small chance of getting any nausea. I did not receive any anti nausea meds that I got in 2007, the really good expensive ones like Aloxi or Emend. I have some Zofran left over from other treatments but that could not face the big bad heaves I had Thursday night. I literally slept all night with my head in the toilet because I could not move. The next few days (until today) my head was banging all day long. Really, this is the chemo we've all heard about from the old days that makes everyone so scared to get chemo. I honestly can't believe that this low-dose Taxol/Avastin (and the Avastin is not supposed to cause ANY nausea or vomiting) would make me sicker than the high-dose Adriamycin I got a few years ago. They call that stuff the red devil because it's so bad. ANYWAY, enough talk about puke.

So, I got my head shaved last week. My lovely, dear husband got his shaved at the same time for camaraderie. He's so awesome. I've not sported my Penelope Cruz wig left. It's here and it's lovely but it needs some time with a pair of scissors and an expert at cutting wig hair. Then, I'll break it out with some cool outfit. It makes me feel like I'm 25 because the hair literally goes past the middle of my back. I've never had my hair that long! It's fun and a nice diversion from being ill.

Well folks, off to rest. Please keep those meals coming. We appreciate and love them! Just so you know, we all eat red meat! I gave up being a vegetarian in college. One week, we had about 8 chicken meals and I do NOT want to sound ungrateful, I TRULY appreciate the effort of cooking a meal because I am not cooking now. When I try to cook, I exhaust myself. I know how hard it is to shop for the food, find the recipe, blah, blah. But we can eat red meat and soups too. I know Hadley's allergies make things confusing but it's easiest to start from the ground up. Pick a main ingredient (ie meat) and add to it. Ok, I'll shut up now because I don't want to sound ungrateful. Sometimes I am too blunt.

As a last note, should be the first note, I've chosen my "one word" and it is surrender. I am going to try and surrender my life, my health, my $ issues, all of it, to God. I know that's what we're meant to do but it is easier said than done.

Love to all,

Sunday, January 2, 2011

Penelope Cruz moves to Magnolia Greens

In case you don't recognize me in the next few weeks, I'll be the chick that looks like Penelope Cruz walking her dog through the streets of Leland. Yeah, "that me." I had my first chemo session with Taxol/Avastin last week and it was no picnic. Nausea (that apparently I was not supposed to get), fatigue, and oh yeah, pain because I can never get my pain prescriptions filled properly due to problems with the pharmacy stocking the meds and the insurance company agreeing to pay for them. AGGH@##@%%%%!!!! So, I decided to get a new wig for the hair loss this time around to cheer myself up. I got the "Lola" wig (that's a scary name, I know) that looks to me a lot like Penelope Cruz's hair from the late 90's. So, we'll see! I bought it online so there is no telling what I'll look like!

Our holidays were good. Just now putting the decorations away, which I love because it means the craziness of the holidays is done! I've been blessed with such wonderful trips to Napa, Florida, and Asheville that I'm ready to hunker down and watch the days pass from the comfort of my life raft (bed) while watching my favorite tv. I don't expect to be up to too much activity because the treatments are weekly (every Wednesday) in Chapel Hill. I have about 3 days of recovery, a couple of days of feeling ok, and then another treatment. I will have every 4th Wednesday off. Woo hoo! So, lots of driving, lots of nausea, lots of fatigue. I'll survive. Hopefully, I'll notice an improvement in a few weeks. I'm willing to give it up to 6 months. If I don't see an improvement in my pain by then, I'm stopping.

Our office manager Gladys is coordinating help for us. We're asking for drivers to take me to Chapel Hill and back on treatment days, meals, and help getting the girls to gymnastics. Fortunately, our church has been helpful as have many of our friends who continue to amaze me with the help they are willing to provide. Our youngest daughter started competitive team gymnastics recently so her schedule is even busier. But, with God's help and that of many other people too, we'll get through this tough time.

Happy New Year to all and God bless!