My First Bloody Gift

My clinic nurse called me earlier in the week to tell me I was neutropenic and that my platelets are so low, point 7! I guess the average person has between 150–450 x 109/L)[15] platelets, so I need a transfusion by the end of the week.

I asked her if low platelets were responsible for my low energy and she said no, it’s more about keeping one from bleeding and bruising, and just as she said it I happened to be adjusting my shirt and looked down to see a large purple bruise on my stomach. Last night when I gave myself my neupogen shot (yes I'm doing it on my own now!!!) the tiny needle left me bleeding for awhile which was unusual so I thought I might have a pen point size bruise, but not a bruise the size of a sand dollar!
So I have been careful to brush my teeth lightly (even getting a baby toothbrush) to avoid bleeding in my gums, and being gentle on my nose, bowels etc. Because once I got bleeding it might be hard to stop. I'm nervous about my bowels because it’s always my weakness to get constipated and tear after chemo, and it’s already hurting so much to go.

I'm not however nervous about getting platelets (or blood) from another, I trust the Canadian Blood services and all the modern tests we have, but I am feeling very sentimental about it in a sorts. I guess this why they (CBS) choose the marketing slogan “give the gift of blood”. I feel very much like I'm being given a gift, a very personal intimate gift.

How low can she go?

(just above coma - nice!)

I forgot to mention that I did have a little fainting incident on the way out of the hospital after my permacath insertion, but then again I'm a fainter so what else is new. I'm also a low blood pressure kinda gal, but this day my BP dropped to 52/65, normal is about 120/80 – my normal is about 70/100 if I'm lucky. So I Lay down had some toast and peanut butter and was sent home. On the way home I begged Mum to stop for chips, Pringles. I never eat chips, I'm a chocolate girl… little did I know my body was craving salt.

I ate the whole tube for dinner. In the middle of the night I got up to go to the bathroom and almost fainted again. In the morning I almost went down again when the nurse came to change my bandage, again with the low BP. So we called the hospital and they asked me to come in so they could investigate the permacath but really only found a fast heart rate and very low BP. The doctors decided to start me on hydration at home the following day.

A paramedic friend of mine suggested it might be something called a vagal response, which as something to do with the Vagus nerve getting compressed and lowering your pulse and BP at the same time which causes you to feel faint. I looked it up and the spot on the nerve is right above where my Permacath enters the artery in my neck. Maybe it’s pushing on that?

On the way home from the hospital I placed what was likely my 10th phone call in two days to the CT scan booking office asking them where my CAT scan was. They said they didn’t get the request from the coordinator (no shit) until the day before, but they could squeeze me in on the 12th. I asked her to read the part again about it being urgent that I have a scan before the 12th because I start chemo, and they asked me to come right over. So we turned the car around and drove back to the hospital.

I drank the contrast dye over the course of two hours prior to the exam but the technician couldn’t get a line into me to inject the dye. And they are not allowed to use permacaths for dye. I still did the scan, but I was disappointed that the scan will not be as detailed as it could be. When these things happen I feel so disappointed in myself, I can’t help it – damn my veins for giving out on me, damn my low blood pressure, damn my fainting, damn my cancer. The ultimate betrayal was the cancer, so I feel like my body owes it to me not to let me down with all the little things.

Heart Damage?

I'm feeling frustrated with the cardiologists review of my tests. I felt like I walked out of there with the usual non-answers. He said the heart was not pumping enough blood as well as it could be and that my heart rate was fast because of that.

I tried to combine that with what we knew from the previous tests, my symptoms, and my previous treatment but he acted as if they were exclusive and would not answer why the heart was like this, what it meant, how or if this would progress and what we would do about it. Sounds like every other doctor I speak too.

I'm so tired of giving the doctor my symptoms, having them pacify or play down what it could be, until it is that and then never acknowledging that the symptoms where there all along. I looked up heart not pumping blood which leads to congestive heart failure (CHF), which he mentioned casually, but I have no doubt he specifically did not use this term because of how scary it sounds.

Looking up CHF is awful, I have lots of the symptoms (mild as they are right now) and there is no treatment. The worst part is I’m not even done cancer treatment; I still have so many heart/ lung damaging drugs yet to take.

Loose Ends

I was reading back over some of my posts and thought I should provide some updates and wrap up loose ends.

Breathing problems: My last chemo was mid-Dec with the effects of that round felt between Christmas and New Years. This was the worst breathing spell yet, but I stayed calm and mostly immobile for about a week and when the cycle of drugs started to wear off, my breathing improved. Between my ER visit and now I have had numerous lung/breathing tests, scans and appointments regarding the matter. For awhile the Dr’s thought I had systematic fibrosis on my lungs (permanent scaring) from the bleomycin, but thankfully it seems to be temporary (yet sever) swelling from prolonged use of the chemical. I am breathing normally now, but I still notice a… limited air intake (hard to explain) when I workout.

Doc visits: Too many! Mid-January I had my follow-up CT/PET scan, then follow-up consult with my Hematologist and numerous lung and heart dudes.

Test results: My CT shows the mass has stayed shrunken but not gone. Sometimes these masses never go away completely and scar tissue is left, however my PET showed the mass was still active. The Dr. is not keen on radiation due to my lung/heart sensitivity, so in a few months we will look at BMT treatment

Eating and digestion: Much better and fat, fat, fat! I didn’t have too many hang-ups about food during chemo, I was on the “if you make it, Ill eat it diet!” My yoyo bowel problems are gone, thank god Ill never take my ass for granted again! Except now that it’s working again, it wants more real-estate – my ass is huge! I am so hungry all the time, and desperate for sugar. Is it an unbalance, or boredom?

Medications: None baby, none!!! I haven’t stepped into my pharmacy since Dec, and I will suffer a headache all night before I take one single Tylenol. I just need some drug-free time before it all starts again.

Energy: Unbelievable! There comes a point throughout treatment where you’ve been decrepit for so long, and deteriorate more with each treatment that you almost forget what daily energy is because the slowdown was gradual. My breathing and energy improved daily once the effects of the last round wore off. It was amazing, last Nov I couldn’t carry my own laundry to the basement and by Dec I could barely get down the stairs to the kitchen. Mid-January I was up to low key activities for about half a day, and now I could probably work about a 6hour day. My free laundry service has ended!

Ailments: My arms still ache from the damage to my veins but that’s about it. Dry mouth and dry eyes that caused blurred vision is gone. My crazy heart rhythms have returned to normal and lungs are doing what they’re supposed to. My nose still runs constantly; when will that end?

Looks: My hair is still growing, but slower than before. My skin is still dry and rough. Towards the end of treatment my body felt like sandpaper. I’m still scrubbing away and saturating myself in Shea butter but it’s not quite back to normal.

Vacation: I was too sick and tired to go away for Christmas. We finally went last week to Barbados. I think that was best that we waited a few weeks because I was in much better shape to tour and do activities.

Future: Unknown, uncertain! I really just don’t know what to do with myself right now. Physically I am feeling better and the Dr. suggested I could return to work until my next treatment, but I don’t really have a job I can walk in and out of. It would be bad for clients and coworkers to have to leave again in two months. So I’m trying to decide what to do?

Money: Almost outta coin! CPP pays very little and starts after EI times out. I don’t qualify for any EI top-ups and likely not EI disability. For the last 9 months I have been paying bills from my savings, as CPP only provides about half of what I need to meet my financial obligations. The savings run out in February, so go back to work right? If I work just a little (p/t), it’s subtracted dollar for dollar from my benefits – no gain. If I work a lot (f/t) I lose my benefits and then have to start the application process all over again when I start up treatment again. I’m trapped… fuck I was supposed to be cancer free by now – I budgeted to be cancer free by now! There is no more money to entertain this cancer nonsense any longer!

Just breathe

So I drove myself to the ER. Don’t you love it when a story starts like that? Because you know the person telling the tale is either someone who lacks perspective on what a real emergency is, or really stupid and lacks perspective on the real nature of their emergency. You be the judge.

So I drove myself to the ER on Saturday after a breathing attack. My ability to catch my breath had been deteriorating for about a few weeks to the point where I could only take shallow breaths and getting down the stairs to get my cereal required multiple stops. So I fixed the problem by barely getting off the couch. Then the breathing attacks started when I did exert myself (like walk to the bathroom), so I pulled out an old puffer I was prescribed BC (before cancer) to help.

Finally I had an attack Saturday afternoon that left me seeing stars and that scared me into going to get it checked out. Of course I waited until my family was out of town and the doctors offices were closed, so I drove myself in the snow storm to the ER.

I was into see a doctor in good time and then a few tests. I did a chest x-ray, and ECG and blood-work that included a D-dimer test. The x-ray was of no help, the ECG showed tachycardia (rapid heart rate) and I tested positive for a possible blood-clot… oh and low blood pressure. The doctor wanted me to have a lung VQ scan which would show us what we needed to know, but the machine wasn’t available on week-ends so he insisted on a CAT scan to look for the clot and I said “no way!”

I have had 3 or 4 CAT scans this year during the diagnosis phase; 2 of them nobody bothered to put the protective skirt over my reproductive parts and I didn’t know any better. Anyways I explained to him that I had applied for the PET scan program for my after chemo scan in January to avoid more CAT scans aka. radiation as I wasn’t keen on unnecessary scans and I would wait until Monday for the lung VQ. He told me I might die in my sleep tonight and I was getting the CAT.

I gave in but my body would not. My destroyed circulatory system refused to provide a vein big enough for the contrast dye injection so I was given a 24h shot of Heparin (blood thinner) and sent on my way with a referral for a lung VQ, junkie looking arms, a smug smile and a new phobia about going to sleep.

I spent most of Sunday in the Thrombosis department getting a lung VQ (open on the week-ends!!!) which was inconclusive. So I was given another 24h shot of Heparin, a referral for a leg ultrasound… because I guess that’s where blood-clots hide and guess what another CAT scan suggestion!

By Monday the ultrasound showed no clots and I was feeling better, so it could have been that the Heparin did the job or this may just be what it’s like at the final stages of chemo? (God how awful!!!) My body just might be so run down and attacked that some of my organs are having a little trouble doing their job. If that’s the case I would think they would function better again as my body repairs and recovers from chemo? I have a Cardiologist apt in a week to assess this.

Moral of the story: Don’t wait till you can’t breathe, don’t drive yourself anywhere when you can’t breathe and don’t hang on every breath of every doctor you encounter… because if they are only looking at one part of you, they are not looking out for all of you.

I’m afraid for this to end. I have just two more scheduled treatments to do, and you would think it would make it easier to do knowing I’m so close to the end, but it's not. Everyone keeps talking about this ending and me going back to work and back into a normal life and it makes me feel worse - anxious. I've been sick for so long, and feel so run down now it's hard to imagine ever feeling good again. And then going back into my normal life, I don't even know what that is anymore! This whole thing has changed me, I can't quite pin point how but I know I am not myself; I’m going to feel like a stranger in my own day.

Treatments are getting harder physically now in that I feel very nauseous during and after treatment and my body is just not recovering the way it used to. These days I barely have anytime between treatments that I feel good and have a normal amount of energy, my WBC never recovers before the next round now. I’ve upped my Neupogen to 4 shots per cycle, but it’s not really helping and the pain of it is too much for me to do 5 shots. Id rather have low counts and be a slug.

Despite the nausea I have done a fabulous job of eating my way through this experience. I’ve pushed out of most of my jeans and had to buy bigger underwear! Horrifying, I’ve gained weight before but it never pushed me to the next ass size. I keep telling myself Ill deal with the weight after, be happy with the cookies now, but I’m a little afraid I wont have the energy to shape myself up after.

The weight is also tainting my excitement for our upcoming vacation. My family has planned Christmas on a beach to celebrate the end of my treatments and give us all a break from… why we’re going with each other I don’t know? But there is no way I’m getting in a bikini, not that I can get much sun so soon after chemo anyways. So I have this awful picture of myself fat, pale, baldish and in one of those old lady skirted swimsuits knitting in the shade. That’s right I knit!

ECG...is this thing on?

I spent 30 minutes scrubbing sticky residue off my chest this morning in a state of frustration and exhaustion. I acquired my portable ECG monitor yesterday for a 24 hour trial after bringing concerns to my doctor about my heart randomly starting to pound over the past 6 weeks. It’s becoming more frequent and intense, but apparently the cure is to wear a heart monitor… because nothing happened the whole time I wore it! It’s just particularly awful because I have bruising and rash between my chest and round my ribs where the jumper cable sticker thingy’s were and a headache from another sleepless (yet calm and rhythmic) night. Eerrr!

Last week I was talking to the therapist I started seeing months ago when the whole cancer thing started and during a conversation about sleep it dawned on me that I have not slept, like truly and deeply slept in almost a year now. By the time I was diagnosed I could barely lie down without suffocating from the mass and fluid that was rising in my lungs (and later heart) not to mention a choking cough, night sweats and itching… I was a zombie for about 4 months before prior to my x-ray. Then broken painful fragments of sleep during my stay in the hospital after surgery, and straight into chemo with all its side effects shortly after. I can honestly say I sleep in fragments never really hitting REM for very long, no wonder my short term memory is getting worse by the… what was I saying?

On a bright note it snowed for the first time yesterday, big time! I should be grumpy about it (like everyone else) but the whole house was piercingly bright this morning with the sun reflected off the snow which is so much better than the last 2 weeks of rain. Plus for me the faster we move from one season to the next, the faster I get through this. Ill be grumpy when I go shovel off my car later, jeeze where’s my portable ECG now!