If you can't laugh, right?
I bought a couple of wigs last week. They're very cool. It seemed like a good idea at the time. Doesn't sound like a bad idea now. But as I look at them sitting on their fake heads in my room, a short cotton candy pink bob, long black hair with dark blue streaks, and shoulder length electric blue hair, I can't actually see myself feeling up to wearing them while being isolated, either in the hospital or at home. Maybe I'll be in a blue hair mood at some point during recovery, but who knows. I don't even wear a bra when I feel like crap - am I really going to feel like dealing with wig tape? Probably not.
So BF and I went to the fabric store the other night and picked out a bunch of great fabrics to make into headscarves. I got enough of one very cute flannel to make some pajama bottoms out of too. BF looked at me as I was showing him head scarves online and said "You know you're really going to look like a cancer patient in one of those, right?" I guess I won't be a part of the "but you don't look sick club anymore". It doesn't really change anything though. I'm sick either way.
This week has been especially difficult. My hands have been really bad and I think I have pneumonia. I had a CT in the ER on Saturday night, but it's impossible to tell if it's pneumonia or just what my lungs look like without comparing two CTs side-by-side. So I'm trying to get in to see me PCP, but you'd think I was trying to make an appointment for something fun because I can't even get through to the receptionist.
All right, I'd better go get the little man out of his jammies and away from the TV so that he can go to my mom's to be spoiled and I can go downtown to be prodded.
I'm getting a stem cell transplant.
I couldn't be happier. It's like being brought back from the dead.
I talked to the oncologist yesterday and she's all for it. I'm so excited I can hardly stand it.
The first step is to safe guard my fertility. On Monday, I'm going to see a reproductive endocrinologist that specializes in onco-fertility patients. I'm going to have two procedures done. The first will be a cycle that will stimulate my ovaries to mature a number of eggs that will then be retrieved transvaginally. After that, they'll be fertilized with BF's sperm and after a few days of maturation, they will be frozen with liquid nitrogen. All of this would normally be out of our price range, but with the help of an excellent non-profit called Fertile Hope we'll have to pay less than half of the usual price.
After the embryo freezing, I'm going to have one of my ovaries removed and 20% of the tissue will be donated to the University of Pennsylvania for research into the in vitro maturation of eggs. The other 80% will also be frozen and saved for my use in the future. The ovarian tissue cryopreservation will be done as part of a clinical trial and it won't cost me anything so I thought, "why not?" The technology to successfully mature eggs from frozen tissue hasn't been perfected, so I wouldn't rely on just that option for any future kids I'll want to have, but I'd like to help science move forward and it will serve as a possibility for a backup option if frozen embryo transfer fails for some reason. I'm also going to have a tubal ligation while they're removing the ovary. I figure that I'm never going to be able to get pregnant naturally anyway, but in case the chemo doesn't make me totally sterile I don't want to get pregnant accidentally. Even if all of the eggs aren't destroyed, there could be chromosomal damage and I wouldn't want to risk a baby with major birth defects.
So after all of that is done, which is dependent on a number of unpredictable hormonal factors, we'll go ahead with the stem cell transplant.
I'll be admitted to Thomas Jefferson University Hospital for four days. While in-patient I'll have a central venous catheter implanted into my subclavian vein and a PICC line implanted into one of the large veins in my right upper arm. The catheter will be used when they remove the stem cells from my blood during aphaeresis and the PICC line will be used to administer the chemotherapy and other IV drugs and fluids throughout the process. After placement of the lines, I will receive a dose of chemotherapy and an injection of G-CSF to stimulate my bone marrow to produce more cells and to release them into my bloodstream.
For a week after that my blood counts will drop, but then they will rise again and once they get to the right range, the doctors will bring me back in for a process called aphaeresis. The aphaeresis will last about four hours. I'll be hooked up to a machine similar to a dialysis machine, but instead of removing toxins from my blood it will remove the stem cells, which will then be packed and frozen for storage until they're needed.
After that they give me a while to rebuild my strength. Once I'm back to relative health they do what they call high dose immunosuppressive therapy. Cytoxan and lymphocyte immune globulin will be administered over several days and my immune system will be totally eradicated. At that point I will be highly susceptible to death from infection as I won't be able to fight anything off; I'll be held in complete isolation in order to minimize my exposure. This is the point where they transfuse me with my stored stem cells in a procedure referred to a stem cell rescue as they are literally rescuing you from certain death.
Once my stem cells have been transfused we wait. They have to engraft themselves in my bones and start creating new bone marrow. Then, over the next several weeks to months, my immune system will gradually rebuild itself. This period entails a lot of monitoring for infection, blood transfusions, and treatment with antibiotics and IV immunoglobulin.
And that's it. Worst case scenario is obviously that I would die. There could also be other serious complications that could prolong my recovery. In addition to that, there's also the possibility that it just won't work and my autoimmune diseases will just continue on their current course.
But I could be cured. My lungs could improve. And I found out yesterday that I might even be able to carry a child of my own, something I hadn't even dreamed of.
This could be everything I've been hoping and dreaming of. This could give me another chance at having a full uninhibited life.
I can't wait to get started!
That always sounds so blunt, but I can't come up with another way to say it that I don't hate. I'm not a fan of euphemisms, they certainly don't cushion the message, I'm not really sure what they're really good for.
She had a peaceful death, surrounded by people who loved her. We had her moved into the hospice on Friday afternoon and they took very good care of both her and us. It was the best place we could've hoped for for her final days. It's an old refurbished Victorian mansion in the Chestnut Hill section of Philadelphia. Surrounded by trees and gardens, they're really made it feel as far removed from a hospital or nursing home environment as they could. The architecture is beautiful. The furniture and decor all makes you feel at home. The dining room has lovely tables and real linens. There isn't even an elevator, but a beautiful spiral staircase that goes up to the third floor with a chair lift along the rail. The nursing staff is incredible at a four to one nurse to patient ratio. They have the assistance of a big pool of volunteers as well. Everyone there is friendly and helpful. They have so much experience with death and dying that they really make you feel totally at ease and give you the opportunity to focus solely on your loved one. It was a much nicer place to be, but I don't think she was conscious at all.
Her sister and brother-in-law came up on Friday as well. They've been up from North Carolina several times since her first hospitalization. It's been great for all of us to have them here. As BF is an only child, the responsibility for arranging his mother's care has fallen on us and it was really helpful to have some more family around to give him input and reinforce that he was making the right decisions about his mom's care. We also had the little man on Sunday and as we all (me, BF, and his ex wife) felt that it would be best if the little guy wasn't there to see his grandma like that, it was good that BF's aunt and her husband could go over to the hospice with BF to be there when his mom died.
The three of them came home Sunday afternoon after she died. BF grilled up some steaks and we all had a nice dinner and sat around talking and watching TV for the evening. They left early the next morning for the ten hour drive home. We've been keeping pretty busy since then. She chose to be cremated without a viewing, so there wasn't much to take care of there and all of her family is out of state and not planning on coming in for a service, so we're not planning on really having one. BF really just feels that a formal memorial service wouldn't be what she wanted, so we've just been seeing everyone we love and talking and remembering.
It's so bizarre that she's gone. She and I were just getting close. I was so looking forward to having her as a mother-in-law and as a grandmother to my kids. I'm really going to miss her so much. She had so much life ahead of her, so much living left to do. Sixty-one is far too young to die.
What a day. A good day, of a sort, but a really difficult emotional day.
We've decided that a residential hospice is the right place for BF's mom.
After that great day she had two weeks ago, she's returned to the toxic, altered state that she was in previously, only now, her physical health has deteriorated even further. She was able to walk once she was helped to her feet then, but now she's completely wheelchair bound and BF can't even get her out of the wheel chair and into the bed. She's been at the skilled nursing facility where they've been attempting to get her some physical therapy for almost two weeks now and she hasn't made any progress, she's just getting worse. She's still refusing food, occasionally she'll take some juice, and her mental status has gone steeply down hill in just the last few days.
Last night BF talked to the doctor at the facility where she's staying. The doctor was basically calling him to let him know that his mother is failing to make any progress and because of that she can't stay at that facility any longer; there's no point to rehab if you're not going to make any progress and insurance won't pay for it. So this morning BF and I met with a nurse and a social worker from a local residential hospice.
It was one of the most difficult conversations I've ever had to have.
They tell you that you shouldn't think of it as giving up. That it's just changing our expectations of what the future holds, focusing on giving her the most comfortable, most peaceful final weeks that we can rather than prolonging treatment and extending what has become a painful, hopeless time. Part of me is able to see it that way. After all, it's what I would want for myself or my own parents. Another part of me feels like we're closing the book and that's heart-wrenching.
The hospice itself is a beautiful place. It's an old Victorian mansion that has been converted into a facility that houses up to eighteen patients in a very home like atmosphere. The living room is comfortably furnished, there is a nice big dining room, and several lounges. It doesn't feel the least bit institutional, it feels more like a boarding house. There is a four to one patient to nurse ratio around the clock and they have a doctor on staff as well. They have beautiful gardens and it's located in a nice, wooded area of Philadelphia. I know that this is the right thing to do for her, it's just also so very final.
By entering hospice, we are deciding that she will no longer receive blood transfusions, chemotherapy, or intravenous fluids. In fact she'll receive no care that aims to make her better at all - no antibiotics, no CPR, nothing. She'll die. The only medical care that they'll provide her will be with the aim of making her death as pain free, both physically and emotionally as possible. The provide antidepressants, general maintenance drugs, such as vitamin and mineral supplements, appetite stimulants if she's willing to try them, and morphine in various forms. The rest of her care will be in the form of counseling, music and art therapy, help with her personal hygiene, and any other support she wants or will accept. They will make her progress through the dying process and our part in that process as positive of an experience as it can possibly be.
Somehow it really hit home for me today. Whether it was the finality of the decision, seeing her struggle to get comfortable as she sat in her wheelchair, completely unable to reposition herself, seeing the nurse and social worker try to pull something out of her and getting nothing, visiting the hospice and seeing so many people so close to death, or all of the above, I'm not really sure, but by the time we started driving home I felt like I had been pummeled in the gut by someone quite large.
I tend to take a while to have things really settle in, to fully hit home. Always have. When my best friend died and the news came out of left field, I didn’t cry about it until I went to work the following morning and someone tried to talk to me about something that was just so normal that it seemed foreign. This month has felt very much like that first day. There have been so many ups and downs and uncertainties as to what lay ahead up until now that I don't even know if I could have felt the full impact of the blow. I was so unsure of how hard the impact really would be, of what I was really dealing with, of how to wrap my head around it. Today made the enormity of the impact totally clear and devastatingly real. I still don’t know how to react. I wanted to cry in the car coming home, but I want to be the one to lend support in this situation, I don’t want to be the one losing it and needing him to continue to keep it together in order to comfort me. There will be plenty of time for tears, now it no time to go breaking down. And I’m not a good crier anyway. After the first ten seconds or so I start thinking about how useless an act it is and how stupid I feel. I know I shouldn’t, that everyone cries and everyone needs to, but I’m also a bit of a control freak, especially when it comes to having a firm grip on my emotions.
Then to add to the pressure of the day, we were uncertain as to whether or not we could afford for her to stay at the hospice. In addition to their fees for the care itself, which insurance companies cover, there is an additional and not insubstantial daily rate for room and board. We could cover it for a time, but not for long, and the last thing we'd want would be for her to have to move out in the last days or weeks of her life, or to have to go into massive amounts of debt to cover her end of life expenses, after all, we still have funerary expenses to pay for and any other out of pocket expenses, such as co-pays and durable medical equipment. So our silver lining today was a call from the business director at the hospice telling us that not only had our fabulous social worker already arranged all of the paperwork necessary for BF's mom's admittance to the facility, but that her health insurance will cover her stay in full since she is under sixty-five and that all of that paper work had also been taken care of.
Now we have a day or two of down time until she is released from the rehab facility, at which time she will be taken directly to the hospice house. They have a shared room for her to stay in right now, but as soon as one opens up, she's going to be moved into a private room where we and the other people that loved her and have been touched by her life can share in her final days.
It was an awful day and a positive step forward at the same time. We've been released from the uncertainty of the last month and a half and now will enter a less hopeful, but more solemn, peaceful, and certain stage in this grieving process.
It was an especially good day to meet with my new therapist for the first time. She has specialized experience in dealing with chronic illness and grieving, so it was a big relief to see her shortly after we came home from the hospice. I’m hopeful that she’ll be able to help me to navigate this difficult time and the difficult times that will be coming over the next few months.
From all of the new tests, we should have a good handle on where my pressures are and how stable the disease process is. If it's still unstable, we may need to switch from the ambrisentan and sildenafil that I'm now on to a either Flolan or Ventavis, drugs that are delivered by an infusion pump, infusing through a semi-permanent venous catheter implanted in my chest. Hopefully we won't have to go there though. I'm not really looking forward to taking care of a port or having to deal with a 24-hour a day infusion. Though I'll have to get a port for the chemo anyway, so it's not
At the same time I'm going to see a hematology-oncology doctor and head of the transplant team at Jefferson. The pulmonologist sees no reason that we can't start the chemotherapy before we get the pressures under control to see how well I tolerate it. If I do tolerate the chemo well and we can get the hypertension under control, then there doesn't seem to be any reason that we can't go ahead and do the transplant. It was great to talk to the doctor yesterday. She very clearly understood why I would want to go for transplant rather than just the high dose chemo and while we couldn't make that decision before she has some more empirical data about where things stand, I'm confident that we'll get there.
I'm really excited. This was the first time that I got the indication that this was not only a definite possibility for treatment, but that if this is what I want then we can probably make it happen. It was also nice to talk to someone who really seemed to be familiar with all sides of the argument here. I talk to so many doctors that are very familiar with one of my diseases, but this one was familiar with all of them and has treated other people in very similar situations. She understands that when you're living with a prograssive, eventually terminal disease, that you're much more willing to risk it all for the glimmer of a cure. It was good to talk to her about how difficult it is to be able to back up these treatments with multiple studies because of the numerous disease process variations and how so many of us are willing to be the test subjects for the hope of a cure. Five years ago, this diagnosis would've elicited a shrug from most docs. All of the treatments are new. All of them are experimental. No one has enough experience with any one treatment for this combination of disorders to do any more than make an educated guess about the outcome. But that's comforting in many ways. None of the docs that I'm seeing act like gods. None of them are afraid to say "I don't know" or that they'l have to sit down with their colleagues and talk it out. I feel much more comfortable with other people that can admit that they're often fumbling around in the dark too.
And as it turns out, I still have a life that doesn't involve any medical terms. Last night I sat on the phone for a couple hours with a good friend of mine. She and I have been incredibly close since we were in junior high school. We were inseparable throughout our teens. About six years ago she went away to college in Boston into an intensive five-year psychology program at Northeastern University. We haven't seen much of each other since then. She finished her bachelor's last year and has moved in to a nurse practitioner master's program at Columbia University. I'm thrilled for her success, but I do miss her a lot. So it was really good to get to chat for a while. It's nice how effortlessly we always slip back into the old "us" after not speaking for months at a time. It's good to really feel that we'll be friends for our whole lives, no matter where they take us.
After she and I got off the phone, BF and I went out to dinner and then to the midnight showing of Watchmen with my brother and a bunch of his college friends. My brother isn't a college student, but his best friend goes to school at one of the local universities and he's always there. He eats in the commons. He hangs out in the lounge. He uses the gym. It's like the whole college experience without learning anything. It was nice to go out with a bunch of kids and sit in a movie theater until three in the morning again and the movie was awesome.
We've been doing a lot lately. Going out shopping, to the movies, to dinner. It's really refreshing. It's amazing how much difference a change of scenery has made in how I feel. Last week I was able to go food shopping on my own, something I haven't done in a year or more. I've been cooking, cleaning, moving, and going out a whole lot more than I had been. It's a nice boost. I'm still having bad days. I was exhausted after going to the pulmonologist yesterday and I've been having intermittent bad join pain in my hands, shoulders, hips, and knees. I've been having more good days though. I don't know that anything has changed medically, but I'm in a better place, a better situation, and really, when you have to do something sometimes it just happens. Not everyday, but some, and that's certainly better than none.