My biggest challenge yet!

So the 7 days chemo is finished, went pretty smooth, just made me very tired and some headaches. I finished on Tuesday, now the after effects have kicked in which is not so nice. Got a huge allergic reaction to something, either the chemo or from a platelet transfusion, where my hands and feet have swollen so much, especially the hands. Looks quite nasty, but mom has been round putting all the camomile, alo vera and silbercor creams on which is working quite nicely. Also got this rash everywhere which is now subsiding.

Yesterday was a terrible day for me, I really felt like I was knocking on deaths door and the way I felt I was happy to open it. But, today is a new day and I feel a bit better and also better emotionally. Those days will come.

At the moment my counts are practically zero, the white cells. So its only my mom seeing me for now as we can’t risk infection. Getting 2 blood transfusions right now, well the first bag is up now. Covered it with a towel as it freaks me out a bit.

Great news is that the cortisone is being stopped! The puffiness in my face has already started going down. Very grateful for this.

I have now moved to a different Dr, Dr Cohen in Pretoria. The trips to Joburg every week was just getting a bit much.

So where to from now? Don’t know yet. We first have to see results from this chemo round etc. Hopefully I can go straight to transplant after this.

This is the first time I actually have enough energy to blog.

As most know, I am currently in Little Company of Mary in Pretoria receiving induction chemotherapy. This is NOT for the transplant. The blasts doubled since Feb and they are too high for me to have transplant. We thought this might happen but was hoping it wouldn’t be necessary. My disease is being treated the same as Acute Myeloid Leukemia now.

Blasts

The myeloid stem cells usually develop into a type of immature white blood cell called myeloblasts (or myeloid blasts). The myeloblasts are abnormal and do not become healthy white blood cells. These abnormal blasts are leukemic cells.

Induction chemo

The goal of induction chemotherapy is to bring the disease into remission. Remission is when the patient’s blood counts return to normal and bone marrow samples show no sign of disease (less than 5% of cells are leukemia cells). 

Induction chemotherapy is very intense. It usually lasts one week, followed by three or more weeks for the patient to recover from the treatment.

Successful induction chemotherapy destroys most of the leukemia cells, but a few will be left in the body. If these cells are not destroyed, they can cause a relapse of the disease. More treatment is needed to destroy the remaining leukemia cells. The next step may be consolidation chemotherapy or a transplant, depending on the treatment plan.

So this in hospital treatment, meaning I am in an isolation room (not as strict as a stem cell unit though) for a month. After day 5 or so I will become neutropenic (white cells and therefore immunity drop) then hopefully cells will pick up again. I have 7 days treatment followed by 3 weeks recovery. Once the cells are above certain levels I can go home. After 2 weeks a bone marrow aspirate will be done to see if the blasts have subsided. They might then give consolidation chemo then take me to transplant or go straight to transplant. They taking it step by step after this treatment. So, I definitely do not have transplant dates yet, there is a 70% chance that I will still be able to have one.

I am feeling very tired, got the metal taste already. I was a been nauseous , but on and off. Today is day 2!

This came quickly and aggressively and slightly unexpectedly. A “nice” curve ball in the treatment plan.

Wow its been a crazy month. Firstly, my medical aid waiting period is over as of 31 March! Whoop whoop!

So the request for auth for the whole procedure including procurement of cells has now been submitted. Now we wait. For a date. Which will be later this month or early May. Its like someone who is going to have a baby, the bag is packed and you just wait…

My central line was re-inserted on Thursday along with 2 bags of platelets and my 9th bone marrow biopsy. Needless to say, I hurt. I don’t even feel the biopsies anymore (well I was under full sleeping gas), but the after effect I am so used to. The central line is at least not in the middle of my chest this time. It comes out my collar bone. Still in the healing process, so still very sore.

My lovely granddad Noble Dalziel passed away on the 31 March. He was diagnosed with terminal lung cancer 3 weeks prior which had already spread into his brain and kidneys. So I was at his bedside every day till the last day. Then came the planning of the funeral, which was a beautiful but heart renching service. The day after my line was put in. And 3 days after that, my dearest friend Robin got her Angel wings. The the after that, today, I dropped  my freakin phone in my coffee! So it has not been a good month.

When I was first diagnosed, people close to ran away. One special one, my cousin Kerri came back and I am so thankful! 2nd time round, I am loosing some of my closest friends. I am trying to keep them close, but I learnt the first time it hurts less to let go. Thank you for those who have stuck with me.

My dearest Robin, it was a short but VERY special friendship. This is going to be so lonely without you as my closest friends are drifting away… You know how we spoke about this time and time again. We always said we were going to party like rockstars when everything is over, one day you me and Shane will rock it together! I don’t know who is going to “get it” now like you did. You fought hard girl, and you are such an inspiration to me! Rest in Peace my trooper <3

To my dearest Pa, it came as such a shock as you were so healthy and then all of a sudden became so ill. The short 3 weeks felt like forever. You were the best granddad who always cared, loved and adored us. You had a beautiful heart and always supported me in everything I believed in and did, even if you deep down might not have always agreed. I am blessed to have spent those final days with you, sleeping on the floor beside your hospital bed. It broke my heart to see you suffer, but now I am sure you, Nana, Laura and Auntie Del are having a fat party up there! Going to miss you terribly <3

Its been a long time since I posted, been so busy with University!

My platelets are still minimal, sitting at about 10.. (normal 150-450). So needless to say I am covered in bruises! They don’t hurt but looks pretty nasty.

My central line is being inserted in about 3 weeks time. Transplant is happening end of April, we can’t confirm exact date until I am off my waiting period with the medical aid which is on the 1st of April. A lot of things need to happen before transplant like my conditioning therapy and the donor’s work up. At least I can fly down, although will have to get platelets before I fly as it is dangerous to fly with platelets under 50. My doctor is also happy to let me come back home asap if everything is fine of course!

I have organised with my lecturers as I will be missing tests etc, but luckily they are very accommodating!

The time is coming nearer and nearer, I am both nervous, scared and excited. I just want this over with!

Please go have a look at this video of Micky and Barry shaving their hair for the CANSA Shavathon! Brave! I did mine as well seen as I will be losing it again next month. I have become so used to this look, having  long hair again would be weird! But I do miss it sometimes.

Almost there… almost there!

I am seeing my Dr tomorrow and I am soooo nervous… Last weeks bloods through a spanner in the wheel and I don’t know what to expect.

Discovery approved the transplant earlier!!! ie March… Which is in a month. But we need to see if they going to cover the procurement of the stem cells or we might have to wait a wee bit. Well, this curve ball with my bloods could change a lot as well. If the blast count is higher I will need a special round of chemo first etc etc.

University officially starts on Wednesday, been busy with Orientation week. I still have not asked my transplant physician if I would be able to come earlier… Lets hope so!

So the higher dose of cortisone did nothing for platelets, just kept them at 14. Last Tues he then reduced cortisone to half. I convinced him to not see him this week but still do bloods. Well they were not good, white cells elevated (should of gone down from reduction in cortisone), red cells dropped and myelocytes and normoblasts (immature red and white cells) present in peripheral blood.

He is concerned, and will see me on Tuesday. He wants to see the bloods on this coming Tuesday to make a clearer assessment.

Having a tough time dealing with all the weight gain from these meds. Uh.

I went to the Doctor on Tuesday (Going every week now) and my platelets have fallen to 14. They were stable at 27/28 for about a month. Cortisone was upped very high for a week to see if it will give them a push. We shall find out on Tuesday. 80mg a day to be exact, so I have a bit of a moon face going on again! I have now researched a bit on how to keep them up naturally, it seems that red foods like tomatoes, plums, watermelons, cherries and berries are loaded with vitamins and minerals and have strong anti-oxidant properties which helps to raise platelet count. So I will be trying that! I have also been trying high dose Vitamin C as this has been reported to help, but unfortunately its not doing anything.

I have a hematological cancer, where it starts in my DNA and stem cell production, not a common tumor.  Therefore I believe, that changing my DNA profile through means of a stem cell transplant, is the way to go. I do believe that alternative therapies can decrease and maybe even cure tumor cancers. I believe natural remedies can aid me to an extent, like the platelet remedy above, but I do not believe in solely going the natural way. I believe in combination. The one thing I have to be very careful about with natural remedies (informed by doctors and an aroma therapist) is that a lot of them increase and improve healthy cell production. In tumor cancers, a very good thing. In my condition, fatal. I have a “flaw” in my DNA that causes the roots of my cell production to be abnormal, so anything that stimulates it, will purely increase the bad cells.

I have great news!!! Shan and Allan submitted the last confirmatory typing invoice (R28 100-00) for the donor and myself to the Sanlam Leukemia and Bone Marrow Fund, and they funded it!!!! This was such amazing news I can’t even tell you. So a very BEEEEEG thank you to all involved! The German registry has also found a back up donor. To find the donor, thanks to the German Registry and the Sanlam fund, we have not had any costs. The harvesting is the big invoice which is still to come, R 230 000. Discovery should pay some, but as I am in this waiting period we might need to wait.

We are waiting for Discovery to approve my treatment plan and fund the transplant earlier, my waiting period end 31 of March. This is apparently being considered, so hold thumbs. Once we have approval of funding, the transplant will proceed.

University registration week starts on the 28th of January, I am very excited! Going to be tough with everything going on, but it will be a huge accomplishment!

We, well more me, has decided that despite my onco not agreeing with me starting university this year, I am going to!

It is going to be very tough with a second transplant coming up and having to go to Cape Town for a while, but I will try my best to finish my 1st year!

I really need this, a taste of normal life again. I need something to take my mind off, I need to have a goal. I am determined to still move out after July as planned, and be independent again!

I am going to speak to the University tomorrow to ask for assistance. Whoo-hoo! I am so excited!!!! I am going to study Clothing Retail Management. I want to do stock buying. Getting paid to shop…? Wow!

I am going to see my doctor tomorrow again as I still have abdominal pain. Really not feeling fantastic. I wanted to just go to my GP down the road this afternoon to see if something is wrong, and my specialist had a fit and ordered for me to see him tomorrow. Aye aye Captain!

Happy New Year to everyone! I wish everyone a fabulous 2012 and most importantly, a healthy year! For me, I wish this time next year for it all to finally be over!

I have not really told anyone what is going on. A second bone marrow/stem cell transplant will be happening withing the next 4 months. A whole new donor, the toot. It seems we have found a new donor in Germany again. A female 2 years younger than me. My transplant physician is back at work tomorrow, and once he is happy with the donor they will do the confirmatory typing. She has a different blood group to me, so mine will most likely change to hers. But she is available and understands the urgency.

The German registry has been so helpful with funding, we have not had any costs so far. But the most expensive part is still to come. I will be going to Cape Town again for this 2nd transplant. This means I will most likely not be able to go to University, again! I have been accepted and everything. We are however going to go speak to them in the week to see how they can help me while I am gone. I am also going to ask my transplant physician if I can come back as early as possible. Last time I had to stay there 3 months after the transplant. I really to need to move on with my life!

Bone marrow has deterioated a lot. I have no had a bone marrow biopsy done in end of August, end of September and beginning of December. We started of in August with 1% blast count and 5 % positive for monosomy 7. We are now at 8% blast count, 35 % positive for monosomy 7 and full evidence of the disease being back. It has actually changed in type, it used to be MDS RCMD, and now its MDS RAEB 1.

RCMD : Refractory cytopenia with multilineage dysplasia (RCMD) is characterized by any combination of anemia, neutropenia, and thrombocytopenia and dysplasia in any two or all three marrow cell lines including erythroid, myeloid, and megakaryocytic lineages.

RAEB 1: Refractory anemia with excess blasts I and II. RAEB was divided into *RAEB-I (5-9% blasts) and RAEB-II (10-19%) blasts, which has a poorer prognosis than RAEB-I. Auer rods may be seen in RAEB-II which may be difficult to distinguish from acute myeloid leukemia.

The cortisone as well as a bunch of vitamins and minerals has been helping my blood counts stay stable. Although my counts are very low, they have been stable for the last 3 weeks. Platelets are now at 27 (normal 150-450). There are 5 lows and one high on my full blood count.

Physically I have been feeling very well. Excepts the last two days I have been very fatigued and I think my spleen is enlarged as I have a very uncomfortable pain in my upper left abdomen.

What is an enlarged spleen? The spleen enlarges if it is asked to do excessive work in filtering or manufacturing blood cells, if there is abnormal blood flow to it, or if it is invaded with abnormal cells or deposits.

My bone pain has also returned. It feels someone is scraping your bones on the inside with a knife. This horrible grating feeling.

I have had a very tough time emotionally this past week. But it’s getting better! Cancer is like thinners, it strips everything from you! And I am trying to keep everything together. I am dealing with this in a very different way to the first time. I ask of people not to force things upon me, whatever it may be. I am willing to read about it, but please don’t put pressure on me. This is my road, and I am busy finding out my own strengths and weaknesses. I ask not for judgement, but for your support, that is what I need.

My wish for 2o12 is for everyone who said they will, and still have not, is to become a stem cell donor. So far only 2 of my friends of have done it. A whole two. Please see the page on the right of becoming a donor. “Share a little, save a life!”

My wish for this year is also to baby Reef. I hope this is your year to finally be healthy!

Extra prayers for Robin, who has also just relapsed after her transplant. We can do it girl!

So, this is my 3rd year fighting this! Here we go again!

I’ve been very quite, but no news in this case, is not good news. 7th biopsy (4th after transplant) showed significant bone marrow deterioration. My platelets were 28 this week. I don’t actually feel like talking about what is going on right now. I don’t know why, I think I am still trying to deal with it myself. But things are quite hectic and the next few months will be even more. Just when I thought it was over, its all happening again…

I will try update in more detail soon.