Englishgirl in Indiana

Despite being able to provide blood and platelets to support my low blood counts the doctors have essentially said there is nothing that they can do to help me. This being the case the we are starting to look at different remedies and alternatives and other options for cure. I have no doubt of healing as I still have things to do here! I know He has great plans for me and I refuse to be stopped at this stage. So much going on but I’m feeling great and stronger each day and know that as each day passes and each item of medical paraphernalia is removed, (catheter, oxygen line, Hickman changed to PICC, etc, etc.) life is getting nicer. One of the the things K and I are starting to explore is food detoxification and juicing and eating properly as it relates to cancer. The Crazy Sexy Cancer site is a fantastic site for this and I’m really excited at starting this.

I am of course continuing to feel great and enjoying the freedom of not having a catheter in enormously!

Filed under: cancer, Ed, T-cell Lymphoma on July 22nd, 2008 | 5 Comments »

Hello,

This is Keith I am setting up my blog. It is not as cool as Mélaine’s but I will try to blog daily if possible.

Here is the Link

http://keithjustus.wordpress.com

Filed under: uncategorised, links on July 20th, 2008 | 1 Comment »

Typed by Keith, dictated by Mélaine

Hey who needs a spleen after all? After my last post, my spleen was causing me much distress and a lot of pain and getting quite enlarged. So the doctors decided to perform a splenectomy on Friday. This went remarkably well as my spleen was the size of my liver when it should have been the size of my palm i.e. way too big! Luc and Keith waited patiently whilst being harassed by a lovely couple of Jehovah’s Witnesses. The hope was that taking my spleen out would have helped my platelet counts go up enough, (to get the JW off our back), and proceed with either bone marrow transplant, more chemo therapy treatment or an alternative treatment. Unfortunately, my counts did not go up as we had hoped. Platelet counts need to be of a substantial and sustained number to be able to proceed with such treatments. I am still being heavily supported with blood products and pain meds and so we are starting to look at heading back to Fort Wayne at some point next week to proceed with hospice care.

We are all doing well and I am still in good spirits and I am kept in continuos positivity and humor by K, Luc and Jerry who provide a 24 hour circus and comedy act.

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on July 17th, 2008 | 7 Comments »

So much for that plan! Those few days out of the hospital will have to wait. Around the same time that they started me back on Neuprogen, they also decided to taper me off the steroids. As the days have gone on my fevers are getting worse (104 today) and last night I experienced the same excruciating bone pain that I had when I was taken into hospital back in March. So I spent last night sweating up a storm and having the doctors/nurses frantically adjusting my pain meds. I did manage some sleep intermittently throughout the night and woke up to yet more fevers and the pain starting again. So more blood cultures and pain medication assessment. Fortunately my counts have gone up, not much but a small climb which is good but they still gave me platelets and blood. The doctors made the decision to take my steroids back up, to try and get rid of the fevers, and they’re also going to hold off on the Neuprogen and see if my bone pain goes away. As of writing my last few vital takings of my temp have been good, no temperature but it also seems to come on at night a lot as well so we’ll see what happens in a few hours. The worst thing about it all was that last night my legs were so weak and everything was just too painful they brought me a bedside commode to use. For the first time in this disease I felt utterly dependent on someone else; humiliated at the fact that I couldn’t use a proper bathroom. Anyway needs must and I ended up using it to pee but I sure as hell wasn’t going to take a crap in it and staved off my regular until I could make it to the proper toilet. But it did remind me of how low this disease can bring one and while I’m no prude there are certain base human dignities that it’s nice to maintain. Cancer does not allow for that.

And of that lovely note I want to turn you on to a very cool website called My Crazy Sexy Life and Crazy Sexy Cancer. Great sites to check out. The community was started by a girl, Kris Carr, my age diagnosed with terminal cancer. She made a movie that was shown on MTV and brought a super book out last year that I have devoured time and time again. She brings a refreshing take on her approach to dealing with cancer and it was nice to find someone and thus a whole community of people my age dealing with the disease.

Filed under: cancer, T-cell Lymphoma on July 7th, 2008 | 2 Comments »

This was sent from our dear friends, Chris and Renée who own their own dog organic biscuit company - click here for further information on Barkwheats.

Hello Barkwheats Aficionados!

Be sure to tune in on Saturday July 5 at 7:30 on WLBZ-2 and WCSH-6! If you’re out of state, don’t worry! I’ll have a video of the report to post up Sunday morning at our site.

Filed under: links, famille et amis, culinery delights, living the dream on July 4th, 2008 | 1 Comment »

Still in the hospital, still waiting for my counts to start coming back up, in particular the white counts and the neutrophils. The docs also started me on Neuprogen yesterday. Neuprogen is the bone marrow stimulant that is given on a daily basis. Neulasta is the two week stimulant which I reacted to quite spectacularly those few weeks ago and ended up in ER with a serious allergic reaction. Hopefully the Neuprogen won’t have the same effect - although I reacted about a week after the shots with some minor rashes. Needless to say I ended up with a temperature last night, sooo boring, but didn’t have any other symptoms other than the weird trapped nerve feeling I get with bone marrow stimulants. Very uncomfortable but nothing that some good pain meds can’t control. Anyway so of course with fevers and low white counts they are super reluctant to let me escape. They’ve pushed back the start date for my pre-BMT chemo so we’re probably looking at the latter part of next week rather than the beginning - again the doctors want to make sure that my counts are good, my organ functions are stable, etc, etc. Luc’s harvesting will still take place on the 15th and depending on whether I’m ready for transplant or not on that day, we may end up freezing his cells so they can be put in me at a later date. Still hoping for just a few days out of the hospital before the official admittance onto the BMT floor and I find myself stuck in here in isolation for the next many weeks.

Mentally and emotionally I’m doing okay, although yesterday I did have a little crying session when chatting with Bob (and then my phone totally died right in the middle of our interesting, thoughtful, repertoire - sorry Bob!). Needless to say I felt much better afterwards, nothing like a good cry for an effective cathartic experience. Today I then felt much more with it and able to deal with the doctors. While obviously the emotional side of this whole experience has been underlying I find trying to deal with it with too much emotion utterly exhausting. I’d rather put my energy into getting well, focusing on the fun things I have to do for the upcoming semesters, even just reading, just enjoying life around me, however confined to four, white walls. Besides being British does provide me with a certain amount of stoicism that I actually find huge comfort in. I love knowing I can have a good cry every now and then but that ultimately I can rely on common sense and inner strength. I think that’s what brings me calmness in all of this; the key of course is finding the balance and making sure that every now and then I do have a good cry and get out the innate frustrations.

Luc has been working hard this week, enjoying the ease of wireless technology outside and here’s a pic of me and the bro - it’s a bit grainy unfortunately but I’ll try and get that fixed.

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on July 4th, 2008 | No Comments »

So I have to say that having one’s brother donate Bone Marrow in order to save one’s life is a pretty amazing thing. As things are getting closer for the transplant and now that Luc is here, I’m starting to see what an incredible experience this is. What’s incredible is that the doctors can take Luc’s healthy, happy stem cells and put them into my bare and barren marrow, (once all the pre-BMT chemo has blitzed the cancer and diseased cells) and that my body will use his happy cells to make me new happy cells. Now obviously bone marrow stem cell transplant is a little more complicated than my simple explanation but essentially that’s what we’re playing with. And I’m completely honoured to have my brother’s bone marrow. Of course, if he was a sickly thing it might be another matter but fortunately he’s young and buff and I figure his is probably some of the healthiest bone marrow going! Seriously though, I’m in awe of my brother at this moment and know I will be forever in his stem cell debt.

Filed under: cancer, T-cell Lymphoma, BMT on June 30th, 2008 | 5 Comments »

Twists and turns all the way. I’ve just finished another session of the McGrath Chemo regime. I enjoyed some lovely time at home, catching up on work, spending time with my little bean and loving being at home with my family. Unfortunately my lymph nodes and fevers thought the time at home was lovely too and decided to come all out. When I came up for my couple of days of Bone Marrow Transplant testing, the doctors decided that I needed to be admitted for another round of chemo and to keep an eye on the fevers as obviously the disease is fairly prevalent and they felt that I wouldn’t last the one - two weeks until the BMT chemo admittance, not due until the 7th. It’s all such fun. So I got admitted on Monday night and started chemo on Tuesday. I’ve felt pretty rough because of it this week but am finally starting to feel a bit more together and even managed some very tasty lamb chops that Keith brought - yummy, scrummy! This evening Luc arrives, providing his delayed flight gets a move on, and tomorrow starts his testing for the BMT. I finish mine off and meet with the specialist and as far as we know everything is on schedule for the transplant.

And a very special Happy Birthday to the birthday boy - eek, I’m married to a 40-year old!

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on June 29th, 2008 | 2 Comments »

It’s crazy how this disease has a mind of its own. Every time I think I can plan and organise, the powers that be say, “Girl, let it go. This is not in your hands.” While I know I have the power to aid in my healing through positive mental attitude and a good diet, filling my body with nutritional and healthy things, I am aware that the timing of things happening throughout this disease is not in my control. Lessening control of that around me and allowing others to do things for me is something I struggle with hugely. Not being in control is just as difficult for me and I am convinced that part of what I must learn from having this is to relinquish control of the things that don’t matter, allow others to help me so that I can enjoy life. The last few years I have experienced such inner conflict with where I am in my life, situationally and mentally. I have struggled with wanting more but not knowing what more is and knowing that really it’s not the answer. I am slowly learning new thought patterns, new ways to appreciate life and others, of accepting what I’m doing, where I am, that some things are not meant to be and that others are. But yet I still cling to trying to control rather than enjoying.

Anyway, all this self-perspective has come about because I went up to see Dr. S last week to discuss further options and next stage of chemo, etc. When I left hospital last I was put on steroids (Prednisone) for all those fun reactions I’d been having and Dr. S was a bit concerned that these may have been masking what the actual disease was doing. So he advised me he was going to take me off them very rapidly. Monday I took my last one and almost immediately I had a temperature, lymph nodes on my neck popped up, I felt that sore muscle and tender to the touch skin feeling. Ugh. So yesterday we were up at the clinic again with the doctors telling me, okay, we’re doing the bone marrow transplant like next week! I was completely and utterly overwhelmed. Not about the bone marrow transplant. That doesn’t bother me, it’s exciting really to think that my brother can donate some of his bone marrow that essential may provide a new lease of life for my sick body. What freaked me out was the concept of not having time to get organised, to plan. Knowing that I will be there for 100 days after the transplant, (at the Lodge, not in hospital), I knew I needed time to prepare, to sort out work, to make up my little boxes of tech stuff, of books, of all those things that will allow me to feel like I have a nurturing and healing environment. We met with several doctors and nurses and coordinators and I just kept bursting into tears, because I was feeling utterly rushed. Eventually K and I were taking a break and having a sandwich and Julie, (she’s the coolest!), came over and said, “Look, just go home, take the next few days to relax, absorb everything, enjoy your family. Start again next week.” So we did.

Today was a better day. We were able to speak to Luc, get some of our timeline questions answered from our transplant coordinator and have a better overall picture of what needs to happen. As it turns out we’ll head up to the clinic on Sunday evening/Monday for a day of testing - PET scan, bone marrow biopsy (yet another one), EKG, a lot of labwork, chest x-ray and all sorts of other fun stuff. Then I have the rest of the week to get myself sorted, put in for my time off at work, figure out clothes to take (!), etc, etc. Luc comes in the following weekend for his testing, not as intensive as mine but equally as annoying I’m sure. On the 7th I am admitted to hospital and my killer chemo starts. This is seven days of chemo that will kill as much of everything in my bone marrow as possible, emptying it out so that the new stem cells can do their thing. I have a day of “rest” (ha-ha) and then on the 15th the transplant takes place. They’ll harvest the bone marrow from my brother in the morning and then transfuse it into me in the afternoon. Obviously these dates could change slightly, but those are our goals. The British Leukaemia Research has an excellent booklet on Blood and Bone Marrow Transplantation The Seven Steps. It is really informative and better than anything I’ve seen yet over here, not that I’ve seen much here mind you but I’ve not done huge searching. It also has a bit for the donor who seems to get overlooked in the whole process, at least from what I can tell. And yet, without the donor…as with everything that has gone on during this experience I am overwhelmed and excited that my brother will be leaving his newborn baby and wife at a time when he is needed there and unselfishly offering up a litre - a litre and a half of his bone marrow in order to essentially save my life. How completely humbling is that?

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on June 19th, 2008 | 5 Comments »

I’m still at home! It is so amazing. I have a whole new appreciation for my home and my garden and being with my family and simply enjoying what’s around me.

I was supposed to head back to Cleveland last week but my counts, particularly platelets were still too low to continue with further chemo and I had to go in on Friday for another platelet transfusion. So Dr. S gave me a few more days. Monday my counts were up and doing great but one of my lymph nodes, a particularly persistent one at the back of my head, had come up again. So I called Julie and Dr. S and they decided they needed to see me, so on Tuesday K and I trekked back up to Cleveland. I’m really glad we did as we had a good meeting and I feel like I have some sort of goal. Obviously the goal is the transplant but as to how to get to that point I wasn’t quite sure. Basically Dr. S told me that what they need to see is a period of remission, about four weeks/a month where my counts come back up to normal but I am seemingly “free” of the disease, i.e. no pesky lymph nodes, before doing the transplant. He is pleased with my progress so far but a little concerned that I was still getting this lymph node appearing. However because that was the only one and that otherwise I seem to be doing well, he decided to take me off the steroids and give me another week to see how things go. In other words can I manage to get through another week of being somewhat asymptomatic before we do the next round? If I am able to make it through another week then I’ll have another session of the initial bit of the McGrath chemo regime, here at Lutheran, (yeah!) and then probably another one, maybe even one more after that, before aiming to do the transplant around September. As I said the goal is to have a good period of inactive longevity between each chemo sessions. Dr. S also gave me some other regime options and told me about a new research study they have for a new drug targeted at T-cell and NK T-cell lymphomas that I could participate in. I feel really positive about my options even though I know ultimately we’re aiming for the transplant. I also received the confirmation that my brother is a definite DNA match for bone marrow transplant, which is great news.

I went in to-day for my bi-weekly labs and had fantastic results. My WBC is at 12.4 which is actually over normal but that’s okay. The Neurlasta stem cell stimulant they give me can cause the white blood cells to go into overdrive. Either way I’m not neutropenic and can eat salads! My Hgb is at 10.6, still low but climbing and my platelets are at 174, which is the highest they’re been for months and within the normal range. Totally woo-hoo! As I said to Dr. S and K, for the first time in a very long time I feel “normal”. The body still aches a bit, my hair is very thin and my muscles are completely pathetic, still no jumping up the steps or anything like that, but I feel very well. I even managed to get into the office yesterday and sit at my desk for forty-five minutes or so before heading out for Amberly’s birthday lunch. It was so nice to be DIET again although all the excitement did have me in bed before 9 pm last night! Apparently I can still only cope with so much. I will try and head into the office for a few hours next week as well - it’s super to finally be close enough to consider doing that.

As so often in the last couple of weeks I feel so blessed to be at home and to have such terrific friends and family. They have truly been amazing and I am consistently choked up when I think about how much time my parents are devoting to caring for me and helping us and how much support friends are providing. So incredibly humbling.

And I’m still loving my bed and smooshy, white duvet!

Filed under: bone marrow disorder, cancer, T-cell Lymphoma on June 12th, 2008 | 2 Comments »