Thursday, March 22, 2012

Sofie Wonderly Hosford May 21, 1970-March 21, 2012

Most folks know that Sofie left this earthly existence yesterday just before 5:00 p.m. The last twenty-four hours were tough and this experience is hard to handle. The girls and I greatly appreciate all of the kind thoughts, prayers, and tears shed for our loss. We will need all of your help during the next few weeks and months.
Today, my sister Amy arrived from Boston, having left at basically a moments notice to come here. She is awesome and we couldn't get through this stage of our grief without her. We are having a memorial service for Sofie on Wednesday, March 28th at 3:00 p.m. at Port City Community Church. We're planning for a reception to follow. I will post more details as plans converge.
I miss Sofie so much that I physically hurt. I know that she is in a better place and her suffering has ended. Yesterday, there was a great celebration in Heaven. At this moment, with that knowledge and with the love of everyone who has kept us in thoughts and prayers, we will get through today.

Tuesday, March 13, 2012

Geoff's update for Sofie

This is Geoff writing for Sofie with an update.
Sofie went to the hospital last Friday, March 9th via the Leland Fire/Rescue crew. Those men gave her excellent care and treatment for a very frightening event. She had shortness of breath and an oxygen level of 80 (healthy is between 96 and 100). It took some lidocaine to get her heart under control. Arriving at the ER around 4:00, the physicians ran CT scans, x-rays and concluded that Sofie has pneumonia. She was admitted and we made it to a room by 12:45 a.m. In addition to her breathing problems, heart issue, and pneumonia, she had a great deal of pain in her left chest, right side and upper back. It was a difficult night.
After a couple rounds of IV antibiotics and IV pain medications, the hospital transferred her from the 10th floor to the 8th floor for cardiac issues. That transition was not smooth to say the least and it was frustrating dealing with some of the problems with it. Our minister stopped by around this time, which helped keep us from expressing ourselves with inappropriate language. Saturday and Sunday were tough days and it is no fun to watch someone who you love suffer with such pain.
Yesterday, Sofie improved some and her doctor expected to discharge her on Tuesday. After getting that good news, there was some sobering moments, meeting with some staff from Hospice and arranging for additional help.
Sofie will have oxygen at home. She will have it in a portable bag. She will also have a cane and a wheelchair because of all of those complications that come with heart and lung problems.
We are sitting here now, waiting for the discharge orders. Thank you to all who stopped in and visited with Sofie, especially during those times where I had to slip away. Thank you to all who have kept us in your prayers.

Wednesday, February 29, 2012

Cancer sucks too

Sorry I've been off the radar for awhile, but my health has worsened. One of the really bad things about having 2 forms of incurable cancer is that my symptoms only seem to get worse, and almost never get better.

My latest issue has been anemia. While I've been battling this since I was diagnosed with MDS last summer, it continues to worsen. I was hospitalized three times over the course of 2 weeks, both in Chapel Hill and at home and I have needed red blood and platelet transfusions about every 10 days to 2 weeks. In between the transfusions, I have ZERO energy. Those who know me well know that I love being active. My activity level has dwindled to where going up the stairs in our house is to be avoided because, even shortly after a transfusion, it leaves me lightheaded, dizzy and weak. By the time my hemoglobin is worthy of a transfusion, 8 or lower, I can barely get myself off the bed. A month ago I was trying to do 20 or 30 minute easy yoga or pilates DVDs but I can't even handle that now. Last night, Hadley and I walked the dog about a mile and it resulted in severe shoulder pain. A few days before, our entire family walked the dog the same route and it left me with a stabbing pain in my upper right abdominal area (yes, I have liver mets too). So, exercise is a no go these days and that makes me sad :(

Anyhoo, Geoff and I are going to try and get the family away for a one week stay somewhere in the Caribbean. We want to pull out all the stops, stay somewhere we can almost sleep on the beach but still be waited on hand and foot. We want the family to take one last vacation while I still can -- not to be morose but we're scared that by the end of April I may not have the energy to go anywhere.

The difference in my energy level and overall condition has dramatically worsened since our Paris trip. These weeks have been very difficult for our family. Geoff is exhausted from driving both girls to different gymnastics meets all over the east coast every weekend (by himself). He works all week and then does the bulk of the child care every evening and weekend. The girls are sad because they are watching their mama worsen and spend all day and night in bed, missing their gymnastics meets and everything else. (BTW, my husband rocks, he is my soulmate, and I cannot express how much I love him and how impressed I am by his ability to rise to the occasion!)

As for me, I feel strange when I leave the house. It is very difficult to do so and I do not go anywhere very often as a result. But of course, that is not an exciting life either.

Thus, Geoff and I want to build some happy memories for the spring of 2012. We want to go somewhere warm, luxurious but that is not $30,000 (eek!). I am thinking Jamaica (Half Moon Bay Resort), Andros Island in the Bahamas, St. Martin (rent a villa on the beach this time), Anguilla, or maybe Barbados. I'll get a travel agent this time ;)

Thanks to all who have provided food and rides! We could not make it without you! I hope to have more smiling beach photos to post soon.

Health and happiness to all and God Bless!


Monday, January 30, 2012

Chemo sucks

Hi everyone,

I started the Vidaza treatment January 16 for the MDS. This is supposed to raise my blood counts, in the long run, and reduce my dependence on blood transfusions. Of course, in the short run, it reduces my blood counts even more. (?) and has a whole host of other fun side effects.

I, with the help of my doctors at UNC, arranged to get the Vidaza administered here in Leland by Dr. Arb since the treatment is supposed to be M-F one week and M-Tues the following week. I won't go into the difficulty of doing that (can you say red tape!), since I used to see Dr. Kotz at Hanover Medical in Wilmington, but anyway..... I am now a patient of Dr. Arb for local treatments like this.

The doctors kind of minimized the side effects of Vidaza. Seems like that always happens.... I started with sub-cutaneous injection of this med. I have one arm and a belly to use as a pin cushion for this fun. Two shots per day. I got the shots in my left arm (can't use the right b/c of lymph node removal in 2007) and then did 2 days in my belly, for a total of 4 shots there. My belly turned black and blue, with red circles around it; it was disgusting!!!! Anyway, after that I decided to go to the infused Vidaza that goes through my port. Of course, that causes more nausea (I already had a lot of nausea). So, I made it 5 days and then asked Dr. Foster if we could call it done. He said yes, thank God! I felt just as bad as I did after the Adriamycin that caused this blood problem in the first place. Did I mention I hate chemo?!

I am supposed to do the Vidaza 3-4 cycles to make sure it works. But life goes on, right? Geoff and I got tickets to see Elton John at the RBC center March 16 and I will NOT be doing Vidaza that week even though I am currently scheduled to do so. I'd be puking the whole ride up to Raleigh otherwise! So we may have to be a little bit flexible with the Vidaza scheduling. I have mixed feelings about bothering with this to begin treatment has worked for me yet, you know?

So, I went to get my blood checked last Friday the 27th. Geoff and the girls were in the car headed for Maryland for Hope's rhythmic gymnastics meet. Of course, I needed a blood and platelet transfusion. My platelet count was 7!!!! It's supposed to be around 140 but has lately been 25 ish. At 7, I was at risk of bleeding to death internally, around the brain, or in the gums. Thank goodness, the only SE I saw was red dots all over my legs.

Anyhoo, I drove myself to the hospital for a transfusion, thinking I'd be home that night. Instead, I got admitted overnight and they didn't finish the transfusion until after 3 am!!! I can't say it was restful, because every hour or so they had to change bags or check vitals or whatever. Anyway, I got a platelet as well as a blood transfusion. Unfortunately, the platelets only last 3-4 days, but I should be good to go despite that for a couple of weeks (fingers crossed!)

So, my life has become fairly slow. I spend a lot of time in our new (awesome) Tempur Pedic bed with the adjustable mattress!!! (I was so uncomfortable at the hospitable in the lousy bed it wasn't even funny). Now, I can raise the mattress to read or watch tv, or whatever and my back has been loving it.

I walk the dog about a mile most days. I try to do yoga or pilates for about 30 minutes a few times a week. But I am out of breath a lot. I have not gone to the pilates studio in weeks because I don't drive very much and I don't think I could make it through a 60 minute class. I am very tired and don't cook at all (hint, hint, we need meals please!!) I am glad we went to Paris when we did because the Lord blessed me with stamina for that trip and 2012 ushered in a new phase of health for me. I am ok with whatever he has in store for me though.

The girls, on the other hand, are not ok with this. They had a bit of a "breakthrough" in their grief therapy the other day with both of them crying.... I knew they were holding their emotions in. I think they've noticed how slow I've gotten and they realize that they may lose their mom. Very sad.... all I can do is talk to them about it and let them attach themselves to me. Hope in particular wants to be with me all the time when we are home. Ugghh. Prayers please for our girls to find God in all of this mess. I fear 2012 may be a tough year for the Hosfords.

So that's what is going on with us... hope you all are well!


Monday, January 2, 2012

Hello 2012!!!!

I hope that everyone had a wonderful Christmas. We certainly did. I am so grateful to my sister in law Amy for allowing me to sleep and/or rest in her guest room day after blissful day. I had a doctor's appointment at Dana Farber on Dec 22. I was supposed to have doc appointments in Chapel Hill on Dec 16, but since we just flew back from Paris on Dec 13, got in late and were seriously jet lagged, I just could not handle the 6 hour (round trip) drive. Anyhow, considering the 10 mile drive to Dana Farber and having seen Dr. Winer in the past, we chose that option. It was a good thing we did too-- my blood counts were horrific. Hemoglobin was below 8, platelets were 24 (having dropped from 45 on Dec 5) and my neutrophil and white blood cell counts remain low. Long story long, I received my first platelet transfusion, which lasts only 4-5 days, and a whopping 3 units of blood. Nevertheless, the anemia left me tired over the break. I am so thankful that (knock on wood) I have remained infection free with no immune system.

However, Paris was awesome!!! God blessed me with sufficient energy to survive long plane rides, hours in airports, and a husband who loves to use his feet as the sole means of transportation while on vacation. (truth be told, I didn't object). We saw: the Eiffel Tower at day and nighttime, Notre Dame, the Louvre, the Rodin museum, Sacre Coeur, the Church of Saint Louis, the church St. Eustache, the church St. Sulpice, the church St. Germaine de Pres, Versailles, as well as numerous cafes, restaurants, and stores. I must admit -- seeing Paris on foot allows you to appreciate the architecture and the beauty of EVERYTHING Paris. They don't even build ugly bridges!! The only sight we couldn't get in to see was the Catacombs (it closed literally in our faces).

Back to reality. I am hanging the carrot of further travel to keep me marching on. My dear friend Wendy, who watched our girls while we went to Paris, and I talked about a late spring trip back to Napa. Not too much for wine tasting (I barely drink wine these days) but for relaxation and spa treatments, and enjoying the Milliken Creek inn. We will see. First, I have to pay some bills. Oh yeah, and start that decitabine treatment for my new cancer. Oh yeah, that. It will involve 5 consecutive days out of every 28 days, for 3-4 months. I think I will get treated here but keep my docs in chapel hill. Do you know my oncologist and hematologist in chapel hill each spend about 30 minutes with me, per appointment? That's just talking time!! Those are some docs with good bedside manner! That's why we make the drive.

This is long. I will post photos later. God bless you all and I hope the post-holiday hangover doesn't hurt too much!


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.