Seven Weeks Post Treatment

Working on week 7 post treatment

I do expect that my bloods (HGB and WBC, etc.) are up to normal by now as the symptoms of low blood have subsided. I can breathe.

Emailed the clinic and NP indicated that the symptoms I was having were not normal to post treatment sides. She suggested that I call the local hospital and see if they had a cancellation as she would like to have the ultra sound done prior to my appointment next week. They did have a cancellation and I’ll be done tomorrow.

I did try an over the counter acid reflux med yesterday. I’ll keep it going today to see if that helps. However, I am having reoccurring bouts of extreme pain within an hour and a half or two hours after eating. It lasts for approximately an hour to a point of extreme pain and then eases off. I am usually sore for a bit following the siege. I have to go to emergency, but I always find excuses not to go. I’m hoping it’s just a phase, but the phase is hanging on with a vengeance.

I’ll have to go to my own doc for more extensive investigation if the ultra sound is good.

Energy level is good for someone that has been dormant for 72 weeks of treatment. My weight is coming back up even though everything I eat feels as if I ate a lump of clay. Seeing very positive changes and my skin is improving. I still have the eye-lid scald thing so that will have to be investigated.

Had a few low dips in my mental attitude because of this stupid digestive thing, but I push through it and get out of it.

Working on Week 6 Post Treatment

I am coming along “detoxing” from treatment. I have noticed an improvement regarding my breathing and the cement block feels as if it has been lifted off my chest. Some colour is returning to my face and brain fog is lifting and my will is telling me to tackle projects, but the body is screaming in protest with sore muscles and joints with the exposure to new activities. The joints and muscles are protesting from being unused for 72 weeks. It was something I expected. It was a great piece of advice from NP not to go at an exercise regime for at least eight weeks. Just getting back into the grind is enough exercise for me. I am happy to report that I wore my knee high support hose yesterday and they didn’t fall down so my calves must be getting some muscle back. (You know you’re skinny when your support knee highs fall down)

A negative aspect is that it’s as if my digestive system has awakened from a coma and it’s giving me extreme grief. On treatment it seemed as if my digestive system shut down and the food just dumped through it. I ate but the weight loss was evident and I expect the digestive system just wasn’t doing its job because of the harsh drugs.

I have had a consistent side pain in the upper right hand side around the rib cage and under the back shoulder blade throughout treatment. It nagged me, but became more evident towards the last eight weeks of treatment. It was a symptom I had to a degree prior to treatment. I did have all the appropriate tests done regarding my gallbladder prior to treatment. It was indicated that it was probably a pulled muscle because I am right handed. (?) It is not a pulled muscle. It’s not the same feeling. It feels as if it’s inside.

The symptom has reared its ugly head with a vengeance since stopping the treatment and after consuming a turkey dinner later one evening this week I experienced severe pain upper right side to the point of vomiting. Being a sucker for punishment I ate a small plate of leftovers the next night and was rewarded with the same extreme pain to the point of vomiting again. The next night I ate cereal for dinner and I didn’t experience the severe pain. The next night towards the early morning I had the same excruciating pain. It seems to last an hour or so and then it subsides. After these “pain fests” I felt as if someone punched the heck out of my insides on the right side. I think I’m a pretty tough cookie (gloat), but these attacks of severe pain are almost intolerable. Tylenol does NOT even put a dent in the pain.

I did email my NP to see if this were a common occurrence coming off tx as I wanted to go to emergency both times I reached the point of vomiting. I didn’t go to local emergency because I’d have to spill out too much information and I’m not willing to do that.

NP will be off work for a week. There is no point in going to my local doc.

Something is very wrong.

End of Treatment - Undetectable :)

Working on Week 5 – Post tx

Nurse practitioner called on March 4 to tell me that my end of treatment blood test came back undetectable for the virus. It had been four weeks since I had it done and I knew it would take a while to get the results. However, I was pleased that it only took four weeks to receive the results.

I’m still in the game so I wait. Renewed hope...

I am pretty battle weary.

I am noticing that my breathing has improved more and more. Yesterday I realized that I seemed to have a bit of brain clarity and the fog is slowly lifting. I have introduced an Omega 3 type supplement into my recovery as I do need my brain to go back to work.

My runny nose symptoms have started to subside the last week.

I had to succumb to using very mild cortisone (over the counter 0.5 mg) cream on my eyelids. I tried for two full weeks to battle this renewed side effect that reared its head following tx. It wouldn’t go away and even though it’s not recommended to use this product near your eyes I had to use it, cautiously, for four days. I applied it sparingly, once in the morning and once at night. It took the edge of it, but I’m not clear of that lingering symptom yet.

Appetite is good and steadily gaining weight.

My skin tone is improving and I don’t think I look as ghastly white as my haemoglobin struggles to recover.

My joints and muscles are SCREAMING with protest regarding my renewed busyness. I know the joint and muscle pain is related to being inactive for 72 weeks and me trying to pick up with living a normal life (without regimented exercise). I was planning to get back into the swing immediately following tx and the nurse practitioner advised me to wait at least eight weeks following tx and she was right on the money with that piece of advice. I thought I could step right back into my regular life and I was so wrong. I have realized that just doing everyday stuff at a faster pace has made my muscles and joints sore and achy just as if I started a new exercise regime.

I ended up car shopping with my brother and my husband. They put me in the back of a Jeep and drove me around the city to car lots. Well, I was pampered up until then. I always sit in the front passenger side and I can usually drop right out of the vehicle (being just under 6 feet I like a higher vehicle to get in and out of). However, being shoved in the back seat was a whole different story for me following 72 weeks of tx. The two men tore out of the car and were at the door of the business while I was still trying to struggle myself out of the back seat. I was like a giraffe stuck and flailing. My muscles screamed in protest and I had no strength to pull myself out. I managed to get out (ungracefully) and my brother was looking at me as if I were the village idiot. It was as if I went to the gym and had a full work out and my muscles and joints screamed for several days following that scenario.

My eyesight problems are starting to diminish. I noticed a difference around week three, but this week it’s much better. I am not provoked into light flashes and pseudo migraine auras when I don’t wear my sunglasses in the house. I only had an estimate of four or five head banger migraines on tx, but I was plagued with the auras that bright light can cause. I would be sent into 20 minutes of whirly shimmering eyesight. Looking out the window, bright computer screen, television, fire place, over head light in a room would set me into these auras. I had to look like a rock star with the sunglasses on in the house all day no matter if it were a sunny day or not. I felt like an idiot.

The only thing that’s scaring me is the fact that I have lingering (sometimes nasty) side pain. It makes some days horrible and other days OK. I expect that it will pass once I purge more of the tx from my system.

Four Weeks Post TX

From sitting like a blob for 72 weeks I have found that now that I am a tad active with just shopping and doing very minor things around the house I feel like I have been tumbled in the clothes dryer at the end of the day. My unused muscles are screaming with fatigue and soreness and the joints are just giving me supreme attitude. I am pretty sure it’s just from getting back into life. My liver is actively trying to clear the drugs and is giving me a good old knowing throbbing ache. I don't want to take any Tylenol unless I absolutely have too as I want as little stress on the liver as possible. Taking extra drugs will just add more stress it. I will take something if I need a break, but I can stand it for now. I nearly wanted to take a Tylenol yesterday during a shopping trip to the city as it was really acting up, but I suffered through it. Must not have been in enough pain to need a pill so I’ll preserve.

One thing about post tx that I noticed is that some sides I had throughout tx have continued and some have really became annoying. I always had itchy skin and some problems with my eyelids. Upon stopping tx I have been battling extremely dry itchy sore skin around the eyes and on the lid itself. I want to use a mild cortisone cream, but it is not recommended to use it around the eyes. I have been using a lot of moisturizer, but I don’t think this is going to work. It never goes away and it gets very sore, red and flaky. It looks like my lids are scalded. I had this intermittently throughout tx and it would subside (to a degree) and resurface with a vengeance from time to time.

The other noticeable thing is that I have started to notice bruises, especially on my legs. I have no idea what I did to cause them and do not remember bumping the area. My platelets stayed OK throughout tx. They weren’t great, but they were never in the danger zone.

Also, I always had minor nose bleeds on tx, but since stopping I am assured to have one in the morning.

I expect that it’s the hemoglobin and other blood issues trying to “right” themselves following the long term depression of the bone marrow.

I have noticed that my riba rage isn’t so rage “y”. I get irritated and do push it down; however, there were times on tx my behavior was shameful. It just wasn’t me. I would like to think that I don’t dwell and obsess about stupid stuff now as much as I did not tx. It’s still there, but I shut it down when I realize I’m going there.

I did take a dip a couple of days last week. I am on an anti-depressant and that has helped me through tx and the last few weeks. However, the body is so suppressed on tx drugs that since coming off those drugs the anti-depressant has given me the side of a choking, lump in your throat kind of feeling. I am not keen to come off the anti-d so quickly so I have tried a reduction. 10 mg (full dose) one night – 5 mg (half dose) the next night for a while. If that doesn’t work I’ll try 5 mg every night. Not sure if this will work, but I am hopeful to stay on the meds until at least six months post tx. Wait and see on that issue.

These are minor things.

On the very positive side of completing tx is that my breathing has improved the last few days. I can nearly take a full breath and feel like I’m alive. I can sustain some thinking tasks and have noticed a tad more clarity with my reading and figuring out minor problems. There seems to be more order in my thinking. It’s not back up to the way it was prior to tx, but it’s only four weeks post tx.

My appetite has improved and I seem to crave nutritious foods. It’s an amazing thing regarding the body, if it’s deprived it seems to be able to tell you what it’s missing.

The most positive thing is that I have hope that I’ll actually feel better once the drugs purge from my system.