More Needles????

I hate needles. I really hate needles. If a needle is near me I can't look. If a needle is near anyone else, I leave the room. (Actually sewing needles and knitting needles are fine. Its those icky medical ones that cause me problems.)

Now it looks like more needles are in my future. Ick. Double ick!

Yesterday I went to see neurosurgery because of increasing pain in my neck. Real pain in my neck, not the literal kind. I do have to deal with the literal pains in the neck (like insurance companies, hospital billing departments, and poor bedside manners). Back in 2014, I was having problems with my right arm. I was sent to see a neurologist to see if there was something going on back in my brain to cause this. (A subtle way to see if there was a 'thingy' in my brain.)  There wasn't anything in my brain (except my brain) but there were disc protrusions and bone spurs on my neck.

Jump ahead 2.5 years later and I have increasing pain in my neck, shoulder, and arm. My primary care referred me back to neurosurgery. The neurosurgery physician's assistant said the following:

• Your body may reabsorb disc tissue but will not reabsorb bone so its not going away anytime soon, probably not ever.
• Physical therapy may help so we are going to try that.
• They want a new MRI of my neck (and brain) to get another picture of what's going on and see if there are any changes (read that as growth).
• The next step is needles in my neck sort of like what I get in my spine.

I am overjoyed. I can't wait. But I guess I have to realize that I can force myself to deal with needles if it means the pain might go away lessen. That is my dream actually for a pain free, healthy body. So I guess I have to stick with needles (that is such a bad pun I have to leave it even though its not what I meant to say. What I meant is I have to cope with needles.).

My Achy, Achy Back

My back has been very uncooperative recently. Actually its been a real pain, or in a lot of pain. I went to my pain management doctor a while back and he said that my back has been so bad because I haven't had any interventional treatments (a/k/a needles in my back) in a while and its time for another one. That is due for this Thursday.

But in the meantime, my back is giving me lots of grief (to put it nicely). Yesterday and Friday I was walking around hunched over in pain most of the time. My husband even cooked dinner because I was in so much pain.

Last night, I got in bed before 8 PM and took a breakthrough pain pill, an arthritis Tylenol, and a sleeping pill. I didn't wake up until 8 AM and my back feels better.... but not that great. I expect it to act up later today but I am happy with a few mostly pain free hours for now.

I do not expect a massive decrease in pain after Thursday's medical misadventure, but I do expect some improvement. And future needles in my back to help with this.

The Honest Truth

I have to admit this, especially since I am such a healthy patient. Its a constant issue for me.

I hate needles. I can't watch TV about the flu or another disease when they show people get injections.

Going for blood work is a bad day for me. And the last time I went I left behind yet another water bottle. Every Wednesday my husband gives me my methotrexate injection for my rheumatoid. I hate that part. I would never be able to give myself a shot.

Then today I had to take the cats to the vet and both of them got shots, and I was in the same room. They had my deepest sympathy on their discomfort from the shots - mental and physical anguish.

But now we can all take a deep breath and get on with our day. Until my next shot next week. Yuck.

Poked and prodded

Yesterday I had a dermatology annual skin check. This is a real conversation:

"How long has this mole been two colored?"

"I have no idea, its on my butt and I can't see it."

We did get a snicker out of that one and she laughed at herself. But the mole is no longer as it has been scraped off. And its a little sore and its on my butt. So this will be a fun day.

I also was a little daring. I had a wart appear on my left arm. My left lymphedema arm. My left lymphedema arm which cannot have needles or pressure or cutting or anything. I thought I was going to be stuck with the damn thing for life.

But the dermatology NP thought that since burning it off wouldn't be a problem because its  surface thing. I thought another second or two and said fine, go for it.

Right now my arm feels fine. I may wear a sleeve for a day or two just in case. I usually do not wear a compression sleeve except when working out or flying.

Then for more fun and games, I am going back to the doctor this morning for another look at my toe to see if I need more antibiotics or not. The first thing they do is squish the part that hurts. Ow.

That was a bad day!

I don't like needles. You might have heard this from me before. I was very clear with my oncologist when I was diagnosed that it was not an option for me to self inject. Ever. Last week I was told that my RA is not responding to oral treatment so I need to switch to injections. I was a bit stressed.

I had no idea how stressed I was. Tuesday night I took an ativan so that I would be able to sleep and reduce some stress. Yesterday morning we had the teaching lesson with the nurse to learn how to self inject.

I woke up with hives, a knot in my stomach, and extreme stress. Hives? That was a bit extreme. I have only had hives from allergic reactions before. I might have been a bit whiney as well. Only a slim possibility of that. I even took  half an ativan to help me cope.

My husband went with me as he was the mere 'learnee' and I was the mere patient in this. We got there on time and had to sit in the waiting room where my husband's hand got a bit squished (only a tiny bit). And we waited. So I stressed some more. 

Finally the nurse came to get us. I was very nervous and told the nurse - there is no point in being nervous if you can't tell everyone about it. She said it was good to be nervous as that meant I cared about my health and was taking it seriously which is a good thing. It may have been a good thing but it didn't make it easier.

My husband learned out to put on the gloves, swab off my skin, fill the needle, etc. I got to ask stupid questions and be an idiot because I was nervous. I even cowered when the put the fake fat pad against my arm for my husband to pretend to inject me. I cowered again when he really did inject me.

There was a little pinch and it did burn a little. But I survived. I think.

I left to go to work and my husband went to his other doctor appointment. My stomach started to unclench. My hives itched a little less. But I felt better. It was over. Until next week when we go through it again with out a nurse to help. Crap.

Playing Hooky

Yesterday I posted about my crappy week. It got even better. After working until 230, I rushed to a dr apt and then rushed home to a meeting that last until after 6, and then got THE call. 730am on Wednesday 4/24 we will get a lesson on delivering medication subcutaneously. What that means, they will expect me to stab myself with a needle. I will need an ativan for that.

The news this morning is all about the shootouts overnight to track down the Marathon bombing suspects. One is dead, one is on the run, police officers are dead. These guys are armed and dangerous. The subway and bus system is shut down city wide. Some towns people are being told not to leave their homes as cars are not allowed on the street. They are looking for a suspect and more explosive devices... Great.

Last weekend, a friend asked me if I wanted to play hooky for a day. We selected today. I had no idea last weekend how much I would appreciate a day of hooky. I can't wait.

In a few minutes I will go to the gym and work off some stress. Then I will go to a dr apt and then meet my friend. We will zip up to a small city on the ocean and enjoy the day - we are supposed to hit 70 - and have some lunch, maybe a little shopping, who knows. I need to get away and avoid all this.

I hope this is all over by the time we get home so life can resume some normalcy.

This has been a bad week

This has not been a good week for me and a lot of other people. First off all, the marathon bombing on Monday turned lives upside down. And it seems to be the only thing on network television these days. All my regular shows I record so I don't have to stay up late, have been superseded by more news coverage showing the same things over and over again.

I have a very busy schedule this week. I had a meeting after work Tuesday that went relatively well. I met with my boss at the job I am leaving to talk about transition and was pleasantly surprised to find out they have two replacements for me - which is good for them and makes it easier for me to train people instead of leaving lots of notes.

Yesterday I went to work where there has been a fair amount of stress going on as well. Also, I was out last week so we can just say I have piles of things to do. Then I had an appointment with the nurse practitioner in rheumatology. I had hoped for a quick appointment and a quick trip to the gym before getting my hair cut.

Instead I had a 45 minute wait to see the nurse practitioner - stuck in a waiting room with a giant flat screen tv focused on the bombings and then the federal court house had a scare and was evacuated so all the newscasters could do was conjecture about what was going on and patients and medical staff, kept asking questions. I could not ignore it.

Finally I met with the nurse practitioner and we talked about my tiny medical history before the bad news started. Methatrexate is not working well for me. I can't take the biologics that are TNFs - tumor necrosing factors. This means I will never be able to Humira, Enbrel, and that whole class of drugs.

There are still options available for me that are not the big names but they all involve needles. I have a real problem with needles. My husband said he would help. We will go meet with a nurse and get instructions at some point. (And then he told me last night he didn't really like needles either - I don't think he has a choice in this because I am not sure I can give myself injections.) But that will be next week and I am not worrying about it today.

The one advantage to injecting methotrexate instead of taking it orally is that it is easier on your digestive system. This is good because last night after taking my pills, including my weekly dose of methotrexate, my stomach turned into a giant knot and caused a lot of pain. So I ended my crappy day in the bathroom in a lot of pain.

I just have to get through today and then tomorrow I am going to play hooky with a friend. I need a day off.

A needle free future

I am elated, no, overjoyed, on cloud nine, jumping up and down with joy (as much as I can jump up and down these days) at this news. Companies are now trying to figure out ways to deliver drugs WITHOUT needles.

I hate needles. I see no need for news programs and commercials to show people getting shots. If I have to have a needle near my body, I tell the doctors and nurses that I hate needles and can't look at them. When I had injections under my kneecap (I get chills up and down my spine just writing that), they were very good at distracting me.

I have a coworker who is so petrified of needles he gets freaked out by doctor appointments. I am not that bad but still me and needles do not get a long. Every time I need blood work (every two months now) I tell them I hate needles,  have tiny veins, and they have to use my right arm which has the tiniest veins so they use little kid needles on me. Which still pinch!

When I started chemotherapy I told my oncologist that there would never be a day where I would inject myself with anything. Then with rheumatoid, my doctor muttered something about injectable options and I let her know my opinion of needles. I am still on oral medications but my RA is not under control so that may need to change. (My husband has since agreed he would give me the injections if it came down to it.)

When our cat had diabetes, I refused to learn how to give the injections. Then one day my husband was sick and slept through the injection time so I had to give the cat the injections. He never even  felt them but it was traumatic for me.

Now these brilliant, brilliant people are coming up with ways to deliver drugs orally instead of through injection. It involves capsules, micropatches and all sorts of technical things that sound expensive but they do not include needles so I am happy. Its just two or three years away from clinical trials.... So I will try to be the patient patient for now.

Up, down, up, down, up, down

No that isn't a seesaw. That's my internal body temperature - thank-you-Femara (or what ever its generic name is these days). I asked my oncologist about it. Most people get hot flashes. I don't. It gave me the inability to regulate my body temperature. This means I can go from normal to boiling hot to freezing cold and back in the space of about five minutes without moving or changing anything or turning a fan on and off.

I am overjoyed to be coping with such a minor side effect (not) in that at least I am not freezing cold all the time. My husband tells me I am a lizard because I am always cold. I tell him when I married him his job was to keep me warm. But now, I bounce wildly from one end of the temperature spectrum to the other. An example is yesterday afternoon I was driving home I alternately had the heat on, the AC on and the window open. That was in a 30 minute time period.

But in the spectrum of cancer side effects this is relatively mild and I only have another 15 months to cope with it. That's okay, its getting progressively worse as time goes on. By then I'm sure I'll be vacillating between the South Pole and a preheated oven. I can't wait.

But one thing I can wait for is my lovely day I have scheduled. I will get off my lazy but and go to the gym in pursuit of deflabbiness. After that I have a quick meeting and then will come home and attempt to productively work from home before I have a medical misadventure scheduled. Another needle under my knee cap. Now I know its not that bad. I had the other knee done in June and it was relatively pain free. I did have a lot of pressure in my knee after and had to sit there for twenty minutes to make sure I wouldn't pass out or something. Its just the idea of a needle under my knee cap. Ick! Its like fingernails on the blackboard.

When was the last time you saw a blackboard anyway? They have gone to obsolescence. Generations of children will grow up unable to irritate their classmates by running their fingernails down the black board. But I digress. Both the ideas of fingernails on the blackboard and needles under the knee cap make my spine tingle.

But I digress. I will take my over/underheated body to deflab at the gym. Later I will approach my needle misadventure with my inner wimp (who is accompanied by my inner size six person) by telling them about my needle phobia and they will attempt to distract me (which they are pretty good at) and I will plan on spending 20 minutes with a book on ice before proceeding back home. I can be such a wimp at times. But I have learned to put my wimpiness to good use.

Gimme that shot please!

I go to the back doctor on Tuesday to discuss how my new back meds are working and what are the next steps which are sure to involve more needles. A few years ago I would never have asked for a needle. I still can't look at them. But I am becoming an avid fan of needles full of cortisone for my back pain. They have proved very helpful.

But of course, just as I am starting to appreciate them, there is a new study which doubts their efficacy. (Damn these medical studies.) I think (as my little chemo brain dissects the article) that the problem is people come in with tennis elbow and other injury/overuse type issues and get a cortisone shot. Yes they get instant relief but then they also are prone to reinjury. This is opposed to waiting and taking it easy for 6 to 12 months. Well this makes sense.

If you are forced to change the way you do things to let something heal, you are reducing the risk of reinjury because it gets time to heal and you are changing your habits. If you just get a shot and it feels better, and you are not forced to modify your habits and take it easy, it would seem logical that you would repeat whatever you did and reinjure yourself.

But with my back I think its different (they could not be talking about me in that article) because my back is just piling on the pain and we are trying to ease the pain in specific areas so I can do things like sit, stand, walk, or lie down or reach for things or roll over in bed or cook dinner or bend down to feed the cat etc.

Needless to say, I will go talk to my doctor about more needles that I don't have to look at because he puts them in my back where I can't see.

Its just a side effect

I hate side effects. What is the side effect of a three hour nap? Waking up at 4 am.

Yesterday went okay as 12 needles worth of fun can be. I got to the hospital and had an hour to wait because I was early so my husband wouldn't be late for work. Normally I would go eat some breakfast but I couldn't eat. I sat in the lobby and knitted and watched CNN.

Finally I motivated to check in and went down to the surgical area. I changed into a lovely gown and coordinated robe that make us all look like other clones... Then the fun began. They had to put in an IV. I have wimpy veins. They have limited options as I have lymphedema arm which is not allowed to be used for IV's, blood pressures, etc. I made a point to drink two glasses of water before my cut off time because it can help with your veins. Basically I think that if you are dehydrated your veins are skinnier.

The first nurse tried. She poked and prodded and then she pulled out her needle and tried the first vein. She didn't get in the vein. But it hurt, more than the tiny pinch she promised and caused some bruising. Then she went to vein number two, which is nice and prominent on the back of my hand. She said that was a rolling vein, meaning it moves around, and she missed again. At this point (thankfully) she gave up and got another nurse who poked and prodded as well and then she tried. It took her some effort but finally after several needle pricks I had my IV. And two other sore spots. Ouch. I will say its not the nurses, its my wimpy veins. This isn't the first time they have had a problem. I asked about this and was told that some days can be better than others and there is not much that I can do about it.

Then we went for the fun part. I was told with the sedation, I wouldn't really feel or remember it. I did feel the first needles. But then I took a nap and it was over. I dozed in the post op area and then came home. My father dropped me off and wanted to come in. I said I was fine and got my bowl of chocolate ice cream, which the cat wanted to share, and then got in bed for just a minute. I had a three hour nap. With the cat. Even though it was 3pm I wanted my grilled turkey and cheese sandwich. I couldn't find them. I went through the entire fridge. I had to settle for left over spinach pie (quite yummy but not the same thing). I have no idea what happened.

I did get some work done after that and had dinner. I did go to bed relatively early. I feel okay this morning but my back definitely is achy sore. It is to be expected after all the needles. I should feel improvement in the next two to six weeks as it takes that long for the nerves to die off. Today I will go to work because I think I can do it. I will bring my ice pack and pain meds and can leave early if I need to.

PS I found the turkey and cheese in the freezer after dinner....

I'm starving

I want breakfast. I want a banana and some Greek yogurt. Its down stairs in the fridge. AND I CAN'T HAVE ANY! Today I am off for my lovely thoracic radiofrequency denervation for which I will be sedated so no food after midnight or water after 2 hours before check in. The whole point of the sedation is so I don't feel it or as they put in vague medicalese 'should not feel anything'. I am overjoyed to think about this. But I check in at 830 this morning and will take 1/2 an ativan when I leave so I don't stress as much.

When I come home, by lunch time, I will have chocolate brownie ice cream and then possibly a turkey sandwich, grilled with cheddar cheese, on rye, with mustard. I will start with the ice cream because I deserve it after the needles adventure. Then get to the turkey sandwich. In the meantime, I will just go with the old dieting trick of drinking another glass of water so I feel full.

I was told after this procedure I will need to take it easy for the rest of the day. Well its a gloomy rainy day so I think herbal tea while watching cooking shows will make me feel better. I also am supposed to do some work from home today. I figure I can be productive for a bit. The cat won't mind, he can hang out with me - he likes that. He thinks he is getting attention while he sleeps.

But in the meantime, my husband thinks we need to leave in an hour so he isn't late for work. I still have to take a shower, get dressed, and do all my (damn) exercises. So perhaps its time to motivate.

Needles and more needles

I don't like needles. Well, I am okay with the sewing kind but not the kind they stick into you. Its not like I will pass out on the floor but I just can't see them or look at them or see them going into me or anyone else (why do they always show that on TV? - ICKY!) or... well you get the picture. Me and needles are not BFFs. When I arrive at the blood lab for tests, I always say 'don't show me the needles'.

So yesterday it was with great interest I read this article that coughing can ease the pain of a needle going into you. Well, I think this is a big fat lie. When you cough, you react and move. What if when you cough, you move and they miss? OUCH! I'm not trying it.

Then there was a second article which is somewhat upsetting. They are recalling needles used for port injections because they are making little slivers of silicone which can get into the port or the patient. These needles were manufactured between Jan 2007 and August 2009. I had my port from September 2007 to March 2008 (or somewhere around there). I am not reassured by this at all. Do I have little slivers circulating around inside me? Well, I guess they might be better than cancer cooties but still a port was supposed to be helpful not potentially dangerous. And they don't tell you really what the risks of little slivers is. Thank you for the (lack of) reassurance.