July 8th - Post-chemo follow up

Okay this didn't go as I had anticipated. I am troubled by my appointment today, which is why I am writing this at 1 am! I need a little advice from my friends. My doctor doesn't want to do radiation on me as a preventative measure, assuming my next PET scan is clean. I have been told by many others that radiation is the standard after chemo in Hodgkin's treatment regardless of what the PET scan might show. I had a significant tumor in my chest going into this and it needs to be GONE. I haven't felt the need to question any of my doc's recommendations up to this point. But now I feel that I may need to get a second opinion. When I raised my concerns about foregoing the radiation, I felt like she dismissed them with a "Because I said so" approach, which was very surprising coming from her. She has had excellent bed-side manner up to this point and is usually very patient and willing to explain her convictions. The fact that I am even questioning her expertise troubles me. I feel like my oncologist has been my personal guardian angel through this. My faith and trust in my doctor has been unwavering, and tonight, I feel just as confused and scared as I did 6 months ago. When will the day come when I can put these "life or death" type decisions behind me?

June 28th - 12th and Final Chemo

Sorry for my delay in blogging. I had my final chemo on Monday and I wanted to wait a bit to post. I didn't want my post about my last chemo to sound whiny, so I wanted to wait a few days for my overall whininess to dissipate. Also, the neuropathy in my fingers makes typing not so fun.

The last one was very difficult. On Tuesday and Wednesday, I couldn't get out of bed or walk for that matter. I refused to let my husband leave my side because I really thought I was dying. That's how bad it was. I was also having difficulty swallowing, so on Wednesday, I went back to the doctor's for more IV fluids. I wasn't happy because my doctor was on vacation and I was sure when my doctor's colleague saw me, he was going to admit me to the hospital cause I was in such rough shape. But all he said was, "Just be thankful this was your last one, your body wouldn't take anymore of this." He also explained that the difficulty swallowing, moving my neck and walking was all attributed to really bad neuropathy, and would pass. By Wednesday night, things had improved and I was able to get out of bed on my own, and walk, although my husband said I was "leaning to the left". I just kept thinking of a car with a bad alignment when he said that : )

And now this weekend I am doing much better. Neuropathy is still in my hands and feet, but much better than it was. Also still a little fatigued and a bit nauseous, but each day is an improvement over the last and I know now that it is only a matter of time until I am back to my "old self".

So here I am. I made it. And it really sucked. I wouldn't wish this experience on my worst enemy.

June 15th - Chemo #11 (one more to go!)

Wow, this one really kicked my ass this time! Even though mentally I am persevering, my body is screaming that it has had enough. I came home yesterday after chemo and I was so fatigued I literally couldn't get out of bed for hours. I barely had the strength to roll over. When I finally did get up, I felt like my arms and legs were weights. Then on top of all that, I later got complete neuropathy in both hands and arms (which basically feels like numbness, but with a dull achy feeling.) It was horrible, I think I slept a total of 3 hours last night. I'm doing better today thankfully. Just the usual stomach problems and flu like symptoms.

During my appointment, I tried to discuss with my doctor about the elephant in the room (radiation), but she won't discuss it with me until after my final PET scan. She did say I am a "boarder-line" case and because of this I have a feeling she will ultimately let me decide.

My doc is on vacation in 2 weeks, so it looks like I will be going for my final chemo on Monday June 28th. Apparently I am doing so well they are going to do my final chemo without a doctor exam first!

June 28th will be like Christmas morning! Because after every miserable moment that passes that day, I know it will only get better for good this time. : )

June 9th - Having cancer is such a pain in the @ss (or back?)

Nausea is gone until next time, YAY! But the back pain and fatigue are killing me. I am wearing out my heating pads big time. I have one on the couch downstairs and one in the bedroom. I recently had to replace the couch one, because my "Cujo" rat terrier decided to eat it. At least it's cooler this week. I don't have central air and it sucked to lay on a heating pad all day in 90 degree heat! But the worse thing is driving. Must have something to do with the way the seats are made in my car. When I'm the passenger it's fine. I can squirm around or curl up in a ball and take the pressure off it, but when you're driving that's not advisable.

The fatigue is bad too. Long gone are the days I could spend hours shopping at the mall. I barely have the energy to run to Stewart's for milk. Seriously, as much as I used to hate grocery shopping, I truly despise it now. I am becoming a hermit. I try to leave the house as little as possible. I would say that my wallet is appreciating the break from shopping, but it really isn't experiencing any relief, due to my addiction to Amazon and Ebay. And I only have to leave my heating pad for a second to open the door for UPS. Not to mention the added medical bills. I really don't know what people do without insurance.

So my back hurts and I am totally exhausted and I have to drive to the doctor's office for blood work. : ( It is such a pain the @ss. Drive 30 minutes and fight the biggest construction zone in the capital district, to be stuck with a needle and told my red blood cell count is low, which obviously, I am well aware of given the level of fatigue I am feeling. Arrrgggg!

Ooops, I gotta go, UPS is at the door. And I'm done ranting now, thanks for listening, or reading. Only two more chemos to go! And then I promise, I will never complain about anything, ever again. (Please don't hold me to that, but seriously, I will do my best.)

June 1st - Chemo #10

Sorry for the delay in posting about my latest chemo. I have been really really sick this time around, so I haven't felt like talking/writing about it. Had the chemo Tuesday morning and by Tuesday night I was already feeling nauseous. Went back in to the doctor's office on Wednesday for Neulasta and more stomach meds (didn't do a lot of good). So I am just trying to ride it out, constantly reminding myself that I only have to go through this two more times.

In fact, I am so close to the end of my "Chemo days" that I am now on to worrying about the next step, radiation. The doc still hasn't said one way or another on it. But I have worries about having it and worries about not having it.

So here's the plan as I understand it. I have my two more ABVD chemo treatments, the last one being on June 29th. Then I have to wait a month before having my PET Scan, which will hopefully be clean and basically mean I am in remission. And it is at that point that a decision needs to be made about radiation.

In the mean time, I think I will read up on radiation a bit. I need to understand the risks vs benefits, so when the time comes to have that discussion with my doctor, I will know what I am talking about.

May 31st, Happy Memorial Day

Hope everyone had a great holiday weekend. I did. Riley and I visited our friends at their camp over the weekend and we had a blast! Great weather, food, canoeing and great company. Doesn't get any better than that! But, It is almost sad to have these few "normal" days in between because it reminds me of what I am missing.

Now, have I mentioned how much I hate f*%king chemo??? I can't sleep tonight knowing what I am headed into tomorrow! I hate the night before almost as much as the day of. I really feel like I am walking a plank and tomorrow I will be the scared little puppy being dragged to the vet/oncology office in the morning. I am now experiencing what they call "anticipatory nausea", which means I get sick just going into to the office. After I am home from chemo, I have flu symptoms for days, coupled with severe nausea and the only recourse is to go back into the office for more meds, which makes me even sicker (remember anticipatory nausea), so around and around it goes.

Only thing keeping me going is that I only have three left!!! But even three at this point seems like a mountain to climb. Each treatment gets harder and I hope my body can withstand the last 3.

I better end this post I am getting nauseous just typing about it.

May 17th - Chemo #9 and PET scan results

First off, I should let everyone know that I had a great weekend. My symptoms were almost nonexistent and I was able to go out and walk my dogs and even do some yard work. It's nice to have these few good days in between, it makes me remember that I won't be dealing with this forever.

PET scan results from last week were good. The tumor in my chest is down to 1.5 cm with a small amount of uptake (for those of you not familiar with these tests, little uptake means not alot of cancer there). Also the cancer in my neck is listed as "resolved" Woo-hoo!

I was secretly hoping for it to show no uptake and for it all to be "resolved" but you know me, I always set the bar a little higher...but I still have 3 more chemos, and I am positive that it will show zero uptake when I am done with my 12th.

With the cancer still present, my doctor still can't say whether or not I will need radiation. That decision won't be made until all of my chemo treatments are complete and I have another PET Scan. I should be glowing like a Christmas tree after all this radiation : )

We are also going to treat my nausea a little more aggressively this time, since it was so bad the last time around. I will go back tomorrow and get my half shot of neulasta and different anti-nausea meds and IV fluids.

Of course with the good news comes some slightly not so good news. The doctor and I believe that my lungs may be receiving some damage from the chemo, albeit very slight. One of the chemo drugs I am on, can cause irreversible lung damage so it is common to test the lungs though out the treatments. I am going for my PFT's (Pulmonary Function Test) on Wednesday.