Happy endings to come?

So I’m starting this post on Monday 16th September – but not posting it quite yet as I’m hoping that it’ll have a happy ending!

It was my weekly daratumumab injection today – week 8 of the 10 weekly ones and then I’m meant to be going to 3 weekly for that and weekly for velcade and dexamethasone. I’m a bit fed up of it being weekly but was quite chilled on the basis I’m due to see my consultant on Thursday and was hoping to be told we could book a holiday abroad and that my Dex dose might be able to be brought down so I am less vile to everyone (myself included!)

Slightly frustratingly, although not totally out of the blue, there’s been a slight hiccup. They have changed where my bloods are measured and they will now be measured at Heartlands in Birmingham, and not the QE like they have been till now. That would be fine apart from there are often discrepancies between sites which, when you’re trying to assess whether a drug is doing its job, and how well it is doing its job, make it tricky.

I had been told they’d try to measure at both hospitals the first time, given their knowledge of the possible blips, but unfortunately it didn’t happen and I was faced with the news today that my paraprotein had gone up from 12.2 to 16. Quite a big jump for me! And whilst I knew that it may not be a ‘real’ increase, it still made Nick and I quite nervous. Luckily my consultant is superb and is already on it, trying to get repeat bloods done, ASAP, at both hospitals so we can see where I genuinely am. He has had other results do the same thing so is very optimistic that it’s all (or mainly) about the change in testing site.

So, in the meantime, and as hard as it is when it’s playing with my mind, we’ve decided not to share the news with anyone so we don’t worry family and friends. Hopefully within a week (and when you actually read this!) we’ll know what the actual situation is.

It’s amazing how hard it is to not worry ourselves though. Nick is better than me but I’m already worrying we won’t be able to go away or more importantly that he might not let me lower my dose of Dex until we know what we’re playing with. More so, I’ve been worrying that this last two months of treatment has been pointless and that I might have to start a new and more intensive drug regime…what will that mean? Does that mean my relapse this time is more aggressive? Will I be much more ill on a different treatment? Is it just that I don’t respond that well to dara? So many questions coursing through me! And probably all pointless if it is just a blip. But I can’t stop….and not helped as I lie here at 2am on a Dex night 😱. But I’ll stop here and add to my update on Thursday once I’ve see the consultant and know more.

Monday 30th September: So it seems to be good news which is great! After two weeks of waiting, we’ve finally got the results in from Heartlands which suggest that whilst the numbers are higher, they are still going down. We’re still waiting for the QE results which will show us a bit better how well I’m doing, but the main thing is that my numbers AREN’T going up, and that the drugs are seemingly doing the right job still. Again….worrying for nothing!

My consultant was very confident last Thursday when I saw him, that the changes would be due to the change of equipment at the new centre. I just couldn’t bring myself to believe it, and was super worried that the drugs had stopped working and that the past month of horribleness had been for nothing. I couldn’t believe his confidence or Nick’s. I think the idea that it might not have worked was just a bit too much to get my head around. That and my feeling that if I can just get through treatment successfully for the next 12 months, I’ll be in a great place to benefit from the next generation of myeloma drugs which are likely to come through over the next two years. I was so scared about needing alternative treatment already.

I was certainly on edge for those weeks, not helped by the decision not to tell most people what was going on. Living with it almost on your own is quite hard, but it did feel like the right thing to do…born out by the fact that there wasn’t a reason to worry! However, what I’m discovering, is that the fallout the day or two after I’ve gone through one of these ‘waiting games’, is quite obvious. It’s like it takes all my energy to stay positive, and then, even when I get good news, I collapse a little for a day or so once the results are in. Mad really. At a time I should be celebrating, it’s like a train hits me and I get all tetchy!

Anyway, I’m hoping that this week should be a good one without that to worry about now 🙂 What is also good is that last week, they reduced my dex too and almost straightaway, I could tell a difference! Not only did I sleep for a great total of 6 hours on the first night (rather than the usual 2 hours), I also didn’t get close to killing the children, or Nick. I felt so much more in control of myself again and so much more able to deal with the daily things that life throws at all of us. Here’s hoping this week is the same!

Still waiting to book a holiday but hoping to look at it this week – fingers crossed the Thomas Cook collapse doesn’t make it all too expensive, but we’ve got ideas for what we can do if that is the case.

Early Sept blood test results: Cancer levels increased, planning for early 2020 chemo

My September blood test results show my cancer levels have risen to 16 from 13. Although this is only a small increase, I’m trending in the wrong direction as my cancer continues to affect my physical and mental abilities. So, I’m expecting early 2020 chemo, and focused on being mentally prepared, when the time comes.

Conversations are problematic as simple sentences can come out wrong. I’m also very clumsy and find that I will knock things over or run into walls. This is expected though as my cancer levels rise and I get closer to chemo treatment, easy things become more difficult and difficult things are super challenging.

Instead, I’m really focused on remaining calm, finding inner peace, and experiencing happiness within. I’m conserving my energy and prepare my body and mind for the long journey ahead through healthy eating, reading, and quiet time.

My next treatment will be pretty intense, as I’ll be on IV and oral chemo indefinitely. However, I remain optimistic that I will be able to handle any adverse side effects and that treatment will keep my cancer levels low and stable.

Staying positive – Happy Autumn!

M protein (g/L) (if 0, then no cancer detected)
Early Sept = 16
Aug = 13
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait:
Afternoon wanderings in Queen Elizabeth Park

Early Sept blood test results: Cancer levels increased, expecting chemo before Spring

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

Lynn Creek @ Varley Trail - Lynn Headwaters Regional ParkLynn Headwaters Regional Park

The post Early Sept blood test results: Cancer levels increased, planning for early 2020 chemo appeared first on Fade to Play.

Dexamethasone – The Devil Drug

My last post started to discuss the fact that life is pretty rough at the moment for me. It’ s been very different to when I went through treatment 9 years ago when other than periods of exhaustion, I didn’t seem to have any side effects from the early drugs. This time the devil drug, Dexamethasone (DEX) seems to have really hit me hard.

So what is dex? Well I’m no expert, but basically, it is a steroid that is meant to help to prevent the release of substances that might cause inflammation in the body. It also suppresses the immune system and can help with chemo-induced fatigue. The idea for me, is that it really supports the work of velcade, the chemo drug, and is thought to speed up the impact that it has, i.e bring my myeloma into check quicker, and my paraproteins down.

So that’s the good stuff that it helps with in cancer treatment. Unfortunately it also has a huge number of negatives attached with it, both physically and emotionally, that can cause a huge impact in patients….as I’m finding to my detriment. It can cause the following, just to name a few:

  • Mania – this can be a good sign in that you can end up with increased energy and due to not being able to sleep, can get lots done. The downside is that you often lose sight of reality when you’re going through this period, meaning you might make inappropriate decisions, say the wrong things, or even suffer delusions or take actions that you wouldn’t normally (apparently shop lifting is common – not me thank god!)
  • Depression – it speaks for itself, but even the days when you’re not on dex can be an issue as you’ve no longer got that mania, have spent hours (if not days) awake and then get the come down. Not pleasant for the patient or those surrounding them!
  • Impulses – lots of people talk about going on spending sprees when they’re on dex! I’ve managed to keep it in check thank god, but there have definitely been times where I’ve thought perhaps I can’t wait for that Breville toasted sandwich maker (after all who doesn’t need removable plates for the dishwasher – Cath I blame you!), or that after 20 years of making decisions with Nick about artwork, I can choose something without him!
  • Weight Gain – I swore this wasn’t going to affect me this time. WRONG!!!! OMG. Somehow I need to get back on track with it as it makes me miserable that I’ve put on soooo much weight in such a short time. Partially, it’s just increased water retention, but partly it is that no matter how much I say that bag of crisps is a bad idea, I still eat it…and then eat another pack! And top it off with a few other bits from the cupboard.
  • And then the general side effects: Aggression, agitation, anxiety, blurred vision,
    dizziness, fast, slow, pounding, or irregular heartbeat or pulse, headache, nervousness, numbness or tingling in the arms or legs, pounding in the ears, shortness of breath, swelling of the fingers, hands, feet, or lower legs, trouble thinking, speaking, or walking, troubled breathing at rest

I’m on a couple of Facebook pages where patients and carers can discuss and share information and Dex really is known as the most awful drug around. Even the consultants know it is the devil drug. Everyone who has seen it in action, knows how it can almost destroy some relationships. It is rare patients aren’t impacted (like me first time round). It is rare that families don’t see a different person in their loved ones. It’s rare that spare rooms don’t come into their own!!! It really is awful – no exaggeration if you’re thinking I’m over egging this!

Those of you that have been following my blog will know that I found my first week horrendously hard. It seemed to ease a bit after that and whilst I definitely had my ‘Jekyll and Hyde’ moments, they were pretty short and not too horrendous. But I’m definitely feeling that it is building now. I’m not sure whether it is that I have a ridiculous amount of stuff going on in my life at the moment (….I don’t really have time to have flipping cancer, let along a bad temper!). Or whether the drugs are solely to blame. Or whether I’m just turning into a miserable old cow in mid-life. But it’s not a particularly pleasant time and I seem to spend about 2/3 of my life not in a massively smiley place. I hear myself talk to friends and for once, can’t really put the positive spin on things while I’m on this drug. And I don’t like that much.

Living with being miserable is really horrid. I feel like a terrible wife and mother, despite Nick and the kids being amazing about it all – they couldn’t have been more supportive of me. I never take Nick for granted with this – he really is outstanding and no-one around us will ever know how amazing he is in holding the whole family together. But the way that the kids are coping really shows what amazing young people they are growing into. They support me, they love me, they cuddle me, and most importantly, they forgive me when I am just the most awful mother to them. And in return, all I can do is apologise and keep trying to keep myself in control.

I write all this though, with other thoughts in my mind. This is not an excuse for me. I don’t want to allow myself to behave badly because i have the drugs as an get out clause. I will fight really hard to be reasonable and thoughtful to the people around me. But in the same vein, if people who don’t know what is truly going on, start saying the only reason I get cross, or grumpy is because of the drugs and that my opinions aren’t valid, or true, or allowed, that will drive me round the bend. The drugs don’t impact me 100% of the time, and especially with longer term values and morale issues, my views are still valid!

I hadn’t realised that when I go to daratumumab three weekly, I still had to keep having the velcade and the dex every week! Gutted doesn’t begin to explain how that made me feel when I’d been counting down the days to a more normal existence. So, I’ve decided that I am going to speak to my consultant when I go in next week. I’m going to see if we can reduce the dexamethasone slightly if my numbers are still looking positive. Just a bit. Just to ease the impact and hopefully allow us a slightly more pleasant run into the time of my transplant. My paraproteins are currently down at 12 so I’m hoping they might have dropped under 10 by next week and he’ll be happy about doing that.

OK, so I’ve finally finished this post because it’s a Dex day…..I started it 5 days ago! So the two manic days or in process now…might sleep a couple of hours tonight, might not. But at least I’ve finished this and can move on to a bit of my work….massively behind at the moment while I’ve tried to fit in other stuff like house, family and friends. But Monday’s at least are my catch up night…there’s a positive to end on!

Mortality

I feel if more of us thought about our mortality beyond, ‘Am I going to heaven or hell?’ Maybe folks would put down picket signs *metaphorically. What if the world took a hard look at the direction hate is going and stood up at the same time to stop it where they saw it? What if we looked at life as more of a Challenge”, to Life Itself, what if we chose to Exist and to Matter Positively, regardless of whether we belong to a fundamentalist group of some kind or not? Just a thought. Living life for me since myeloma, has been more of a Dare that I intend on beating the odds.

If we looked at death as a finish line in some life race, we would spend all of our time looking forward or trying to elbow or outpace the people next to us, racing exactly the same direction. There is no time to hesitate once the gun sounds and you are running, you just go… What if we lagged behind to make sure the end of the road is in the same direction your heart intends to go… not just the direction of the road paved before you. Anyway, my brain tangents.

I finished a book recently, Conversations With God, by Neil Walsh. The book was written during the same year as my spiritual awakening or revival in 1994. This book reads like my personal journals, so I thought it would be easy to read, and it was. Anyway, if you have an open mind and heart, you can glean much knowledge from reading books by philosophers and spiritual leaders, but you ultimately have to trust your heart and your mind and your faith in something *in my experience – without faith in something greater – life is possible, but significantly more hellish in nature*

I have never been able to quantify the God that I know, or that has guided me my entire life. These types of books are encouraging to people like me that feel they have had these conversations for years, but thought it was merely chemo or mental illness.

Back to death, I have been in the room with at least 30 dead people at one time, and with humans on their way out, or had ‘just left’. It is my personal experience that a body with a soul and a body without a soul are completely different, therefore, I find some strange peace in knowing that at the time of departure, a soul is no longer connected to the body. When a body leaves the earth, it endures much trauma, and is sometimes like the trauma of a childbirth. The knowledge that I will not be connected to my body gives me peace, but I also have peace in the knowledge that whomever we Love that we lose, never truly leaves us. I believe they are connected to every thing and person they have ever touched and they will remain as present as your mind allows them to be.

There is something comforting in the neuroscience of the brain, as it relates to memory… When we clear out the old, we make room for the best memories of those we love, so when we lose them, we do not feel the loss as deeply because – if you are open to it, there is comfort in allowing faith in something to wrap their loving arms around you to remind you that you are never alone.

August blood test results: Cancer levels doubled, feeling a bit nervous

I’d been feeling more fatigued than usual leading up to my blood test – chronic fatigue is one of the symptoms of multiple myeloma and I wondered whether my cancer levels were still reasonably stable. Unfortunately, my August blood test results earlier this month showed my cancer levels doubled from 6 in July to 13.

Goodbye single digits, thanks for the memories.

I remain hopeful that my September results won’t spike again, but I’m also mentally prepared if I need to restart chemo again in the near future. I really am happy to have a break from chemo, the last chemo really affected my mental and physical abilities.

I’m not letting cancer get me down. No time for stress. Remaining positive about life.

M protein (g/L) (if 0, then no cancer detected)
Aug = 13
July = 6
June = 5
May = between 3 and 4
Apr = 3
Mar = between 1 and 2
Feb = 3
Jan = between 5 and 6
Dec = between 5 and 6
Nov = 11
Late Oct = 27 (started chemo)
Early Oct = 48

Self-portrait:
Sunday morning, I went to Queen Elizabeth Park for some quiet time.

August blood test results: Cancer levels doubled, feeling a bit nervous

I have multiple myeloma and anemia, a rare cancer of the immune system. Multiple myeloma affects the plasma cells, a type of immune cell that produces antibodies to fight infection. These plasma cells are found in the bone marrow. As a blood cancer, it is incurable, but treatable.

From mid-October to late-May, I was treated with Kyprolis (carfilzomib), an IV chemo, Cyclophosphamide, and dexamethasone.

End of the day on Granville IslandMay 2014: Granville Island

The post August blood test results: Cancer levels doubled, feeling a bit nervous appeared first on Fade to Play.

Midweek musings

I had a good doctor visit. As I mentioned my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m not ok and not panicking. I went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on the every 2-week clinic schedule and that will be very nice.

 

Gratitude

Do you ever notice how I seem to be chasing the sun? I mean, I spend a lot of time documenting the rise and the fall to the earth of the sun and I am fascinated by all the colors painted each and every time? We realize it is a ball of fire and it could destroy the earth someday right? Do I ever think of it that way? No, I think…. oooohhh it is sooooo pretty, let me get closer. I am seriously fascinated with the view from my back window, it feels like a living painting and I do not have to pay for the luxury, it just came with the house that the government helps me pay for. I mention this statement because, up until maybe two months ago, I did not properly appreciate my old, drafty home or the view. I think my intention with the photography idealization is to visualize what my life would look like if I lived in the large homes that are bordering my neighborhood. I neglected the appreciation of my own house and did not daily remind myself as I should have, of how fortunate I am to live on such a quiet street, with such great neighbors. I never thought to appreciate the proximity of small town community kindness and the bigger city experience close enough, how it is just perfect for me and my family. This is something I now remember every day that I live, until such a day that I am granted a larger living space that matches my dreams.

I am grateful for every hardship or every darkness experienced which make me appreciate the moments of light more. I am grateful for still being alive, and for learning the lessons I have learned through learning to love myself. I appreciate the clarity of mind to be able to look back on past life choices and see the reasons, or learn the lessons, and possess the ability to make changes necessary to move forward without regret. I am grateful for the health of my children, and for the fact that Cancer listens to me when I tell it that it is not welcome in my body or my mind. I am grateful for the ability to see the answers to whatever questions I have and not to have the fear and doubt cloud my judgement. I am thankful to God for removing Fear from my entire being.

This earth is so small in comparison to the rest of the universe, and sometimes I am especially grateful for recognizing how insignificant I am, yet how amazing it feels to have the ability to get up every morning and try something new again and feel limitless in my potential to change each day anyway. Not everyone has the rights or abilities I have; it would be a shame if I wasted my chances to keep chasing that sun.

Life outside of Treatment

I’ve been a bit quiet on here the last week, largely for two reasons. We’ve been dealing with my dad after his fall last month, and also, there’s been little change or reason to write much about my treatment.

The last week has been a bit of an eye opener into the gap in care for the elderly. For those that don’t know, my dad has alzheimers (still not really sure at what level) as well as having had his fall and therefore, after a lot of thought and consideration, it was decided that he needed full time care of some sort. This is all despite the fact he’s done so well since he fell, breaking his thigh. His care in Oxford has been pretty amazing in the main. They (with our support I’d like to think!), have managed to get him to a place I didn’t think we’d reach when I saw him a month ago. I honestly thought I’d lost my dad.

But now, he is walking (albeit with sticks and a frame), can occasionally have coherent conversations, and is smiling with the twinkle in his eye that I remember as ‘my dad’.

However, it seems that there is a big gap for those people who are physically recovering, but perhaps require a bit more support to ensure that they aren’t a danger to themselves when they leave the hospital. We’ve had to start thinking about his move out of the hospital this week and were quite staggered to see that they might send him out with only one physio session a week, when he was on 7 sessions. For a man that was improving daily, it felt odd not to at least stagger the physio to try to reduce the chances of him having a serious fall once he was out.

Anyway, we’ve realised that sadly we can’t change that outcome, and luckily, as a family, we’re able to ensure that he can continue to have physio even if we have to arrange it. I just feel for those that can’t, or worse still, don’t realise that they should be. There’s definitely a big gap where those that are mentally sound, seem to slip slightly through the gap. It’s been an exhausting week, trying to work out where dad is best to go now, and how to deal with this gap in care, but hopefully we are nearly there and we can settle dad down.

I have to say that whilst it’s all been going on, I probably haven’t really been looking after myself very well, and as a consequence, I haven’t had a brilliant week with headaches and exhaustion. Treatment has all gone fine in general and my consultant is really pleased with my progress to date. We saw him on Thursday and he basically was all smiles. He did try and ready me for the fact that I may see a plateau at some point and I wonder if this was because my numbers went down less the last time than the first time. But I won’t think too much about that!

Paraprotein Results:

  • At start – 21.6
  • After 1 week: 16.6
  • After 2 weeks: 14.2

I’ve now had 4 sets of treatment, so there’s a chance that my numbers are even lower without us knowing, so that’s good. It looks like I’ve got another 6 weeks of having my infusions weekly, and then I will be able to drop them to every 3 weeks. That’ll be lovely as at the moment I only have one or two days a week where I’m not exhausted or feeling weird and wonderful…hopefully once it goes to tri-weekly, I’ll get the odd week of being able to enjoy life a bit more. At the moment I can’t even enjoy a glass of wine (which for those of you who know me, will know is a BIG deal!)

At the moment I’m not ill as such so I really shouldn’t complain. I have been having headaches for the past few days, but I think that’s been due to my dad too, so I’m hoping that these will reduce this week. I’m definitely getting the start of my neuropathy back too. This often comes from the velcade that I have as an injection and I’m getting the spongy feeling face, hands and toes – it’s hard to explain in words but so long as it doesn’t turn into the more painful form of neuropathy, I really won’t be moaning. And I’m exhausted.

The main reason is the Dex which I’ve talked about before. My consultant is happy to change it but actually, after the first week, I’ve managed it much much better. I don’t sleep on the first two nights, and the third night isn’t great, but all in all, I’ve now got my moods in check for a lot of it. The kids know I might be a bit more snappy or sad than usual, but in general, I’m trying very hard. I don’t want to change the dose unless it becomes manageable, just in case it impacts on how much the other drugs work!!

But the great news is my consultant is onside, at the moment, for us to consider going on holiday in the October half-term. It looks like it might even fall in-between one of my 3 week appointments which would be amazing. He won’t commit until our next monthly appointment at the end of September, but if things are good then, and I’m still handling the treatment well, we might be able to start looking for somewhere hot for October which would be amazing!

I’d also like to just say thank you at this point for all the lovely support and care we’ve had from family and friends over this first month. It’s hard to explain how starting on chemotherapy, and not knowing whether it will work or not, impacts you emotionally. It’s been a really hard time for Nick, me and the kids no matter how much of a grin I try to put on my face! But we’ve had so many lovely messages of support, cards, flowers and gifts, all of which help us to keep smiling along this long journey ahead of us. So thank you….you all know who you are! x

Our Patient is Home!

Wow, we had a ROUGH week!

Dom was hospitalized on Friday afternoon.  Slidell Memorial Hospital.  Christine flew in on Saturday afternoon.

We had one scare after another.

They thought that he had contracted C-Diff and had him in isolation for 2 days.  We later found that this can be deadly.  Thankfully, he dodged that bullet!

Dr. Michael Nguyen was the admitting physician.  Very NICE guy who put together a phenomenal “dream team” for our Dom.

(In the past, I’ve always chosen to be admitted to another Slidell hospital.  Ochsner.  I might have to change preferences!)

All-day, every day, there was a stream of doctors, nurses, and therapists in and out of his room.

Dom had 2 Kidney Specialists, An Infectious Diseases doctor, A Cardiologist, a Neurologist, Occupational Therapists, and Physical Therapists.

Sadly, Dom is not producing his own blood, thus needing transfusions.  He had 2 units transfused during this hospitalization. The kidney doctors had him on Sodium, Potassium, and Electrolytes.

He was diagnosed with Samonella and was treated with 2 different antibiotics.

He was sent home yesterday afternoon with 8 more days of antibiotics, as well as sodium supplements.

We follow up with his Kidney Specialist, Dr. Kovachev in a couple of weeks.  He’ll be keeping an eye on Dom’s Creatine levels.

Heading to see Dr. Safah at Tulane on Wed.  Dr. Calabresi (Slidell oncologist) the following Tuesday, then Dr. Kovachev later in the week.

It’s been a wild ride.  THANK GOD Dom is home.  I had my doubts last Friday.  He was incoherent.  What a scare.

GOD IS GOOD.  Thank you for all of the prayers and phone calls!

Dom is Slowly Improving! No C-Diff, but Salmonella.

When Christine and I arrived at 11 am, the Occupational Therapist had him out of bed and sitting in a chair.

He’s no longer in ISOLATION.  He tested NEGATIVE for C-Diff!

The Physical Therapy guys were outside his room, ready to pounce on him.  I told them to “Give him Hell”.  They were delighted. 

They WANTED to walk him, but after laying on his back for 5 days, his blood pressure was too low.  They’d test it sitting up.  LOW.  Test it standing up.  LOWER.  They’re going to try to get him walking tomorrow.

Dom asked to go back to bed and we all said, “NO!”.  He ended up sitting in that chair for more than 2 hours.

Our Slidell Oncologist came in.  Told us that he was SO HAPPY that Dom didn’t have C-Diff.  He’s lost TWO PATIENTS from that!  He said that he wants to get Dom STRONG before he gets out of the hospital.  His blood counts are dropping, so I’m guessing that he’ll need another blood transfusion soon.

Then Dr. Koachev, partner of Dom’s Kidney specialist, came in.  He spent almost 30 minutes with us.  Explained that Dom was limited to 2 liters of liquids per day.  Getting IVs of Sodium, Potassium and Electrolytes for his kidneys.  Also told us that his Creatine had jumped from 2.5 yesterday to 3.5 this morning.

Dom’s collar bone started killing him, so they put him back in bed with a percocet.  When he started getting dopey, we left.

Did a little shopping, had a late lunch and came home.

Dom called.  The Infectious Diseases Dr. made an appearance.  She said, “You told me that you had Salmonella once.  Well, you’ve got it again!  No more runny egg yolks!”.

She then went on to say that his Creatine number dropped from this morning’s 3.5.

Feeling hopeful, gang!