Withdrawal Symptoms Suck

I am trying to wean myself off of Dilaudid, mostly because I don't really have much pain, only some muscles that keep wanting to tense up from my right shoulder blade, to my right shoulder, down my right arm, forearm, and hand, ending with tingling and numbness in the right hand.

The left surgical side hardly has any pain. So time to get off the Dilaudid. The nurse at Dr. F's (the local surgeon) feels that maybe I'm trying to do too much right now and maybe I shouldn't go off Dilaudid just yet. But I think it's time.

Since I started going to Dilaudid every 10-12 hours, I've had a headache. I also had a leg cramp in my lower right calf early Friday morning. I get hot flashes and woke up from one my cat naps last night sweating. I also got felt sick to my stomach after lunch - like right after it. We drove home from Portland and I felt sick the whole way. I came home and napped off and on for about an hour.

All but the headache are official symptoms of withdrawal, according to websites. But the plastic surgeon in Portland and the regular surgeon felt the headaches were Dilaudid withdrawal symptoms.

Dr. F's nurse suggested Valium to help with the right shoulder blade/shoulder pain. Then, a friend in Australia, V., also said Valium was used to help her wean from a pain medicine. So, I asked Dr. F and received a prescription for Valium last night. I just took the second dose. We'll see if it helps with the headache. It's okay if I don't move my head too fast. I am going to try to stay with Dilaudid every 12 hours for a day or two and then try to decrease it again.

In the meantime, I will make an appointment locally with my physical therapist about the lymphedema in the left arm. Dr. F wants to wait and see what happens with the lump on the breast bone for another couple of weeks, but if treatment doesn't shrink it, I will be looking at another surgery soon. Also, Dr. F will take out the catheter/port in my right arm since I don't really need it.

Dr. T at OHSU felt that the wound might have skin over it in another two weeks. The hypergranaulation, which occurs in several spots in the area, is causing the healing to go slower, but it's going. It even looks less red to me. I see the wound care nurse again this afternoon.

Today, I've got class and I will also meet with a candidate - right after lunch and for dinner. But I might have to skip dinner depending on how I feel.

Have a good day everyone.

Minor Issues

First, I want to say that I think I'm doing okay in the grand scheme of things. My tumor marker is low and most of the elevation is probably coming from the tumor on my breastbone. My energy is coming back (although I didn't feel like doing anything after wound care at 1:30).I am doing more or less normal activities (well, normal for me in the last year or so). Life is sorta getting back to normal.

There are some minor issues that I'm finally getting around to thinking about now that the major issue (the wound) is resolving. I'm still trying to grow skin over the flap. It's not going to be done by the time I see Dr. T. in Portland on Monday but because I know there is an end point in sight, I am continuing to deal with daily dressing changes. It is still bleeding, which then makes me wonder about my energy, so I will continue to rest and not push myself too hard.

The other issues are:
1) lymphedema in the left (surgery) arm. The swelling is mostly in my bicep and tricep area, but on Monday, I must've lowered my arm a lot because when I got home, I couldn't see my wrist bone and most of the bones in my left hand due to swelling. I've spent most of the last few days trying to keep that left arm elevated. Now I can see my wrist and even most of my elbow, although there is still swelling just below my elbow, too. I mist have to wear a sleeve.

2) the tumor on my breastbone. I could tell that it grew after surgery. I hope that Herceptin stopped the growth, but I still have about a 3-4 cm lump protruding from my upper chest. That lump seems to have gotten more purple and blue since Herceptin, which might be death? Either that or it's grown so much that it's bursting the skin at its seems and the skin is bruised in response. I hoped that it could wait until summer started, but maybe well have to do surgery to cut it out sooner rather than later.

3) the right shoulder/arm/hand pain. I am constantly telling myself to lower my right shoulder and relax it. I keep tensing it. I also find myself tensing that right hand. It's one reason why I'm not on the computer (blogging or facebook) as much because it irritates that right arm. Acupuncture the other day helped to relax it some and I'm trying to keep the effects of acupuncture (relaxation) more in play. I think it's better, but I still get numbness and tingling in my fingers.

4) the P.A.S. port in my right arm. The catheter seems to have moved around before and after surgery. There's a slight buckle in it, near the port, where the catheter makes a kind of "s" curve. I can also feel the end of it in my chest - all the skin around that area is tender. It feels swollen to me. And, while I can stretch my arm out horizontally, I can't stretch it out overhead because it starts hurting. I have a suspicion that things shifted somehow. I really want this port taken out. If it gets as painful in my next infusion as the last time, I will talk Dr. K into taking the damn thing out. I don't think I need it after all . . . I don't plan on having chemo again anytime soon. Just the targeted therapies (Herceptin and Zometa).

So, several issues related to my upper body. I hope to gradually work on each of them so they can resolve. : ) Happy Friday!

Visits with Doctors

On Monday, I saw the plastic surgeon. I asked her why I still had an open wound and the answer was that the bacterial infection (bacterial colony, really) wiped out a lot of the skin graft.

The latisimus flap (the muscle near your shoulder blade) did fill in the big hole created when they took out the cancerous mass. The skin graft was to cover the whole area, but the infection wiped it out.

Dr. T was pleased with the progress of the wound after the infection. Now the whole area is nice red granulated tissue. That tissue will eventually form skin - maybe in about two weeks - but it's going to stall out because the skin can't grow up the "wall" that formed near the back of the wound. Remember when I said that it looked like a ledge? The healthy flesh coming from my back toward my armpit all of a sudden dropped down a 1/2 inch. Well, in order for skin to grow up to that, we need to create a ramp or a slope going down to the granulated tissue, so she used silver nitrite (which is used to cauterize bleeding wounds) to kill some of the tissue at the edge, so it can create a slope that will allow the granulated tissue to grow skin up to that level. There was also an area in the middle of the wound of "hyper-granulation" that needs to be killed so skin can form there. So, we're still in the process of growing tissue. At least I now have an estimate to when I no longer have an open wound. I can handle a couple of weeks. I had a vague idea that it might be months. I'm relieved about that.

Then, yesterday, I saw Dr. K, my oncologist. The assistant noted that it looked like I lost weight. I think I have since surgery as my clothes are looser. I ended up weighing 135 pounds, about 8 pounds less than I did prior to surgery. That was a surprise because when I was in the hospital, I weighed 142. Anyway, I figure I have lost the implant (good for a pound or two), the big mass under my armpit (good for another pound or two), plus I drained a lot of fluid (the whole armpit had edema prior to surgery). I told the nurse that my appetite has been great so I don't think they are too concerned.

I talked to Dr. K about the tumor near my breastbone - I have watched it grow a little bit in the last few weeks since surgery. It seems to want to grow up and out of my skin and now has a little purplish bruise on the skin above it. Also, about an inch up my arm from the port, it seems that part of the catheter comes up to the skin before going down again. I wondered if the port needed to be taken out. He thought that the catheter was okay and also decided that I should start Herceptin again to try to stem the growth of the breastbone tumor. I haven't had chemo for about 7 weeks, so I guess it's time. Eventually, that tumor may be taken out surgically. But I don't feel like thinking about that any time soon. I wonder if I should stat making a poultice of turmeric and aloe vera gel and putting it on that tumor to see if a topical application would help stem the growth? It certainly wouldn't hurt, I guess.

In the meantime, I made it through class yesterday. I asked the students where things stood with their projects and I helped talk them through their literature review. I was pretty tired afterwards - listening for two hours and trying to concentrate on what they were doing. Then I came home, ate lunch, went to wound care, then picked up Eddie, ran an errand, and then saw Dr. K. Whew. I laid down after dinner and I dozed a couple of times through the evening. I didn't get to sleep until late, though. I ran over to the MU for a snack before class and my legs felt shaky afterwards.

I made it through two busy days and didn't feel too tired. Yay! I do try to take it easy when I can. Today, I only have wound care. I might also run an errand or two. Otherwise, I need to grade papers and do some paperwork. My plan is to take Ed to school, come home and rest until I go to wound care, then go back to my office to take care of papers.

No port for now . . . And CT scan results

I saw the wound care nurse today and she felt that my wound is not infected. And Dr. K didn't see any signs either, but he gave me a prescription for Levaquin, in order to get rid of any infection I might have - some bug that I may have picked up this last weekend. I took the first dose this afternoon, on an empty stomach and it's made me a little queasy. Now that I have eaten some, I am feeling better. But I got off my schedule a bit with the Ibuprofen and Tylenol, so I have had chills and a headache again. I think I am getting back into it again and I am feeling better.

However, I didn't sleep well last night -aches and chills, then too hot and sweaty- so I have been tired and that coupled with the ongoing fever and chills, I find myself really weepy. I don't feel strong today at all. And I don't like feeling that way.

I asked Dr. K about the port issue and he explained how both the chest one and the arm one work. He did say that it might be better to get the arm one because of the scar tissue and the swollen areas under my collar bone. However, he doesn't want to put in a port at this time because of the fear of infection. If the armpit wound gets infected, it would cause the port to be infected, too, and it would have to come out. So until the wound heals, no port. For as long as my veins can handle it.

As for Abraxane, I will be on it for at least two months and then we will reevaluate. If it works, then I will go on it for another four
months. That gets me within the timeframe for when the Herminator-2 cells should be working well, so with any luck, I could go off Abraxane then.

Then the CT scan results. The bad news is that in addition to the main lesion and satellite lesions in my armpit (the main one being about the same size), the radiologist felt that there is now a lesion on my liver (although Dr. K didn't seem to be completely sold on that idea), there are spots above my right collar bone (which I knew about), in the upper center of my chest (where there was some extra tissue after reconstruction -it seemed bigger and more tender), some suspicious pictures in my right groin and also some growth on a vertebrae in my spine. The good news is that the largest lesion in my left lung only grew 0.1 cm since mid-July. So the biggest problem areas from July appear to be about the same size, which I hope means that the t-cells were doing their job in those areas. Maybe, just maybe, this means that the lesions that were there at the time of the t-cell infusions have stabilized (meaning that it is working) but new spots that have cropped up in the last couple of months (remember no Herceptin or Zometa since late July) are not yet affected by the Herminator-2 cells, that my body's immune system is not yet primed enough to work on these new spots.

So, yep, it's time for Abraxane. I will also get Zometa again.

I have been trying hard not to feel too sorry for myself. I don't like feeling helpless. But hard to do when I am also fighting an infection.

However, I already feel less weepy now that I have had the Levaquin. Can it be working that well already? And I am back on track with the Ibuprofen.

P.S. My temp is now 97.9, about three hours after I first posted this entry.

CT Scan Results

My doc called me with the CT scan results yesterday. It was as I expected: the three tumors in my left lung are still there and they have grown over the past six months. The largest grew from 2.0 to 2.5 cm. That's 0.5 cm in six months. Compare it to 1.0 cm in the three months before that (that same tumor went from 1.0 to 2.0 cm in three months). So, Tykerb plus Femara (or whatever combination it was) slowed the growth down, but didn't stop it.

The lymph nodes under the left arm pit have sorta grown together into a 5cm mass. That will hopefully disappear with the new treatment. Other lymph nodes around the lungs (under my breast bone, near my aorta, and in my pelvic region) have also grown.

On the right side, there are four ribs, behind the breast tissue and back, that have extra calcium deposits that are indicative of healing. We don't know how long ago they were broken or how long they've been healing. (Note, the last time I noted healing ribs in Fall 2008, there were only three ribs involved, so apparently, another rib fractured.) The little nodule I felt under my RIGHT arm pit, near the breast tissue, might be scar tissue, but my doctor feels that it's probably a little "nest" of cancer cells.

For now, all of them will be treated with whatever combination of drugs we decide on.

My doctor also gave me the contact info for the UW folks - it's the Her-2 Study Group. They may accept me as a patient - and maybe even harvest some of my t-lymphocytes to create a vaccine to help stimulate my immune system to attack the cancer. I'll contact them on Monday.

In the meantime, my folks and brother are continuing to move things into the house. My brother is all moved in. We rented a U-Haul and got most of mom and dad's big stuff. I cleaned out my files . . . and have almost put all of them away. So, things are progressing slowly but surely. Whew! Yay!