Hopefully this week

This is Brian with another update on Wendi. She is still recovering in the hospital. She was originally on track to be discharged from the hospital on Thursday, October 1, but I suspect that will probably end up being delayed. She has an elevated temperature (100.6 deg), which could be indicative of a developing infection where the IV line is inserted. To deal with the infection, her IV line was taken out last night and replaced with a fresh one. If she turns out to have an infection, it's not life-threatening, but her doctor is concerned about the infection spreading to her kidneys and complicating her recovery. She is receiving antibiotics through her IV line until her condition improves. Her doctor won't even think about allowing her to go home until her temperature drops and stabilizes in a more normal range.

More delays

This is Brian with another update on Wendi. Her release from the hospital appears to have been delayed again. I'm not completely sure why; I'm not aware of any complications or problems with her recovery. I'm only speculating here, but my best guess is that her doctor is becoming reluctant to send her home with all those tubes hanging from her. It's quite a chore for her to crawl into and out of bed with them, and she can only sleep on her back (which becomes very uncomfortable after a while). I know my preference is for her to have all the tubes out prior to coming home. Time will tell.

Wendi's recovery is going nicely. She is eating solid food every day (but limited to "soft" items for now), and today was supposedly the last day she would receive any nutrition through her IV. She's complaining of being very bored at the hospital, and she really wants to come home. Aside from the obvious problem of the tubes that are not ready to be removed, she is also very weak from being bedridden for nearly two weeks. It's all she can do to walk around the hospital floor a few times each day; for her, it's about the equivalent of the rest of us jogging several miles. She has quite a bit of physical therapy in her future.

Right now it looks like she will be discharged from the hospital towards the end of this week. As always, I'll post an update when I know more.

Getting better one day at a time

This is Brian with another update on Wendi. She is still in the hospital, although she is slowly improving each day. She did not get the kidney stent removed after all; there were scheduling problems so her doctor decided against the procedure. There is no harm in leaving the stent in place for the time being. She is more alert, and she doesn't have a CNA in the room watching her nearly as much as she once did. She started eating solid food on Friday, but she ate such a small amount that she still has to receive most of her nutrition through an IV bag. She probably needs a few days to work up to normal amounts of food.

Wendi has spoken with the discharge planner a couple of times. Right now it looks like she will be discharged next Monday or Tuesday. She will still have some tubes in her for another week or two, but no IV bags (we hope).

Patience is a virtue

This is Brian with another update on Wendi. She's still in the hospital, and she still has a CNA watching over her most of the time. She is improving slowly from both a physical and mental standpoint. Her doctor is taking things slow; she's still on an all-liquid diet, and her main source of nutrition is a bag of sugar water pumped through an IV. She's scheduled to have one of her kidney stents removed on Thursday, but the tubes have to stay in there for a while... possibly another week or two. Her doctor told me that she will still have tubes in her when she is discharged from the hospital; that will make it difficult for her to sleep. Once she comes home, she will be very weak, so she will need to build up her strength over time. Right now it's all she can do to go on short walks around the hospital floor with the aid of a walker.

I have to admit, I would feel much better about the situation if she had all the tubes out of her before being discharged from the hospital, but I suppose it can't be helped. Better safe than sorry... We're not exactly sure when she will be discharged; best guess, it will be early next week. At the very least, she will need to be eating solid food, which she has not done since the surgery.

Out of the ICU

This is Brian with another update on Wendi. I'm happy to report that I was wrong about how much time she would need to spend in the ICU. She was transferred to the surgical recovery section this afternoon. She is still not completely coherent, but she is improving slowly. From a physical standpoint, she is doing quite well. She keeps trying to stand up and walk around without telling the nurses, so she has a CNA watching her most of the time. If she accidentally pulls any tubes, she could subject herself to additional surgery and extend her hospital stay. She has her cell phone in her room now, so feel free to call her. She also has a landline phone in her hospital room; send me or Wendi a private message on Facebook if you want the number. (I'll get the message either way, at least until she comes home.)

On Tuesday, she is scheduled to begin physical and occupational therapy. That makes sense, considering that she has been bedridden for almost a week. She is most likely not coming home until all the tubes are out; best guess, that will be towards the end of the week.

Driving the nurses batty

This is Brian with another update on Wendi. At the rate she's going, I think the nurses are personally going to insist that she be moved out of the ICU. She's driving them batty. She's moving around quite a bit more, rolling around in the hospital bed and trying to sit and stand up. There's nothing wrong with any of that; the nurses have been helping her do all that, but she's trying to move around when they're not there — bad idea when she has about half a dozen tubes and IV lines in her.

Wendi has always been very self-reliant, and I was certainly seeing that today. Since she is still on a bunch of medications, she is not entirely coherent, but she is improving slowly. From a physical standpoint, she seems to be making excellent progress. She wants to leave the hospital entirely, but she can't even leave the ICU until her doctor is happy with the condition of her kidneys. My suspicion is that she will end up spending most or all of her remaining hospital recovery time in the ICU. Time will tell.

Slow and steady progress

This is Brian with another update on Wendi. She is doing better overall; she occasionally has trouble communicating, but that is more the exception than the rule. She is awake more often, and she has asked for a television set in her room. She has also asked for her cell phone, but the ICU will not allow that. I mentioned the other day that she had a procedure called percutaneous nephrostomy on one of her kidneys. Today she had the same procedure done to the other kidney, since her doctor did not notice any improvement after the first procedure. Determining which kidney was damaged, and where, is apparently a tricky business.

Barring any more unexpected complications, it looks like Wendi will be moved out of the ICU within a day or two. Most of her vital signs are in normal territory, but she is still anemic because of all the blood she lost. (She received a transfusion of two units of blood during the surgery, which is just under two pints.) To be transferred out of the ICU, she will need the consent of the attending physician in the ICU, who I'm sure will check with Dr. Bahador to get his input. After that, she will remain in the hospital, probably in the surgical recovery section, for at least a few more days.

The hits just keep on coming

This is Brian with another update on Wendi. She has mostly joined the rest of us in the conscious realm, and she is able to communicate to some degree. She occasionally fades out and falls asleep, but she is starting to recover. Despite the procedure she had done the other day, Dr. Bahador is still concerned that normal function has not been restored, so she had a scan done tonight. She may need a follow-up procedure; I'm sure we will find out within the next few days.

Dr. Bahador met with Wendi today in the ICU; her father and I were also there. He mentioned that Wendi's surgery was extremely difficult, mainly because of the distention caused by the tumors. He also told us that there is an area of concern in Wendi's lungs. When she got a CT scan in late August, it showed small nodules in her lungs. You cannot really make an accurate determination on such small nodules; however, in the scan she had done earlier today, the nodules appear to be larger. It is premature to say that they are cancerous; a CT scan alone is not sufficient to reach that conclusion. However, her doctor is concerned enough to bring it to our attention. Obviously, it will be closely monitored, but she has to recover from the surgery before her doctor will even consider giving her chemo, radiation, etc.

As always, we are hopeful that Wendi will be able to beat this terrible illness. If anyone can beat it, she can. She's a fighter, and she's determined to fight for her life until she doesn't have a breath left in her. However, the reality is that she has a rare form of uterine cancer. It has already shown itself to be aggressive and at least partially resistant to chemotherapy. She has a tough battle ahead of her; she would greatly appreciate any support, prayers, good thoughts, etc. you can give her. If you want to call her, she's not always awake, but you can call Scripps Memorial at 858-626-4123 and ask to be connected to the Intensive Care Unit (where she will be for at least a few more days). Please do not attempt to send gifts or flowers right now, since it is unlikely that the ICU will allow them.

Post-surgical complications

This is Brian with another update on Wendi. I spoke too soon about her not needing to go into the ICU. She experienced a few post-surgical complications... nothing life-threatening, but she had to be moved into the ICU because of them. The first complication was from the mix of medications that were being pumped into her after surgery; I think I counted half a dozen tubes going into her at one point, each with a different medication. Late Tuesday evening, she lost her ability to communicate coherently. Right now she is so drugged out that she is not completely conscious; she does not recognize or acknowledge us when we are in the room and she cannot talk to us. It is truly frightening to watch, but several doctors have assured me that such a reaction is not uncommon for someone who had such radical surgery. She seems to be doing better each day, and it's our hope and expectation that she will be able to join the rest of us in the conscious realm by this weekend.

The second complication was that one of her kidneys suffered a small amount of damage during the surgery. (That is a very common occurrence during such surgeries.) To fix the damage, her doctor ordered a procedure known as percutaneous nephrostomy. The procedure went well; there were no problems observed.

Wendi is out of surgery

This is Brian updating the blog for Wendi while she is in the hospital. She had the surgery on Sept. 15; it started around 8:15 a.m. and took about five hours to complete. About three hours later, she regained consciousness and was moved to a hospital bed. Her doctor mentioned that it was a very difficult surgery, due to the distention caused by the tumors. One of them had reached 10 cm in diameter, about the size of a small grapefruit. From an overall standpoint, the surgery went well. There was some initial anticipation that she might require a day or two in the ICU post-surgery, but that did not turn out to be necessary. She will be recovering for about a week or so in the hospital, then for another month or two at home.

The surgery did not remove every trace of cancer, and we were never misled into believing that it would. As soon as her doctor deems it appropriate, she will go back on chemotherapy, then radiation after that. The current plan is to give her four rounds of chemo (12 weeks total), then eight weeks of radiation after that. Of course, that is all subject to change at any time, depending on how she responds to the treatment.

FUTURE UPDATES....

Tomorrow is the big surgery day. Thanks to everyone for the calls, emails and encouragement.
I'm not really sure what to say at this point. I'm sure this is going to be tough, but I will get through it.
My husband will be taking over the blogs from here for a week or so...

MAY SOUND WEIRD BUT........

as much pain I will be in after the surgery, it sure will be better than the pressure I feel on my bladder currently!
Tomorrow, it will be the Jell-O diet! I can have strictly clear liquids. I really don't want any chicken/beef broth because it will give me heart burn. Hubby is going to the grocery store - also to get some Jell-O. I just hope hubby gets enough Jell-O for the 2 of us! The day will be like a Jell-O eating contest - we will see who finishes his/her portion first!

MORE PAIN, PRESSURE AND FATIGUE

I know for a fact that I would not have made it until the 29th. Just a few more days to go!
Along the way I've had people tell me that I am "brave," and an "inspiration." I'm not sure what that means when I'm relying on Dr Bahador to save my life. It is just another obstacle that I have to deal with at this time. I am enjoying some of the smaller things along the way.
Just a favorite story: One of the things happens to be an antique gadget that hubby bought for me during a trip to a mountain bed & breakfast. The place was modeled after the Victorian era full of antiques from that time also. The place was shutting down and we were some of the last guests to stay there. I happened upon the "gadget" called a stereocope. It is kind of like a view master from when I was a kid - except it has lenses and square picture cards that you put on the end of it. We also bought the cards as well. Some of them are old...from the turn of the previous century. Because I can't move around as much right now I get to fiddle around a little more. No, I am not bored or completely helpless. I am just enjoying what I can for the time being.
For me at least, enjoyment of life is a choice, no matter how trivial the activity may be or how much pain I'm going through. I'm taking life moment by moment right now, and yes there is some enjoyment along the way...

PRE-OPERATIVE VISIT

First of all, I am getting more fatigued as the days go on. I'm so HAPPY that the surgery date was moved up. I know I will be in pain after the surgery, but the end results will be worth it!
Today my mom took me to the hospital to have some pre-operative things done - blood & urine tests, chest X-ray, and EKG. That took all morning. I am so tired even though I was pushed around in a wheel chair (that had a hard seat and left me in more pain). I'm sleeping on the squishy air mattress tonight.
I have a lot of pre-surgery prep to do...such as taking potassium pills the night before, liquid-only diet the day before, etc.
My mom had brought an aerobed for me to sleep on after surgery when I am home. We had a discussion about that today. She is concerned that I will not be able to get up very easily due to the abdominal muscles being used. The mattress is the height of a couch and squishy. She said that she and my dad want to rent a hospital bed after I come home from surgery. She is concerned about the level of pain I might experience from getting up. It would be easier to get up from the hospital bed. We will bring the subject up with the coordinator at the hospital to see if it is necessary. I do have to say that my mom's offer is very generous. I think my insurance may cover it too.

SURGERY!!! TUESDAY SEPT 15

I have only 6 days until my surgery! Dr. Bahador managed to bump his schedule around. He said considering my daily life limitations currently, it was necessary to move it up from Sept 29.
He is performing a surgery that is much more complex than the total hysterectomies he typically does. My surgery will be 4-6 hrs long. I will have an incision from just below the sternum to about to the top of the pubic bone. He will be removing lymph nodes (where the torso meets abdomen, and upper abdomen), uterus, fallopian tubes, ovaries, etc. He will have to see what else is going on inside. The incisions will have to have what he referred to as "clear margins." In other words, he may take some healthy tissue along with the cancer to be sure he took out as much cancer.
A possible side effect of the surgery is a condition called "lyphedema." Because he is removing some of my lymph nodes my circulation will be affected. Depending on my reaction to the surgery I could be required to wear compression stockings for this condition on a long-term basis. The stockings provide support on the legs and prevent fluid from accumulating, thereby avoiding looking "puffy." I will be going to a "lyphedema clinic" a little while after the surgery for some education of the condition and preventive care instructions.
Tomorrow I will get my pre-operative tests - EKG, chest x-ray, blood tests. On the day of surgery I will check in at 6 a.m. and surgery is due to start at 8 a.m.
I also called my work supervisor today and advised that I will not be coming into work for a conference re: changes to my leave of absence. (This is before I found out about my surgery date). She is aware that it will be quite sometime before I will be in contact with her.
The immediate family is in the works to see how they can help with my care when I come home.
It is possible that I will have visits from a home health nurse after I get home.

Finally...sleep!

I was prescribed an aid to help me sleep. I managed to get a nap this afternoon. I expect to feel better within the next few days. Feeling better rested and staying off my feet more is helping deal with the pain. My doctor also advised on a change in my current pain medication routine.
My mom is going to be over tomorrow and bring an aerobed mattress. My plan is to stay off my feet as much as possible. I can stay downstairs by day (for now) - I'll have access to a restroom, kitchen & T.V. I won't have to move quite as far. I also plan to have plenty of pillows around me. If the pain gets to be too much, then I will stay downstairs until the surgery. Hubby understands that I can't help around the house as much as I have been previous to the pain escalating. Driving is out of the question. All we can do at this point is to make me as comfortable as possible. After speaking w/ Dr. Bahador late this afternoon and pain medication adjustments things seem to be starting to improve. I was able to sleep for about 4 hours. This evening I did manage to eat a little more for dinner than I have in the past few days. I think with less movement and a slight change in pain/sleep management I should be more comfortable for awhile.

Surgery? WHEN????

My M.D. doesn't have me scheduled for surgery until Sept 29. In the meantime, I'm stuck bed ridden during that time with great pain. I am so angry with him! He has his schedule so booked up that he can't even squeeze in an urgent case. I was told I could go to the ER to be admitted. However, he would end up doing the 4-6 hour surgery starting at 10 p.m. - which according to him would be dangerous due to the fact that he would be tired at the end of the day. I was also told that I could be admitted to the hospital for pain management. I really don't want to do that if I can help it. My hospital bill for a 3 week stay would be beyond staggering. I got my last hospital bill for the 4 1/2 days I was in last time. I will be bedridden and sleeping a lot to control the pain for at least the next several weeks.
My husband may take over this blog to let everyone know what is going on. I'm trying to stay off my feet as much as possible...

8/5/09 picture of me dressed up...

This is what I look like most of the time when out in public. It has been so roasty hot outside that I've ventured out with just a head scarf and a hat during the day. Typically I try to wear the wig in public places where I think the stares would be too much to take. I'm trying to look as presentable as possible. I think I look and feel better.

Good Times

Hubby's entire immediate family (spouse, girlfriend) drove from Redlands and Monterey to visit. I had a great time. I was able to see the new addition, too! Our townhouse barely could hold that large of a group! Dad B. took us to a nearby Greek restaurant. Again, I could only eat a small meal. Afterwards we went back to our townhouse. It was such a hot day. The best part of the visit was watching everybody start dozing off once the airconditioning was turned up and cold ice-cream bars were eaten. Thanks everyone!

Rest and fatigue...

This week I have been sleeping a lot more. It may be from some pain medication or the pain itself. I have to take several hours and lounge or sleep to help control the pain. I move really slow. My mom took me by the grocery store - and once again, I am riding the old people scooter...maybe to stand apart from the old people I should paint flames down the side of the scooter, and wear leather all over.
Hubby & I are trying to arrange to see some friends before I go to surgery. I won't be socializing very much after surgery.
Not much else to say right now. For once, having a quiet evening w/ hubby...

Change of plans....

I visited Dr Bahador today. I also did get a copy of the CT scan final report just in time for the appt (so did the medical office!).
After reading the report I was a little concerned by what it said - even though I know it requires a doctor to really interpret it.
During the dr's visit I was advised that the mass inside my uterus is indeed getting bigger. But what we are looking at is dead tissue being pushed against my pelvis (which explains the pain). The mass is getting bigger, but not necessarily by the live cancer. There is a strong possibility that there is fluid build up inside it. According to the doctor that although the blood test (CA125) that measures the presence of cancer cells w/in the body has reduced dramatically once since the first round of chemo, I had a "mixed result" to the chemo. My lymph nodes have shrunk dramatically. The uterine mass was affected only in the beginning. A few new nodules have appeared in the uterus though. But they are small enough to remove surgically...and yes, I will be in surgery w/in the next 3 weeks! And no more chemo until after the surgery. The CT scan was a very useful tool for the doctor after-all. (Waiting 6 hours on Sunday in Urgent Care was not fun!)
For now, the plan is that I will not be returning to work until after surgery. Hubby & I will be seeing the doctor on Wed for a more in depth discussion re: surgery.
If for some reason I have excessive bleeding or intolerable pain the doctor advised me to go to the ER for hospital admission. Surgery would then follow immediately. That is not the preferable route of care - preferably planned as scheduled.
I will be having a meeting or some type of discussion w/ HR and my bosses re: currently needing time off.

Scrambling to get records again...

Tues, Sept 1 - Well, once again family & hubby involved to be sure that I get the records together for the doctor's visit on Wed (tomorrow). I've been on the phone twice a day with the medical records department where I had my urgent care visit. Even though the doctor may order other tests, I still want him to have the report from my CT scan. It never ceases to amaze me how much you have to be your own advocate in the healthcare system. For example, I've been calling medical records for the past 2 days. Upon my inquiry as to the status of my CT report, I'll get a response of "it takes 3 days minimum for it to post." (Even then I can't be guaranteed that I will be able to get a copy in that short order). I called again this afternoon, explained my situation, and the keys to the kingdom opened the door....the clerk said she would call the transcription department and try to speed up the process. I am hoping to have that report in hand by tomorrow's appt.
As for today - a few concerned friends called to make sure I was okay because they did not hear from me for a few days. It was great to talk with them. Also I received a thoughtful care package - thanks cousin C & Fam! Hubby, Caring friends and family is what keeps things going...
I'll update tomorrow...